forteo side effects

By Linda Wednesday, October 03, 2007

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Hi, all. I am an almost 57 year old female. After 4 years on fosomax due to osteopenia, I was diagnosed with osteoporosis (hips -3.1 & -2.6; spine -1.9 to -2.8). Blood test revealed a very low vitamin d level that was impeding calcium absorption. I have been on forteo for about 3 months. I normally do aerobics two days/week, tai chi one day/week, and walk 2.2 miles four-five days/week. After about 1.5 months on the forteo and massive doses of vitamin d (50,000 iu/week), I started having weird pains. Now, three months later, I have a terrible pain in my shins (both legs), my ankles, and stabbing pains at random places. I also am having muscle cramps in the back of my upper legs and in the calves. I had to lay off the exercise for a couple of weeks, but went back to tai chi today. Then, the dizziness set in and was quite severe. Lately, I have felt like my ankle or leg is going to give out on me. That really scares me. Has anyone had symptoms that are this severe? I am a loss as to alternatives and cannot become a couch potato as I have controlled fibromyalgia for the past 7 years with a vegan diet and PLENTY of exercise. The pain I am experiencing now is TOTALLY different from that caused by fibromyalgia. I hope to talk to my endocrinologist tomorrow, but would like to hear from other users of forteo. Thanks. :)

Comments (39) | Add comment

Maria Gifford, Editor

10/ 4/07 11:43am

Hello and thanks for writing. Welcome to our community.

Your question and experience with Forteo and its possible side effects are not uncommon. See:

Forteo: Do the Benefits Outweigh the Risks?

http://www.healthcentral.com/osteoporosis/c/73/2677/forteo-risks/

I am a Forteo user

http://www.healthcentral.com/osteoporosis/c/3020/13004/forteo-user/

Forteo side effects

http://www.healthcentral.com/osteoporosis/c/3380/14145/forteo-side/

As always, be sure to discuss any questions, concerns or problems you have with your doctor. He or she can be of the most help to you personally.

Let us know how things turn out for you.

Best,

Maria

Lila de Tantillo, Health Guide

10/ 4/07 6:52pm

Thanks so much for sharing your concerns with us. What a tremendous set of challenges, fibromyalgia, osteoporosis, now these side effects. I wish you the best as you take on these issues.

Linda

10/25/07 11:10am

Thanks, Lila. Sorry that I am so late in responding to your good wishes. I have been out of town, had technology problems with my computer, and now I'm home with a cold. . .but at least I can get a bit caught up.

Lila de Tantillo, Health Guide

10/25/07 1:39pm

Thanks for your message! I hope you are feeling much better. Take good care and keep us posted on how you are doing.

donna

10/24/07 3:59pm

I suffer the same side effects that you do Linda and I am nervous of staying on Forteo. My doctor told me its like a teenager with growing pains and its normal, well I never read that anywhere and I also suffer from consipation which I had prior but not this bad and fatigue which is no stranger to me either. How are you doing ?

Linda

10/25/07 11:08am

Hi, Donna

I had to go off the forteo after the side effects worsened and included dizziness. I could not afford to fall. I'm not sure what we are going to do in terms of treatment now. I am still doing the calcium and massive doses of vitamin d, but my body is not absorbing the vitamin d. I had a blood test for celiac sprue last week but don't have the results yet. Good luck with your decision-making. I am at the point now where I wish I could have continued the forteo, despite all misgivings that I had.

Mufasa

10/30/07 6:54pm

Dear Linda,

I began Forteo treatment on September 1, 2007, and stopped using Forteo on October 6, 2007, because of side effects very similar to those you described in your initial post.

It would help me very much if you would post a reply to these questions:

1) Are you still experiencing the same side effects or did they stop after you stopped using Forteo?

2) If the side effects stopped, did they stop completely or only partially?

3) How many days did it take after you stopped using Forteo for the side effects to stop?

4) If the side effects stopped or decreased after you stopped using Forteo, did they stop on their own?

5) Did your physician recommend any specific treatment to counteract or reverse the side effects? If so, what treatment did the physician recommend and was it helpful?

6) Did you take any other action, such as alternative treatments, supplements, or changes in diet to stop the side effects.

7) Were the side effects totally reversed by the treatment recommended by your physician or by alternative treatments, or do you still have residual side effects?

I am 60 years old and I was was also very active before the onset of Forteo side effects. I continue to experience severe pain and weakness similar to that you described, and would like to get my life back. I have an appointment with the prescribing physician on November 5, and I am attempting to gather information so I can intelligently discuss treatment options.

