Forteo & Pred induced Osteoporosis

[BookNut]

I had osteoporosis before having to go on long term prednisone, but it had truly improved with a vigorous schedule of walking and taking calcium and D3. Unfortunately, my prednisone use has worsened the situation. My breathing issues have improved immensely and so I have started back with the walking, but my rheumatologist wants me to take meds for the osteoporosis. My PCP, who is the one who has been the most helpful throughout my illness, is dead set against bisphosphonates such as Fosamx. And because I have terribly weak teeth, both doctors think I should take Forteo. It is a daily injection that can be used only for two years.

Anyone have experience with it? Of course the "black box" warning indicates bone cancer as a possible side-effect. My PCP is very cautious, so I suspect she thinks the risk is small, but I need to talk more with her.

Please note that I am an "honorary weggie", meaning I was once diagnosed with WG but that has been ruled out. I have persistent asthma, chronic sinusitis and bronchiectasis.

Thanks!

[annekat]

I wish I knew what to think, Jacquie. I also had the beginnings of bone loss before high dose, long term pred. I took Fosamax for 5 years and am glad I stopped, but my bone density did get a little worse and a fractured my pelvis this year. Perhaps I could have done better with walking and weight bearing exercise, though I do take Calcium and D3. I wonder what the differences are between these treatments that would make Forteo or any of the other injectibles safer than Fosamax. I realize your physical activities such as walking are more limited because of your breathing issues, but I do know that you go to the gym, which I don't, so far. I plan to talk to my PCP about this next time I see him, which should be soon. So many things to ask about, I'd better start a list! Good luck making your decision.🍀

Sent from my MotoE2(4G-LTE) using Tapatalk

[annekat]

Oops, just re-read and see that your breathing issues have improved immensely. That's great! 😃

Sent from my MotoE2(4G-LTE) using Tapatalk

[BookNut]

It is only that it is safer for my teeth. Fosamax can cause holes in the mouth for those with bad teeth. Make you wonder how it can possibly make bones better if it can cause holes in the jaw? Weird. Am onky starting my research. The doc told me the difference between how the two act. It made sense at the time, but it has escaped my mind. I am sure my research will help. Fosamax has actually been associated with serious and difficult to heal breaks, such as in the femur bone. Hence my PCP's oposition to it.

[annekat]

My teeth are not too bad except for a few problems with my not taking care of them, seeing the dentist enough. I was also concerned about the femur breaks. Once you said that Fosamax may build bone, but it is inferior bone. So I'm thinking Forteo is not a biophosphamate? I'll do some research, hopefully before seeing my PCP. And will be interested to hear what yours says.

Sent from my MotoE2(4G-LTE) using Tapatalk

[BookNut]

Here is a supplement my PCP has prescribed.
Buy Online Ortho Molecular - Product Strontium 60 Capsules @17.91 by using coupon SAVE10% (http://www.mysupplements.store/ortho-molecular-product-strontium?gclid=CJC2k8a-mNMCFYSLswodtuIPUQ)

It is NOT available on Amazon right now (unless you want to oay over $80 ��) and looking at other brands is too confusing. I bought this one for $20 at my doctor's office. She told me at this strength I should only take it once a week, not once or twice a week as the label says. It has something like 925 mg of strontium citrate, plus a smaller amount of another strontium combo. You can't see the dosage on this website, but I could see it on my bottle and on the manufacturers site, so I know they are the same. So it is pretty cheap. Around $20 for 60 pills which will last 60 weeks.

MY doctor says it is important not to take the pill with calcium. I will likely take it in the morning, and take my calcium at dinner and bedtime, leaving a nice long gap between them.

[annekat]

Is this instead of the Forteo, or just a possible supplement to it? Strontium is used in ceramic glazes...So is calcium.

Sent from my MotoE2(4G-LTE) using Tapatalk

[BookNut]

Sorry. It would be in addition to Forteo. OR if I decide I don't want to take Forteo or any of the others, at least it would be something else I could do aside from the calcium and d3.

