Prednisone and Osteoperosis

Posted by rocksology @rocksology, Aug 5 1:55pm

Two years ago I was diagnosed with Osteopenia. This January I was diagnosed with PMR and put on 20 mg Prednisone which I have not been able to successfully taeper off. I'm currently at 14 mg and in pain. My new primary doc ordered a new DEXA scan and it came back Osteoperosis. I take 1200mg calcium and 3000 IU D3 daily.

I finally was able to see a traveling Rheumatologist (retired) who only comes to town a couple days a month to cover patients here. She has me reducing my Pred down to 10 mg by the 21st of August. Then she is talking about starting Methotrexate.
I have a follow-up with my primary next week, and he may want to start me on another medication for the Osteoperosis. I don't want to start any new medications until we get the PMR under control. I'm the medication side effect queen, and I strongly feel I should only add one medication at a time. Is that reasonable?
I'm feeling defeated by the PMR. Now I have another issue resulting from it. The Methotrexate is a chemotherapy. It's shown to not be effective, but insurance companies insist on it as a first line steroid-sparing treatment. (per my Rhuem) If that doesn't work, then we can move onto the next step.

I'm a silversmith and I go to shows where I display my jewelry. I have been unable to do shows in the last two years because of PMR pain. I can make the jewelry, but what's the point if I can't get out to sell it.
As I said, I'm feeling defeated and apparently sorry for myself today.
I guess I just need some encouragement.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

tweetypie13 | @tweetypie13 | Aug 5 3:40pm

Hang in there! It’s a frightening journey, you are not alone.
(Note: a self pity party is ok.)
I, too, am a 1 or no medicine girl.
Osteoporosis too after prednisone.
First off, ask your PCP what is the chg in your measurements between Dexa scans. My chg was “minimal” to take me to osteoporosis. And the chg was in only 1 place, and osteoporosis in 1 place is reported as everywhere.
My Dr and I decided to wait and see…..as in not jump to any conclusions.

An alternative to Methotrexate is the biologic called Kevzara. Check it out. Also very $$$$ and check out your insurance. I’ve been successful with it. The metho. was never offered to me. I was able to supplement prednisone with Tylenol for Arthritis as per my Drs instructions.

Lastly, keep asking questions of this group. Everyone is helpful.

wellsbjt | @wellsbjt | Aug 6 1:10pm

Keep your spirits up if you are unable to do the fast taper (4 mg in less than 3 weeks) recommended by your rheumatologist. body may not tolerate it.

Your rheumatologist is wrong about insurance approval of Kevzara. Not all insurance companies require methotrexate before approving Kevzara - mine didn’t. However, your physician has to say that you “relapsed” on prednisone. Kevvzara (generic name is sarilumab) is the ONLY FDA approved drug for PMR patients for whom “glucocorticoids have proved inadequate or who cannot tolerate corticosteroid taper. “

My rheumatologist was able to get Kevzara approved for me by stating that I had “relapsed”on prednisone. What actually happened is that I reduced my prednisone dose from 13 to 10 (during a fast taper) and the disease flared, and I had to go back to 13 mb. One month after starting Kevzara, I was able to do a fast (1 mg reduction per week) pain-free taper from 13 to 6 mg. I am now at 2 mg, doing a slow taper, but I have my life back.

Don’t be afraid to push your rheumatologist to prescribe Kevzara if you have a “relapse” during the taper she recommended. If the insurance company denies the drug, consider making a written appeal. Also, if needed, you might want to research whether the drug manufacturer has a program to help you pay for the cost of the drug. Good luck!

petermccarville | @petermccarville | Aug 6 1:19pm

Hi @rocksology . I just looked at your profile and other posts. Seems that you have been suffering from PMR for a lot longer than the diagnosis. That could be the reason you are in pain (flares?) after tapering from 20 to 14 (January to August). You have a much more entrenched PMR than I did. I felt mine coming on and three weeks later I was on pred and it worked well and the tapers have gone quite well. Ask the Rumy about this idea I just posited regarding you having a longer term case than meets the eye (diagnosis date). Just a hunch. Also be aware that forcing tapers that lead to pain (significant and worsening pain that almost feels like you are back at square one with PMR) is not what you want to have. You need to be in charge of the prednisone dose that you take and feel good at. Not perfect but good. I am a bit suspect about the taper the Rumy wants to see you at by the end of August (from 14 to 10). I do encourage the Methotrexate or the Kevzara. I hope to start Kevzara soon (this month?). It can spare you a bunch of the total amount of prednisone you will take on the journey. Speaking of journey....It is just that and sucks for everyone. Do hang in there and the recommendations about your osteoporosis given by @wellsbjt are good to follow and ask the Dr about. There is an inherent despair that comes with PMR which makes it all the more nasty. Just realize that that is the disease and not you. Well wishes.

pdxmac | @pdxmac | Aug 7 10:32am

I agree with all the good advice you are getting here. Here's one more thing to consider if you're up for it.
Your psychological health is at least as important as your physical health. You need to find positive things wherever you can. If you can still make jewelry, have you explored online sales? There are lots of options these days, including Etsy.
Sometimes you have to manufacture something to feel good about. I never enjoyed cooking very much, but it's something I can do now since the pain is lower in the afternoon. So now it's one of the highlights of my day. It's not as fun as the hiking, traveling, parties I used to love. But those will come back in time if I just get through these dark days.