I have been advised to take reclast and I have the same concern about it in my body for a year and what if I get sick, how do they treat the side effects or get the stuff out of my body? I just came off of Forteo for 2 years and there wasn't much improvement. I am 65. I currently developed some kind of a headache and will have an MRI and I put off the reclast injection. I want to try something else. I don't feel good about this at all. I sympathize with everyone making this decision. There has to be something better. I can't take fosamax, etc. I got an ulcer and think it was from that stuff. Good Luck everyone.
did you have any improvement at all with forteo? did you have any side effects.?
You can't get relast out of your body,you would be treated for the side effects and
probably have to deal with it for the year. I am only 55 and healthy, active and look
about 40 according to everyone and my bone density is very low. I have to decide what
action to take. I take vitamins and exercise. I think it's all still experimental and we are
being used for treatment. THere has to be another way. Please responsed.
You should really talk to your Doctor about your concerns. Reclast is a bisphosphonate just like Fosamax and Actonel and Boniva. Reclast not detectable in the blood after 24 hours. 61% of the Reclast dose goes to your bones. Bisphosphonates stay in your bones for a long time. For example the terminal half life of fosamax is 10.5 years. That means that the amount of each fosamax pill that gets to your bones will reduce in size by 1/2 every 10.5 years. SO the first fosamax pill that you ever take will be in your bones to some degree until you die. That is just how bisphosphonates work. Reclast side effects are very similar to fosanmax side effects. The Reclast has an acute phase reaction, or post dose syndrome. What that means is that within 2 to 3 days of the infusion about 15% of people in the clinical trials had flu-like symptoms. Aches, and pains, generally describes as feeling under the weather. These symtoms usually lasted no longer than 2 or 3 days. My wife's aunt received Reclast and felt "icky" for 1 day. The day following the infusion. She felt well enough to go to work and felt perfect the day after.
* In year 2 of the clinical trials the acuste phase reaction was down to 2% of the people, and in year three it was down to 1%.
My Doctor has been trying to get me on reclast and after viewing everyone's report I've decided not to do it. I take Strontium Bone Strengthener & my bone density have improved. I also have been taking calcium with magnesium, vit. d-3 andvit.k. which are supposed to work together. I amgoing to keep on what i'm doing. i kno9w vitamins are expensive, but I went through hell from fosamax with a huge uilcer for 6 months before i changed doctors & was told that I had a huge ulcer which took years to overcome it.
I TOOK THIS MEDICATION 1 YEAR AGO AND RECOMMEND IT HIGHLY! I HAD FLU LIKE SYMPTOMS FOR ABOUT 3 DAYS BUT THEY WERE NOT THAT BAD. THAT'S THE ONLY TIME I HAVE HAD ANY SYMPTOMS AT ALL FROM THIS INJECTION. VERY SMALL IV USED AND TOOK ABOUT 15 MINUTES TO COMPLETE. I JUST TOOK MY SECOND INJECTION TODAY AND FEEL FINE. IF I HAVE FLU SYMPTOMS FOR A COUPLE OF DAYS THE RELIEF I FEEL IN MY UPPER BACK AND SPINE IS WELL WORTH A COUPLE OF DAYS OF VERY MILD FLU SYMPTOMS. THESE ARE THE RESULTS I EXPERIENCED LAST YEAR AND I ASSUME IT WILL BE THE SAME THIS TIME.
Started Actonel at age 50. Had esophageal spasms for a short time. After 6 years bone mass decreased. Switched to Boniva. No side effects. After one year still had 6% bone loss. Had reclast infusion. Took tylenol to counteract possible flu like symtoms. I had no symptoms. Will get follow up bone scan in one year. Hopefully it helps.
I appreciate your knowledge. You appear to be in the medical profession and have explained this medication well. I took my first Reclast dose this past Monday and so far have exhibited no symptoms. I had the two glasses of water and two Tylenol before my tx as prescribed by my doctor. Piece of cake.
I am an oncology nurse who works in an infusion center and give reclast annually as well. We premedicate our patients with tylenol and have them drink extra fluids (so that it is flushed through the kidneys) the day of the infusion. We instruct them to take tylenol three times a day for 72 hours to counteract any flu like symptoms. Our patients do wonderfully and have been back for the past few years for their infusion. Reclast does not build new bone but it does block further bone loss.
Just one clarification. When you say Reclast does not build bone you are mistaken. In Clinical trials 95% of Patients increased their bone mineral density in the spine, and 87% of patients increased their bone mineral density in the hip.
In everyone's body, their is a balance between the Osteoclasts (Break bone Down) and the Osteoblasts (Build bone). We need both processes. The bone "turns over" all the time. The little microfractures and other weak spots need to be rebuilt. As we age, or sometimes for other reasons, the Osteoblasts (Bone Builders) slow down their production. The Osteoclasts (Break down Bone) continue to work at the same rate, causing the balance to get out of whack. This causes us to lose Bone density.
Bisphosphonates work by inhibiting, or slowing down the Osteoclasts (Break down bone). The effect is increased bone density. Remember, if you don't take the orals like fosamax or actonel exactly the way you should, everytime, they will not work. Reclast is the only one that has almost automatic results. We can't screw up the treatment...by taking it only some of the time...or by taking it with well water...or calcium...or with food...ect.
Hi, now what is strontiun bone strengther and do you buy it at the health food stores only? my dr wants me to take ( reclast ) but i am just sure since i am not able to take actonel or the others to well without getting sick i am not to crazy on modern medicine because i end up sick 75% of the time so please let me know thanks norma
I posted earlier about a friend having bad side effects from taking reclasp. She
was having them even 5 weeks afterwards and getting no luck from the drug
company or her doctor. But her doctor didn't realize the extent of her side effects and is now helping her much more so, saying she has an allergic reaction.
Hi.Well I started out on Fosamax, too painful for me, went to Boniva again on the couch in pain. Stoped both, Had anotehr MRI & because my Osteoporosis is bad I was told about Reclast. I went in for my first treatment on the 10 of November. The paperwork was what took the longest. The processof putting the reclast in took as others stated maybe 15 minutes. I felt fine coming out of the hospital, until I got to the car then felt a little quizzy, Got home & was very sick, vomiting,dizzzy,diahera,aches & pains.....this is day 3 & still fell funky. But I am hoping it will be better tomorrow. Still havea headache but not a migrane like I had.
Hi I just had a reclast infusion on Nov. 16th, this the 30th and i hardly have any use of my hands. I would not advise this drug, the flu like symptoms they talk about are absolutely nothing like the flu...100 times worse. I had every symptom on the paper that there is, now this thing with my hands is not good. I cant even pick up a cup. The dr told me it was the medication being absorbed into my bones. My thigh bone is now hurting and I am afraid it will affect my walking. She said if I am not better in a week to go to a orthopedic dr...WTF???? Never ever again..this stuff is poison. They have many law suits against them...just becareful....im so sorry i listened to my dr...
I HAVE BEEN TAKING ACLASTA FOR ONE AND QUARTER YEARS.
I HAVE HAD MORE RESPIRATORY INFECTIONS THAN BEFORE I TOOK IT AND WAS ON FOSIMAX (ONCE A WEEK). I AM ALSO CONCERNED ABOUT WHAT ONE CAN DO
IF YOU HAVE A REALLY BAD SIDE EFFECT DURING THE YEAR. WITH THE ONCE A WEEK PILL YOU COULD JUST STOP IT.
DOES ANYONE HAVE AN ANSWER?.
BY THE WAY AFTER TAKING A BONE SCAN 15 MONTHS AFTER TAKING THE ACLASTA THERE IS A MARGINAL IMPROVEMENT. I PERSONALLY CONSIDER THIS
A SUCCESS BECAUSE BEFOREHAND THERE WAS A DOWNWARD TREND.
LOOK FORWARD TO READERS INPUT.
HAVE A GOOD DAY
Hi Patricia,
My wife is in the same boat you are. Her endocrinologist also pushed either the Forteo or Reclast for her osteoporosis.
She was on Fosamax/Actonel for the past 10 years and, unfortunately, regular monitoring was not done. The last time she had a Dexa scan, it showed absolutely no improvement whatsoever. So, taking either drug was a total waste of time and money.