Thanks in advance for your help!

If any other members have experienced similar side effects and have ideas to offer, I would be deeply appreciative.

Mufasa

Linda

11/ 8/07 6:37pm

Hi Mufasa:

Sorry it has taken me so long to reply. The "cold" turned into a nasty bout with bronchitis/walking pneumonia. I have just gotten back to work and caught up on emails. I have also just gotten back to my tai chi classes. I have not tried to go back to aerobics. I did not do anything to reverse the side effects. I just stopped taking the forteo. Within two days, I started feeling better. Within 5 days all the random stabbing pains had stopped. It actually took several weeks until all pain stopped. I can now flex or stretch without pain, but the ankles are still tender if I squeeze them. We still don't know why I am not absorbing vitamin d. The celiac test came back normal. My doctor has put me on Boniva and I just took the first dose a few days ago. I only hope it helps, since I was on fosomax for almost 4 years and went from osteopenia to osteoporosis during that time. Maybe now that I am on huge amounts of calcium and d, the Boniva will help. Good luck with getting your life back. I did not realize how bad it all really was until I started feeling some relief. I hope you will get some relief soon.

D E

11/ 6/07 11:21pm

well I have to stop taking the Forteo as now it is 700.00 a month I can not afford it but am sort releived as not sure it works anyway only used it about 6 months but no way will pay 700.00 for a experiemental drug ......

Linda

11/ 8/07 6:37pm

What is your treatment plan now?

Susie

12/14/07 11:07pm

hi Linda,

I am 1/2 way into month two, and I have similar symptoms. Strange that Web MD lists none of them. I two am a workout person, but now I am both SO tired, and I shuffle around like an old person because my back, my hips, backs of my legs hurt- just about all the time.

I felt great before I started, and was quite shocked to be told of the bad bone scan. So, either the truth to my actual condition is now being felt - because it is real, and it just took a little longer to let me feel it. Or the Forteo is busy building up my bones, like a little baby, and it is sapping up my energy that used to go to me -running or cardio equipment using.

I haven't ever had a calf cramp during a work-out - ever! When I read that by you, I have to say it made me feel better.

Maybe some others will find their way here. good luck!

Susie

Linda

12/15/07 4:32pm

Good luck to you, Susie. I had to go off the forteo and the side effects wore off after I went off it. I am now on Boniva. I hope the forteo works well for you. I don't think the things you are feeling are related to osteoporosis; I think they are all about the forteo. Regardless, don't get discouraged--just take it a day at a time. At the same time, remember that we are our own best advocates. So, remain vigilant.

skp

2/ 4/08 11:32am

I also exercised and took Calcium -etc -- turned out I had Celiac Disease ..which keeps

you from absorbing the Calcium - Fosomax - etc.. Do NOT let 1 negative test for Celiac

determine you do not have the disease... It is not uncommon - to have a few false tests

initialliy - not to mention - Many Labs and doctors do not have any experience in diagnosing or

treating Celiac Disease -- A major side effect of Celiac is OSTEOPORSIS ......

Good luck with this ... I am also concerned about the lack of information regarding side effects

for Forteo - I would like to find a site - that is not filled with Lily / Forteo Information - BUT

information from the actual users... If Doctors and Lilly/Forteo Personel are contributing ...Please provide informatin - such as - 1. How often should Bone Density Testing be done - during the

usage of Forteo? [2] A REAL list of side effects - like High Uremic Acid levels [Gout] ...etc ...

My Doctor knows less then I do about this Drug... and I am looking to fellow users of this drug for informatin.......skp

Marcia

3/16/08 12:02am

I too, Have these weird pains as you described. I am going to probably go off the Foteo.

I have been on it for a year. I recently have had more of the pains and now the dizziness but I am taking 2,000 mg of Vitamin D that my or may not be a contributing factor. I went and had a blood test today for high calcium levels in my blood. Not sure where to go from here since the osteoporsis is severe.

Marcia

Loie

3/31/08 2:56pm

Hi,

I have been reading the posts with much interest. I started Forteo several months ago and started having severe joint pains about 3 weeks into use. My doctor had me get off the drug for 3 weeks in case it was the flu, that is what it felt like at first. Upon restarting, I again got the joint pains and they have worsened. It is hard to tell in the crazy weather we have been having, how much of the pain is from Forteo and how much is arthritis pain, however, I never had the arthritis pain in every bone in my body every morning. It mostly goes away after a hot shower, but when I wake up in the morning it is excruciating pain. My doctor recommended "water walking" but so far I cannot find a program that is affordable and at after work times. I wish there was an optional lower dosage of the Forteo available because I am hypersensitive to all drugs and I'm sure this one is not an exception, therfore I don't need as high a dose as the pen administers I'm guessing.

