After being on pred (7mg) for the past four years, my rhumi insists it can't be pmr as I'd have been cured by now I realise from here that this is not always the case.
He has prescribed nefopam to take whilst reducing preds. However, nefo is not agreeing with me at all, I struggle with most painkillers.
My GP also hassles me about pred as I have T2 diabetis . With my rhumi and GP I have expained I would be over the moon to come off pred, IF they can offer an alternative for the pain. Nefopam is they're plan.
Has anyone had any experience of taking nefopam and any similar issue with the Docs ?
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RevSmallwood
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Instead of changing your meds - I'd suggest changing your rheumy!! For one thing - to say PMR would be "cured" by now shows he doesn't know much about it. Wonder if he tells his RA patients that they can be cured?
In all the years I've been on the forums I have come across most painkillers being offered at some point - this I'd never heard of. But somehow I doubt it will do much for PMR.
Haven’t seen nefopam mentioned much on here, and certainly have no experience of it - sorry. But I’m sure many will confirm they have had issues with doctors wanting them to be off the steroids.
As you say you are at 7mg - how long is that, and are you having issues getting below that dose?
Did I send you a copy of my slow taper, or am I getting confused...
can’t seem to find original message if I did? If so, hasn’t that helped you get lower?
As you rightly say, just because you’re at 4years, don’t mean PMR is gone!
If Nefopam works they may be right it is not PMR. However as pred did work it likely they are wrong. I sometimes feel I am living in an alternative universe when I hear of some of the bright ideas some doctors come up with.
Thanks for those replies.You're right, I think I should change Rhumi as he's completely stuck on the opinion that PMR only lasts 18-24 months and isn't prepared to look past that and he's rude with it.
He's had me on methotrexate with no results and now it feels as if he's only putting me on Nefopam as he's convinced it's not PMR.
Yes Dorsetlady I have tried your taper method, I just can't seem to get past 5.
Thanks to you all for your reassurance I'm not bonkers x
Well in that case I would suggest that 5mg is what your illness needs at the moment - despite what rheumy might think! Won’t be forever, but is for now….
If you can get to 5mg you re doing really well. It is a dose you can stay on for years if needed. I was borderline T2 diabetes...changed my diet...and now manage very gentle exercise every few hours (basically keeping everything moving) . Also kept my weight down ( reducing weight can help improve T2...only about 10% of T2 are skinny types) . There are so many really knowledgeable people on this site...there are links you can show your rheumy...if he is prepared to be educated. Every good wish.
My rheumy was pleased that I got to 5 mg after 4 years at 7 mg. She said I could stay on 5 forever without too many problems. Sadly I had a flare 4 months ago and its back to 7 mg, she agreed that my blood tests showed that PMR has returned.
Nefopam is considered to be a strong painkiller and is often used for post surgical pain. It can produce some unpleasant side effects so can I suggest you read the patient information leaflet first. It acts centrally in the brain and must never be taken by anyone who has taken Monoamine Oxidase Inhibitors for depression. Personally I think you'd be better off with a pain killer that had a bit of activity against Interleukin -6 as that is the bogey-man in PMR. It's not for me to suggest which one but perhaps you could throw that little nugget into a conversation with your Rheumi and see what he says!!!
OK here goes. Interleukin -6 is an inflammatory cytokine. Cytokines are the chemicals which the body produces as part of the inflammatory response. There are lots of different ones but for us with PMR and GCA, the one we are interested in is IL-6. The textbooks say "PMR is an autoimmune condition characterised by the over production of IL-6". It's the IL-6 which causes the tissue damage associated with the inflammatory vascular diseases which is why treatment aims to reduce the amount of IL-6 produced and /or block its effects. IL-6 does have beneficial effects when produced in normal amounts but I will leave that aside . Our bodies start to produce IL-6 at around 4am so by the time we wake up and start to move around it has had time to exert its effects hence we feel muscle soreness and stiffness. This is why many advocate and get more relief from their steroid dose by taking it at 2am so the tablet has time to dissolve, for the drug to get into the blood stream and suppress IL-6 production. Corticosteroids like Prednisolone are the only treatment option in PMR. The reason why standard pain killers don't work is because they tend to act on prostaglandin synthesis, or in the case of Nefopam act in the brain via more complicated biochemical pathways. There are a few Non-steroidal anti-inflammatory drugs (NSAID's) which have a little bit of anti IL-6 activity but it's not great and they would not stop PMR in its path. The biologicals which you will see mentioned here (Actemra) stop production of IL-6 and have only recently been licensed for GCA and are also not without their problems.
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I realise from here that this is not always the case.
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