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GCA (Giant Cell Arteritis) and PMR (polymyalgia rheumatica)
Polymyalgia Rheumatica (PMR) | Last Active: Oct 25 10:20am | Replies (277)Comment receiving replies
I was diagnosed with P.M.R. 2 years this August was prescribed prednisone 3 .5 mg tablets / day for 2 weeks, the 2.5 for 2 week , then 2 for 4 weeks then 1.5 for 2 weeks, then 1 for 4 week then .25 mg . when i am on .25mg i start to det an head ache, my temples ache, my neck and shoulders ache and my hands and fingers ache like and tingling burn. My dock re prescribed prednisone .25 to 1 5mg tablet /day. there are time when I am no the .25 tablet the body pain including head ashes and temple aches to the point of felling nashis. I go back up to 1 .5mg pill, the pain will go a way but after 5 days or so I start to fell the pain again. drop back to ,25 mg so far not to bad we will see
Replies to "I was diagnosed with P.M.R. 2 years this August was prescribed prednisone 3 .5 mg tablets..."
I have GCA and I'm sure a touch or two of PMR.
I wanted to share this with you~~my first boss, an orthodontist and his lovely wife, a nurse, and I have been friends for over 40 years. The night I was taken to the ER because I was suddenly blind in one eye, I vaguely recalled some things he had said years ago; 23 to be exact. It was something about PMR/GCA, autoimmune, steroids...in kind of a fog on the gurney, I called him. Yes, his wife had both, and no matter what, if she stopped that last milligram of prednisone, her symptoms returned. So, for over twenty years, she still took 1mg each morning. Maybe that is what your body is saying.
There is a rheumy in England, Dr. Bashar Dasgupta (well known and respected), who simply believes some patients can remain on low doses for life with no problem. At present, I am at 3 mg after three years and will continue to reduce at .5mg every three to four weeks (after a trip), and we shall see.
Hopefully, that story about Pat helps. Some of us get so caught up in getting off pred that we feel guilty if we can't. No personal involvement is involved, your body talks to you. If your body says no...I know if I wound up on .5 or 1mg...I'd be happy.💞
Hi @sirmac, I'll chime in with @johnbishop below that the dosage of prednisone seems low for PMR. I think patients usually start with 15 - 20 mg of prednisone, then taper. The dosage also, seems very low if you have Giant Cell Arteritis. I was diagnosed with that and put on 40 mg of prednisone, as I am small in stature and low weight, then tapered down by 5 mg every two weeks. As John mentioned, Giant Cell Arteritis, untreated, is serious. It can result in blindness or stroke. Usually a biopsy of the temporal artery is done to confirm the diagnosis. It's important to see a specialist, usually a rheumatologist, who has experience in treating this disorder. I wish you the best!
I am now on 1/2 .5 tablet and not feeling to bad ,fingers have a light tingling and a very light head ache just above my ears towards my eyes . Went for a 28 l bike ride yesterday and felt good. My shoulders and upper arms usually are weak and pain but not yesterday, just a bit when when I first started my ride all on all I felt quite goon
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Hello @sirmac, Welcome to Connect. I'm a little confused at how much prednisone was prescribed for your treatment. Does "3 .5 mg tablets / day for 2 weeks, the 2.5 for 2 week , then 2 for 4 weeks then 1.5 for 2 weeks, then 1 for 4 week then .25 mg " mean three 5 mg tablets per day (15 mg) for 2 weeks, then 10 mg for 2 to 4 weeks, then 5 mg for 1 to 4 weeks and 2.5 mg after that?
You mentioned your head and temple areas ache which is a symptom of GCA and a lot more serious than PMR. GCA normally requires a higher dose of prednisone than PMR. It sounds like you might be tapering off of prednisone too fast.
Have you thought about seeing a rheumatologist who has more experience with PMR and GCA?