[Debbie C]

I also have osteoporosis and I talked to my rheumy and pharmacist about taking something. I had seen commercials about forteo but haven't seen them in awhile..makes you wonder. I, myself am against anything I need to inject simply for the reason if I were to have a reaction to it, plus I hate needles ! But the things they mentioned were good for a year so it must have been a lot more potent. Gotta love this pred !! My pcp wants me to take crestor for my high clorestoral (sp?) but by cardio is totally against that. And these are the "golden years " !!!! You'll just find me slumped over,toothless dying from a heart attack.

[Alysia]

In Israel no dr ever suggested me any of those meds. Never heard of them. Eventhough I am on pred since 2008 and already have osteopenia. What all docs here suggest is calcium 600mg plus vitamin D. Even an endocrinologist dr that I saw few months ago, only said to double the calcium. Nothing else.

[BookNut]

In Israel no dr ever suggested me any of those meds. Never heard of them. Eventhough I am on pred since 2008 and already have osteopenia. What all docs here suggest is calcium 600mg plus vitamin D. Even an endocrinologist dr that I saw few months ago, only said to double the calcium. Nothing else.

I will most likely refuse any of these meds. There are only two categories. The Fosamx type meds have side effects of severe breaks of the femur, pelvis etc. as well as causing bone death in the jaw for people with weak teeth. The other type is Forteo which has a side effect of bone cancer. I think I am better off increasing my gym time and continuing with my calcium and d3 and the new suplement Strontium prescribed by my amazing PCP. I go to the dentist next week to see if he thinks I would be OK with Fosomax. If he says yes, I will NOT take it because my PCP is dead sense against it. She is OK with Forteo, but insurance will not approve it unless the dentist says Fosomax is too dangerous. Forteo costs thousands (yes thousands) of dollars every MONTH. No way can I afford that!!!

[Girly3800]

My husband is in month 21 of Forteo and will quit at 24 months. It was the treatment of choice when he developed spinal compression fractures. He ceased Fosomax when he developed sores in his mouth that were quite painful. He has had WG for going into the 6th year now. When he needed higher does of prednisone temporarily to combat some lung function issues he was unable to tolerate the pain in his spine from the steroids.

Forteo was chosen because it does not affect the kidneys and he has had borderline kidney involvement (most likely) for the entire 5 years - we go out of our way to avoid any drug that can affect kidney function.

He has suffered no side effects, the shots are easy (but expensive). He also has had no new compression fractures - coincidence or result? who knows?

It is an expensive treatment. The specialty pharmacy that partners with our insurance charges almost $2,900 for a 28 day supply. This is after the negotiated discount. In our eyes well worth it if it stops the pain from fractures.

[BookNut]

A lot for me to think about. i will have to see how much it would cost us after insurance pays their share. if only Medicare covers it I am up the creek since it only covers 80%. That leaves us with almost $600 a month out of pocket. thank you for the input.

[annekat]

I was taking 2000mg of Calcium and 2000 of Vitamin D3. My PCP suggested I lower the Calcium to 1000mg but keep the D3 at 2000mg. I think he was concerned about kidney stones or bone spurs or some such. Then I talked to my PA at the orthopedic practice, and she said 1000mg of Calcium was good but that she herself takes 3000mg of D3, that you can't really take too much, so I've started taking that much. Neither of these docs has pushed me on Fosamax or Forteo or any of those, but the PA said I should talk to the PCP about it again. I was on Fosamax for about 5 years starting in about 2008, but was told by my WG pulmy that 5 years was about the max, so I stopped. He mentioned the injectibles as a possibility for the future. My oral surgeon said I could go back on Fosamax after a break of a few years. But he wasn't implying I should. Why would he say that if it can weaken jaws? He knew about WG and pred. So it seems everyone has a sort of tentative opinion but isn't definite that it's a good idea. Seems pretty flakey to me.

Sent from my MotoE2(4G-LTE) using Tapatalk

[Girly3800]

You might also do an online search for Forteo coupons - there are several available from the drug manufacturer to help pay the co pays.

[BookNut]

My doctors seem pretty firm that five years is the lifetime max for the Fosamax class of drugs. They are also the only ones that have negative side effects on jaws ... but if you have strong teeth they are probably OK. Given my teeth which have been weak all my life, I think I wojld be at too great a risk. It is all a gamble. Risks vs benefits as all the docs say!