Connect
Comment receiving replies
I have not heard of anyone with PMR tapering and going off Prednisone that quickly, Elizabeth, but I’m not a doctor. Most people stay on it for many, many months and years to be rid of the disease.
I will give a warning that on the day after you have completed the prednisone you may be back in pain.
I was diagnosed in July. Went from 15 mg, to, 20, to 30.
Started tapering 2.5 mg every 2 weeks in October to now 12.5, but am experiencing some upper arm pains when I wake up so will stay at 12.5 until that subsides. It seems from what I have read from the anecdotal offerings most people are successful in going off the prednisone doing a very slow tapering.
When I get to 10mg I hope my doctor will agree that coming down just 1mg is okay. He seems to be of the mindset that coming down 5 mg is fine, and I don’t agree with that because of reading so many accounts from others who have experienced success from a very slow taper. ( most of that accounting is in the Facebook support group).
I had my first round of Covid in early November and felt normal after 2 days of feeling like I was coming down with the flu. I tested positive, though, for 10 days.
As many people have said, everyone is different with this auto immune disease.
Replies to "I have not heard of anyone with PMR tapering and going off Prednisone that quickly, Elizabeth,..."
I also had Covid for the first time in early Nov and my PMR symptoms were totally gone for about a week while I had it. Go figure. Subsequently have had the nagging postnasal drip cough since then and developed an ear infection which was treated with an antibiotic. I finished the antibiotic on the same day that I tapered from 7.5 to 5mg of predisone. Some of my symptoms reappeared and my rheumatologist suggested I go back to 7.5 but not before I had labs done. My ESR was elevated which confirmed her diagnosis of a flair. However when I told her of the ear infection she agreed that the elevated ESR could be from that. I am holding on 5mg with no significant increase in my PMR symptoms. I see her in a few days and will hope that the taper will continue successfully. I am going to suggest that instead of the 2.5 every three weeks that I have been doing be reduced to 1mg every 3 or 4 weeks. Fingers crossed.
Connect
@vanns, @charlotte61, @johnbishop, and all...
I've been on varying lengths and dosages of prednisone since I was 40 and developed Sarcoid. I was on a heavy dose for months to hit the Sarcoid, since I've had it for multiple lung and other inflammations. I'm now almost 77 and dealing with the bone and other issues of longterm prednisone use. Yeats probably why my doctor began with a shorter dose than usual. I suspect he was testing to be sure of the PMR and GCA diagnosis.
Well, now we're sure and I'm beginning prednisone again today. I want to stay on it longer and do a slower taper if possible. But, that may cause more issues...we'll see.
Strange, but I can't wait to begin the prednisone and lessen this pain. More learning about another disease.
Thank you for sharing your story with me. You have helped me understand and get a better start on dealing with these issues. I do wonder how often you have flare-ups...is it dependent on your diet? Activity? What are your triggers?
Blessings, Elizabeth