1. < Polymyalgia Rheumatica (PMR)
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If I choose to take no meds. What is the worst that can happen?

Posted by mwarrior @mwarrior, Sep 19 4:50pm

I'm 69 and had PMR for a year. I'm in pain so I know how bad it can hurt but what I don't know is PMR damaging anything in my body if I take no meds. Pred helped but it has bad side effects. Now they want me to try hydroxychloroquine. It has possible side effects. What is the worst that can happen to me until I say uncle to the pain?

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Mike | @dadcue | Sep 21 9:03pm

In spite of everything I experience in all the years of being diagnosed with PMR --- I would still start prednisone and ask more questions later.

I understand your reluctance to take Prednisone. When you read the article titled, "Polymyalgia Rheumatica: A Severe, Self-Limiting Disease," on the US Pharmacist --- the title can be misleading. Nobody knows how long PMR lasts and the chronic pain can be severe and that isn't good.

Later on in the article it also says, "Generally, PMR is not associated with serious complications; however, patients treated with corticosteroids are at risk for long-term complications of corticosteroid therapy. Every patient should be considered at risk for GCA."

This is where a decision gets really tough. Regardless ... I would still start Prednisone and see where it goes from there.

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mwarrior | @mwarrior | Sep 22 8:14am
In reply to @tuckerp "Many have not had elevated ced rate or CRP . A diagnosis of PMR can be..." + (show)
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Many have not had elevated ced rate or CRP . A diagnosis of PMR can be that prednisone works. That was my case. My blood tests were normal. here is a quote.

"The erythrocyte sedimentation rate (ESR) is the most sensitive diagnostic study for PMR, although it is not specific. The ESR is frequently elevated and greater than 40 mm/h, but it can exceed 100 mm/h. In 20% of patients, the ESR is mildly elevated or, occasionally, normal, which may occur in patients with limited disease activity. In these cases, diagnosis is based on rapid positive response to low-dose prednisone (10-15 mg/day)."
https://www.uspharmacist.com/article/polymyalgia-rheumatica-a-severe-self-limiting-disease.

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Prednisone works without a doubt. I have 7 grandchildren and do a lot of bleacher time. When they first gave it to me almost a year ago, I went from not being able walk up the steps to sprinting to the top like Rocky. I appreciate everyone's input. Much better than Doctors who have never seen PMR before.

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pattiobrien111 | @pattiobrien111 | Sep 22 10:15am
In reply to @jeff97 "I've got the Kate Gilbert book, but I haven't read it in about a year. On..." + (show)
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I've got the Kate Gilbert book, but I haven't read it in about a year. On page 40, she says "However, the difficult truth is that the consequences of not taking the steroids, for most people, carry more risks than taking them. To begin with, there is the risk that PMR, if left untreated, might develop into Giant Cell Arteritis, for those patients whose vascular system is also implicated in their PMR. Secondly, and just as serious, is the effect that the PMR has on daily life, and on the quality of life. Most people simply cannot manage daily life with PMR without the medication."

Since I had untreated PMR for about 7 months before I developed symptoms of GCA, I have wondered if I had been diagnosed earlier and started treatment, if that would have prevented GCA. But I have seen quite a few posts on this forum and on another forum where people with PMR develop GCA just as they are tapering to a low dose of prednisone. It seems like some people are just going to develop GCA regardless of whether or not they get treated for PMR. But the people who develop it after being treated for PMR have the advantages of already being connected with a medical team (rheumatologist, etc), and know the symptoms and risks of GCA. Hopefully that allows them to avoid the serious problems that can be caused by GCA.

As an aside, a few months ago Kate Gilbert posted in the PMRGCAuk forum asking people for a brief summary of their experience with Actemra. She said she was gathering information for a revision of her book. I replied to her request. I guess there's a chance my response will be included in the next version of her book.

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Thank you Jeff. Information is empowerment here where PMR is concerned. I appreciate your reaching out. I am well aware of the up to 20% crossover of GCA with a diagnosis of PMR and the reverse to a degree. I take it Actemra is working well for you.
Best.

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