Like you, we've also gone the naturopathic route. I would also suggest that you consider taking a high-quality probiotic to ensure that your absorption of the supplements is maximized. You may also wish to do some research on silicon and boron as well.
Lastly, we've started a diet whereby the foods may contribute to an alkalination of the body's pH. I realize that most physicians dismiss this concept. However, what is there to lose by giving it a go?
[The idea is to reduce the acidity of the body's pH. This is different from the pH of your stomach since acid is required in the breakdown of proteins, etc in foods such as steaks, etc.]
Also, I would highly suggest walk therapy while carrying some light weights in order to put some stress on the skeletal bones.
Lastly, be sure to monitor your progress by having your physician order up bone density tests at least once a year. Without setting up a base-line measure, you won't be able to determine whether your actions are beneficial or not.
Good luck on increasing your bone density!
I have been on the Forteo Treatment for almost 2 years, and my bone density shows no improvement. (ended Feb.08)
Now the Doctor has put me on Actonel weekly. I take liquid calcium daily as well.
The Doctor is recommending I get REclast IV treatment.
How safe can that be, since Forteo was only allowed for a period no more than 24 months, which I have just completed.
Hi, I have been taking the bone stregthener for a year or so. I went for a bone density test and found that my bones have improved in density. I have read many a health report that says that Strontium helps your bones better than anything. I do also take calcium, vitamin k, and magnesium that all work together too.
Strontium is a prescription drug that is used in Europe for osteo. According to my doctor..., we cannot get it in US. If we could he says he would love to be prescribing it. Per this doctor, any Strontium product you obtain in US is not anything like the one used in other countries and will do nothing for your bones. If anyone has better info I would love to know as I'm taking Actonel...
Hi Fred that's fantastic news... I hope your wife continues to improve with the Strontium Citrate and has wonderful dxa scores on the next time around. Some say you need to subtract 10% of the score from dxa when taking strontium, due to the over-estimation strontium causes, but even if that is true-not sure-she's doing fantastically well!! Strontium is heavier than calcium so it's suppose to alter the scan's score, but regardless of that, this is stupendous news. Here's a link on the over-estimation of dxa with strontium if you'd like to read it, but please don't let it deter you or her, since she's still doing so very well. 
Continued good luck...
Last week, I had my first infusion of Reclast. It took 15-20 minutes and I had no adverse effects. I have been unable to tolerate Fosamax and Actonel in the past due to GERD. I would recommend that women ask their physicians about Reclast. And, the best part is that I do not have another infusion for a year!!!!!
I'm glad you had no adverse effects so far. The only thing that concerns me is that if there is ever a time when there is a need for dental surgery, (ie: root canal), I'll have to wait a year before the drug (reclast) gets out of my body. My dentist doesn't like this drug because it has problems with ONJ (osteo-necrosis of the jaw). The drug requires an oral exam by a dentist before getting the infusion (this is in the package insert). I'm interested to see how you are responding to this medicine.
"The only thing that concerns me is that if there is ever a time when there is a need for dental surgery, (ie: root canal), I'll have to wait a year before the drug (reclast) gets out of my body"
The problem is, it doesn't get out of your body in a year. Read above the post about how long this class of drugs stays in you. You may wait a year for dental surgery, but, you will still have the risk of bone necrosis.
A few years ago I began taking Fosamax. I did well on it for about 6 months, then, without warning one evening I had an esophageal spasm that shut down my air way for about a minute and a half. I was alone at home at the time and thinking that of all the daredevil stunts I've pulled in my lifetime THIS (?) was going to kill me. A certain peace took over, I remember wetting myself unto the kitchen floor. Still trying to breathe, just a touch of air suddenly slipped thru my lips and had to fight back an irresistable urge to swallow (typical esophageal spasm). It took about ten minutes of managing to take in TINY sips of air before the spasm subsided. My Doc and I attributed this to the Fosamax which I stopped taking that immediately. About two weeks later, another spasm while I was driving my car. Much weaker spasm this time, but, still had difficulty getting air and fighting a swallow urge (which I knew would shut my airway permanently this time) I got to the side of the road and let it pass, finally.
There is no way in you-know-where I would ever take a biphosphate again no matter how bad my osteoporosis got--and its pretty bad right now at the age of 55. I can't take replacement estrogens, the other course recommended for thin bones, but, I have had some success with salmon calcitonin nasal spray, lotsa walking/jogging, modest sunlight and calcium, vit D and green leafy vegetables. I've been on the calcitonin now for about 6 months, feel great (it has the added benefit of actually decreasing bone pain and is sometimes prescribed for that alone) time will tell if it actually helps. It is not recomended for hip/wrist strengthening but does seem to be helping my spine, and the only side effect I've ever heard about it is that it can, as its a nasal spray, sometimes cause a sore throat. I figured out how to get around that too---don't "sniff" the spray in, just spray it in. If its starts to drip out, pinch your nose to keep it is and allow it to just absorb thru the nasal mucosa like its supposed to do.
Keep in mind Calcitonin, Evista, and Forteo have not been shown to reduce hip fractures. That is the number one reason Doctors treat Osteoporosis. The number one treatment is a bisphosphonate. The risk of experiencing a hip fracture is greater than the combined risk of Breast Cancer, Uterine Cancer, and Cervical Cancer. The death rate of patients who experience a hip fracture is 15-25% in the first year after their hip fracture. (That is higher than the dealth rate for breast cancer) 50% of patients with a hip fracture never leave the nursing home. If I was a woman being treated for Osteoporosis, I would concentrate on the protecting my hips first. Only Bisphosphonates have been proven to reduce hip fractures. Fosamax, Actonel, and Reclast.- (Not Boniva)
Hi Bill,
As I peruse this blog site, your responses appear to be the best researched and substantiated---thanks for all the information you provide. I am trying to learn if there is a paradigm or a formal recommendation made by an authoritative group/agency (ie NOF, CDC, ACOG, AMA, ACP, AAFP, etc.) regarding to whom and when to offer intravenous rather than oral bisphosphanate therapy. Do you think it is only justified when an oral formulation has been tried and failed either due to ineffectiveness or intolerance, or is convenience a legitimate consideration? And any insight into how the insurance companies, including Medicare, view the use of the IV meds? I really appreciate your help.
-steve-
Reclast is indicated for 1st line use by the FDA. Medicare does not require a patient to fail or have a trial of an oral bisphosphonate. In fact around 75% of the health plans in the Country feel the same way. In some areas of the Country the health plans require an oral trial unless the patient has a medical condition that causes oral bisphosphonate use to be contraindicated. My feeling is use bisphosphontes whenever possible. If fosamax works stick with it. I feel the same for actonel. They are both good products and they have plenty of studies that prove they are safe and effective. The reason a drug like Reclast even makes it to market with 2 great drugs in the same class already established is that there is a vast majority of people suppossedly on the oral bisphosphonates the can't /won't/ forget to/ take their pills.
Studies have shown that only 45% of patients given oral bisphosphonates are still taking their pills after one year.
Patients stop for a number of reasons. Cost- paying another co-pay for something that in the early stages has no symptoms... When people try to cut back one of their prescription meds...they usually stay on heart, blood, pain, ...ect. Bone medicine usually is one of the first to be dropped.
Patients also stop because the oral bisphosphonate bothers them when they take it. Some people discontinue because they don't want to delay their morning coffee or even be bothered to follow the oral bisphosphonate admin directions.
Lets face it, in this country everything has got to be quicker and easier.
Taking an oral bisphosphonate is not the easiest pill to take correctly and to stick with. In my opinion it is more difficult to remember to take a pill you only take once a week or month. Lets say you put in on your calander and take it every week on schedule...are you taking it correctly? IT must be the first thing you put in your mouth in the morning followed by a glass of water (8oz.) It better not be well water or some mineral waters like Dasani. Less than one percent of an oral bisphosphonate survives the digestion process and makes it to the bones; if you ingest certain minerals like magnesium in your water, what's left of your oral bisphosphone will attach to those minerals and be flushed from your body. That is the same reason you can't take your calcium supplement with your oral bisphosphonate.
