Questions about Forteo side effects

By Mufasa Saturday, November 03, 2007

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Hello, everyone!

I am writing in the hope that some of the experts or other current or former users of Forteo can help me.

I began Forteo treatment on September 1, 2007, and stopped using Forteo on October 6, 2007, because of side effects very similar to those described by Linda in her post. Before I began using Forteo, I was a strong, basically healthy person who walked several miles almost every day, lifted weights 3 to 5 times a week, and lived a very active life.

Beginning around September 13, I began to experience severe leg cramps. I didn't take this very seriously, because I have experienced leg cramps since I was a small child, and the patient information kit indicated that I should expect this to happen, at least for a while.

Starting on September 20, I began to experience horrible pains in my lower back, which grew worse and which became incapacitating. By September 27, I was unable to bend at the waist, stretch, stoop, or reach out without dreadful pain in the sacral region.

I also have very bad spasms in my lower back and hip. These have become absolutely excrucating. My right knee and leg have become weak to the point that the leg cannot bear my weight. For several weeks, I been unable to get out of bed unassisted or to get out of a chair unassisted. Because my right leg will not bear my weight and my right knee has become unstable, I must use a cane to walk.

Even though I stopped using Forteo on October 6, the symptoms have not gone away.

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! I am unable to care for myself, my household, or my pet and I am frightened and getting desperate.

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Comments (16) | Add comment

Lila de Tantillo, Health Guide

11/ 4/07 12:55pm

I am so sorry to hear about your difficult experience with Forteo. I hope some of our fellow readers who've taken Forteo and overcome the side effects can share their perspective with you. Take good care.

Subha

9/21/10 4:20pm

Mufasa,

Did your side-effects caused by Forteo go away on its own after stopping it? Did not see a follow-up post by you...

My mother who is 68 years old, is having the same symptoms like you have mentioned, after being on Forteo for 2+ months.

Thanks,
Subha

Sally Fleshman

11/ 5/07 10:13am

Background: 75 yrs old - foot surgery in July

'07 - f.u. w/internist; diagnosed w/ostoporsis - recommended Actonel - 35mg once a wk - felt worse - foot not healing - swelling - excruciating pain - right osteo-arthiritc leg more painful - shooting up to hip - sleep interrupted at night - difficulty in getting up from chair - and walking - Rheumatologist recommended go off a wk to see if medication is causing it -

pain has lessened but still can feel pain in leg -

also have vitain D deficincy in body - taking Vitamin D w/calcium 3 times a day

any solution to what can be taken with less

side effects for the osteoporosis?

Lila de Tantillo, Health Guide

11/ 5/07 11:54pm

Another tough situation. I'm sorry to hear about your difficulties, best wishes as you narrow down the right solution!

Gene

1/ 9/08 1:50pm

My husband has experienced the same adverse effects from Forteo as you have and has finally stopped taking it. He is finally feeling a little better having stopped it only recently. He could not bend or stand up without extreme pain. This is a very dangerous drug.

Betty Juanita

8/30/09 1:14pm

How long has he been off the Forteo? I hope he feels better now. Has the pain stopped?

hroupas

3/ 8/08 10:53am

My mother also took forteo and experienced the same thing. She took it for three weeks and quit but still feels horrible and cannot move or get around the way she did before. What has been your experience since you posted last fall? Did you regain your strength? What did your doctor do if anything? Please respond. I am at a loss as to what to do.

Anonymous

6/19/08 9:33am

My name is Mary, and I also had a negative experience using Forteo. I experienced leg cramps at night which created problems sleeping and began to lose weight as my parathryoid began to over react. It took about three months before I began to feel sick and had to frequest the bathroom as whatever food I ate, it left me right away. I recently broke my wrist when I feel shopping. I wish that a product would be created that would not have so many negative side effects.

DEBBIE

10/28/08 2:03am

I HAVE BEEN USING THE FORTEO PEN FOR OVER 2 MONTHS WITH NO SIDE EFFECTS AT ALL. I WAS ON 3 OSTEO MEDS PLUS CALICUM BEFORE ENCLUDING FOSAMAX, EVISTA, MYACALCIUM. I HAD A SMALL FRACTURE IN MY PELVIS AND SINCE TAKING FORTEO IT IS HEALING NICELY. I HAVE NO PROLEMS WITH THE ENJECTIONS OR SIDE EFFECTS. I AM VERY PLEASED WITH THE DRUG AND IT BENEFITS. THANK U FOR LISTENING.

Joan

4/ 5/09 9:44pm

Hi, My name is Joan and I am 68 years old. I have a genetic history of osteoperosis. Consequently, I was diagnosed twenty years ago. I started taking Fosomax in 1993 when it first was approved by the FDA. About tow years ago, I started taking Forteo and continued for 14 months. I remember that I had some thigh pain during that time but continued my walking, exercises and raquetball.

After I had been off the drug for a few months, I started getting thigh pain so servere that I had to give up my racquetball and walking exercises. Consequently, my endoronologist took me off Boniva. The orthopedic surgeon diagnosed the thigh pain as Ileotibial Band Syndrom and sent me to phsical therapy which I did regualarly for three months. As of today, I still have thigh pain and have no idea what is causing it. I am concerned that it is a result of the Forteo and other medications I have been taking for osteroperosis.

