Has anyone who has been on Forteo not seen improvements in scores?

By b1
Posted June 26, 2008 at 7:21 am · 17 replies
In Osteoporosis medications

Hi,
I've been on Fosamax and now Boniva injections (every 3 mos). Neither med has helped my very bad scores. Some of my physicians say I'm too young to be on Forteo (46 y/o). Others say I should try it. I'm seriously thinking about doing so soon. Has anyone been on Forteo and not has increases in their scores?
Also I've been having a lot of muscle? pain (I feel like I've ran several marathons) in my legs. I feel like I have a lot of lactic acid in my legs but shouldn't. I think this began when I was on Fosamax and seems to be getting worst now on Boniva. Not sure it is related to either of the meds but thought I'd ask. I'm a life long athlete and I've never experienced this feeling. Thanks!
twenty6seven at yahoo.com
washington dc

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By KathyS
Posted June 26, 2008 at 11:53 am

I haven't been on Forteo long enough to know.. (6 mo) but I will say I took Boniva (pill form) and had horrible side affects... nausea, vomiting, severe aching down my arms and legs and then my bones felt fractured in my ribs and radiated down my arms and legs... they did run bloodwork the following Monday and discovered that I was allergic... so it's worth asking the questions...

As far as Forteo and it's gain... good question... I wonder the same...

By KathyS
Posted June 26, 2008 at 11:54 am

The only other issue with Forteo is that I was told it has only been approved and on the market for 5 yrs...

By windblown
Posted June 26, 2008 at 2:04 pm

Hi b1: I just finished my 2 years on Forteo and my scores are fantastic. I went from my lowest score of (-3.6 spine) to (-0.9 spine) last dxa.

When I had my first scan they only did the spine so I don't have an original score from 5 years ago for the hip, but my first hip score (1 year ago) on a dxa has stayed the same at -1.6 (total hip) femoral neck -2.3. I still find it amazing to go from severe osteo to my latest spine score.

If you haven't read the following pdf on Forteo it's very interesting.

http://www.ccjm.org/pdffiles/DEAL703.PDF

By Blues
Posted June 26, 2008 at 3:47 pm

I will have a dexa scan next month which will be a year that I have been on Forteo, I'll let you know when I get the results if there has been an improvement.

By dawner82002
Posted June 27, 2008 at 7:08 am

Wow.... your scores are encouraging. I'm a -3.6 in my spine (and only 48!) and took my first Boniva last week without much incident. We'll see how that works.....

By b1
Posted June 27, 2008 at 7:47 am

Hi,
Thanks for your responses! Yes, I'd definitely be interested in followup from those beginning Forteo (side effects if any, improvements in scores or no) Thank you.

twenty6seven at yahoo.com
washington dc

By windblown
Posted June 27, 2008 at 6:25 pm

Hi b1, Kathy, Blues and dawner: I forgot to mention that the only side effect I had over the 2 years from Forteo was elevated calcium. I had my calcium checked prior to starting Forteo and it was slightly elevated, but I decided to take Forteo anyway, and it remained slightly elevated throughout the treatment. Now that I've finished, it will be interesting to see if my calcium levels goes back to normal or not.

If you haven't read the Cleveland Clinic PDF on Forteo, I highly recommend it. If you look at the para on calcium, vit D and phosphorous, you'll see that Forteo *can* raise calcium and 1,25 (OH) D by 19% from baseline, and it lowers 25 (OH) D by 19% as well, so don't be surprised if you are one of those that happens to. This is a rare side effect, but you should be aware of it. Other than these 3 scores, those were the only side effects I had except for *excellent* bmd improvement.

Good luck to you all.

By robinette
Posted June 28, 2008 at 6:09 pm

Thanks much for the info and website with info re Forteo. The doc is considering it for me and, due to being chemically sensitive, will confer with my allergist. Am hoping to get started on it.

By windblown
Posted June 28, 2008 at 9:32 pm

Hi Robinett: Are your allergies with the bisphosphonates? If so, I've heard of many that have GI probs with these meds. Some people can't take them if they have esophageal or GI issues.

I hope the Forteo will be easier to take. One of the pluses with this is that it doesn't travel through you gi tract because it's injected sub q, and it's only in your system for 4-6 hours.

If you take Forteo or anything else, I wish you luck...

I'm glad the Cleveland Clinic paper helped!!

By Dandelion
Posted June 29, 2008 at 6:47 am

Dear B1,

I'm 49 and have severe osteoporosis. I was on fosamax for about a year but I couldn't tolerate it. I've been offered strontium ranelate. I've got fibromyalgia - muscle pain etc. I can't cope with side effects of anything on top of it. I'm due to see the consultant next month. The osteoporosis is in the age range 80-89 now since almost 10 years. Have small spinal fracture and fractured ribs. Trying to keep moving!