There are a lot of little things that can screw up effective treatment with an oral bisphosphonate. Effective treatment with an oral can work, but the patient has to receive this info. In clinical trials the responder rates for Fosamax were almost identical to those of Reclast. In clinical practice, fosamax can't claim half the efficacy as in their trials. IT's not the drugs fault. Reclast, on the other hand, should have the exact same results as in their clinical trials. The only wild card is the Vit D3 and Calcium. That is taken and monitored in every Osteoporosis trial and will have an effect on patient outcomes if they are not taken with any of the treatments.
One other reason for switching to the IV would include the cost. It is billed as a procedure, so it is not tiered like other drugs. You can have major medical insurance with no prescription coverage and still get this drug. The average Co pay is between $17 and $27. If you had to pay cash for it it is around $1250 for the drug and the IV procedure itself. That costs arounf $100-$200 less than Actonel for a year. If you just talk co-pays Actonel and Boniva are likely to cost between $300-$600 per year in co-pays. I would rather see someone switched to a 15 minute infusion to save money than stop taking their osteoporosis treatment.
I haven't read any specific recommendations from any of the organizations. That being said I think the organizations you are referencing usually are conservative and would recommend having an oral trial first before going to an IV drug. I read the NOF Osteoporosis treatment guidelines and they didn't specify. Neither did the American College of Physicians in one of last years Annuls of Internal Medicine.
Bill,
I appreciate your information as it is helping me make a decision regarding a recommendation by my doctor to try Reclast. Once correction, however. I am disabled on receive medicare. I've been told I will pay approximately $240 co-insurance for the infusion. While this is still much less expensive than the co-pay for monthly Actonel. It is not the $17-$25 you mentioned.
Just wanted to clarify.
Penny,
Thanks for that info. I did some more research and if you have straight medicare they will reimburse the office or hospital at 80%, leaving $240-$250 for the patient to pay. However 95% of people with medicare have a secondary or supplemental insurance...this insurance picks up most of the $240 leaving the co-pay at around $25. (even Medicaid)
Thanks, Bill. I know that's true. Unfortunately, that's generally for people who are on Medicare due to age. If you are on SSDI and receive Medicare, supplemental insurance is rarely available and what is available is exorbitant--I'm assuming this is because it's fairly clear that if you are on disability you are not a good insurance risk, generally speaking. I have a Medicare Advantage plan through Blue Cross and it is still 80/20 for the cost of Reclast. Again, it's still much less expensive than the weekly medications like Actonel and is not the biggest issue for me. My bigger concern is what Johns Hopkins has to say about the increased risk for atrial fibrilation. I guess the fact is there really isn't a good answer here. If you have osteoporosis you have to do something, but the options are not great. Reclast sounds really good in theory, but I am fearful, as many others have mentioned, about a drug that can be effective for a year. I know that Fosamax and Actonel also stay in your system for a very long time, but Reclast once/year seems scarier. That being said, I cannot tolerate Fosamax (joint and bone pain) and Actonel destroys my digestive tract. Given what you experienced with your mom, I know you would encourgage anyone to take a medication, but it's not an easy choice.
Thanks for your responsiveness.
Dear Bill: I too figured you for a Reclast "drug co" salesman! I was pushed into Fosamax and Actonel (resulting in 3 years later still having esophagal issues and swallowing has not been as bad but it has taken 3 years getting off the drug to swallow w/o choking on food, voice changes, cannot sing etc) After a life of concientously and religiously avoiding drugs (60's girl Boston and still said no, to that and drinking and smoking) and all of the typical stuff, I have great skin and look for all the world due to walking and great nutrition to be half my 62 years! YET inside due to the Fosamax I have had the esophagal, now the seemingly increased "attack" against my small frame, my hips kill me, and I am now seeing my arthritis doc again this week for a poss. Reclast injection WHICH I FEAR due to the fact that I got worse on the ingredients in Fosamax and Actonel. I seem to worsen daily and the doc is worried I might have a food or vitamin absoroption issue as NONE of the calcium or little seems to be getting to my bones. I even walk in winter in CO. I live alone and am scared to death that I fall. Taking a serious drug injected into you? nothing that we should consider lightly. I never will take a prescr drug again, Fosamax nearly ruined my life. I now have osteo in my hip and in my ribs making it painful to breathe. Mom died in 05 and had lost 5 inches in height, so yes, this is inherited. Neither one of us were devil may care about our health. I am terrified to give up my pretty home and pets to go lie down in a nursing home from which I will not emerge. Statistically, I know I will die of this and that thing called TRUST we have in "drug co" and the docs we see? Not happening...they rec'md drugs that are not well tested. WE are the guinea pigs.
Hi Sandra, welcome...I would check with one of the manufacturers of these drugs and ask, if your Dr. doesn't know the answer. Once you have gastric bypass, it can make taking these drugs difficult, but since I'm not sure I would contact both your Dr. and the manufacturer to be safe.
Do you have any trouble taking the supplements, like calcium, vitamin D etc? You'll need to take those and do weight bearing exercise, but check to see if the supplements cause any problems with absorption as well.
Good luck, if I can find out more I post back here.
Yes...I am on 2000 mg vit D because it was VERY low and 1200 calcium T score on spine is -4 and hip -2.3. Was told to start Boniva right away but am afraid of ulcers with the gastic bypass. My spine surgeon refered me to a rheumatologist. Think I will wait to take Boniva till I see her. Thanks for replying so quickly!
I received the infusion of Reclast in October, 2007. In a few days, I started having severe bone, muscle, and joint pain. This has continued to this day, June 13, 2008.
The symptoms were extreme pain in the hips and back at first, with pain in the hip joint when walking. I walk 2 miles a day, and some days were worse than others. On getting out of bed in the morning, some days I could hardly bear my weight on my feet for a while. This condition has moved around in my body, with my knees now being affected, and my hands being painful to grip or to play the piano. I would welcome any reports on others having these problems. It simply has been a disappointment for me. I tried Fosamax, and Actonel, both having given me problems with my esophogus. This seemed to be an answer to osteoporosis in my hips and back, but even if it improved the bone density, I would not have another infusion.
I ,too, had reclast but I only had the symptoms that you described for two days. I have esophagael problems and am taking protonic so the injection in the vein bypassed the esophagus. I am 64 and do yoga and pilates. When I broke my arm in March, my doctor wanted me to go on forteo but after researching and taking to several doctors I took the reclast. I am hoping my next bone density shows some improvement and I will take reclast again if I have to. I have read the company making forteo is investigating a spray. Let hope it works. Good luck to you.
Bill,
Your comments sound like you are a sales rep for Reclast. Until you walk the walk, and personally understand the risks, I don't think that you can know what I or other patients go through. The "data" is important, I know, but my doctor asked me to go to my dentist for an exam. My dentist has seen similar issues with a drug called Zomid and wanted me to stay away from the long term drugs.
Donna,
I am sorry it has taken me so long to get back to you, I hadn't seen your note. I just wanted you to know that I am actually a musician, not a Sales Rep. The reason for all my research is that my mother died within a year of her hip fracture at 58 years old. My sister is in her forties and has all the same risk factors. My Mother could not take Fosamax because she had tolerability issues. At the time Reclast wasn't being marketed for Osteoporosis. I researched all the treatment options and spoke to three Rheumatologists in my area so I would be informed when I spoke to my sister. Her and my mother also shared a lacksadasical approach to life and I knew I would need to be persuasive and persistant.
My sister was already osteopenic when she had her first Dexa-scan. She takes fosamax. Reclast is not indicated for osteopenia. I hope she never needs Reclast.
thanks for your thoughtful and in-depth answers to questions. You have taken an awful event in your life and turned it into offering something good to many others...bless you! I am debating taking forteo and that is how I stumbled on this site. It makes me a bit nervous to take something relatively new to the market. Was on fosomax for a few years, off for one and dexa showed regression. Was to go back on fosamax but another medical issue had me seeing an endocrinologist, who believes in forteo and is recommending it. the marketing of forteo is another reason I have concerns...Issues I was having while taking fosamax have disappeared since going off med, but I never made the connection til reading these posts. I pray for wisdom...
