OSTEOPOROSIS PAIN AND DIFFICULTY WITH MEDICATIONS.

By Suzanne Friday, June 01, 2007

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Hello, I have been living with Osteoporosis for many years (I'm 68 years old). Have tried the pills and my stomach just can't handle the pain. Micalcin was helpful but was $50.00 every two weeks and we just can't afford that on our fixed income. My Dr. recently gave me the second infusion of Boniva (I was so hopeful). The first injection gave me moderate flu symptoms for a few days. The second Boniva infusion has left me in terrible pain (most of the time) for the last two weeks. You name a body part and it hurts beyond belief. I'm no wimp (having endured 14 nerve blocks for Sympathatic Dystrophy) and didn't walk for at least two years due to pain from the Dystrophy. I'm left with a 10% disability in the one leg but feel greatful to be able to walk and be pain free for the most part. I'm willing to try anything but this Boniva pain was quite daunting and I would rather be put down than have to go though that daily. It is not a daily thing now but periodically attacks me when I least expect it. It tends to jump around from place to place or just takes over my whole body. Muscle spasms, sharp knife like pain, deep (feels like) bone pain. Boniva is approx. $68.00 every 3 months which is more in our price range, but...... The Dr. does not think I should continue the Boniva because of the severe reaction with this last infusion. I would like to continue even with the pain if I thought it might ease with each injection. It has become less often this last week.

I've had broken ribs several times but nothing else. (Thank goodness.) I don't want to break anything else. Like a hip!!!!

I struggle with a condition called Hystoplasmosis (contracted in the mid-west when I was 16 years old) which has caused lung defect on one side and has now reared its ugly head as pneumonia causing me to be hospitalized for 30 some days a year ago and I'm on oxygen most of the time which only complicates things for us. Having lived with this disorder all these years I am not as concerned as I, perhaps, should be. It just complicates our lives a bit more.

Yes, I guess this is a gripe session - it was certianly not intended to be. Oh well! Would like to hear from anyone else who has taken Boniva infusions and a rundown on their reactions to it. Look forward to hearing from someone as I feel treatment of some type is absolutely necessary. Oops! Forgot to mention I can't take harmone treatment because of a blood clot when I was 19 years old. Really, I'm not a total mess and love life especially with the help and faithful love of a wonderful husband of 41 years.

I'm anxious to hear from someone.

Thanks, Suzanne

Comments (13) | Add comment

Lila de Tantillo, Health Guide

6/ 3/07 3:29pm

What a tough thing to go through. I am sorry to hear about all the difficulties you are undergoing with your osteoporosis and, worse yet, your efforts to treat it. You are to be commended for taking such a dedicated, proactive approach and working with your doctor to find the best solution. Unfortunately I don't know what that would be in your case, but it sounds like with your serrious efforts to take charge of your condition that you and your physician should find it and hopefully overcome the pain you now face. Good luck with everything and I hope you keep up that strong, resilient spirit.

Pam M

6/15/07 12:53am

i just seen this in my email and thought of you for your pain its worth a shot maybe good luck not sure if it will help but maybe kk..... take care Pam http://www.healthcentral.com/chronic-pain/news-40154-31.html

Betty

9/28/07 1:40pm

I have taken all of the Osteopororosis med and have had stomach difficulty with each one of them. I recently tried Boniva and I have never had such heart burn and stomach pain. Now my doctor wants me to take Boniva infusion. Since reading what happen with you I don't think I could tolerate the pain again. Does anyone have any ideas.

Joy

10/11/07 12:03pm

Hello,

I had a similar experience when I took the first infusion. I haven't been totally well since. I have just taken the second infusion and it is not a severe as the first. The doctor doesn't accept that these reactions are from the boniva.

I took Forteo for two years and it was great and my bone scan improved greatly. But the gov. won't allow any more than two years for year because of cancer possibility.

If you haven't tried Forteo I would suggest talking with your physician about it.

Good Luck,

Joy

Los Angeles

12/ 3/07 12:08am

Great to hear about Forteo. My grandmother is lying in the hospital as I type this. She's 89 and in incredible paid from back spasms likely due to he brittle vertibrae. Is there some why I could get someone else to respond to the pluses of Forteo so that I can rest assured that the last poster is not a paid pharacutical marketing drone that's here just to hype new medications? It's my grandmother's life at stake here.

