Hello everyone.. Some of you may remember me, I have had PMR for three years and I still cannot taper off. But, what I want to know from anyone out there is this: I have to go on a bone building medication. Doctor says Forteo injections, or Prolio, or the oral older meds (Fosamax, etc.)
Please I would so appreciate hearing from those of you who are on one of these (or other)meds and are NOT having any side effects. Inother words, I want to know if anyone has had a good experience with these meds and would recommend one or more of them. I thank you for any responses. The fact that any of these drugs can cause deterioration of the jaw bone, kind of scares me.
Thank you again. MJ
I’m following this with bated breath Padada. Currently tapering from 50mg pred initially, down to 9 and hoping to continue the taper but now have to start Prolia asap. I’m off to NZ next week so rheumy has agreed to wait till I get back in case of nasty side effects that I don’t want while overseas. Like you I’m pretty scared, pred side effects are enough to deal with, along with the PMR and GCA leftover symptoms. 😩
Have you had a dexa scan to see if you are developing Osteoporosis?
Hi Padada, has your doctor said why you need to start taking bone building drugs? Mine wanted me to because I had been taking steroids for a while and no other reason. He did not check my bone density which was pretty good at the last scan.
Hi MJ,
I have taken the oral dose of Fosamax for some time now. I take it once a week. I randomly chose Sunday morning. I have to sit still for 45 minutes to an hour.
My doc asked me last week if I was still taking it. He gave it to me because of high dose prednisone.
I have had no problems with it.
Hope this is helpful to you.
MJ, It has been over 3 -yrs for me since diagnosis of PMR. Been on prednisone the whole time. Have bern up & down many times now on 10mg. Still have allot if symptoms butbdon't dare want to go higher again. My Rhuematologist & PCP havery me taking calcium, 5000mg. & vitamin D 5000mg. But no prescription drugs for bones. What was the reason you're taking the drug? I tight PMR usually g I es,a wayfarer 2-yrs. or so ? The bouts of fatigue are the worst to deal with. Althiugh, it may be the times of bad pain the fatigue then becomes terrible ? It always seems like a catch-22 disease. Prednisone is such a real pain of a drug, the numerous horrible side-effects, but without out it the PMR is unbearable.
I’m taking Bonviva (I think it is called Prolio elsewhere). (t-score -3.5) I have an injection every three months and have had no side effects at all. I was very loathe to take it because of all the scare of side effects - I had none. I have been on pred for 5 1/2 years, now down to 5mg.
Well that’s the best news I’ve heard in forever! I start Prolia in two weeks once I return from holidays and am so apprehensive. Still on 9 mg pred as well, have been tapering from 50mg since PMR/GCA diagnosis 7 months ago. Thanks so much for that positive information. 👌
These drugs should not be taken prophylactically, only if your bone density scan shows you need them. I refused them even when my t-scores showed some osteoporosis and I've been back nearly 3 years later to check the density and the results shocked everyone (including myself...) by showing an enormous improvement. One of my t-scores is now out of the osteoporosis range and the other is on its way. I did this by diet and supplements, no dangerous, side effect ridden drug required. I go back in 2 years to check progress.
They obviously know how dangerous these drugs can be (CAN be, not everyone gets side effects, just like Prednisolone) because they used to recommend being on them no longer than 5 years, then it came down to 3 years, now I understand the recommendation is 2 years! Not all doctors are aware of this. The build up of this not normal bone can be a problem in itself. The drug remains in the system for several years apparently.
This is my way and it is working for me. Not necessarily for others at a far greater risk of fractures.
I believe that my Osteoporosis was not necessarily caused by steroids because my first dexa scan was just 3 months after starting them. Now after over 3 years of steroids, no deterioration but instead a spectacular improvement!
You are so right Reeceregan that we have so much to deal with already when we havePMR, that we don't want more nasty side effects. That is why I am trying to figure out which med has the least side effects in otjer PMR patients. Please let me know when you do start prolia, what you think of the experience. And have a wonderful trip to NZ
Hi Sheilamac, Ihad a dexa scan 3 year ago which showed some some osteopenia, but last month I suffered two vertebral fractures so now I know I have developed osteo. These fractures are very painful asyou can imagine. So now I really need to take some medication to build back my bones. They all seem so scary to take , but I believe I better get on something very soon. I hope to get some advice from others here on this wonderfull PMR site,. Thank you for asking.
sHi Pgolemy, Yes, my doctor wanted me to take these drugs several years ago, but I was scared of them. And I still am really. Last month , however, I suffered two fractured vertebrae and now I think I better start on something to protect the rest of my bones. I wish I had started them sooner, but I didn't because of possible side effects. Especially the necrosis of the jaw scares me. My doctor said that only happens to one in 10,000. Also, I have so many bad side effects from the prednisone, I don't know if I can handle new dise effects from another drug. But with the fractures now I have no choice. Thank you for asking.
Thank you Darlene for sharing your experience with Fosamax. That is one of the meds I am considering taking. I wish I had started taking it when I started taking prednisone 3 years ago. I can't seemt to get down past 12.5 mg of prednisone. When I lower the dose below that, the pain in my hips and shoulders roars back. I am frustrated that I have been trying to taper the prednisone for 3 years and have gotten stuck at 12.5. But now I need to make a choice of meds to build my bones. Anyway , thank you again for sharing with me.
I think you have made your decision Padada. Take the drugs and see how you feel. If they affect you too much I am sure your doctor will advise you to discontinue the teatment. You don’t have to be on them for years if you don’t find they suit you.
Oh Reggie I so agree with you that the side effects of prednisone are awful but wthout it pmr is truly unbearable. I don't think pmr goes away in two years for many of us. I have had it 3 years now with now let up. I am still at 12.5mg. I would love to get down to 10mg. but never can do so. Now I have to add another medcation to build back my bones. I do take the calcium but only 2500 mg. in tablet form. How do you take the 5,000mg of calcium? Tablets or liquid. ? Since I fractured two vertebrae last month, I think I better add a bone building medication. I don't want to but I will have to now. That is why I have asked everyone to share with me their experiences with taking these meds. We all help each other out with knowledge and experiences. Thank you for your input. Prednisone has been very hard on me....ugh.
Thank you Constance for your input. . I am thrilled to hear you have not side effects from Boniva. And thank for telling me you too were scare of the side effects. That is the first thing that stands out to me regarding medictions , the side effects. When you say injection do you mean an IV or is it just a shot? I remember when most of the bone building meds were only tablets to take orally. That was many ears ago of course. . Also, congrats on getting down to only 5 mg of prednisone. I wish I could do that, but I have only been trying for 3 years, so I guess I should be patient . Does the prednisone give you any side effects? Thanks again for your input to me.
Good to hear from you - even though I'd rather we didn't of course!
I'm sure you remember Nefret on this forum Padada? She was put on denosumab/Prolia as she developed osteoporosis and has been on it for a few years now with absolutely no problems at all - and her bone density is now classed as good. Unfortunately she isn't around these days.
No, Bonviva is ibandronic acid or ibandronate sodium - a different thing altogether. It is a bisphosphonate.
Prolia is also known as denosumab and, as its name suggests, is a monoclonal antibody and works in a different way.
Hi Sheilamac I would love to hear what your diet is. I have been on pred for 14months and also had DEXA scan at 3months showing I had Osteoporosis in my back. It was not down to steroids it was already there. They gave me Alendrotnic Acid to take but I have not done so yet. I was going to wait till my next scan 3yrs from first one to see if there was any change. I am only 50 so hoped I had some time to decide. If I can do something by trying a different diet I would be interested. Elizabeth