Bill,
I truly appreciate all the research you've done, and the reasons you've done it. I can not take Fosamax because of the esophageal problems, chest pain, heartburn. My recent bone density showed significant worsening of the lumbar spine; however I still have only osteopenia. My doctor suggested the once a month Boniva, but I'm afraid of taking it. My gynecologist suggested Reclast. I noticed you said this wasn't for people with osteopenia (just oseoporosis?). What is the reason for this? I'm so confused as to what I should do; right now Im opting for nothing.
Bill, I have been reading over some of your posts, sounds like you know an awful lot about reclast. Here is my story... My mother is 80 yrs young, a vibrant, intelligent, woman. Her dr. prescribed for her reclast, I took her to the hospital for the infusion, the next day she was in the emergeny room, she surpassed flu like symptons, she didn't know who she was, incoherent, and just out of it. She spent 4 days in there, the drs would only say that she was 'one in a million' to have this reaction. Seems that since then everything that may have been going on with her was magnified. CHF, COPD, it took many weeks for her to get her energy back, all of sudden she had alot of water weight gain, then she had lasix treatments, the facility dried her out to much. She suffered two strokes, dehydration and once again in the hospital, each time we have a set back she seems to get worse. Now they say she has a slight dementia poblem . Today I took her to the dr, they say she is bleeding out in the stomach, her iron, and B-12 are good, but has anemia. Tomorrow we go see the Gastro Dr.
I honestly believe that the reclast has progressed all of this, but there is no way she will ever take that again. I work in the medical field I know some people do well, but not my Mom. Just my 2 cents worth.
Bill, thanks for all of your post. This is my first time to check this site. I am having infusion of reclast on Oct. 19, 20009. A little fearful since I had problems with fosomax(bleeding from rectum) and digestive tract problems from other osteoporosis meds. I think I will go through with the therapy. I don't understand the information about the medication staying in our body for years that I have read on some postings. Maybe ignorance is bliss or not. But I do appreciate all the things you had to say. GM
MY SISTER IS SUPPOSE TO RECIEVE THE RECLAST I.V NEXT MONTH...AFTER READING ALL THE INPUT FROM YOU ALL...I DON'T THINK THIS WOULD BE GOOD FOR HER..THANKS FOR BEING UP FRONT AND TELLING ALL THE SYMPTOMS FROM THE I.V. MY SISTER HAS HEART IRREGULARITIES AND THIS IS ONE ONE THOSE SIDE EFFECTS SHE DOESN'T NEED....HER ONE FEAR IS HAVING THE PAIN ALL YEAR,AND NOT JUST ONE OR TWO DAYS. THANK YOU ALL AGAIN...I'VE READ ALL OF YOUR COMMENTS TO HER......NANCY
Dido. I've had the same set of problems after having my infusion October 2009. Started within a day or two of the infusion and has gotten gradually worse. If I do anything the least bit strenuous I can barely walk the first hour or so of the next day. I have RA and PMR but was doing fine with my regular drugs before being badgered into taking the infusion by my Rheumatologist. This same moron has been trying to convince me into beginning Remicade infusions as well. It will be a very cold day before I have anything infused into my system again! I'm a 64 year old male who was "borderline" on the osteopororis chart before starting all of this.
If your mom was 1 in a million then I guess my mom is 2 in a million. There are many with severe reactions that the doctors aren't recognizing or reporting. Mom is 83 and had to be taken to the ER 2 days after Reclast with 102 temp and severe flu symptoms, couldnt walk, needed oxygen and fluids. After four days was released and now 5 weeks later back to ER. To complicate things tho, she does have alzheimers and for some reason she cant communicate the pain she has. She was unable to pull herself up out of bed, and then couldn't walk. She was fine before the Reclast. Now back in the hospital they are doing blood work. I am rather upset with her doctor, he wanted to give her antibotic and send her home but family insisted she be admitted.
Received Reclast December 2009 - within 24 hours had extreme bone pain from head to toe, could barely walk had to shuffle plus cold chills and teeth chattering. All symptoms were gone by morning. I thought I was out of the clear. Unfortunately 7 days later extreme pain in neck, then both wrist it felt as if both arms had been broken, elbow and shoulder pain followed - all upper body bone pain. Then both hands swelled to twice their normal size with swelling in one elbow. Could not move arm or touch face with hand. Besides painful it was very frightening. Doctor worked me in and mentioned 1 other patient had responded in this manner...placed on a steroid pack treatment. Swelling subsided but the pain and tingling in hands has not gone away. All my joints are cracking, popping, jamming. This really makes me wonder what in the heck is going on inside my body or better yet within my bones. I feel the pain is directly related to swelling pressure on the veins and nerves running inside my bones.
Oral meds caused additional digestive damage and nasal meds caused bleeding. My mother and her friends with similar reactions to oral meds had NO reaction to the IV medication. Although informed and had pre-treatment blood work with medical exams I felt that I would have a good result from this medication. After 2 major back surgeries, having one joint replaced by 50 and full blown osteoporosis by 56, I felt a pro-active approach was better than attempting to ignore the disease. Now I'm not so sure. I don't even want to think about the possible dental issues. The pain and discomfort with additional meds required is beyond disappointing.
I pray that these side effects will eventually go away.
You stated that Reclast is NOT receommended for Osteopenia??? I just had a bone scan and was told I should go on Reclast for my Osteopenia in hip and spine. Can you clarify where you got this information from. I'm debating whether I should take Reclast infusion and am researching - it all sounds very scary
Reclast has been approved for Osteopenia. It received the Osteoporosis Indication first, and since my earlier posting the FDA has approved it for 1st line use in Osteopenia. If you have concerns talk to your Doctor and/nurse. It is their job to provide answers and make you feel comfortable. If you are still uncomfortable make appointments with different Doctors and get other opinions. It is very important for all of us to be comfortable with each Doctor and treatment he/she prescribes.
I'm 56 and my last bone density showed I have osteo (2.75- I think). About 5 years ago, a doctor prescribed fosamax. My indigestion, heartburn, difficulty swallowing, feeling like I was choking made me stop it within 2 months. I was then given calcitonin nose spray which I have used for 4 years with no problems, except now my bone density has gotten worse. I'm also taking bio-idential hormone replacement, but I was only taking half the dosage prescribed because I'm afraid of getting cancer... I just went to a "osteo specialist" who took tons of blood and urine for tests. He says the cause of my low bone density is because of menapause and that I didn't take a synthetic hormone replacement (pempro). I told him I cannot take fosamax. He told me my only choice is Actonel once a week or by injection--even though I cannot take fosamax. This AM I took the actonel pill and I have had a choking feeling all day. Medical studies on females are relatively new...I think we are just guina pigs at this time. I will take the actonel 1 more time next week and if I still feel like I'm choking, I'm done. After reading all your comments, I wouldn't consider the injection my "specialist" is pushing me to get. They want to give the injection so you won't choke, get ulcers, etc., but it's the same stuff and in your body for a long time. Any comments/help will be appreciated
Sorry to hear that! When a woman is diagnosed with osteo, her choices are to take these dangerous drugs or fracture like cracked china and wind up in a wheel chair. I'm now taking Actonel, 1 tablet per month, and feeling better. Of course, I worry about the longterm effects that no one knows yet. All the drugs offered are relatively new.
I'd caution to you pay close attention to your body - her sysmptoms were a bloated sensation for days after taking the medicine - she would sometimes throw up without warning but never had bad indigestion or discomfort, so be cautious! Also, she had mentioned this sensation to her doctors and got little or no reaction from them, so as usual you must be your own advocate, pay close attention to any changes and demand some monitoring of the situation.
Alison D.
I have taken Fosamax, Actenol, Boniva, Malcatrin, and am now on Reclast. I have had no side effects and love how simple it is to take. The cost though, is something else. My insurance was billed $2800 the first year and $5300 the second year. I have another scan scheduled for April and will know if the Reclast is successful. The reason I was put on Reclast was that after a couple years on the other medications, I Tscores stopped improving and were in fact getting worse again.
I doubt anything could make me start taking the oral medications again. I hated them and dreaded the day I was scheduled to take them.
