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Newly diagnosed and confused about the goal
Polymyalgia Rheumatica (PMR) | Last Active: Sep 17 10:59am | Replies (68)Comment receiving replies
@bindie I would modify the definition of the goal to be remaining pain free while reducing the prednisone to the lowest possible dosage. Prednisone is not a root cause treatment for PMR. It does not address root cause it is a symptomatic treatment. Simply said the goal is to remain pain free while you let PMR burn it's self out.
Even the steroid sparing drugs like Actemra, Tyenne and Kevzara are symptomatic drugs and do not address root cause. In reality the medical world does not know exactly what the root cause is, what they do understand is PMR causes inflammation and so they use anti-inflammatories to stop the inflammation from hanging around causing pain and possibly damage.
Replies to "@bindie I would modify the definition of the goal to be remaining pain free while reducing..."
@jabrown0407 thank you.
My Rheumatologist weaned me off Prednisone soon after seeing him. I was on Prednisone for 6 months and he felt too long.
I think you are right about managing the pain until it burns itself out (burn is a good word). I have been really down if anything was helping and if I could get through without some catastrophic hit. I have been in different injections after being off Prednisone. I worry constantly because the Speciality Pharmacy and others cannot always get the medication and has not always been on schedule. Phone calls have just put me in a cycle of calling the same people over and over - Pharmacy; doctor; insurance.
Your comments have put me somewhat at ease thinking that this what I need to do. Was going to go off medication and see if it is doing any good. Blood tests show I am holding and much down from 4 months ago. Don’t know if I feel like that is the case.
We certainly need to hear some Positive things now and then and some basic facts.
Thank you
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@jabrown0407 I would modify your definition of the goal to be to achieve the best quality of life given the competing challenges of PMR and its treatments. I don't think prednisone and the other drugs work completely for some people, so they can't be pain free. Also, based on posts to this forum, it seems that some people prefer to live with a certain amount of pain and discomfort over the side effects of prednisone and the other medications. So the goal for each person is to find the balance they prefer between PMR and its treatments.
For GCA things are much simpler. The goal is to fully control GCA so that it doesn't cause severe injury or death.