I've been thinkin again.
I've been diagnoised initially with "undifferentialed inflammatory arthritis," and then after sharing some information I received on site with "PMR."
My symptoms disappeared almost immediately within 12 hours of taking high doses of prednisone (am now at 12.5 mg/day). I was told, and have read that such an immediate successful response to prednisone helps confirm the PMR diagnosis.
But is it conclusive?
What other conditions with the same symptoms might respond equally as well to rather high doses of prednisone?
I hope I'm being clear with my question.
Thanks,
Bob, it's "conclusive" inasmuch as there is no definitive test available to confirm PMR. With your symptoms having "disappeared almost immediately" on starting the 15mg dose of Pred, and if you are still feeling well on the 12.5mg dose, then that pretty much confirms the diagnosis. Yes there are other conditions that could respond to high doses of Pred - rheumatoid arthritis is one, but in the case of RA as soon as any reduction in dose is tried it becomes apparent that the Pred is not really doing its job on its own and other meds need to be added or other causes investigated. Your present dose of 12.5 is not really considered high dose. The very high doses (for instance I had to take 40mg for GCA) would probably kick almost anything into touch. Just enjoy being pain-free - not many of us reach that stage throughout the best part of our treatment.
Thanks Mrs0
BTW, I didn't mean to imply I was pain free. I do fee a difference as I decreased from 15 MG to 12.5 MG -- especially in the mornings. But nothing compared to what it was. And yes, I do feel blessed that I'm not in so much pain. I just have this nagging feeling that something else is being masked.
Thanks for your input
Bob, as you are improving, I am wondering what it is that is giving you that "nagging feeling" that something is being masked? It is true that once diagnosed with an auto immune condition it is quite possible to contract another. However, you should have had blood tests to exclude certain other conditions before diagnosis. For instance, apart from the more serious conditions, a simple Vit D deficiency can cause pain similar to that of PMR. If it was me, and I was doing well on 12.5mg, I think I would relax and try not to worry - stress won't help whilst the steroids continue to do their job of controlling the inflammation.
If you started on 15-20mg pred and had that dramatic response then it is pretty well conclusive - Quick and Kirwan's paper uses that as a test. It is important though that a MODERATE dose is used to start with - under 20mg is not a high dose but classified as moderate. Yes, there are things that would be masked by using a higher dose and that is why those who know what they are doing start with 15mg or so to see if there is this very speedy response: 70% improvement in symptoms within a couple of days is what is looked for. If that doesn't work then you need to consider somehting else.
It is quite true that the stiffness in something like RA would also respond to a higher dose - but not as dramatically. Most of the nastier causes of polymyalgic symptoms would have been flagged up in the blood tests and it is unlikely they would have responded to pred like you describe anyway.
Hi Mrs O. I am very interested in your comment that a Vit D deficiency can cause similar pain to PMR. I was diagnosed with PMR about 5 weeks ago and put on steroids. I have since found that my vit D level is 55 which is right at the bottom of the normal range, so almost a deficiency. Is it possible that i have been misdiagnosed? I am having awful side effects with steroids, so would be very interested to have your comments on this. Thank you
Unlikely - especially if the stiffness and pain responded quickly to pred originally. Vit D deficiency causing PMR symptoms doesn't respond to pred.
And deficiency is having a vit D below about 25 - my daughter had a level of 11 recently! Mine was 21. Getting it up to 80 didn't improve my PMR symptoms.
Thanks for your prompt reply Eileen. I have been very interested in all your posts, they have really helped me to understand this horrible condition. I have also been worried about GCA. I have been having odd sensations on different areas of my head at different times, not really proper headaches. No jaw ache at all. Before my PMR was diagnosed 5 weeks ago, about 2/3 weeks before, i had a few days of bad headaches, but i was under considerable stress at the time, so put it down to that. I have told my GP about the odd sensations and he just said to keep an eye on it. Do you think i am stressing too much about the whole thing? I am thinking it may be one of the side effects of the steroids. I am on 10 mg and always extremely sensitive to medication.
Really sorry to have butted in on Bob's conversation!
Jan,
No problem at all! I'm learning from your questions. Keep them coming.
Yes you probably ARE over-stressing about GCA. Your GP has said it really - just be aware. You cannot live your life panicking about each and every ache and pain because having PMR doesn't exempt you from the normal bits and pieces of life. Everybody gets the odd headache and sore back. And so do we.
The headache with GCA is typically said to be a new onset headache of a sort you haven't had before - and some describe it as the headache from hell. The scalp discomfort is quite typical too. I had both the scalp sensation and the jaw claudication (pain on chewing) but I didn't know what it was and it went away - no one ever asked me about it! You can have GCA without it affecting your vision - and that is the thing to really act on quickly. I know of patients who have lost vision for several minutes and didn't go to the doctor for days! If you have anything like that go straight to A&E - don't ring the doctor and wait for an appointment.
But don't obsess - just be watchful.
Thank you Eileen. I am sorry it has taken me so long to reply. I have been unwell. I feel very reassured by your comments and appreciate the commonsense approach. I shall not worry so much about it now. Best wishes, take care!