Member Interviews: Taape's Experiences With Forteo

Hi Anxious in Alabama, I'm sure Taape will be along soon to give you some help, but in the meantime I thought I would tell you about my experience with Forteo.  I took Actonel for apprx 1 ½ years and only saw a very slight improvement (0.2%).  Once I started Forteo I saw tremendous gains in 1 year.  Since we all react differently to these meds, it's hard to saw how you'd do, but this was my experience and that of many others I know.  Here's a Question of the Week on Forteo that you could read to see how others did.  I also didn't have any side effects.

My ovaries aren't producing any estrogen but I still saw these gains without taking supplemental HRT.  Talk to your Dr. to see if Forteo is right for you and read as much as you can about it.  The price you mentioned for Forteo is much less expensive than it is in my area, so I hope your insurance will cover it at a low copay price.

Here's a link on Forteo from the Cleveland Clinic that is very good.  Read it and see what you think, it explains how it works and the precautions you should watch for.

Good luck...

I have read all I can pull up on the internet about Forteo.  My copay will be $50.00 which is very doable.  My REAL concern is if I take the Forteo and my numbers do go up, what then.  All I've read stated that if you didn't take Fosomax after taking the Forteo you lose what you gained.  Fosomax did not help me when I took it before.

The reserach I have done on it has convinced me that it is not something I want to take again.

Also, let me clarify I wasn't on oral HRT, I have been on carefully measured doses of Estrogen and Testrosterone in a cream that you apply to the skin.  I have had blood tests to determine the dosages.   I don't expect a miracle.  I think bone loss is a very complicated process and each person who has osteoporsis may have a different missing component.  What is causing my osteoporsis, may not be what is causing yours.  

My decision:  Is the risk (however small) in taking the Forteo worth a gain in a number that may only last 2 years?  I am not in pain or breaking bones.  I don't feel fragile.  I carry my grandchildren and have been white water rafting this summer. 

If, in a few years, I do become fragile and NEED the Forteo, what then, it can only be taken for 2 year period in your lifetime. 

I guess I don't want medication, I want to know what is causing the bone loss and

then treat the cause.  Is that too much to ask?

Hi Anxious, I understand your reluctance and concerns about post-Forteo treatment, that is something we all have to think about when we take Forteo.  I'm taking Evista, because I didn't choose to take a bisphosphonate after Forteo.  I won't know how I'm doing until I get my DXA results, but I did go from severe/established osteo in the spine to normal bmd and osteopenia (spine/hip).

Some of us are waiting to see if Prolia (aka Denosumab) is approved by the FDA since it's a different class of drugs from the bisphosphonates.  Here's an article on Prolia if you'd like to read more, and a follow up on the latest with the FDA written by our patient advocate PJ Hamel.

Taape is on her 2nd course of Forteo, so read her interview which explains this.  I know that the FDA only approved Forteo's use for 2 years, but some Drs are prescribing it when there is no other option for treatment and the patients DXA scores warrant it.

I know this is a tough decision, but you'll have to decide what you want to do after Forteo, if you decide to take it.  Doing nothing isn't a very good option, but hopefully something new will be available by then.

Good luck...

Dear Pam,

You do give me some hope about the Forteo.  I didn't think about taking Evista post Forteo.  I haven't taken that. 

I don't mind taking the Forteo.  All of our family is out of state and it will be inconvenient when we travel, BUT I don't want to be all bent over later either.

I need to put more thought into this decision.  I do appreciate the comments and insights that the women on this site have given me.  The personal experiences of the women actually taking this drug is SO much better than a Dr telling you something about it.

Hi Anxious in Alabama,

I understand your concerns about using Forteo now for 2 years when you feel that you do not need it since you don't have pain. Has your doctor given you an xray to see if you have any spinal fractures? I don't have pain either but found out that I have 3 spinal fractures so I am really glad that I'm being treated with Forteo again.

The strategy my doctor used to eventually convince the insurance company to approve a second round of treatment would be that I would be treated with Forteo for 2 years in line with the guildelines (since I was off of it for 3 years). It would just be another two year period not a continuation past two years. I hope that makes sense.

As far as traveling with the Forteo it isn't that inconvenient. When I travel by plane I use the ice chest and ice packs and bring the pen along and store the cooler inside one of the closets inside the passenger part of the plane. If I'm taking a car trip I take the cooler along and bring extra ice packs which can be frozen and rotated with the melted ones. I hope this information is helpful. If you have other questions feel free to ask.

I had an MRI done and much to my great surprise I had many spinal fractures.  I didn't (don't) feel a thing!  That's how I got to take Forteo and got it paid for by my Insurance company (who made the decision if I could take Forteo or not, not the mean nasty gov't) I'm on my next to last pen and I have to decide what I'm going to take to maintain my new bone.  I just had a DEXA last week, but I won't know the results until I see my endo Dec 10.  Of course, they wouldn't give me a copy it.  I just make the co-pay.  I'm very interested in Prolio (denumosab), for the future.  I think that fosamax is what I'll be taking although I have some heavy duty dental work coming up in the very near future and my dentist is waiting to see what I take or I won't start the new drug until after dental work.  

Hi Raven good luck with your DXA...  They won't give you a copy of it???  You have a right to it, can't to tell them that many others (most) imaging centers or hospitals always give out or mail the printed DXA results to the patient.  I would demand it, if I had to, but it's always been given to me.  If you can't get it from the place that performs the scans, you should at least be able to get a copy from your Dr.  You are entitled to copies of all test results under HIPPA.

Let us know how you do-OK?