Linda

4/ 2/08 10:20pm

I don't think there are any alternatives to the standard dosage. When I was having such severe problems, I asked the doctor if I could do alternate days or a week on and a week off, or some other variation. The answer was no. It has been tested for a certain protocol and that is the only choice. I have been off forteo now since Oct. 3 after being on it for about three months. I still have some ankle pain, but otherwise am much better. I do hope you get some relief.

H. Dewees

4/ 4/08 12:06pm

Ladies,

I'm a nurse who has been on Forteo since 12/08 after losing ground with Fosamax for 5 years. So far so good with the Forteo. I have had some increased muscle cramps & initially had bone pain, but nothing I can't tolerate. There is an IV drug called Reclast that is given once a year. It too has some hefty side effects initially from 3 to 14 days. You would have to have in-depth conversations with your MD prior to using it, but the research sounds good. If the Forteo hasn't helped after 2 years, I'm sure my MD will suggest it next. Will I use it-??? Do keep doing some exercise like Yoga to keep your balance good & hopefully reduce fractures by not falling.

Be well.

HTD

Janet

4/26/08 2:36pm

Hi< I am a 59 year old woman and I am a 2 time cancer survivor and last April my Dr. put me on Foreto and after useing it for 11 months I went off it and was in Nov then in Dec I started having trouble with my right leg again so I went back on the forteo and a month ago I started having pains in my ankle and my chins and I mean it was a throbing pain that kept me awake at night. I would get up of a morning and didnt have any pain and after I took my forteo shot about1 hour later I started having the pains agai. This morning I decided to stop taking the forteo again and my ankle or chin or back isnt hurting. I went to my Dr last week and he did a ultra sound because he said it sounded like I had a blood clot which it showed I didnt andmy ankle kept hurting and I couldnt alk on it and started useing a walker that is why I decided this morning to see what would happen if I didnt take the shot and it is so wonderfull to not have the pain. So yes I have the same problem as you

Judy Miller

5/23/08 8:06am

Hi,

I've been on Forteo for l yr. Just had my dexa to learn if any improvement. Suffered pains in legs, especially calves after two months of daily injection. Went off for one month--within days of stopping injections, pain in legs stopped. Dr. put me back on, but on an every other day injection, which I've been compliant with for the past 10 months, with no leg pain. Hoping my density has improved as I am 2.9 sd below normal in both hip and spine.

Judy

Jacqueline Zook

5/23/08 12:33pm

I am very interested to know Judy's DEXA results after one year with alternate day injections for 10 months. My symptoms are much the same, immediately after starting with Forteo with worst in knees, but stop if I skip a dose. I am very sensitive (overresponsive) to medication, anesthesia, etc.Since the "lone protocol" is what it is, and MDs know nil, one is dependent on anecdotal experience of others if one does not fit the median mold.

Please respond to: gjzook@sbcglobal.net

Jacqueline Zook

5/23/08 2:18pm

re: Forteo side effects and dosage
Jacqueline Zook
Friday, May 23, 2008 at 12:33 PM

I am very interested to know Judy miller's DEXA results after one year with alternate day injections for 10 months. My symptoms are much the same. They began immediately after starting with Forteo with the worst in knees. I am very sensitive (overresponsive) to medication, anesthesia, etc.Since the "Lone Protocol" is what it is, one is dependent on anecdotal experience of others if one does not fit the median mold. Also, since the price of Forteo is "what it is", it seems very wasteful to throw away the pen after 28 days. Do you use the same pen for 2 months?.

Please respond to: gjzook37@sbcglobal.net Hoping to hear from you soon, and thanking you for your response. J.

Jaqueline Zook

5/23/08 2:24pm

Hi Judy, Please ignore the first message (e-mail address). We neglected to put in the number 37 in the address. The gjzook37@sbcglobal.net is the correct address. Thanks again. J.

Anonymous

3/ 2/09 5:07pm

I also am having side effects of knee pain, leg pain, and low back pain. I also have started having some vision problems. I mentioned the knee and back pain to my dr but was told that it is not a side effect of the drug. I feel like they don't want to hear what problems we are having once we start the drug. If we don't report it to them, then how do they know if it is a side effect of the drug or not. I am very irritated right now. I contacted Lilly and the person I spoke with was rude. I will not be contacting them again. You can contact me at katibeth56@gmail.com if you have any questions about my side effects. Thanks

CMV

7/26/08 9:35pm

I have had the same exact side effects after using Forteo for just several weeks. I can hardly walk and just stopped taking it last night on the advise of my g.p. Feeling a bit better today. So glad I read your post.

