Hello. Thanks for writing. Welcome to our community.
You're not being over aware at all. Forteo can cause some significant side effects, bone pain being one of the most common. See:
Forteo: Do the Benefits Outweigh the Risks?
Let me know if I can help you find more information. Keep us posted on how you're feeling.
I'm looking for help and found this website. I'm female, age 60 and fractured my hip/femir last spring. I was then diagnoised with severe Osteoporosis and had a -4.7 bone scan. I have been taking Forteo for almost 3 months. I am having moderate to severe joint pain. Mostly ankles and knees. Along with the joint pain I have the stabbing random pain in my bones along with pain in my shins. As I read the posts I understand my symptoms are not unusual BUT what I'm looking for is what to do about the side effects????? I occasionally take Naproxen but it doesn't help. Do I stop taking Forteo and deal with soft bones or live in pain? Neither are good options. Any answers out there from real people who took/take Forteo and found relief? I hesitate calling my doctor as I think he will just give me pain pill. Any thoughts??????
Please look at my post under Linda's messages about her side effects, as well as my Share Post.
I began using Forteo on September 1, and around September 20 began to experience side effects similar to those you have described. They grew worse and worse, becoming incapacitating, and I stopped using Forteo October 6.
Although I stopped using the drug, the side effects have not gone away.experienced side effects from Forteo similar to those you have described, beginning around September 20. I began using Forteo September 1. Although I stopped using Forteo on October 6, the side effects have not gone away.
If you haven't already done so, I'd suggest you talk with the prescribing physician as soon as possible.
My doctor is recommending that I go on Forteo, however am very hesitant because of the side effects. Are you still having the bone pain? I was on Fosomax (weekly pill) for osteoporosis and had side effects similar to what you have experienced with the Forteo, however not only did my bones hurt, I had awful muscle stiffness, I was actually down in bed two different times for a couple of days because of severe back aches. So I am very concerned about the Forteo. Have your symptoms lessened, stayed the same or have you stopped using the Forteo?
I have been on ForteO for about 8 months - I also have been having
rashes on on my head and chest . The rash on my head is the Worst !!
Also running low fevers ... and head aches ...[maybe from the fever]..
My nails starting splitting - always had great nails..
I just don't feel well - and want to sleep all the time -
I am going to stop taking Foteo .. I stopped for 2-3 weeks -
and the rash symptoms - cleared up by 50%...So I am sure it is the
Forteo.... I really worry about breaking a bone in my spine - thats the only reason I
have stayed on Forteo this long - From my own experiences and what I am reading
this just doesn't seem like a safe drug...
My mother has been on forteo for approximately nine months now. She has has a few rounds of extremely uncomfortable rashes. The worst one was when she first started. She did not complain of low grade fever but not out of the question. Definetely less frequent but still periodically does get them.
I have been on Forte for 2 months, I have in the last few weeks had sharp pains, which feel like they are in my bones. They are quick, but all over, even hands, mostly thighs. Leg cramps all the time.
I will stay on it if I can, I am determined to get my bone density back.
May I ask what your T score is? I'm 57 and was diagnosed 6 years ago. My hips are -2.5. I'm terrified of breaking something but am equally concerned about all of the side effects from the forteo. Unfortunately no one seems to refer to their T scores so I'm not really clear as to how bad -2.5 is. Is is worth the possible down side of Forteo. How are you feeling now? Do you know if it has helped. Thanks for any info.
You know, I don't know my numbers!! I should, I do remember they weren't good, I have been lucky, I took a bad fall this winter, and didn't break anything. I need to get those numbers, thank you for mentioning it.
After my post, the pain in my bones on forteo got so bad, I could barely function, I have tried twice, going off for a while, then going back on, hoping it wasn't the forteo, I am off it right now, and much better. I have not talked to the doctor about this yet. I work a lot and .....well....poor excuse but I get tired of office visits. I am going to give it one more try, but having a hard time working up to it.
My hips bother me a lot and my lower spine. I started doing Yoga 10 months ago. Self taught and it helps, when they did my last bone density, it was some better. I am self taught, but practice 30 mins a day. I am a firm believer in it. I had lost mobility in my shoulder, went to a bone docotor, they were talking shots, I said let me keep working on it with yoga. I have gained full use/movement in my shoulder. I also am 57.
I have a high tolerance for pain, but, I really don't think I will be able to do the Forteo. My legs are still bothering me, but at least I'm not living on ibuprofen. I don't think everyone has that reaction to it. I am on a hormone patch, have been since I was 40. I wonder if it isn't the combination of hormones.
Let me know how you are.
Thanks for the response Sorry you are having so much trouble with the Forteo. Although I understand the relieve of falling and not breaking anything! I also have been on hormones since 42 - I think my early menopause is part of the problem. I also had vit D issues which seem to have been dealt with. Unfortunately I'm barely holding on to a -2.5. I have an additional - serious issue - that I hadn't mentioned re: the Forteo. 4 years ago I had a chondrosarcoma removed from my let. For this reason my doctor says I'm not a candidate for Forteo. However, if my bones are going to continue to dissolve I sometimes wonder if it might be worth the risk. My curiousity about your numbers is based on me not really having a clear idea as to how bad my situation really is.. Thanks for the communication, it helps.