DaisyMae I appreciate your common sense insights here. I am reticent to use any kind of medication unless it is absolutely necessary--and so, in an effort to better inform myself, I come to a site like this. But instead of information, I read 'horror' stories of adverse reactions and problems. Having gone through early menopause (began at 30), I was diagnosed with osteoporosis at 54. I want to be wise about my over-all health and have put off taking drugs and self-treated with diet, exercise and vitamins. My last Dexa scan showed a 6% bone density increase. But my doctor is still pushing for pharmacological intervention, and wants me to try Reclast. (Which makes sense from her point of view as I've been non-compliant in the past.) Do the risks outweigh the benefits? I'm very active and the thought of self-induced muscle and joint debilitation has really given me pause. I'm scheduled for the infusion on Monday morning (it's now Friday) and I'm still so ambivalent!
I WAS DIAGNOSED WITH FIBROMYALGIA AND CHRONIC FATIGUE SOME YEARS AGO. I WAS ALWAYS HEAVY, UP TO 235 LBS. I HAVE HAD LAPROSCOPIC BYPASS, WHICH I WOULD DO AGAIN, BUT I HAVE LOST 26 PERCENT OF MY BONE MASS. I TOOK BONIVA, FOSOMAX AND ACTONEL. WITHIN A MONTH MY SHOULDERS, ARMS, DOWN TO MY WRIST, MY LOWER BACK ARE IN CONSTANT PAIN. I CAN NOT TAKE MEDS WITH ASPIRIN, SO I AM REALLY IN A MESS. I STOPPED TO BONIVA, AND WAS TOLD BY MY PRIMARY CARE DOCTOR, MY RHEUMATOLOGIST, AND GASTRO DOCTOR, TO GET BACK ON THIS BONIVA. I REFUSE TO TAKE IT ANYMORE........ I DO HAVE OTHER AILMENTS, EVEN DEPRESSION, BUT THIS PHYSICAL PAIN IS DOING ME IN!!!!!!!! THERE MUST BE A BETTER WAY, AND I HOPE BY FINDING THIS WEBSITE, I WILL BE ON MY WAY TO FEELING BETTER SOON..........THANKS
i do not suggest reclast to anyone i 43 with no pain at all and very active i took reclast in aug 2008 it has changed my life even a year later i have heart p v cs now and my hip and left knee has pain all the time i got sick 5min into the treatment,6mo went by and my whole body had changed so i reserched reclast and found that if you had a gastric bypass you should not have it,i have been in the hospital twice this year now......please consider calcium and vit D I WOULD NOT WONT ANYONE TO GO THRU THIS
I am 65 and was diagnosed with osteoporosis about five years ago. My doctor recommended Fosamax and I took it for several years before associating it with a tight feeling in my chest and "stabbing" pains in my heart. A cardiologist friend told me it was probably the Fosamax causing my symptoms. His own wife had just started on it and was already experiencing the same symptoms. He advised me to stay on it, but I got off. I tried Actonel and it immediately made my symptoms worse, so I stopped that, too.
My latest bone density test shows the osteo is worse and bloodwork shows that I am low in Vitamin D. My doctor, an endocrinologist, wants me to take high-dose prescription Vitamin D once a week for a month, then get on over the counter D.
He also wants me to take the Reclast injection. After reading an online assessment on the Johns Hopkins sight that links it with atrial fibrillation, I am very reluctant to take this drug.
Most of what I have read here does nothing to make me want to take it. On the other hand, I don't want a spine or back fracture either.
That said, I have a cousin who has had two broken hips and she's still alive and walking around. My mother had severe osteo, broke several ribs, a hip, her pubic bone, etc., and lived to be 88. So despite those scary statistics, a broken hip is not necessarily a death sentence.
These are very hard decisions to make because there is no predicting the ultimate outcome. But I do get the feeling that the docs are "pushing" the drugs.
I have had one injection of reclast last February. In July I started to have pain in my right hip. It is worse with activity. I have had an xray, mri, mri with dye, seen an orthopedic specialist. Nothing has shown up that could be causing my pain. I am having blood work this week and going to the chiropractor to see if my back could be out. I was just wondering if this pain in one joint, no other place in my body, could be from my reclast infection.
I am 38 years old with osteoporosis due to malabsorbtion. I have had colitus and also have celiac disease. I used to walk/run but due to this pain I can't do any exercise. To vacuum hurts my hip.
Could it be the reclast side effects?
I have osteoporosis and had neuro surgery on my lower spine by spinal cord, where a cysts was actually compressing my spinal cord itself and nerve bundle. I was having on & off then severe pain in my hip for several months I didn't know why.Then pain increased leading up to paralizing me to be bedridden 3 weeks which caused two blood clots (pulmonary embolisms) to my rt. lung, as I lay unmovable on my right side.Any movment would cause the cyst to bump my spinal cord causing suicidal pain & loose my breath. The whole time I thought it was my hip & bones. I had had an MRI but they Missed the cyst Right there in frount of them, on the MRI compressing my spinal cord so I went thru all this. If seen, they could of avoided the blood clots to my rt lung for me. Now Im on Coumadin the rest of my life and INRs (blood work) all the time. I too was on Actonel and Boniva but have GERD and asophagus spasms so severe, I think Im having a crushing heart attack ( found out Gulping cold water pushes away the spasm relieves it, to then stop the attack) Still all the info on the reclast is frightening to me and I see my endo tomorrow. She wants me to get the reclast infusion. I wonder if I can try the boniva again. My bone density in past was negative 2.7. Another bone density tomorrow. Can't take any K vit.from coumadin meds. Take sometimes vit. d and calcium citraite, as reg. vitamin D causes dizzyness & I passed out driving my car from the vit. D & I've never passed out in my life, Had 4 kids full term. Also told I have Calcium defiency from my parathyroid gland not working good, Does this come with Osteopourosis?. :( I also stoped recently taken the Crestor for high cholesterol which they believed, caused additional sever pain throughout my body joints & muscles Thought I had bone cancer. Can barly move I turn to stone & can NOT get up once I sit down. Barly walk when I'm up. Anyone else have these problems? Or conditions these meds?? I am so afraid or reclasps now I have enough problems. I can't afford to bleed anywhere from taken Reclasts I'm on coumadin. TY all for all the info.
I HAVE TAKEN FOSAMAX, THEN CaLCITONIN BY INJECTIION THEN 6 years of clodronate monthly. last year i got aclasta but was a rare one who had a severe allergic reaction and cant have it again. next year i will go back on monthly calcitonin, bugt have continued to fracture, now have eight compresion, sternum fingers toes etc. I have had it since early 30's am now 63, and have immense paqin.
it is so important to co-operate with doctors and keep movign! every time they tell you you will be in a wlker or wheelchair, fight yoru way out of it back on canes.
the aclasta adn similar annuals actually can rebuid a bit of bone, where the others just keep you from losing a lot more bone.
keep moving and fighting it. judy
As a warning to women who are about to make the decision whether or not to take bone density building drugs. BEWARE. I took my first dose of Actonel a week ago, a Friday Within 8 hours I was in so much pain I could not move. My chest felt as if an elephant was sitting on it. My shoulders and back hurt unbelieveably. The next morning I could not put weight on my left leg because of the pain. On Monday I went to my doctor and I was even running a fever. Long story short - it has been a week since I took the medicine and today my neck hurts so badly, I have had to take pain medication. The drug stays in your system for 10 days, so I have three more days of discomfort to look forward to. I was in great health, very busy, full of life, and I've been reduced to lying on the sofa with the heating pad taking pain pills. If I had only known. I'm angry.
I read your account and thought, Did I write this? My experience was identical, it lasted a shorter time however. I thought at one point I was having a heart attack at 41! My Doctor suggested, I premedicate with advil/tylenol and try one more time. I'm so scared and very confused! I had breast cancer in 07 and all the treatments(chemo) have left me in menopause with osteopenia. I'm active but my bone density test shows things are progressing and I need some kind of intervention.
Any insights or help would be appreciated.
