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At last a permanent Rheumy -I hope

finally got to see the new man in post today. What a refreshing change. Listened with mounting horror to my experiences so far. Then completely confused me by saying he thought that I might just have Fibromyalgia as well as perhaps GCA , but instead of PMR. Anyway now I have one empty arm as he has done loads of blood tests, to try and confirm what I do or don't have - can't wait for the answers. Either way I still have to get down from 30 mg Pred. and so far my body has not thought this a good idea. So another tapering scheme but with permission to try Dorset Lady's if I struggle with his plan.

The only good thing to come out of all this so far is that I have lost about 2 Stone in weight, and that had it's drawbacks because it isn't helpful if your pyjama bottoms get to the bottom of the stairs before you do. Oh and the other good thing is that I am officially allowed to come off Alendronic Acid as my DEXA showed that I don't have any significant bone loss - huge sigh of relief.

Onwards and sideways I guess. I am feeling as though this is some weird version of the Crystal Maze - never quite sure what the next challenge will be, but quite sure that if I don't get over it quickly I'll get locked in.

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There is nothing "just" about Fibromyalgia according to my friend Liz who was housebound with it for a year. I do feel though that it is a cop out diagnosis sometimes, for inexplicable aches and pains. Great news about the dreaded AA. Keep a beady eye on yourself and follow DorsetLady's tried and tested reducing plan. I am her devoted follower since she told us that she had that " I woke up one morning and it was gone" experience that we all dream about. Careful management and positivity I expect. Your new man seems alright. I had to laugh about you descending the stairs after your trousers. Keep smiling!

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You are right of course. Whatever it is that I have got changing the name doesn't seem to have made it any better. However I am not going to let it get me down, I am using Dorset Ladys taper, theone he wrot on my prescription form looked all to sudden to me although in fairness it wasn't gret chunks like 10 mg drops and he did say that if symptoms came back to go back up to the last dose that worked, Although is it just me, but it never seems to work quite as wll when you do have to go up.


No, not just you - if you get into a yoyo pattern with dose, going down too far, going up, going down it does seen to get increasingly difficult to get things under control again. Which is why we emphasise SLOW, small drops and not going into denial about returning symptoms. Catch it quickly and it is far less of a problem and in the end you probably use less pred overall.


Slightly bewildered as to why he thinks you have GCA and the symptoms aren't PMR-type symptoms which often accompany GCA.

However - no AA is a decided positive...

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Tigger, I have a suggestion for those pajama bottoms....


Or a shopping trip...nothing feels nicer than new PJ's.


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