Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

Just curious: how long have you been on 2.5 and has that worked for you. I look forward to the day I can settle at that low level.

At least 5 years. There is an article in Medline by an MD who followed his patients on low prednisone for maybe 20 years and found no downside. I wish I could give you the reference. I will look for it.

Appreciate the reply. I think it's important for our community to know about this option.

I looked in PubMed and looked at all articles (63) that addressed prednisone AND low dose AND longterm and arthritis I didn't find the article I remember but I think he was the first author of the following article that addressed the subject we are looking at. The problem with finding the one I remember is many of the articles include other drugs to treat arthritis and the definition of "low dose" prednisone had changed over the years from < 15 to < 10 mg to now <5 mg. As I noted in my first post on this subject, I am on 2.5 mg of prednisone a day for over 5 years and it has helpe d me reduce the occurance of PMR. Below is the abstract of the article that I found and basically the authors noted in the last sentense of the abstract that low doeses OK but with brusing and thin skin as adverse effects. I have experienced this, but it is a minor problem. I should note that I am not your average patient since I am addicted to extensive exercise. Another interesting piece of information is the journal issue that the following abstract comes from had many articles on low dose prednisone to treat arthritis

CER5095
2011 Vol.29, N°5 ,Suppl.68
PI 0130, PF 0138
Paediatric Rheumatology

Free to view
(click on article PDF icon to read the article)

PMID: 22018199 [PubMed]

Received: 15/09/2011
Accepted : 15/09/2011
In Press: 22/10/2011
Published: 22/10/2011
Abstract

This article summarises the experience of one academic rheumatologist in treatment of patients with rheumatoid arthritis (RA) over 25 years from 1980-2004 with low-dose prednisone, most with <5 mg/day over long periods. A database was available which included medications and multidimensional health assessment questionnaire (MDHAQ) scores for physical function, pain, and routine assessment of patient index data (RAPID3), completed by all patients at all visits in the infrastructure of care. Most patients were treated with long-term low-dose prednisone, often from the initial visit and indefinitely, and with methotrexate after 1990. The mean initial prednisone dose declined from 10.3 mg/day in 1980-1984 to 3.6 mg/day in 2000–2004. Although no formal criteria were used to determine the initial dose, prednisone doses were higher in patients who had more severe MDHAQ/RAPID3 scores, as expected, reflecting confounding by indication. Similar improvements were seen in clinical status over 12 months in patients treated with <5 vs. ≥5 mg/day prednisone, and maintained for >8 years. Adverse effects were primarily bruising and skin-thinning, with low levels of hypertension, diabetes, and cataracts, although this information was based only on self-report rather than systematic assessment by a health professional. These data reflect limitations of observational data. However, a consecutive patient database may provide long-term information not available from clinical trials. The data document that prednisone at doses <5 mg/day over long periods appears acceptable and effective for many patients with RA at this time. Further clinical trials and long-term observational studies are needed to develop optimal treatment strategies for patients with RA with low-dose prednisone.

Do you know of any PMR support groups in Ann Arbor?

No. I will start looking.

No. But I will look.

Good morning, I am Teresa, I live in Minnesota. I have not been officially diagnosed with PMR but it is highly suspected. I am not on prednisone, I take Meloxicam. The pain is better but still there.

So glad to have found this discussion forum. I was just diagnosed with PMR last week ( March 2022) and I have so much to learn. I have been started on prednisone 20 mg a day (10 morning and 10 evening) and also a muscle relaxant I can take at bedtime. I was in pain and stiffness for about 8 weeks before the diagnosis. I was prescribed Melaxicam (an Nsaid) and physical therapy during that period but with absolutely no relief, of course now I know why. I see my doctor in two days to see how I am progressing. The main thing that is somewhat worrisome to me at this point is that it seems that some people react immediately and almost completely to the prednisone within a few days indicating that they feel 90-100 percent better. I am
on my fifth day and while I do feel much better, I am certainly not back to pre PMR. The most wonderful relief has been that I do not wake up in the night after only a couple of hours of sleep with the dreadful pain in my shoulders and the feeling that my arms and shoulders are "locked " and I can't even move. However, I do still have some pain, some milder stifffness, trouble sleeping at night, and still having trouble with my shoulders and arms hurting when trying to get dressed, carry things, get a pan in and out of the oven, etc. Wondering is this is typical for some of you that the prednisone isn't an instant relief to all the issues. Thank you for any insight and I will continue reading this forum.
By the way, this is my 2nd autoimmune disease, I was diagnosed with Graves disease about 18 yrs ago but it has been in remission for about the last seven years.

welcome. This is an amazing group of fellow travellers ! I have benefited from so many insights and support. From my understanding because PMR diagnosis is “non-specific” and treatment is a very personal journey. Please hang in there; I would love to hear how your next appt goes