I've been reading the discussions on fosomax, boniva, reclast, etc. I'm in my mid 50's and was diagnosed with osteoporosis 10 years ago with a 97% risk for fractures and breaks. (I have other medical issues that lead to the osteoporosis.) I tried fosmax, but had to stop after 3 weeks for severe GERD. Because of the advanced state of my osteoporosis I had to do something. My bone doctor prescribed the fore-runner to reclast which was zometa IV. I had to pay $1,000 out of pocket because it wasn't yet cleared by FDA for treatment of osteoporosis even though the clinical studies had shown very good bone loss reversal. I had bone and joint pain, along with flu-like symptoms for 48 hours every week for the next 6 weeks. Eight months after the IV my bone density test showed an noticeable improvement. Because of the personal cost, my doctor switched me to Boniva IV every 3 months for the next 18 months. I made some improvement in bone density with it, but not like I had with the zometa. I had no side effects with Boniva IV. (My sister takes Boniva IV and has very bad for 3-4 days after every IV.) Finally, the FDA approved reclast for osteoporosis patients (it is very similar to zometa). I had my first Reclast IV 18 months ago with no side effects. After a year my bone density test showed better improvement than the Boniva IV. Because other tests have indicated it is still working in my bones, I don't need another IV, yet. My bone doctor said some people have been able to go 2 years between Reclast infusions. I am extremely happy with the results and will continue to take the Reclast. Because of a genetic clotting disorder, I cannot afford to have any fractures, much less breaks. I am extremely grateful that we have so many prescription medication choices available for people with osteoporosis. It is sad that some people have such terrible side effects with some of the osteoporosis drugs, and my sister is one of them. However, she will be the first in line for her boniva IV because the alternative is worse.
I had gradual deterioration of bone density, taking practically all of the oral meds at one time or another over a period of a decade--with all the negative side effects mentioned. ( I am extremely sensitive to all medications.) When my osteopena dipped down to osteoporosis, I checked into the reclast option. It meant altering a dental program I was about to initiate, foregoing a bonegraft to accomodate an implant, but I decided my bones were more important than avoiding a bridge in my mouth. I had the IV, worried about reaction, drank lots of water and took aspirin (with food) because I don't handle Tylenol, and really had minimal side effects--primarily just felt a bit puny the next day. Interestingly, the backache that had been annoying me for weeks has vanished. This is so much superior to the grind--and reactions-- from the oral meds. And this is proven to provide increased protection. It has really given me a peace of mind that I did not anticipate! And insurance covered it for me.
After a few years on Actenol and still losing bone, I was switched to Fosomax. I've been on it for 4 years and still have not had a good bone density test. My doctor suggested the once year injection of Reclast. I informed her that I was not going to take the Fosomax any longer due to body aches all over all day long. That has been going on now since taking these medications for osteoporosis. I'm tired of feeling achy. I don't even know if I want to take this injection, but I don't want to continue losing bone. I walk, use light weights, don't smoke, take calcium plus d, maintain a good weight for my height and eat sensibly. My frame is small and I guess that has not helped me. I have never been overweight and I wonder if that would have protected my bones more. Has anyone had similar complaints and got the injection without side effects?
OMG... What was I thinking!!!!! I have been Re-Clasted
Lilian's adventures with the hideous drug known as "Reclast".
OMG... What was I thinking!!!!!
I have been Re-Clasted
by Lilian Mustelier
In the early part of 2009 my least favorite Doctor insisted I take a bone density test. I agreed, since I was grasping at straws as to how to rectify my chronic pain and improve my ability to walk and stand. The nice Lady at the clinic asked to repeat the test, since she thought there was a problem with the equipment. Eventually, sometimes in May, my Dr. stated his concern for my bones and referred me to a Hematologist at the local cancer clinic. A little odd I thought, to have a Hematologist treat me for Osteoporosis....but OK, I agreed to do that in order to have a procedure "Reclast Infusion".
I liked the Doctor and it appeared he was very knowledgeable in reference to the procedure and he cared about his patients. He told me my bones were in such bad shape and he added only about 2% of the world population had bones like mine and they more likely resided in 3rd world countries. I informed him that I had done my homework and looked up everything about Reclast on the Internet, since I was allergic to many medications. He thought I might look at the pro's and con's and make a decision.
One of the side affects involved elevated heart palpitation, it concerned me greatly, since I have issues with a heart valve. I arranged a visit with my cardiologist and after some examination we decided that my medicine would offset the increased heart palpitations. Next stop was the Gastrologist, since stomach issues were also listed as side affects. This Doctor has known me for 30 years and we had a frank conversation. He thought my deteriorating bones would kill me and he was confident he could assist me with my stomach problems, which might arise if it became necessary.
One of the major side affects is Jawbone problems. I wear dentures and was unable to be seen my a dentist, since I have no teeth.
During the time all of these preparations on my part took place the Hematologist discovered that my Calcium was way too low and my body had problems retaining Vitamin D. He ordered 100,000 mg of vitamin D a week. I was allergic to the dye in the vitamins, but decided to continue to take them, since there was no other way to administer the vitamins. A pretty miserable month followed and we decided to change the dosage and switch to another brand. I was still able to take care of myself, go shopping, go the clinic every two weeks for blood tests and continue to produce my weekly TV Show and finish the book I was working on, from my home.
By mid November it was decided that we now could attempt the procedure, I must have been the longest "IN PREPARENESS" patient in history. My last visit with the Doctor was rather odd and I got somewhat nervous about the whole thing. Just as I was ready to change my mind it came to light that one of my grand daughters and a nephew had similar bone issues, so I agreed to go ahead with the procedure so the young relatives, both in their 20'S would know what they were up against, in case a Reclast Infusion was suggested to them. I scheduled the procedure for December 2nd 2009.
The staff at the chemo therapy unit were extremely nice to me, while signing release papers I noticed that my kidney function had not been checked, so I requested the test and they did that. The results came back OK and the zoledronic acid was put into my bloodstream over a 30 minute period. I had time to reflect on how I had prepared for this, working ahead on my shows, my book was finished, the house was clean and I had prepared food for the next 6 days...I was ready.
The nurse instructed me to drink lots of water and take 2 pain pills as soon as I got home to lessen the discomfort which was about to happen to me and made an appointment for a blood test in 2 months.
Just as she predicted within a few hours I thought I had the swine flu.
Four days after the procedure I thought I should call the Dr, since I was deadly ill and realized this may not be normal. I got very cold, at which time my temperature was 102 degrees. I got very hot, at which time my temperature dropped to 94.2 degrees.
My personal physician was no longer available.... he went "NORTH" and I was unable to find a doctor to see me.
Within a week I had ADDED THE FOLLOWING SYMPTOMS:
Loss of use of both arms..... that comes on very suddenly and only lasts a few minutes.... about once or twice a day.
I had to learn how to handle hot objects to keep from getting burned and stay within reach of a counter or table to drop things on in a split second.
Sudden hypoglycemic attacks.... no warning
I have food located about every 10 feet, since I do not have time to reach the kitchen when this happens and would faint unless I eat something.....besides regular meals.
Swelling of hands and feet...
I removed all of my jewelry so it won't have to be cut off my finger in an emergency.
Bleeding....
A 3 millimeter surface cut bled for 4 hours.... frequent nose bleeds....
Loss of smell and taste....
I smelled a skunk once. I smelled Tobasco Sauce once, except it was not there. I can smell Orange peels, that seems to help a bit.
Gum and Jaw problems....
Upper and lower gums are always sore and bleed and my left jaw hurts constantly, it feels like a toothache inasmuch that the pain reaches all the way in my lower eye cavity.
Neck Pain....
My neck hurts constantly
Extreme dizziness.... without warning, even when sitting still...
I walk with a walker to keep from falling and removed objects from tables and counters, in case I need to grab something.
Cross-eyed...
I am not sure if I am actually cross-eyed, it is very bad and scary, I get nauseated. It feels worse than VERTIGO. I try to lay flat when it is possible.
Charley Horse pains in various parts of the body...
I have no Idea how to deal with that as of yet.
Insomnia....
I am unable to sleep, so I take many naps when I can.
Extreme weakness....
I lay down throughout the day, any activity exhausts me. Cooking, getting dressed, hygiene and any other physical activity is very difficult.
Weakness in lower back....
Before the procedure I was able to stand 7-8 minutes before my back gave out on me. Now, I can stand 90 seconds before my back weakens and feels like it is unable to support my upper torso.
