It’s Been A While

[ValFF53]

Hello everyone

I have been fortunate to have been symptom-free for a long time and so have not been active in this group.

Unfortunately, just before Christmas last year, my PMR returned.

My GP prescribed 10mgs Prednisolone initially and then I followed his instructions of reducing the dosage by 1mg every month.

I have been taking 2mgs daily for quite a while and the pain has now increased significantly.

I was sent for various X-rays and blood tests and my inflammation markers are now higher than when I first started the steroids a year ago.

My GP is phoning me on Monday and I concerned that he will not prescribe a high-enough dose.

I cannot help but wonder if things would have been different if I had started on 15mgs and hit the inflammation harder at the start.

I did see Dr Hughes during my first episode of PMR and would like to be referred back to him but am worried about requesting it because I might offend my GP by insinuating that he is not knowledgeable enough about PMR.

I see that the three people (PMR Pro, Dorset Lady and Sheffield Jane) and I am sure there are others who were such support to me about seven years ago are still giving so much of their time helping others navigate this distressing condition.

[PMRpro Ambassador]

Welcome back - even if you don't want to be here!

Did the 10mg get you pain-free - or at least pretty much so? At what dose did the pain return? Really, as soon as that happened you should have stopped reducing and gone back to the last good dose. If the 10mg did the job, fair enough, However - whatever dose you start at, 10mg or 40mg, once you achieve the dose you need, you have to stop reducing or the symptoms return/ The pred cures nothing, it is a management strategy.

I wouldn't be concerned about offending your GP, he has already showed he isn't brilliant at PMR!!! And if you can get back to Rod Hughes on the NHS, no-one should turn down that chance!

[Excelsior80]

My GP seems to be using standard rheumatology guidelines on tapering, and they say in the guidelines this may need to be adusted for different people. But nothing about exactly how they should be adjusted, as far as I can see....slower, higher dose? Perhaps the new guidelines they are working on will have more on this.... Someone I know who relapsed recently after a few years told me if you relapse you are considered non standard and should be referred to a specialist, is that right?

[PMRpro Ambassador in reply to Excelsior80]

Mostly slower!!!

If you relapse after a few years that is very different to relapsing during the first episode. Relapsing during tapering isn't the same - it is almost always due to a reduction programme that is too fast or in too large steps. It isn't nonstandard at all but many doctors who don't understand the nature of PMR think it makes it atypical.

[Excelsior80 in reply to PMRpro]

i think it was relapsing years later that they said should get a specialist referral. I'd have liked more detail in the recommendations, from this group I found the ideas of slowing down on lower doses and not reducing if any symptoms. If the GP should adjust tapering based on patient experience us patients need to know when to go back to them. I was impressed by the amount my doctor managed to explain in a very short time at the start but i still left with the impression the dose would normally reduce according to plan. I would have gone back to GP with full relapse of symptoms but perhaps not with some symptoms returning at a lower level. I didnt at all grasp the idea of reaching the necessary dose and stopping there a while...nor the idea of increasing for serious illness or stress.. (She did also suggest I look at the pmrgcauk charity for more information.)

[PMRpro Ambassador in reply to Excelsior80]

I honestly can't see why - the possibility of it happening again is there for life, just for most people it goes into remission and stays there. Consistently relapsing PMR first time round should be referred, especially if it isn't obviously due to a crazy reduction plan. Some doctors THINK that you can taper to a fixed timetable - even one consultant we know of is insistent that is how it works - but other consultants are mercifully much more realistic.

[Excelsior80 in reply to PMRpro]

to be fair it has gone according to plan so far, I just like to be prepared. I think my reply originally was a long winded way of saying i thought a specialist opinion was recommended on relapse and probably not a problem for the GP! Sorry wandering off topic ValFF53

[Flivoless]

I was proscribed 15Mgs per day when I first succumbed to PMR but that didn't even touch the pain. I then went to 25mgs and blessed relief was mine almost immediately. I would suggest to you that your 10 mgs is insufficient and you should perhaps consider 15 mgs and hope that gets you pain free but don't be afraid to go higher if you need to as there is no point in doing half a job as PMR will always win. You may be able to reduce a little more than 1mg per month to start with, assuming 15mgs or more, but the further you reduce the lower the reduction should be. I wish you all the best.