FORTEO

[mollie carey]

Today I feel unwell, like my body has turned on me, everything over the past three weeks is starting to take a tole on my head. I feel like my body is crumbling and not strong, and now have to start forteo shots for my osteoporosis from my steroid use, because I broke a rib and did not do anything but turn quickly.  The forteo is black box but supposed to build new bone not strengthen bone you have. It has helped many people bring their bone density close to normal. Mine is horrid. Has anyone heard of this, or been on it? I have read some of the side effects and I concerned.

[gurs]

My rheumy wants me to also try this, as my bones are super bad..so scared to use any of that stuff, but my doc loves it.
She is really concerned about my spine...ughhhh..wish I had some answers....have to outweigh and risks and then the benefits.

Good luck

Gursie

[tamaran17]

Mollie,
the closest thing i have to personal experience with Forteo is my grandmother's experience. she had several AIs and parkinson's. she was on it for two years (?, whatever the recommended timespan is, she passed a few years ago so its hard for me to recall) and did beautifully with it. Her rhuemy started her on it after they discovered 6 broken vertebrae, that she never complained about hurting, during a chest x-ray to rule out pnuemonia. we never knew she had them! In relatively short order we noticed her bones were stronger and strong enough for surgery to repair her back. But they could tell all over via scans that her bones were stronger as time went on and we didnt need to worry about her breaking anything else. she wasnt a fan of giving herself the injections at first but quickly adapted.

[litliwlowa]

Mollie

I was on Forteo nearly two months, and was subsequently pulled off of it. Took me about that long to figure out it was the Forteo disagreeing with me (not my thyroid levels) and keeping me sick, as well as in pain in my everywhere. But I also have a very sensitive and reactive immune system. I don't recall all the reactions I was having with it - it's been a few years now. Best I can recall, I also developed a horrid bronchial infection while on it.

There are others who have done well on Forteo, as you can see from tamaran17's post.

You're kind of in a tough spot. Steroids unfortunately do affect bone mass. That's why my docs won't put me on Prednisone actually for any length of time except as a last resort, and then only a short run taper.

But weigh in the devastating consequences of osteoporosis, breaking a rib by simple turning, that's weighs in to your decision also.

You may well do very good on Forteo. Personally, if I were in your situation, and your doctor is recommending it, I'd certainly try it. As for any adverse affects or contraindications, discuss your concerns with the doctor who is most familiar with your specific medical situation.

Amanda

[mollie carey]

thanks, I would love to hear from anyone else using forteo, I am concerned with side effects, seems like people get them or do not.  I am very reactive too, so I feel afraid to start the shots.

[litliwlowa]

The best thing I can suggest, is be very familiar with the effects and side effects of this treatment, as well as contradindications that may or may not apply to you.

http://www.drugs.com/pro/forteo.html

There is no "once size fits all", as we're all different. So it's basically weigh the benefits with the potential risks specific to your medical situation. Then make your decision accordingly.

There is no guarantee that, as it worked well for others without adverse effects. that you will have the same experience.
Conversely, there's no guarantee that your experience with Forteo will turn out like mine either.

Another resource is your pharmacist in terms of gathering more information on Forteo to assist you in your decision.

Personally, if I was experiencing ribs fracturing with a simple turn, and facing advanced osteoporosis, my leaning would be as it was the very year my endocrinologist recommended it - which is what I did, tried it.

That I didn't do well on it was the luck of the draw. But I still think in retrospect it was worth trying it.

[ellieas]

I was on Forteo for 22 out of 24 months(moved and changed insurance). It improved my bone density quite a bit. I wasn't aware of any side effects, but since something or other is always bothering me, thanks to Sjogrens, I couldn't tell! Being a nurse, giving myself the injections was no big deal.
Good luck with whatever you decide!

Hugs,
Lesley

[litliwlowa]

oh yes, speaking as a non-medical person, the self injecting part wasn't so bad.