Stomach problems.... Heartburn
I saw my gastrologist, he gave me Prilosec and added Vitamin B to my medications, which helped me a little with my nervous system. He was unfamiliar with the rest of the side affects of Reclast and I was grateful he tried to help me. I have doctored myself with the rest.
In the meantime, it has been determined that Prilosec used over a long period of time promotes bone fractures. I have replaced Prilosec with Dan Active.
These symptoms never appear at the same time and in no particular order. Each time I manage to adjust to one thing, a new problem will arise and render me fairly immobile.
As soon as some of these symptoms started I attempted to seek medical help with my dilemma. My personal physician has not been replaced,,, to date..., a walk in clinic could not treat me and offered to refer me to an emergency room.
I called the cancer clinic, which administered the Reclast and was told there were no answers for me there. The medicine is approved by the FDA and according to the person at the clinic two 7-month tests had taken place, the outcome was unknown to them. I wanted to know why 7-month studies were conducted if the medicine remains in the system 12 months. I was told all participants were "OLD" , what are they saying? I am 62!
I was instructed to call the FDA and report my symptoms. If you have ever tried calling the FDA you will be right in guessing that did not work and I got nowhere.
I called the Pharmaceutical company and was advised to see the Doctor who ordered the infusion.
After two month of fighting I was able to get a Doctor's appointment.
I insisted a written record of my symptoms along with the letter from Kathryn Grandfield be enclosed in my medical records. The Dr. was very thorough and ordered a full set of blood tests, urinary and ultra sound of the upper abdominal organs, kidney, liver, bladder, stomach and bile duct... I have no gall bladder. All tests came back normal and my association with the hematologist ended.
Just because my tests were normal, that did not end my dilemma. Nothing has changed in my condition. At the beginning of my 4th month after my infusion I was scheduled for my yearly check up with my Cardiologist. He also took a long look at my list of symptoms. He ordered a 24-hour heart monitor and a series of blood tests. After hearing about my ongoing symptoms, especially my "CROSS EYE PROBLEM" which now occurs almost daily without warning. He was also concerned about me loosing the use of my limbs, he was almost positive it was not connected to any of my heart problems. He suggested I should be seen by a Neurologist, since some of the symptoms sounded like MS.
The blood tests are back and it showed my thyroid function was low, an additional problem for me. Since I have multi allergies, IODINE is one of them and I do not respond well to Thyroid meds, that is a problem. All Doctors were aware I have Graves. The problem is there are so many side affects for Reclast I am sure it will take years to find a better solution.
A MRI followed, my brain looked very good my Neurologist of 30 years explained to me, no signs of MS or any other disturbances he could diagnose, to be on the safe side he also took a EEG.
I finally have a new permanent Physician, she is very thorough and listens.
A CT Scan of my jaw was taken, no conclusive results, without a capable dentist no-one seems to know what they are looking for.
All I know is, my jaw, way into the right sinus cavity hurts ALL the time, like a constant toothache.
I have treated myself with Camphor, Colodial Silver and Bamboo Silica, I am unable to use over the counter remedies due to my Novacaine allergies.
It also complicates my ability to eat and swells and bleeds at night.
My jaw problems have intensified, no-one seems to be able to know what to do, including a Dentist friend in Reno, NV. I had asked to look into the problem, I thought if he discovered what the problem was he could write a medical paper for a journal, except he thought it was too bizarre to subject himself to a research program without proper pay.
My children bought me an electric scooter, a blue AMIGO and I am grateful. Unfortunately my home is not wheelchair friendly and a whole new challenge has presented itself, a challenge I will learn to master. Rebuilding Thurston County built me a larger wheelchair ramp and I am grateful.
I can now, six months to the date, smell pickles, orange peels, lemons and freshly cut grass. Since I am unable to taste my food, I still eat by texture and memory.
I can taste ginger.
Six months to the day of my infusion I still deal with the same challenges of the side affects and now have also added occasional "NUMBNESS" of my face and mouth.
I have learned to brace/hang myself by my elbows or slide to the floor when my legs disappear. I am unable to regularly produce my TV show, and have to air re-runs.
My procedure was suggested by my... AT THAT TIME ... Doctor, which I thought was familiar with my ailments.
Television ads by Pharmaceutical companies sound very good at times and they suggest for you to talk to your Physician about certain treatments.
They also suggest IF you have side affects to call your Doctor, EXCEPT Doctors rarely have an answer for you. Chances are they were not educated as to what to do for you. They are unable to identify the full extend of the side affects. It costs thousands of dollars to rule out new conditions and can easily render you immobile.
Especially when people taking many medications are unable to tell you what is wrong with them and are often ignored. I have known several people... friends and relatives.. which have lost their lives, because they were not as aware of their bodies as I am. I am still in a position to maneuver myself somewhat, was I a much older person, people would assume I was FAILING and going downhill.
There is a possibility I am the exception to the rule, in case I am not:
Please do not become a statistic!
This is the letter Kathryn Grandfield wrote when I asked her what she remembered about the days she supported me from a distance.
Lilian - to chronicle the experiences you have had since Reclast was administered to you in early December so you can accurately relay this information to your physician. Since you became very ill during this time, I am writing to give you my recollections of the experience you had by way of talking with you almost every day during this time, at least once a day and often more than once.
My memory is that the discomfort began later in the day after the drug was given to you at the clinic and that you began taking pain pills for the pain that day. The next day you were in increasing pain and had started having some muscle cramping. At this time you were still mobile and could get around fairly well, occasionally mentioning you thought you probably should be using the walker because of vertigo and dizziness. Within a few days you had sores in your mouth and had great difficulty eating food. Each day you seemed to be weaker and it was often difficult to understand your speech. Each day was worse than the day before and the symptoms seemed to escalate and also increase in number. At the time we talked about your kidney function. You were drinking a great deal of water and were not voiding very much. since you had been given information that the drug could cause kidney damage, you were concerned about your water intake. Things seemed to go from bad to worse right around the Christmas holidays. You were constantly either very cold and unable to get warm, or overly hot. I believe someone brought you a thermometer so you could monitor your temperature. At one point I remember you had just taken it and it was 102.6. I thought this was very high and asked you if you had thought of calling the doctor again. You said you had called the doctors office and the clinic where the drug had been administered and neither of them would help you in any way. You were worried about going to an emergency room on your own where they would not have access to your extensive medical history and might cause you harm without meaning to. In addition to dealing with the Reclast and the effects of having it in your system, you were also dealing with heart problems, problems with your neck which was hurting you so much you said you were unable to move your head. Your neck and diminished ability to breathe and swallow has been an ongoing problem for you for many years due to thyroid surgery and Graves disease, which have been a problem for some time. At this point I became very worried for your survival and kept urging you to call your doctor again. You seemed to be constantly dizzy and unable to stand at all, and sitting was difficult as well. You had completely lost your ability to taste and smell anything. Your arms were also going numb on you and you were unable to hold things sometimes. I remember several times you would drop things when we were talking. You were sometimes very disoriented and I could hear the sound of giving up in your voice. You never give up on anything but this seemed to be causing you so much pain and you could not get help. The vertigo continued. You continued to have instances where you described it feeling like you had no arms and hands because you could not move them or feel them. The muscle cramps were getting worse and seemed to affect you in many places at the same time.......legs, feet, abdomen. I forgot. Your digestive system seemed very upset during this time as well. You had constant burning. Your loss of taste and smell seemed to have decreased your desire to eat food. We often talked about how you had to eat to give your body enough nutrients to deal with the problems you were having. It seemed to me that there wasn't any aspect of being a physical human being in you that wasn't adversely affected by this drug. My outrage that knowing your medical history, none of the doctors would help you when you phoned them.....no referral to someone else if they didn't want to treat you, and none of them would see you until your gastrologist agreed to see you about your digestive problem. I was worried you were going to sit in your home and just die because no one would run any kind of blood test to even try to get a picture of what had happened to your body. Perhaps the most frightening thing occurred this past week when you suddenly became what you described as cross eyed. You had trouble staying upright. You couldn't see correctly. It lasted for about 10 minutes.
