Here I go again!

I have not had a definite diagnosis, I have been treated for G.C.A. but had loads of further tests, PET/CT scan, (no added inflammation found) nerve conduction tests (for numb feet), bone marrow tests, (all o.k.), I am now told I am pre-diabetic, and border line anaemic, I had all the symptoms of G.C.A. including double vision, aching jaw, swollen temperal arteries, I was being treated for PMR before this. the Pred. worked like magic, all symptoms gone, but on being examined when I got the swollen arteries, the Rheum. who had given me the Pred. didn't think I had G.C.A. and stopped the Pred. A few weeks later I developed the double vision, weight loss etc. and was put back on the pred. my thyroid comes back o.k.

Um - if you had a PET/CT scan while on pred, even a low dose, the results would have been skewed.

However - if what you have is GCA and I have understood your story correctly, then it would not be surprising if you needed MORE not less pred. GCA is a heavy duty version of PMR and many people struggle to get below 20mg. Your rheumy did cause trouble by taking you off pred - that often makes it more difficult to get things under control again. Have you ever been at what I would call a "proper" GCA dose? 

I think I might be considering looking for another rheumy who has more idea and more courage of their convictions.

So let me get this straight.  You had PMR symptoms, took pred and the PMR symptoms resolved and you felt painfree?  Then a rheumatologist decided you didn't have PMR and made you stop the pred (how quickly?) and soon after your symptoms came back with a vengeance, plus you developed symptoms of GCA?  Or did you have GCA symptoms from the beginning?

The prediabetes can be a pred side effect.  Cut out all the refined carbs and eat high protein foods.  I developed high blood sugar when first on pred and brought it under control by doing things like not eating cereal for breakfast, nor sandwiches for lunch, nor pasta for supper.  I eat lots of nuts and other high protein foods instead.  And exercise, of course....

 

I went to A&E in Nov.2015 with swollen Temp. arteries etc. that day I was given 40mgs. of Pred. two days later I saw a Rheum. (still on Pred) who didn't think I had G.C.A. because as I said some time ago, I could lift my arms above my head, and my aching was in my jaw and not in my cheek as it usually was. That day she told me to stop the Pred. and go back on Naproxen as I was before the swollen arteries, approx. two weeks later I started with double vision and a shade like covering in one of my eyes, so my G.P. got me in to see a Rheum. in two days and I went back on 40mgs. of Pred. again. As I also said, I now have the same Rheum. I saw originally, as She was training and is now a Consultant. I have complete trust in her, she lstens and is a lovely person, I am just so frustrated by it all. Thanks for helping.

Still not 100% clear - is your current rheumy the one who said it wasn't GCA or the one that said it was GCA?

Sorry Eileen, my current Rheum. is the one who examined me in 2015, and said it wasn't G.C.A. I then saw a Registrar at another Hospital and he treated me until October 2016, he went to another Hospital and my new Consultant is the lady who saw me originally and said she didn't think it was GCA, I apologise for being a bit vague.

No - me being thick, I thought that was what you meant but didn't want to presume.

And you STILL say "I have complete trust in her, she lstens and is a lovely person," You're a lovely person!!

But honestly - I think she needs to consider giving you a bit more pred not a bit less. My suspicion would be that this IS GCA and it isn't being fully controlled by your current dose.

I was due to drop another 2.5mgs. two weeks ago but haven't, I think I will try again next week and go down to 15mgs. from 17.5mgs. I see her in approx. 3weeks and am due to have blood tests before then, thanks for your advice.

I had the same experience with the shade coming down over my eye two weeks ago.  They admitted me, put me on 40 mg pred, then discharged me with diagnosis of TIA after that found plaque on the MRA.  said it us not GCA and brought me back to baseline dose of hydrocortisone and I can barely move with the pain.  I am on 15 mg hydrocortisone.

If you are on only 15mg/day of HC that isn't enough to manage PMR. But I think the doctors are maybe being a bit cavalier - any chance of a second opinion?

Eileen,

This is the third opinion.  They think if I can gut it out it may force adrenals to start working again.  Higher dosing has me too immunosuppressed causing me to develop superbug UTI's.  They said the last one was potentially fatal.

You should be a bit more specific here as "pred" can mean either prednisone (as predominantly used in the USA) and prednisolone which is used mainly in the UK and IS  the active metabolite.  I, on the other hand, had the most awful experience with methylprednisolone in terms of side effects AND even 20mg did very little for the PMR. No problems at all with either prednisolone or the prednisone I am now on.

is the prednisolone different from the methylprednisolone?  I didn't get any response and I see everything is going to my junk email on my iPad hence my delay in responding.  I'm sorry.

Prednisolone is the active form of the drug, prednisone must be processed by the liver to make it into prednisolone. Methylprednisolone is the same structure as prednisolone but with an added methyl group - which is thought to make it more effective as an antiinflammatory but it also can add to the side effects. Not sure how it is metabolised - I assume it is broken down to prednisolone plus inactive compoenets of the methyl part.