When first diagnosed with pmr 3 years ago my bone density showed osteopenia and my rheumatologist wanted me on fosamax. AFTER 3 weeks I couldn't STAND IT AND my BITE AND TEETH MOVED. So I STUCK WITH THE CALCIUM BUT NOT MUCH VIT d. The hip bursitis was really troublesome before I was diagnosed with pmr; I had many steroid hip injections. Yesterday my bone density showed the above diagnosis. I HAVE BEEN TAKING THE MICRONUTRIENT protocol as described in a successful study which actually reversed osteoporosis after one year. I have only been trying that protocol for less than 6 months with my rheumy's approval. NOW i am wondering if I should try FORTEO or just continue with the protocol . I am exercising as much as I can with the easy fatiguability. I am tapering to 8.5 currently. There was a period of time when I COULD HARDLY EXERCISE BECAUSE OF bilateral bursitis and reactive airway disease. ANY ideas?
Karen, H there
you must remember, that not every medication is suitable for every person .
GO FOR IT…In my opinion you have nothing to lose by trying a different medication .
Good luck
What were/are your t-scores? And you MUST take vit D as well as calcium. What does your micronutrient protocol include?
EILEEN, early on in my pmr journey, which started 3 years ago, I wasnt taking much D EXCEPT WHAT WAS IN THE CHEWS? . In the last year or so, Ihave been taking high doses of D3 , which in 2 case reports, help my reactive airway disease. 11,000 iu right now. THE SUCCESSFUL OSTEOPOROSIS bone protocol includes: strontium citrate, K2, VIT C, Mg, . DHA(from fish oil), D2. INTERESTINGLY, calcium from dietary sources only was encouraged. The reference another poster and myself posted that CANADIAN STUDY. I have only been following that protocol for less than the last 6 months. Since I HAD a small bowel 1 1/2 feet removed 6 years ago I Suspect I do not absorb nutrients normally.
I imagine the small bowel resection may have made a lot of difference. But it would appear the protocol isn’t working as well as it might for you if your results are worse.
What were your t-scores - did they change much over the period?
My T SCORES: left femoral neck -2.8 right femoral neck -2.3
My last bone density was 3 years ago and I Have only used the protocol for about 5 months.
Over the last 3 years the decrease was -13.8. A thought - perhaps I was even worse 5 months ago and have begun to improve but without measurements its only a guess. i add that since I have spinal and pelvic instrumentation from scoliosis correction surgery artifact might have confounded the results. This has happened with other radiological tests. I’m not sure I want to totally avoid bone meds altogether.
Those are pretty low and even if the deterioration was IRO 14 over 3 years they must have been lowish then? And exactly - there is no way of knowing what it was before.
Forteo encourages the formation of new bone - the only bone medication to do so. It has its own downsides but if it were me I’d seriously consider it - even though it is daily injections isn’t it?
Karen, are you my twin? I also tried Fosamax and couldn’t tolerate it. Got swelling in my throat that made me choke on vitamins. I also tried that micronutrient protocol, but had problems with constipation and had to stop it. I’ve also had steroid injections in my hips. I’m sorry I can’t offer an answer, but I sympathize and share all your concerns. My doc won’t prescribe a replacement for the Fosamax because I’m still in the “osteopenia” category–have to wait until it gets worse before she will prescribe another medication.I guess I’m going to try again with the micronutrients.
I think for you, trying another prescription treatment would be a good option, since you don’t seem to be getting any benefit from the micronutrients. I can’t remember offhand how long the study went for and what percent of participants profited from the protocol. But those numbers might help you make a decision.
Why on earth won’t she offer you a different bisphosphonate? If she thought you were bad enough to need Fosamax …
Mind you, I wouldn’t argue! I have never taken anything besides calcium and vit D, nor would i. My bone density had hardly changed in 7 years - so obviously I didn’t need it.
Eileen, Forteo is a once a year injection. A possible side effect is osteosarcoma and I already had early bilateral breast cancer. THE BONE PROTOCOL SHOWED IMPROVED RESULTS AFTER ONE YEAR. IF I had measured my bone density last year then I WOULD HAVE A BETTER comparason. BUT we are comparing it to 3 years ago when I HAD OSTEOPENIA ONLY.
I’m wondering whether I HAVE THE COURAGE TO DO THE PROTOCOL only. When I tore my hip muscle a few months ago I could hardly walk or exercise. Now Iam able to do tai chi, stationary bike and treadmill. I’ve set up an appointment with my rheumy on Monday to discuss this. He was in favor of the protocol and I gave him the references.
Who told you that? The website says daily subcutaneous injections which is what I have always understood:
There are other medications which ARE infusions/injections - Reclast/zolendronic acid is administered once a year, Bonviva/ibandronic acid is given every 3 months and Prolia is given once every 6 months but must either be given for life or the patient switched to oral bisphosphonates to prevent rebound loss of bone density.
My error sorry. No one told me that; I misread the Epocrates drug data base I used to use professionally. I know it’s a daily injection.
Eileen, Forteo is daily injection. A possible side effect is osteosarcoma and I already had early bilateral breast cancer. THE BONE PROTOCOL SHOWED IMPROVED RESULTS AFTER ONE YEAR. If I had measured my bone density last year then I WOULD HAVE A BETTER comparison. But we are comparing it to 3 years ago when I HAD OSTEOPENIA ONLY.
I’m wondering whether* I HAVE THE COURAGE TO DO THE PROTOCOL* only. When I tore my hip muscle a few months ago I could hardly walk or exercise. Now I am able to do tai chi, stationary bike and treadmill. I’ve set up an appointment with my rheumy on Monday to discuss this. He was in favor of the protocol and I gave him the references.
i was just prescribed alendronate 70 mg to take 1 time a week. i do not plan on taking it until i research it more. any thoughts?
i should add generic fir fosamax
Doctor felt I was on the borderline as far as needing something–osteopenia but not yet osteoporosis. I was very upset that she wouldn’t give me something else, just waiting for me to get worse first. My mother breaks her bones at the drop of a hat, and I don’t want to be like that. On the other hand, I just had my tooth extracted yesterday and am hoping a dental implant (to be implanted a few months down the road after bone healing and growth) will work. The Fosamax is a risk factor, even though I took it only for 1 month, ending 7 months ago. So now I’m sort of glad the Fosamax didn’t work for me and I didn’t get anything else. Mixed bag.
Refuse to take it until you have had a dexascan and know if you need it now - if you have normal range bone density you don’t. If it does fall while on pred that MAY change but despite what the company that markets it says, it should NOT be used prophylactically. There is a lot of good info to be found over on the HealthUnlocked PMRGCA forum - especially today’s posts!!
You might find this interesting - couldn’t do it when I wrote the other post.
JEANNE, My rheumy reminded me that the micronutrient protocol was used and successful on persons NOT taking prednisone.
I will resume when my course of FORTEO COMPLETES IN 2(!) years.
Very good point.