I would like to know if anyone else has had similar thigh pain and if there is hope that it is going to eventually heal. It concerns me that I am not on oseoperossis medication because I feel those medications have kept my T-scores stable.

Contact me at jshippen@comcast.net

SeaWench

7/28/09 3:14pm

Hello All,

I see some of these posts are a few years back but I have just started investigated what's online about adverse effects after taking Forteo and am scared about what I'm reading here. I was on the med. for 10 months and it did help me go from osteoporosis back to osteopenia in that time. Since I was only 55 at the time, last year, my doctors thought that was rather young to be in the category of osteoporosis so I agreed to take it. I had to start and stop several times because of joint pain, mild tingling on upper thighs and lower buttocks, and leg cramps but toughed it out and took forteo consistantly. Several months after stopping the meds since I got a good bone density test, the tingling in my thighs increased and so did lower backaches which I have had for many years but nothing to the extent I experienced since that time. It got to where I could not sit comfortably or lie in bed without ice packs to ease the pain. I am now on Tramadol for about 6 weeks and am having to increase the dosage this week. I have been to 3 doctors that say I have a slightly proturding disc but it shouldn't be causing this much pain, so they say. I'm starting to think there is a connections with the Forteo and of course no doctor is going to acknowledge that connection if there is one. The only position I am comfortable is standing and that's not possible at my job for very long. I was told to swim and that should ease the pain even though I told the last doctor that exercise seems to exacerbate the problem. I'm really depressed about this whole thing now and feel like all the doctor's want to believe is it's all in my head! Okay, I've vented. Are there others out there with this scenario? Thanks for reading. I just want my old self back old bones and all.

Anonymous

1/ 6/10 6:11pm

Hi - I am 58 years old and have been diagnosed with severe osteoporosis. After experiencing side effects to both boniva and actonel, my endocronologist has strongly and urgently recommended forteo. He suggests that if I do not use this drug, I will probably sustain a life-altering fracture within the next 5-10 years. My nutritionist, physical therapist, and GI doctor are very hesitant about my taking the drug and believe that I can improve the osteoporosis with diet, supplements, and exercise. After reading the comments of those listed here, I am terrified to take the drug. It is so sad that some people have experienced such painful side effects and these effects have not gone away even after the forteo was stopped. Since I had such negative side effects with the other drugs, I am wondering if I will have the same situation with forteo. I would like to hear from any one who has been helped with diet and exercise. Thank you.

Pam Flores, Health Guide

1/ 6/10 6:35pm

Hi Anon, welcome to the community. Hopefully our members who've seen improvements with diet and exercise will post here to help you out.

I just wanted to present another side of the Forteo story. Remember that there will always be more negative comments on any drug being discussed on the Internet. The problem is there are many, if not more, that did really well on Forteo with little or no side effects. I took Forteo and went from severe osteo (low -3's) to osteopenia in the hip and spine, plus I had previous fractures as well. I finished Forteo over a year ago and have not sustained any more fractures. That said, we'll all have differing effects from these drugs, but keep in mind that those who do well have little motivation to post about it on the Internet since I suppose they are out living their lives and don't feel the need to tell a positive story. Negative stories attract more attention for some reason.

Here's a thread we did with many Forteo users where you can get the other side of the story. I'm not saying there aren't side effects, but many don't experience this.

Also here's a link, from the Cleveland Clinic, that explains this med very well and how it works. You'll have to decide for yourself which is the best approach for treatment, just be sure to hear both the negative and positives. Forteo is a man made form of our own parathyroid hormone, so it's as close to the natural form as man can make it. If we were to have problems with our parathyroid gland you'd also see similar side effects.

Good luck deciding what to take and I hope whatever it is, you do very well on. I believe you just happened upon a negative thread so at least read the positives as well to get a fuller picture, and discuss it with all your Drs.

seawench

1/ 6/10 7:12pm

I would try all else first. I'm still not sure what has cause all my ailments, but I would not rule the Fort. out. I think doctors should stress that this serious medication should be the very last resort. Now it is hard for me to do the exercise part or sleep without pain....

Anonymous

1/11/10 1:59am

Hello Pam,

you are absolutely right about the tendency of people to post about negative effects - but not about the positive results of a treatment. Still there is one comment I have to make.

Some patients may look like they have regular osteoporosis. But in fact it is something else. I know several persons who suffer from a disorder called hypophosphatasia. It absolutely looks like osteoporosis in adult patients (not in children), and so these two conditions are often mistaken. The point is that patients with hypophosphatasia MUST NOT be treated the same way as osteoporosis patients. And that means: No calcium, not too much vitamin D, no bisphosphonates, and also no Forteo.

So I generally suggest every person who has been diagnosed with osteoporosis - and is obviiusly not profiting from the standard therapy - to have checked their level of "alkaline Phosphatase". An enzyme that is either lacking or shows reduced activity in this special disorder hypophosphatasia. An adult should have a level over 55-60 Units per litre (taken with the 37° C standard test procedure).

Thank you.

Pam Flores, Health Guide

1/11/10 10:28am

Hi Anon, welcome... I agree with you wholeheartedly. We should always check for secondary causes of bone loss along with the DXA etc. Here's and article I just wrote about secondary causes, medications that cause bone loss and tests to consider for an accurate osteoporosis diagnosis.

Thanks for your input and join us anytime, we'd love to hear more from you.

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