I must have been rx'd it during market trials. Anyway, my endo's nurse help me get past the first eewwww I gotta do this myself eeeks, in addition to showing me how to inject correctly. And pharmacy gave me the extra fine needle syringes which helped a LOT

If they still ship it out as they did back then, packed with cold pack in cooler, those Nordic ice packs are great to reuse for picnic cooler. They stay cold a very very very long time.

[Carebear]

Dear mollie,

My good pal used it daily, for the maximum allowable time.  If I am not mistaken, guidelines in Canada are that we discontinue the injections after about two years. He experienced no side effects.  He has a severe case of osteoporosis and was able to build a bit of bone.  His condition is still osteoporosis unfortunately.

He is now taking the biannual shots of Prolia, as am I.  I will have my first bone density retest in January, and am eager to see an improvement.  I have experienced no side effects from Prolia in case anyone is interested.

[mollie carey]

can you explain Prolia, I have not heard of it, I will google it and see what I find.

[mollie carey]

most of the studies I read have quotes a 9% increase in bone, did your friend not reach that?

[Carebear]

Mollie,

No, my friend did not get the 9% increase for sure,  but he and his doctor seemed pleased that he hadn't lost more bone.  His seems to be a very severe case though.  He was only around 40 when first diagnosed with osteoporosis due to his uncontrolled Crohns.  It's only been in the last year or so that I would say that his malabsorption issues are being managed.

Prolia is only injected once every six months.  You will find a lot written about it, and it has its fair share of possible side effects as well.  But keep in mind that they are possible, not for sure.  All I recall is that it is a biologic, that you must ensure you are consuming enough calcium and vitamin D, and my rheumy told me that there is some evidence that it can also repair damage to joints caused by rheumatoid arthris.  So at least one possible side effect is a good one.
 
Check it out with your doctor because we are each different.  If you like, I can let you know my bone density results early next year.

[litliwlowa]

RE: Prolia

Yes it is a biologic. I was tried on that one too. Only once, as yep again I had every single adverse reaction under the stars. However, bone scan about a year or two after my one time Prolia showed improvement in bone mass. Went from osteoporosis dx to osteopenia per bone scan anyway. My endo still says osteoporosis

But a word of caution about Prolia. If considering it, do see dentist first and get a good cleaning and dental exam FIRST. If there is any hint of infection brewing, Prolia can ignite it. In my specific situation, I was not advised to get dental exam first. It was after the fact that I got the insert paperwork from teh manufacturer and sure enough, it was right there in warnings about getting dental exam first.

In less than a day, after getting Prolia, every single aspect of my gums swelled up to such degree could hardly even find my teeth. Was febrile the very next morning. Then the rest of adverse reactions kicked in like the domino effect. I did speak directly with manufacturer also, as my everything was flaring worse than ever in my life.

I personally do not do well on biologicals. I have a theory about why, but there sure won't be any studies on that aspect.

[Ripvanann]

Hi Mollie, so sorry about your rib. I can relate, I am breaking ribs all of the time and my tail bone looks like a road map.

I was on Forteo for 8 months before the new laws allowed them to pull me off and then had to try a few of the standard ones. I'm currently on nothing because of all of the dental problems I've been having.

I think I did really well on it. I did have some nausea and some aches, but nothing like I did on fosamax (sp?) and the like. Truly, i I don't even know if it was Forteo giving me those symptoms because I feel the same way now. =-/ Forteo was the most tolerable of any of the osteoporosis meds I've tried thus far.

The nurses will train you and there's a hotline for any questions you might have. I'd definitely try it. Hope it works out for you.

Keep us updated.

Peace and blessings,
~Andrea

[mollie carey]

I could not tolerate Boniva had a flu like reaction.  I am nervous about Forteo, but know I am in trouble with the fracture and my bone density in 3.5 d's below the mean, which is bad...  Thanks for all the responses, it is good to hear it has worked for some, it seems like it would have less side effects since it is a synthetic parathyroid hormone, which should be something our bodies, at least not synthetic, are used too, but it must be the amount?