Linda

7/29/08 10:06am

Do consider alternatives. Since going off the forteo about 8 months ago (after three months on the forteo), I have been on boniva. My doctor also prescribed 50,000 IU of vitamin D weekly until my vitamin d level got above normal, then I went on that dosage every two weeks. I am also taking a multivitamin and 400 IU of D daily. To make a long story short, I have actually built bone and went from osteoporosis in the spine to osteopenia. The hips are still osteoporotic, but improved, with the right hip just at borderline. The doctor says I have not been on the boniva long enough to have experienced the improvement from simply slowing reabsorption of bone. In her opinion, I have actually built bone due to the fact that my body is now able to use the vitamin d to absorb calcium. Here is a side note--we could not find out why my body was not retaining the vitamin d and I was tested for celiac disease. The test came back negative, but there are a number of false negatives for the test. The only reliable test is biopsy, which I did not want to do. Then I went back on L-glutamine because I had been told years earlier that I had "leaky gut" syndrome. The month after I resumed the L-glutamine, my vitamin D level had improved. It is now comfortably above normal and my dexa is improved. . .so I am clearly absorbing and using the calcium that I am taking. Good luck! Keep being your own advocate. We have to keep digging and learning and questioning. I am fortunate to have a wonderful insightful doctor who is a pretty good sleuth and who is receptive to my own inquiries and investigations.

Anonymous

7/29/08 9:25pm

A friend showed me this site, and since I'm a Forteo user, I am very interested in these posts. I am finishing my 20th month, and have had some improvement in my DEXA scores. My main problem with Forteo is change in my belly--- I have gained fat there in a configuration I can only call a "beer belly." I am not a beer drinker. I was in another support group where several people said they had something similar, but that site disappeared. I wrote Lilly about this side effect; they wanted names and addresses of any with similar side effects. Rather than do that, I'm letting friends in support groups know that Lilly is interested. You can send your experience to Eli Lilly Co., PO Box 618, Indianapolis, IN 46209-9965. If I'm not unique in this one, I'd like to know, too.

Etta Ruth

Linda

7/30/08 6:01pm

I did the same and never had a belly before. My doc said that it is just age. . .I don't know. . .I realize that I only used it for three months. . .but I never had a tummy before. Also, my stomach itched like mad for a while after.

Anonymous

7/31/08 10:12pm

Thanks, Linda. It's good to know I'm not the only one with this side effect. Was this the reason you were only on Forteo for 3 months? Or was it the itching? I haven't had that effect, although I do have a very itchy scalp and am allergic to lots of things.

I'll be finished with Forteo in October; then I'll have a battle with my rheumy, who wants to put me on Reclast. No way will I put a whole year's worth of bisphosphonates into my body in one dose!

Etta Ruth

Linda

8/ 1/08 2:40pm

No, it was pain, dizziness, etc. See the first post in the series. Take care and good luck.

Michele

10/ 5/08 9:04pm

I lost 25 pounds on Weight Watchers, then while I was in the maintenance phase of WW, I started Forteo (Oct. 2007). I put 5 or 6 pounds back on, all in my abdomen where I was giving the injections. I switched to injecting in my thighs. I've had little luck losing those extra pounds. I am now on a strict WW eating plan for weight loss (not maintenance) to see if I can lose those pounds. I refuse to buy bigger jeans! My bone density test have not shown any improvement though. I too am on 50,000 IU of Vit. D every two weeks now; previously every week. The last time I saw my endocrinologist, he took blood; the results apparently showed that I was using the Vit. D and that the Forteo was working. I will have another DEXA in Jan. 2009.

Anonymous

10/ 6/08 9:18pm

Would you be willing to send a report of your experience with weight gain in the abdomen to Eli Lilly? I posted their address awhile back. When I told them I had this problem they wanted me to give them the URL of the support group and the names of those who had also suffered from enlarged belly. I didn't want to do that, but if you want to let them know, you could mention my name as another sufferer (it's Etta Ruth Weigl in Oberlin, OH).

I just got my last pen, and will see my rheumy in a couple of weeks. I've been having a lot of back and shoulder pain recently, and wonder whether Forteo has increased my arthritis. With my last Dexa it showed some improvement; I hope to have another as I finish, so I'll know where I am as I start on without it.. As I think I said before, I'm leaning toward strontium citrate; since the FDA doesn't approve of that, I'll be on my own. Several I've contacted through support groups have had some success with that. I don't want to risk the bisphosphonates, and that includes Reclast.

