been a few weeks since last post. Struggled with random/unconcerned/unhelpful/inexperienced GPs within practice.
After struggling with reduction from 20mg to 15mg pred, now back up to 20mg, symptom free. Reduction of 1mg every 4 weeks with review and bloods taken 6 weeks, I now feel so much better and able to cope. Given one GP to refer to within practice.
Only diagnosed in April so new to this PMR journey. Grateful I found forum and so many people to be helpful and positive at a very worrying time.
Written by
Scarysit
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Hi Scarysit!🙂Was good to read your experience: I am in a similar position. I hope your gp gives you the support and care you need. Hope you feel very much better soon.
Oh yes, a LOT of effort! Such a relief when I finally got face to face appointment and a GP who listened, is seemingly quite knowledgable in regard to PMR and was interested!!! Is going to monitor bloods and progress, is my contact if any issues occur.
I was really struggling with symptoms. I began to think I was a hypochondriac. I’m also learning to pace myself, a toughie as I’m normally very active/busy. I’m getting there. And acceptance has taken a while too. All the usual things.
Having a fixed contact is so useful. I am a fanatic for continuity of care - although it did me no favours as the little lad knew nothing about PMR! Once I knew what it probably was, then he referred me as he was out of his depth. Though given the numpty I got, I don't know if an earlier referral would have helped. Hope this all goes well.
That’s the problem, there seems to be scant knowledge of PMR, and I found there to be a set regime for reducing prednisolone that could not be adjusted, no matter what! No credit given to fact that patient mature enough to understand body rebelling and needs help.
I intend to stay positive and optimistic that this debilitating condition can be managed successfully however long it takes for it to ‘burn itself out’
The greatest unmet need at present is not for an expensive drug that NICE won't approve - it is firstly a definitive way of diagnosing and secondly abandoment of the ridiculous assertion it only lasts 2 years max. It can last far longer - and messing the patient about at the start contributes to an extended disease course. I couldn't see why that should be but mention has been made recently of one rheumy's concept that the immune system becomes "trained" and won't "unlearn" the autoimmune behaviour. Certainly, chronic pain can be a learned problem so why not, and a combination of the two?
The greatest unmet need at present is not for an expensive drug that NICE won't approve - it is firstly a definitive way of diagnosing and secondly abandoment of the ridiculous assertion it only lasts 2 years max. It can last far longer - and messing the patient about at the start contributes to an extended disease course. I couldn't see why that should be but mention has been made recently of one rheumy's concept that the immune system becomes "trained" and won't "unlearn" the autoimmune behaviour. Certainly, chronic pain can be a learned problem so why not, and a combination of the two?
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