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How did you cope with the side effects tapering off prednisone?
Polymyalgia Rheumatica (PMR) | Last Active: Sep 26 4:21pm | Replies (187)Comment receiving replies
Persistent headaches could point to GCA so talk to your Rheumy ASAP. In previous posts we've discussed the fact that there appear to 3 types of PMR sufferers. Type A respond well to doses around 20mg and can quickly taper at 2-5mg at a time and get to zero in a few months with good remission rates. Type B need to taper a lot more slowly, 0.5 to 1 mg at a time, over a much longer time frame and often get 'stuck' once they get below 10mg and have flare ups but can get to zero in a year or two. Type C will generally be on Prednisone for many years and are classed as chronic sufferers. The type doesn't appear to relate to severity of disease at onset, its most likely genetics. Strange symptoms can crop up at any time during Prednisone tapering.
Replies to "Persistent headaches could point to GCA so talk to your Rheumy ASAP. In previous posts we've..."
I'm reminded of what a doctor told me more than 30 years ago. I was diagnosed with my first autoimmune disorder but not PMR. He said 3 things could happen with almost any autoimmune disorder.
1) It could be a one-time occurrence and it wouldn't happen again. (Type A)
2) It could start to recur and have a recurring pattern. (Type B)
3) It could become chronic and then I would be in a "world of hurt." (Type C)
That was more than 30 years ago when I heard that.
Looking back ... I was Type A for the first 5 years.
When the problem started to recur, I became Type B for about 15 years.
After PMR was diagnosed I was definitely Type C for another 12 years.
I guess I'm still Type C but I'm off prednisone.
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I ended up after 3 years type c. Recently on dexamethasone now on taper from that and change over to low dose prednisone. I am grateful for this website. Not alone anymore always have someone to read