Following a telephone consultation with a new Rheumotologist back in August I got a copy of the report sent to my GP today. I’m a bit concerned as I’ve been on steroids for over 6 years and have never gotten below 12mg. I’m currently using the DSNS method and going from 14 to 13 mg and am at week 3 and the pain is getting worse, the last 3 days being not good.
In the report he says that he feels as my inflammation markers are now lower at 6, they were 64 at the start, I actually don’t have PMR but it’s Fibromyalgia that I was diagnosed a few years before the PMR diagnosis.
My questions are if I reduce steroids I get flares so does the pred reduce the CPR reading? Should I be concerned that he seems to have pre judged before we’ve even met? Pred doesn’t have any effect on Fibromyalgia as far as I know and I definitely get relief from taking it so I'm at a bit of a loss.
I guess I just have to wait for the face to face appointment I have with him in the 5th Nov. Any advice would be appreciated.
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Griggser
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Thanks for your reply you’ve confirmed what I thought.
I was put in Methotrexate and it had no affect. I also had Myconphenolate Mofetil, Leflunomide, Hydroxychloroquine non of which gave any benefit and I also had Azathioprine which made me very ill.
I have been on steroids 6 years too and have only managed to reduce to 5mg and in lot of pain. I was diagnosed with Fibromyalgia 7 years before PMR and GCA diagnosis. My new Rheumatologist feels it’s more Fibromyalgia now and not PMR according to a letter she wrote to my GP and Neurologist. Unfortunately she never told that to me personally and hasn’t seen me in 12 months. At my last appointment she told me to just keep reducing steroids no matter how much pain I have! My CRP and ESR just increased as I reduced steroids and at similar levels now as before steroids. I know steroids do nothing to treat Fibromyalgia but how come I had such relief immediately I started them. Pain has returned since reducing steroids.
So I feel just as confused as you about the whole journey.
I have also been diagnosed with fibromyalgia and PMR (and psoriatic arthritis, but I won't talk about that now) and find that my PMR pain is different than my fibro pain in that the pain from PMR is from the hips up, while the fibro is "all over". In fact, it was the change in location from "pain all over" to "pain in my shoulders and neck" that caused me to realize that something has changed and led to my being diagnosed with PMR. My rheumy says that the disease causing the most intense pain will mask the pain of the other diseases; I think he is right. He also says that a flare of my PMR can cause the fibro to flare or vice-versa.
Another fibro vs. PMR difference for me is that my fibro does not cause me stiffness like PMR does, even though the fibro makes it hard for my muscles to relax.
I can't differentiate between the fatigue of PMR and the fatigue of fibromyalgia. They seem the same to me.
Hope this is helpful, but I realize that everyone is different . . .
I no longer go to a Rheumatologist as the one at our local hospital seemed totally useless to me with no idea what PMR was or the problems and pain it causes. he seemed to think if I could raise my arms above my head I did not have PMR. His senior nurse new what she was talking about but in the end I have refused to see/use him again. That was Northampton General Hospital UK.
Hello Griggser, I really feel for you too. I have been and am, in much the same position as you. Been on Pred for over 5 years and have been stuck at 10 mgs for these last few months though I had tried the DSNS method of getting to 9 mgs, a couple of times.
I saw a rheumatologist registrar at the end of February instead of the usual rheumatologist, all he did was look at what had been written down , tick boxes, and yet again, reiterate what I had been told before by the rheumatologist, that PMR was “ no longer active “! She had told me maybe there was a transfer to Fibromyalgia. But really I have been dismissed! My wonderful GP, ( think the same as you have) told me that saying PMR was no longer active , was rubbish, as my CRP had been reduced, which as he said would happen if the inflammation was reduced by taking the steroids! He has been so supportive to me over the years and sadly is now retiring.
I now have steroid induced diabetes and discovered on my latest blood test that my CRP had gone up to higher than it had ever been.
I really don’t know if , for me, it is worth trying to see a rheumatologist. My GP sorted out even DEXA scans that the rheumatologist said I needed and hadn’t done anything about.
So, probably being stuck between a rock and a hard place. Both of us! I have been assured that the GP who is taking over my/our GP’s list is very good and that he would be happy to have her as his GP, so fingers crossed!
Good luck with your next appointment! Keep us posted!
Hope he has passed on his knowledge of PMR to the replacement! What a loss. Maybe some of these really good GPs could get together and write a book on how to manage PMR and the pits doctors manage to fall into!
Seems like we might have the same doctor as I’ve just learnt he is retiring and a lady is taking over? I think it will be an interesting appointment on the 5th!
Yes, indeed, that would be interesting! Sadly he is leaving this week. I do wonder whether he will miss doing what he has done so well for a long time. He looked after the newly qualified and going to qualify doctors too. Think they were very lucky to have him mentoring them.
I was about to suggest that the retiring GP and the new GP and the patient get on the phone, at least, and have a heart-to-heart conversation. It would be helpful if the new GP had a copy of your medical records.
Be prepared to repeat the phrase "so what does that mean in English", and that you get a chance to relay your understanding of what was said, and what will happen in the immediate future, as the conversation is coming to a close.
I found this very effective when I suspected my mother was being overmedicated/undertreated for a constellation of symptoms (unrelated to PMR).
I shall have to have ( probably a telephone ) appointment with the new lady doctor after having my bloods done. My lovely GP suggested doing this at the end of November. I do so hope she is nice and receptive as well as supportive , though am certainly going to miss him. He has been a star, for me! First met him in 2009 when I had a brain haemorrhage and I was a gibbering wreck ! He was brilliant so obviously stuck with him!
Fingers crossed your appointment goes well. That you feel listened to, think that is one of the main things.
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