I was wondering if anyone has had the experience of feeling a major PMR flare up with bloodwork coming back within normal range for inflammation markers?
I have been feeling as bad as I did at the beginning of my diagnosis 3 yrs ago. Have gotten down to 2 mg Pred for a while now, but had a bad fall on a vacation that seems to have caused my flare up. (Has this happened to anyone? Does trauma re-ignite the symptoms?)
I see my Rheumatologist tomorrow and I'm afraid he's going to tell me my bloodwork looks fine and not want to do anything. He has been giving me cortisone shots about every 3 mo. for my shoulder/neck pain, but I don't think those can continue.
Anyone have any feedback? Thank you.
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PMRinsdca
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At its worst my blood work has been only just above normal limits, some people's never matches the pain and stiffness they have. Any form of stress can cause a flare and a bad fall can come into that category. Hope you get this sorted quickly, best wishes.
oh yes - afraid so. I am sure the rule with PMR is that there are no rules..... It really seems to be such an individual thing - takes its own time and course and whatever you do will affect it little if you try to force PMR down a path it does not want to go. Good luck with the Rheumy and take it easy!!
Hi Rindsca, my blood work has bordered on normal since I was first diagnosed 2 years ago, but PMR doesn't acknowledge that, it doesn't follow the rules written in the books. It has it's wicked way with us causing havoc along the way. I have managed to get down to 3mg after being started on 10mg. Each time I try to drop to 2mg I get a really bad flare and have to go to 5mg for a few days until it settles. Any kind of trauma can trigger a flare. Work with your body and if it tells you to increase a little don't fight it, our body tells us what it needs by screaming at us when we ignore it.
Some people don't develop raised markers during a flare when they are on pred, even at low doses. A fall is enough to trigger a flare of symptoms - even if it doesn't trigger an increase in the activity of the underlying autoimmune disorder.
Have you tried manual therapies for the shoulder and neck pain? It could be myofascial pain syndrome which is often found alongside PMR and at higher doses improves with pred. It is often the reason for apparent flares in symptoms that are just one-sided. Bowen therapy helped my shoulder and neck pain - but the physio and her manual mobilisation has been even better. Far better in the long run than cortisone shots which should be limited in number because of their potential effect on tendons and ligaments.
Thank you all for the support and feedback! I really appreciate this since I feel like no one else understands!
I do want to limit the cortisone shots, I know they're bad news. I have pre-existing spinal problems w/ pain so sometimes I'm not sure what is from that or the PMR with my shoulders. But my entire body is sore and so fatigued I know that has got to be the PMR. I started PT after my fall to loosen up my shoulders and that has helped some.
I finally cam to the conclusion that I should up the Pred because I am barely functioning now. I have had other docs in the past that will not allow that if my inflammation markers are within normal range. They have pushed very hard to bump down my dosages and get off. Even with one rheumy I was sitting there crying because I couldn't get off the couch. She still told me "Bump it down!" I went to another doc after that. The docs have warned me about the bad side effects of being on long-term Pred and typically have pushed to taper down so it became my goal to get off.
I think I felt like I was just "supposed to be" feeling better so pushed through. Seeing what everyone has gone through on here has been very helpful and validating for me!
Will let you know what the Rheumy says today. (BTW I have never heard of Bowen therapy?)
Eric Matteson is a top rheumy at the Mayo who has been involved with drawing up guidelines for PMR - he is concerned doctors are unjustifiably withholding pred from PMR patients. Other than Actemra, a biologic which costs a fortune, pred is the only management for PMR. It isn't their pain - and frankly, if being off pred might let me live longer, I'm really not sure I want to if the PMR is there.
There are quite a few Bowen therapists in the USA - just google it.
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