By Dandelion
Posted June 29, 2008 at 6:52 am

I not sure if I'll be offered forteo in this forthcoming appointment with the consultant. The only thing that I've come across on the web is an account by a young woman with severe osteoporosis that she was on Forteo for 18 months and that her bone density increased while she was taking it but when she stopped taking it went back to as it was before. It was a web page made by a young woman in her twenties. I don't know if anyone else can check this out. The other thing I came across is that on the tests on animals that it caused sarcoma whatever that means and I think it said that it is why it is not prescribed for longer. I don't know if anyone else has come across any information like this. Hope it isn't true!

By Blues
Posted June 29, 2008 at 4:49 pm

Dandelion, check out Windblown's post on June 26 and you will see a link to an article on Cleveland Clinic's website. Excellent article on Forteo.

By windblown
Posted June 29, 2008 at 5:32 pm

Hi Dandelion: Strontium Ranelate is similar to Forteo in how it works, but I've never taken it because, as you know it's not approved here in the U.S.

I took Forteo for 2 years and had excellent results. I started out at -3.6 in the spine, which is considered severe osteoporosis. I'm not familiar with the way they describe t scores in your country.

I've had 6 fractures of the spine and now my t-score is in the normal range which is really great at -0.9. I didn't have any side effects and because Forteo is a sub q injection it doesn't go through you intestinal track like the other meds which can cause GI probs.

I'm curious, is the lady that you are referring to called Leslie, and she had a yahoo community group called "Young People get Osteoporosis Too"? Let me know, if this is who you are talking about. She was a pediatric nurse before contracting osteo.

Anyway, I *highly* recommend Forteo, but only *you* can decide which treatment is best... I'll post the link to a really good paper from the Cleveland Clinic that explains the whole process. Please read the portion on the clinical studies carefully, because the rats that contracted cancer did so because they were given a extremely large dose of Forteo over their lifetime which is the reason they got osteosarcoma (bone cancer). In a second study they gave the rats the same amount of med that we take (20 mcgs) over a 24 month period and *none* of the rats contracted cancer.

Fisher rats are predisposed to bone cancer at a rate of 1-3 in 1,000, so the incidence of this in rats is much greater than humans who contract it at 4.5 in 1 million.

Read the following link and it will explain all the differences between the rat/human studies.

Good luck with your treatment, and if you have any questions, don't hesitate to ask any of us. If you need any more info on Forteo, just let me know. The FDA has a link on it as well, but it doesn't explain it as well as the link below, but it's still very informative.

http://www.ccjm.org/pdffiles/DEAL703.PDF

By KathyS
Posted June 30, 2008 at 5:59 pm

And I didn't notice anyone address the score in the young woman returning to her original score after going off of it...

My doc said that after the time I've taken Forteo that I will need to take a pill to maintain the gain from the Forteo because it won't cure osteo. You will lose it if it's not maintained...

By windblown
Posted June 30, 2008 at 9:01 pm

Hi KathyS: I'm not sure which one of us you are talking to, but I've talked to 1-2 people who's score went back down after finishing Forteo, but it was about a year after stopping it. I have always been told, and I think it say's the same thing in the Cleveland Clinic article that after finishing Forteo you need to continue on some bone med to maintain your scores.

From all that I've read they recommend a bisphosphonate after finishing Forteo, but I didn't want to take that, so I went on Evista. Evista isn't considered a first line of defense among the osteo drugs, but I had problems with Actonel that I can't handle long term.

In the Cleveland Clinics article it does mention how long the benefits lasted in the clinical studies they did, but off the top of my head I can't remember the stats on the patients in the Forteo group. I've talked to one man who is only going to continue with natural treatment now that he's finished Forteo, so I guess the decision is up to the individual, but I've always been told you need to take something (bone med) after you finish Forteo. If you want to read about this topic, just look up "sequential treatment with Forteo". There are lots of studies on the various drugs that were used post Forteo and how each one worked. Hopefully within a year or so some new drug might be available to take after Forteo like maybe Denosumab, or something else. I haven't talked to anyone yet who's score got worse with Forteo, but I'm sure there's someone out there like that, and I've talked to quite a few people on different support groups over the last 3 years that were or are on Forteo.

Good luck to you!!! I hope your brother is doing okay!!

By LibbyDubby
Posted July 21, 2008 at 10:13 am

I was on Forteo for 7 months (a few years ago) and I had no improvement. I was very, very disappointed.

By Nita
Posted July 26, 2008 at 12:20 am

I took Forteo for two years and just finished the regimen. The first year, my scores improved but only slightly. This second year my scores went up 17% and moved me from the osteoporosis category to the osteopenia category for the first time in 9 years. I took Fosamax for the first 7 years with only minor improvements. So those of you who are disappointed after a few months or even a year of Forteo, hang in there. Another year can make all the difference.

Has anyone who has been on Forteo not seen improvements in scores?

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