This may show up twice, not sure it went the first time. When I go to the doctor I will be sure to ask about my numbers.
I have seen on the net an ad for once a year treatment, and maybe they will improve the Forteo' At least if you try and it works...great!! If it hurts...well at least you know. Are you exercising? I know walking would help, but I haven't added that yet. I don't worry as much about falling, I understand that usually we get "hit" by the things we didn't see coming, so keep it in perspective. Don't give up, the right treatment if not out there yet, will be.
Do you experience pain now?
I have minimal if any pain. I walk and lift weights - always have. That's what's so frustrating. No one was more surprised then me when my DXA scan results came back. I think your right. I'll wait for now and try not to obsess over it. They do seem to be coming out with new things all the time.
I was surprised by it also, but they said I fit the criteria, small boned, thin. (their opinion :) )....
I has a friend who was walking her large dog, she was really thin, well dog tangled her up started running down, she went...oh brother....did she break bones...
She was only in her 40's
So at least we have some warning. Lifting weights is one of the best things you can do. I know I should, use to, but too much shoulder pain, so just doing the yoga, and some calcium. I still have hopes that we can work something out with the Forteo'
I guess it is time to visit with the doctor again.
I have been on Forteo for about 2 1/2 months. The pain in my legs is so bad that I have trouble walking, feels like the bones are going to snap in half. My fractured vert's in my back are much better but the leg and hip pains are much worse now. I have another bone den. test coming up and hope it shows some signs that bones are getting stronger and I can get off the Forteo. Is there any side effects if you just stop taking it?
There are no side effects associated with stopping Forteo. I had a reaction in September after 9 months with no real problem except weight gain in my stomach area. My Doctor took me off for a month then restarted the medication again. Aside from being terrified about having another reaction, things are going reasonably well, and I have a BMD scan coming up in teh next month or so.
My denisty test were about the same as they were before I started treament aprox 6 yrs ago. I take Flosmax (took it before the forteo also) again once weekly and am on extra dose's of calcium and vit d. I have been keeping up my walks and exsercise's. I am on disabliaty so I go to a family clinic and see a diff doc just about every time I go in. Should I seek an Ostioporsis doc?
Hi Wendy - My family doctor referred me to an endocrinologist to deal with my osteoporosis. You may want to see if you can get a referral to one in your area.
My mother (68 years old) was on the Forte Injections for 18 months or so. Today she's flat on her back, she cannot walk. She's having severe back, hip, neck and arm pain. After having a bone scane in June 2010 we were told that she has cancer on her right humerus and letf scapula, T8, L2 as well as several other places on her spine. We feel that this cancer is directly related to the forte injections that her doctor prescribe to her for so long. She complain to her doctor about her back pain serveral times but nothing was done or changed except she was give pain pills. The forte injections continue with deverstating results.
My family and I would like to file a class action suit. Let me know if there are anyone out there who may have experienced similarly problems.
I am so sorry to hear about your mother. I have not started taking Forteo yet....but, am contemplating it now. I am 54 years old female with T scores in the -2.0 through -2.5 range. I have had 2 back surgeries (fusion L4-L5) and recently suffered a stress fracture (right fibia above the outside of the ankle) mid-April and last week I re-fractured the fibia...at the same place.
I got really scared and thought I needed to be more agressive. I saw the endocrinologist today (July 8th) who suggested I take Forteo.
After reading your comments, I have decided not to take the Forteo injections. Not sure what to do now.....but, I will keep searching.
Thank you for sharing...I know it must be very difficult to bear. My thoughts and prayers go with you.
Good for you! You will be much better off not taking those injections. I wish a thousands time that my mother would have never taken Forte. I truly believe that she would be up and running around if it was not for those injections or should I say the lack of attention and follow up she received from her doctor. Instead we are hoping that she will be able to withstand the stress radiation and chemo she's about to start in the next day or so. It's heartbreaking and very sad to see her in this condition.
Take care and thanks for listening!
I was on Forteo for a year 2008-2009 and had a lot of bone pain, which my doctor said was probably NOT related and that you shouldn't feel bone pain with arthritis either, so what was it then is the question. I refused to be on Forteo the second year and also declined the Fosimax for maintance. My t scores went down a little in my hips and neck after the year, but less improvement in back area (-3 and holding). I'm going to continue on my healthy eating regime and exercise program rather than mess with drugs that I feel women are being guinea pigs for the drug companies. And by the way, on three major TV networks last night, simultaneously, there were Viagra ads. I was disgusted. Do I think "they" care about women's health and happiness, NOT. Ps: Now I have been having jaw problems the last 4 months, trouble opening my mouth wide, trouble biting down evenly, but not all of the time, it comes and goes. I'm going to my dentist first before I say anything else.
Yes check with your Doctor regarding your jaw. I read in some of the post regarding Forteo that many are suffering from Jaw pain. Continue to exercise ...walking will be really good for you. I would also encourge you to have a mri or a bone scan of your spine and hip. Take care!
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