I have PMR and am on 7 mg prednisone. I have just been diagnosed with MS. I also had a nerve pulse ablation for chronic back pain, which seems to have failed. I am feeling a lot of pain across my pelvis which varies from actual pain to a rheumatic ache.
If anyone can throw any light on my situation, I would be very grateful. I am wondering whether the rheumatic ache (particularly bad yesterday with high humidity) is PMR, My shoulders are fine. I would like to reduce my prednisone.
Many thanks - you have been such a support so far. Jane
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Jane424
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Hello Jane424. I have no experience of either MS or nerve ablation but a couple of thoughts spring to mind. Had you been told what symptoms you might experience after the nerve ablation and have you actually been told the procedure has failed? It is difficult to say if the pain is associated with PMR.
My personal opinion is that you should consult the department that carried out the procedure. Depending on when that was it may be that the treated nerves have simply not yet received the ‘message’ and are still alive and kicking.
Another suggestion is to look on the Healthunlocked MS forum where others may have experienced your problem.
I hope all this is sorted out for you soon. Oh, and I wouldn’t reduce the pred just yet.
Thnk for good advice. i see the ablation doctor next week and want to give him accurate feedback. No, I shouldn't be having this pain after the ablation. I also don't know how much is the MS. I just thought my shoulders being fine might indicate it is not my PMS or that my PMS is controlled by the prednisone and this is something else. Bless you. Jane
This must be so hard for you. I wonder if your appointment could be expedited or at least advice offered for something to ease the pain in the meantime. Whatever happens you have my best wishes. I look forward to hearing better news soon.
Thank you so much. If the aching is PMR then I don't think more ablating will help, but sometimes it is direct pain. Can MS cause aching? Very confusing. Bless you. Jane
If this is the PMR then you don't want to reduce the pred - and while all of us would like to get off pred, when it comes to PMR there isn't much alternative except putting up with the pain. I felt utterly rubbish this morning with a change in the weather but it is omprovong now in late afternoon.
Can you make friends with your pred and accept the quality of life it gives in terms of pain relief?
Me too with the weather today. My question really was is it PMR if my shoulders are OK? There are so many more reasons for the back and I have to see the doctor who did my ablation next week to decide whether to do a further treatment. My current 7 mg isn't doing it with the rheumatic pain either. Sorry to be so complicated! Jane
Actually, most of us are - and that is what fools the doctors! PMR affects the shoulder and hip girdles but it can be one or other or both. Virtually every patient has their own version of it - not least I believe because there are several underlying causes. The term PMR is not the disease itself, it is the name for a constellation of symptoms that are caused by an underlying disorder which may be an autoimmune problem or it can be other things including cancers. Unfortunately, the vast majority of doctors don't really understand that,
If the 7mg isn't cutting it, you need more, There is no point taking a dose that is too low, you just end up back at the beginning again so you get all the downsides of pred with no benefits to compensate. What usually happens is you need more to clear out the accumulated inflammation and then you are able to get to a lower dose - but you have to springclean before you can go back to daily dusting.
So sorry about the additional disease. A friend with MS who does not have PMR had a recent “attack.”. Her treatment was four days in hospital with high levels of steroids.
Thnks - yes the steroids for MS are very high. I upped my prednisone and the ache has gone, but we also have low humidity today! This has clarified the pain I have left after the ablation which the PMR was hiding. Manny thanks, Jane
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