I am very glad you are at last going to be able to see the physician who administered this potentially damaging drug to you.........how long ago has it been? Almost two months? I can't remember accurately how many times you contacted his office for help. Two months with a drug of this calibre with absolutely no one monitoring your physical condition. I remain outraged and I urge you to do whatever you can to see that no one has to undergo an experience like this alone again. It seemed to me there had been a complete breakdown in the health care delivery system as far as you were concerned. With all the warnings you had been given by them no one had taken the time too hear what was happening to you,.which might have resulted in them being alerted to some of the conditions they had warned you about. But no one would take the time to even talk to you over the phone! What kind of medical people are they? I often wondered if they just thought you would die.....especially since the clinic nurse told you they had never encountered your problems by people taking this drug because the people were old. I remember we laughed because it sounded like she was saying everyone died and didn't live long enough for them to get a picture of what the drug did to people. And now after this drug you cannot stand at all. So you are worse than you were to begin with.
Please let me know what the doctor says. Hopefully he will at least run some tests to detect kidney damage if it occurred, or liver damage or any of the other numerous problems that you were warned about before you took the drug. Do you suppose you were supposed to suffer the pain and debilitating effects of the drug AND self diagnose at the same time? Kind of sounds like it, don't you think?
Love,
Kathryn
“Information is not knowledge.”
----Albert Einstein----
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Hi Lilian, welcome...I'm so sorry to hear about all your medical problems. Are you looking for a doctor, that can treat all of this? I realize you been to many already, but if you are looking for a specialist, I would look at your nearest Univ hospital. I don't know what type of doctor you should see since you have so many different problems, but this may be the best place to start.
I sure hope you can find some help, and treatment for all of these different problems.
Good luck and let us know what you find out.
I received my first infusion of Reclast in April 2010 and had mild side effects for five days. Since then I have been fine until I opened today's mail! My insurance company had preapproved me and advised that it was covered 100%. I got a bill from the hospital today totalling $1,100. According to my insurance company, an infusion is considered a "surgical procedure", so all hospital co-pays and deductibles apply. In my case, that was a $100 co-pay and $1000 deductible (and I was at the hospital less than 45 minutes). Fair warning ladies - check your medical insurance coverage before agreeing to this procedure. Without insurance, one dose of Reclast costs $2,325!
Hi anon, welcome...We are getting more and more posts like yours where the cost for this is quite high. I'm sorry it costs so much and hope you are able to cover it.
For anyone considering this, please check the copay price and any ancillary charges that might apply. We are hearing many different amounts charged for this, so it will depend on your individual insurance coverage. I wonder, if it was done in a doctors office that has an infusion center, if it would cost less. I know of several doctors offices that offer this, but have never looked into the price. They are usually oncologist offices that have this service.
Good luck...
I had my first reclast treatment on Friday July 16, 2010, 4 days later I am still waiting for any of the horrible side effects that I have read about. I have had a slight headache some minor joint/bone pain and that is it.
As far as I am concerned this once a year treatment is the easiest way to go, I was in and out of the clinic in an hour. I drove an hour to my daughters house afterwards and spent the weekend enjoying the grandkids and having fun.
Hi Sandra, actually the oral meds would be more difficult since the medication has to go through your intestines. Reclast may be easier to handle since it doesn't travel through this area, but I would still ask the manufacturer and your Dr. since we don't know for sure how these meds act with this type of surgery. You could also check with your local pharmacy.
Good luck and let us know what you find out.
People who experience problems should speak out. Its unfortunate that only the usual side effects are presented to the patient prior to taking a life changing med. It would also be helpful if not only all potential side effects were explained but how a patients current med. condition may increase the risk of harmful side effects. My wife took reclast a year ago (she has crohns) within 2 months she had her thyroid radiated as it went out of control(we now arent sure if that was necessary)we had to go from KCMO. to the MAYO clinic in Minnisota to try to get answers to her NEW health problems. One year later and she has had a horrible sinus infection, high blood pressure and heart rate. Cant go to the bathroom without these going through the roof. Nodules on her legs, possible sorcoidosis, back pain, and fever. These last problems are said (by doctors) to be a spin off of the sinus infection causing her to delay her remicade treatment. The more we research the less we think this is the case, after all we are listening to the doctors who gave her the gloom and doom senario if she didnt take the reclast. Who also told her if she didnt radiate her Thyroid she would be on multiple med.s the rest of her life instead of one to regulate it. If we think about it we are trapped in a medical system dependant on Doctors we dont expect to say I was wrong now this is what we have to do to fix it. If they are wrong they wont say it. If they dont tell you everything there is to know about a treatment so you can make an educated decision are they going to tell you they were wrong or leave you to be the only one who pays for their error while they continue to charge you for treating a condition they may have been instumental in creating. PLEASE BE VERY CAREFUL ABOUT YOUR MEDICAL CARE, ITS YOUR BODY AND YOU HAVE THE VESTED INTEREST.
People who experience problems should speak out. Its unfortunate that only the usual side effects are presented to the patient prior to taking a life changing med. It would also be helpful if not only all potential side effects were explained but how a patients current med. condition may increase the risk of harmful side effects. My wife took reclast a year ago (she has crohns) within 2 months she had her thyroid radiated as it went out of control(we now arent sure if that was necessary)we had to go from KCMO. to the MAYO clinic in Minnisota to try to get answers to her NEW health problems. One year later and she has had a horrible sinus infection, high blood pressure and heart rate. Cant go to the bathroom without these going through the roof. Nodules on her legs, possible sorcoidosis, back pain, and fever. These last problems are said (by doctors) to be a spin off of the sinus infection causing her to delay her remicade treatment. The more we research the less we think this is the case, after all we are listening to the doctors who gave her the gloom and doom senario if she didnt take the reclast. Who also told her if she didnt radiate her Thyroid she would be on multiple med.s the rest of her life instead of one to regulate it. If we think about it we are trapped in a medical system dependant on Doctors we dont expect to say I was wrong now this is what we have to do to fix it. If they are wrong they wont say it. If they dont tell you everything there is to know about a treatment so you can make an educated decision are they going to tell you they were wrong or leave you to be the only one who pays for their error while they continue to charge you for treating a condition they may have been instumental in creating. PLEASE BE VERY CAREFUL ABOUT YOUR MEDICAL CARE, ITS YOUR BODY AND YOU HAVE THE VESTED INTEREST.
Hi Brian, welcome... You are absolutely correct. We must speak out, and better yet try as hard as we can to find out about the side effects before agreeing to these meds. I realize this can be difficult and very time consuming, and you would think the Dr.'s would supply all the information on the negative aspects, but unfortunately not all are doing that. Some do, but they are few and far between. Luckily I have a Dr. who never leaves out a single negative aspect on any treatment.
I've never taken Reclast, but since I've read everything I can on it, It's not something I would take. There are plenty of people who speak out about this, but it's always after the fact.
For anyone considering this treatment please read Novartis' prescribing info (PI) on this drug. I do have to say that there are many who don't have these reactions, so it's really hard to tell which you'll be until you take it. The prescribing info is intended for health professionals, but it's a very good idea to read it anyway since it contains much more info than you'll get from most sources, and it's not difficult to understand. Certainly, if you have kidney problems, hypocalcemia (low blood calcium) or any of the other contraindications, think twice about this.
We now have this issue with bisphosphonates where they can cause atypical femur (and other bone) fractures in some populations. All the bisphosphonates (Actonel, Reclast, Boniva, Fosamax, Aredia, Zometa (zoledronic acid/Reclast, Didronel) and others have very similar side effects. Some of these bisphosphonates are used for cancer patients and those with Paget's disease, so it's being used in other medical treatments and to prevent metastatic cancer.
I sure hope you can find resolution to this, it sounds horrific. Have you reported it to the FDA? I realize that may not take you too far, but at least it's one more patients report they have to document.
I'm assuming your wife has rheumatoid arthritis since she's on Remicade; is that correct? Unfortunately RA is a secondary cause of osteoporosis as is steriod use for the various arthritis treatments.
Good luck to you and your wife! Hang in there I know it's rough... And let us know how you two do with this and if you can get any help. Members are always asking what others find to resolve this; so if you find out something you'd be helping a lot of people who've had these reactions.
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Treatment sounds great! I would like to learn more about it? Will my perscription insurance cover it?