Should I continue tapering even though I still have pain from PMR?

[Jackie_boy]

I’m in a difficult place at the moment as I have conflicting issues around my prednisolone dose. I’ve had an autoimmune blood disorder for about 7-8 years for which steroids have been the ongoing treatment. I reduced my dose to around 1/2 mg per day by last year and then suddenly developed PMR in November. My GP immediately put up the steroid dose to 15mg daily. By January I was still having some degree of pain and the GP wondered if the diagnosis was correct and told me to reduce the steroid dose to 10mg. That was a disaster and I had such a bad reaction, immediately going back to the 15 mg. Meanwhile my blood count had gone down and the haematology people were getting concerned and so gave me a four week course of Rituximab infusions. This has improved the blood count and they have been encouraging me to reduce the steroid dose which I have done very slowly going down half a mg at a time and now I am at 7 mg daily. I would like to reduce further but reading the posts on this site about this being a critical level, combined with the fact that I still have some pain in my shoulders, wrists and knees, I am anxious. Any advice will be welcome. Being new to the site, I am relieved to see that there is a wealth of experience amongst members and I don’t feel that the GP is being very helpful, or perhaps just isn’t very knowledgeable about PMR. Thanks!

[DorsetLady PMRGCAuk volunteer]

As the symptoms sound suspiciously like PMR, I would be inclined to say put a hold on the reducing. If it PMR, then reducing dose will make it even worse.

Did you have relief on the initial 15mg? Or the second time around?

As you sat you still have some pain, does that mean it’s never been completely controlled?

Might be an idea to stay at 7mg and see if things plateau - you really don’t want to have to increase again, but if your PMR is only 6-7 months into in lifespan you may well have gone below the level your illness needs.

Plus a taper of 8mg within 5 months is actually very quick. You might have been reducing 0,5mg at a time, but it sounds as if you’ve passed “your” level of Pred required.

I would say you GP is probably less knowledgable rather than being unhelpful, so you need to be the one in control.

[Jackie_boy in reply to DorsetLady]

I was slow to respond to the steroids, but having said that I had been on them for a few years at different doses for the blood condition . The GP expected a result in about 2-4 weeks but it took longer, more like8/10, and at that point I did have pretty much full relief from pain.

[DorsetLady PMRGCAuk volunteer in reply to Jackie_boy]

Well if you had good results, than that points towards PMR - what dose were you on - still 15mg?

[Jackie_boy in reply to DorsetLady]

Yes, I went on to 15mg and had good results from that. Now having dropped to 7 mg I still have pain and a variety of other symptoms and although I can live with it I’m by no means comfortable. Sounds as though I should stay where I am and certainly not reduce any more, on the other hand I don’t want to go up. I get such vague advice from the GP as previously said, they don’t seem to know much about it and there’s been no suggestion of seeing a rheumatologist.

[PMRpro Ambassador]

Why are the haematologists so keen for you to reduce pred? I bet they don't know any more than your GP when it comes to PMR!

[Jackie_boy in reply to PMRpro]

As I’ve gone through the various stages of managing the blood disorder, it’s always been an issue that they want me to reduce the steroid dose and they would really like me to be on zero. This is explained partly because they view long term steroids as potentially damaging and partly because they want to see how the disorder progresses without them. That’s all made sense so far and what I’m experiencing at the moment is as a result of several years of conditioning to reduce steroids.

In fact the specialist haematology nurse has been far more ready to discuss and advise me on the PMR than the GP and she recommended this site. The consultants are the ones pushing for the reduction.

[PMRpro Ambassador in reply to Jackie_boy]

No-one wants to be on pred unnecessarily - but when it is the only option for managing a disorder there is Hobson's choice. But you do get a lot of doctors who are only interested in their thing - and many who cannot believe that pred and only pred works in PMR.