Thanks,

Mike

marcia

12/19/07 9:43pm

Hi Joy I had the Boniva IV last week and had extreme muscle spasms all over. The pain was a solid ten. I am still having pain but not as bad. I am hesitating to take the second treatment in 3 months. I wonder if the second time will have the same result ?

marcia

12/19/07 9:31pm

I too can't take many meds so after the first Boniva infusion my pain through my entire body was severe muscle spasms. I could not even move at all without screaming in pain .After one week I am still having some pain.I am afraid to take another dose in 3 months but I need to have the help for my bones. Does anyone there know if the second or third treatment gets better???? Marcia

Dee

3/ 1/08 7:50pm

So far I have had five Boniva infusions and have had absolutely no adverse reactions. I'm hoping that my bone scan in a few months will show some improvement. Everyone reacts differently to various medications so I think each of us has to make personal decisions regarding which medications work for us. There are pros and cons to all medications, including Fosamax, Boniva, and Forteo.

Pam M

9/12/08 12:09am

Im so sorry to hear all that has been going on with you. This is just a shot in the dark for you but i am on amnitryptoline and not to sure if it would help you or not. I am also on Lyrica and that helps me so so much as well. Maybe something you may want to look into. I pray and hope your feeling better real soon ok and please remember to try to keep a chin-up and take care of yourself... Love:Pam

Anonymous

6/17/09 6:32am

I have had Arthiritis for many years, have gad lots of pain, have taken Fossamax, was not able to take as it caused me stomach troubles, ( have had ulcer operation, but seems to have caused me a troublesome stomach, NO ULCERS THOUGH)I have a lot of trouble taking medicines for anything, as it causes me to have stomach problems. Tried Fossamax, and pther bone meds,No can Do. Now my Dr. has said my spine has osteoporosis, he wants me on Meds, He is thinking of giving me Bonniva infusions, Have read about it causing colesterol problems, WHAT else could I expect? I am soon to be 77 yrs old. I still work and have not had any bones broken ,So far.

Anonymous

7/16/09 10:51pm

If you haven't any fractures, bump up your calcium, Vitamin D, K, boron, magnesium OR get this vitamin that has them all called bone-up and but down on caffieine and alcohol. Take care?

Anonymous

7/16/09 10:47pm

I am 51 and have severe osteoporosis, but no fractures yet and I am trying exercise and calcium rather than Boniva or Reclast. (Should quit the glass or two of wine a night, but that's next.) I'm trying calcium, vitamins and weight bearing exercise because I don't like the idea that Boniva and Reclast kill Osteoclasts, cells that do other things besides take away old bone. I'm not convinced that Boniva makes bones stronger just because it makes them thicker. Any way I have a friend who went on Boniva and suffered the same pain as you. She couldn't do anything. She is off Boniva now and I saw her riding her bike the other day. My worry is that people desperate for a fix to a scary problem, fractures, disability, pain and loss of mobility, are jumping into taking drugs that have serious side effects and may not work. Look at what they are finding out about tonsils--they fight cancer. Perhaps exercise & diet are the way to go. I have heard that coffee and alchohol are big no no's for osteoporosis. Try a naturopath with a medical degree and you may find, not a cure, but a somewhat solution. This stinks.

Lorri

8/ 5/09 3:41pm

Like Susanna, I'm 68 yrs. old and have been on Boniva and have been having joint pain for the last yr. Been to the rhemotologist and have tried all different kinds of medication. None seem to work or I'm am so sensitive to all of them. I'm now thinking my joint pain is related to the Boniva injections. It seems that when I started the injections about 1 yr. ago is when all this pain started to happen. No reactions to the injection but several wks. later I start to hurt all over. All my joints ache so bad. I can hardly wring out a wash cloth or dish rag or raise my arms to put deodorant on. I've tried new medication out called "Savella" for fibormyalgia and that didn't work. I've asked the Dr. if I have to live in pain like this for the rest of my life and he said "No", but I don't know what to do now. Maybe I should stop the Boniva injections!

OSTEOPOROSIS PAIN AND DIFFICULTY WITH MEDICATIONS.

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