I had two really good years with my inflammation CRP at 5 ( it was 70 ) .
This year has been really bad with my CRP constantly around 30 to 50,. and constant pain .
My consultant doesn’t like me on steroids but i have been so bad with pain she put me on 20 mg for a week followed by 15 mg for a week 10 mg for a week and then 5 mg. This is having no effect .
Am I correct in thinking that the inflammation has really to be knocked on the head initially with higher and longer doses to get to back to that 5 . What seems to happen to me as soon as I reduce because the inflammation hasn’t ever got to 5 that it comes back even worse each time .
I am also on lefludamide .
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That was my first thought, that taper was brutal. You are sick and you need the right remedy. Lefludamide appears to be doing nothing. Have they tested you for LVV/GCA? I think they should.
What is LVV? I should have added that I have only been on lefludamide for 5 weeks and i know it takes time 6 weeks to start to kick in . I was on methotrexate before.
It is large vessel Vasculitis that ought to be considered if your PMR keeps flaring up at 5 mgs. I found the symptoms vaguer than cranial GCA and was diagnosed by an ultrasound vascular scan initially.
if the increase in Pred has hasn’t helped at all then I would query if the pain is totally from PMR… and high CRP reading can be caused by other things. Perhaps your consultant needs to be looking for other reasons. See you have rheumatoid arthritis, and although the lefludamide should help that perhaps it’s not as much as it should be? Perhaps a switch to MTX? As suggested maybe GCA? Any head pains?
No head pains ., I do have palindromic arthritis which is like RA . I know there is a RA site but felt that your PMR site is so good as regards steroids use .
No that’s fine, a lot of patients on here do have RA as well, and there is a member with Palindromic Arthritis who hopefully will read this, so you are very welcome.
But whatever you have you shouldn’t be in constant pain… either your dose is not enough for your current illnesses, you are on the wrong medication, or you have something that hasn’t been diagnosed properly… so to that end I think you do need more investigation.
I know what it’s like to be undiagnosed for a long time and in pain, so I do sympathise. It’s very draining… hope you can get it sorted
Well WE think so, whether the scientific facts support it or not. Reducing and allowing a flare that isn't then comprehensively squashed does seem to result over time in increasing difficulty in controlling the inflammation and needing more - longer or higher - pred.
If you have palindromic rheumatism then the reluctance of your doctor to use steroids seems misplaced - you are only likely to be on them short-term to get this flare under control and then later the leflunomide should work to control it. The elephant in the room is Quality of Life - and she doesn't seem willing to address it. Palindromic rheumatism does often presage another more consistent form of inflammatory arthritis - in about half of patients it turns into RA - and maybe that change has already happened but isn't responding to the leflunomide. Why were you switched from MTX?
Switched to methotrexate as having constant flares . I did originally go to a private consultant who really knocked the inflammation on the head and so had two really good years . I am now in the heath service and have had a really bad year with this consultant who seems to be steroid adverse .I think what you said about about not squashing a flare is spot on . This has ended with me having to take more steroids over time .
I have had two Depomedrone injections . Great for 5 weeks and then back to square one .
I would go back privately but she was in Cheshire and I live in Wales . So in the Welsh health service !
I would attempt to go back - even if I had to use Christmas and birthday presents to do it! My experience of the Welsh NHS is that it is worse than the rest, not that any of it is particularly stellar at present. The occasional specialist visit privately and a good GP would be far ahead of what you are getting at the present with a bigotted doctor,
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