What would you do? Medication.

Posted by babs10 @babs10, Feb 12 7:18pm

Hi, I am interested in lay people opinions given I have received so much conflicting advice from MDs. It’s astounding and I’m sure I am not the only person who is confused and wary about any decision I make.

I am 68 years old and have significant OP – my T score is a -3.5. I was diagnosed in October. I knew I was genetically predisposed so have regularly exercised since my 20s and have maintained a healthy diet. Since the diagnosis, I have upped the frequency of weight lifting and the use of resistance bands and I am doing what has been advised in terms of diet and supplements.

My Plan D insurance will only cover Prolia and Forteo. I have decided against Prolia and am reluctant to start Forteo. Backing up a little, I enjoy adventurous vacations such bicycle trips and strenuous, long hikes. In September, for example, I hiked a portion of the Camino de Santiago. While training, I slipped and fell three times on big rocks and didn’t break anything. Last year, I took a bicycle trip in Europe. I tried out an electric bike which got away from me and I took a hard fall – it hurt, but no fractures. I know that my bone density is low as reflected by my low T score, but I also believe the quality of my bones is good, and the DEXA score is only part of the equation. One of my doctors said, “Oh, you did your own DEXA test.”

Like everyone, I want to avoid a fracture more than anything so I am willing to consider Forteo, but here is my concern: Is there a chance I might hurt the integrity of my bones by going on it? Might I inadvertently worsen my own situation by taking medication just to improve my DEXA score?

I also want a life plan that needs to last maybe 30 more years. We take a medication for a year or two, then switch to another medication for a year or two. Then what?? None of the MDs I have talked to have had a satisfactory answer. Maybe they are waiting for new drugs to hit the market.

I’m really struggling with the decision. I know I am the only person who can make it, and I will have to be responsible for the outcome, but I would really like to hear what thoughts others have. Thanks so much - any input is welcome.

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

babs10 | @babs10 | Feb 13 10:37am

In reply to @gravity3 "What did your endocrinologist have to say to your questions?" + (show)

Forteo is so expensive (my copay is $1920 a month up to the $8000 cap and I don't qualify for assistance) that he suggested I take Prolia, my only other covered alternative. I know I don't want to take Prolia.

He told me that Forteo is only 5% better than Prolia, and all he said about Prolia is that I might be sore at the injection site and to take a pain reliever before and after. He said Forteo is a good medication, though inconvenient b/c I like to travel and it has to be refrigerated. When I went in for my appointment, I didn't know I had OP and hadn't learned about any side effects of any meds. I have been spending the last month educating myself and am compiling a list of questions and will revisit this with him when I'm finished.

babs10 | @babs10 | Feb 13 10:47am

Thanks for all of this information. Personally, I don't have any numbers to compare so don't know if my declines were recent or not, but they are certainly dramatic. I appreciate your input - all of it makes sense.

windyshores | @windyshores | Feb 13 10:59am

@babs10 what about generic teriparatide?

babs10 | @babs10 | Feb 13 11:12am

In reply to @windyshores "@babs10 what about generic teriparatide?" + (show)

That's actually what I'd be taking. I can't remember how to spell it on the spot so I just use "Forteo."

ammaw52 | @ammaw52 | Feb 13 11:13am

Why are you against prolia? I had my 1st injection last week. Is it bad side effects?

babs10 | @babs10 | Feb 13 8:04pm

In reply to @gravity3 "What are your concerns about forteo? Will this be your first osteoporosis drug?" + (show)

Yes, this is my first medication and, in general, I am nervous about putting chemicals in my body.
My biggest concerns are 1) my ability to tolerate it, 1) effectiveness, and 3) the "after" plan which I can't get my arms around.

babs10 | @babs10 | Feb 13 8:12pm

In reply to @ammaw52 "Why are you against prolia? I had my 1st injection last week. Is it bad side..." + (show)

My understanding is that Prolia should be used if other treatment methods have failed . The National Women's Health Network suggests women try other FDA-approved osteoporosis medications prior to trying Prolia.

sandrajhunt | @sandrajhunt | Feb 14 6:03am

In reply to @gravity3 "What are your concerns about forteo? Will this be your first osteoporosis drug?" + (show)

I too am interested in Forteo opinions. My doctor has recommended Evevity or Forteo for my spinal osteoporosis but the possible side effects for both sound horrible.

babs10 | @babs10 | Feb 14 7:21am

Re: Forteo: Side effects are always a possibility with any medication. As I understand it, any finding that is reported must be included, but that doesn't mean you will have any, much less all. I'm nervous about this too because it's an unknown, but I'm at the point where I have to be willing to take a chance with fingers firmly crossed. Anecdotally, I know two people (not much of a sample, I know) who have had zero side effects and have also heard from several in this forum who also tolerated it well. I can't spend too much time focusing on those who had trouble b/c it terrifies me.

My insurance won't cover Evenity, but others with experience have commented in the forum.

gravity3 | @gravity3 | Feb 14 7:48am

In reply to @sandrajhunt "I too am interested in Forteo opinions. My doctor has recommended Evevity or Forteo for my..." + (show)

I have taken forteo, alendronate and now 1/2 way through the year of evenity. No side effects to speak of. Of course we are all different. I'm more worried about possible fractures than possible side effects.