Etta Ruth

Michele

10/ 7/08 12:35pm

Yes, I took down the address for Eli Lilly that you included in a previous e-mail and I plan on sending them a letter this week. I am also going to suggest that they tell women to inject the Forteo into their thighs and bypass the abdomen altogether. It's very depressing to lose all this weight, buy new clothing, only to have the clothing become tight fitting around the waistline because of this drug! There are too many other women out there who have experienced weight gain in this injection site for it to be an isolated incident!

Annie

9/29/08 3:13pm

I have used Forteo since January 2008. I have develped severe foot and leg pains. The pain in my leg is in th shin area as described in another message. I haven't had any of these problems until taking Forteo. Now, I can never walk without pain and a limp. If it gets worse, I'll not be able walk at all. I'm 60, working full time, so this really scares me. I've tried to find out if Forteo has caused this with no luck. I also have developed high calcium levels in my blood. I know Forteo can cause this, and high calcium levels can cause the bone and muscle pain.

Cathy

11/29/08 3:25am

My mother was on forteo for 3 months when she passed away. Has forteo been linked to heart attacks?

H. Dewees

12/22/08 10:15am

After a year of daily injections with Forteo, I'm happy to report my spine has gone from osteoporosis back to osteopenia! My hips are improving at a slower rate & my wrists have gotten much worse. I'm happy with the spine report as I have progressive scoliosis & need all the support I can get in my back. I hope this encourages you who are sticking it out with the Forteo.

Morgan

5/31/09 2:25pm

I started Forteo 1 1/2 months ago. The first month I experienced cramps in my legs an ankles. I would try everything to make the pain go away -- nothing worked. I also noticed that I started having lower back pain and problems sleeping. The worst side effect I am experiencing is my high blood pressure. I had been taking .2mg of clonidine twice a day for quite a while and it was working really great at keeping my HBP under control After starting the forteo, my HBP starting climbing. I am stopping my forteo as it will (or seems) that that is the only way by HBP can be controlled. My doc tried putting me on other HBP drugs; however, that wasn't working either. I would be interested to know if anyone else has had problems with their HBP because of the forteo. thanks.

Anonymous

11/ 7/09 4:24pm

I am 76 and started 3 months ago on forteo I have terrible pains in my shins doc said it was growing pains from drug another doc said it was tendinitis and gave me 2 cortizone shots. I have not exercised in two months and really feel a need to do so. I also get stabbing paim in my heels and ankles on and off. Is there anyone out tghere who has had this Please write

Lora

10/ 5/11 12:18pm

Hi. I am currently on my 6/7 th week of Forteo. I have been having bone aches, shooting pains in my legs, also severe cramping in the morning in my feet and legs. The cramping seems to go away after I walk for about 15 minutes. However the bone ache in my hip is pretty much always there.

I do know that my Osteoporosis is the worst in my hips, and think/hope that this pain is caused by the healing process. I can put up with this pain because it is not debilitating, and I don't want to break any more of my bones.

Last year I broke a couple of bones in my foot and then had a fall and broke my wrist in 3 places. That is when I was diagnosed Osteoporosis.

I was put on once a month oral medication, I think it was called Actonel. (sp)?

I was completely ill every month for up to five days and felt that I was going to pass a kidney stone. THAT is debilitating and interfered with my ability to work.

Putting up with leg cramps and hip pain from these injections, which I find easy and painless, is worth it so far.

Has anyone gone thru the whole 2 year regimen and come out with normal bone density? If not normal, what kind of improvement is your outcome?

Thank you.. Lora

Electric man

5/20/12 11:21pm

I am a 58 year male and was diagnosed with crohns disease in 1991 (at age 38) and for several reasons, one being several years of prednisone , I had some bone issues. I took fosamax for a few years for the bone problems but stopped when it started getting bad press. Early 2011 I was feeling better than the last ten years, working out, running, and biking. Crohns was doing great, etc. Then my primary physician, who is great, put me on once a day Forteo and the problems started. Within six weeks I could barely move, THINKING about exercise made me nauseated. Felt like my joints were on fire and random "nerve shocks" on arms and legs made it near unbearable to go to work etc. I am now on Cymbalta and Plaquanil for the problem. It is considered "Periphial neuropathy". I blame it on the forteo. Any one else have this happening?

forteo side effects

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