Scans show a residual amount of GCA but still suffering!?

[Stkeyna]

I have had GCA for about 12 years now after having polymyalgia

initially for about a year. From two pet scans, in the last 6 years,

I am told that I only have a minimal residual amount of GCA therefore all should be well.

However, I still suffer from the same symptoms I always have i.e.

tiredness, headaches, lightheadedness and generally feeling rotten. I

am wobbling at the moment at 10 mg but I did get down to 8mgs about 6

months ago and was amazed that my polymyalgia suddenly returned in full force

i.e. painful thighs, shoulders, neck and headaches. This I hadn't felt

for 12 years. Can anyone explain this i.e. if scans are showing

virtually nothing wrong why should I still continue to suffer and that

polymyalgia should pop back up after 12 years?

[PMRpro Ambassador]

Depends a bit what they looked for - and if it was PET-CT pred at even those sort of doses can suppress the signal in the scan. I too have PMR symptoms - but there is no large vessel vasculitis to be seen. I've had PMR for over 15 years now - have been down below 5mg once a few years ago and then I flared. My symptoms are the same - but I don't ever have the sore scalp and other typically GCA symptoms I did briefly in the early days.

There are a lot of things (not just GCA/PMR) where the symptoms experienced may not be matched by what they can image. And in the case of PMR symptoms - I think there is a lot going on in the tissues that can't be imaged.

When you say "painful thighs" - what do you mean? I don't have the claudication I had originally, but if I prod my thigh muscles they are sore, much more than would be expected from the level of prod ...

[Stkeyna in reply to PMRpro]

Thanks for your response and we do seem to have similar traits, In my 13 + years of PMR/GCA I too have not had scalp or jaw difficulties. I had my initial PMR with a sore neck, shoulders, and hips/thighs with headache then I moved onto GCA with headache, tiredness, lightheadedness and feeling rotten - nothing else. And the latter has stayed with me for 12 or so years. Picking up on your point about thighs/hips - I don't have to prod mine they just ache when walking and mainly in the mornings.

I was always told by the various consultants that if suffering from headaches, in particular, then go up however I was advised by Prof. Dasgupta that after so many years of Prednisolone and reading my scan results that it was in fact the prednisolone that was causing my problems and not GCA!!! I was sitting at 12.5mg over a year ago when he told me this. So I set off to reduce my input thinking things would be easier but when I got to 8mg the PMG kicked in - which shocked me. The symptoms being very different from GCA as I said previously with hips, shoulders, etc aching! I then spiralled back up to 15mg and have been trying to get back down again and now sit at 10mg but still having problems.

Can I ask what level of pred are you on and how you deal with the long term effects as well as depression? My consultant, Rod Hughes, as always said that I need to get down to 7.5mg to be safe and that anything long term at 10/15mg is a concern. How do you cope with that?

[PMRpro Ambassador in reply to Stkeyna]

I will not compromise - I take what I need to function. For a long time I was at and below 10mg, even got to 4mg and then a big flare happened that hasn't really gone. My husband has been quite ill for about 2 1/2 years and I've been in a peraenent flare since January last year when it got worse. Then came Covid. I do keep trying to get down but after a couple of weeks at 13mg I can't cope. I tried methotrexate and that was awful.

But I don't look Cushingoid, I'm overweight but I've been overweight all my life. I have no sign of diabetes or cataracts (I wish), my bone density is still fine even after 12 years of pred and no alendronic acid (just calcium and lots of vit D). My skin isn't too bad, I bruise but I am on anticoagulant therapy for atrial fibrillation caused by the autoimmune part of PMR - and part of the pred dose is to keep that under control too as it is always worse if I flare. We can't identify any damage done by the pred so far - and it gives me a decent quality of life. No point being unable to have any life - it's hard enough anyway!

[venezia1 in reply to PMRpro]

May I ask - after so long on pred, have you had a synacthen test?

[PMRpro Ambassador in reply to venezia1]

No point when I have not got below 5mg for more than 6 months. Above that there is no point - your adrenal glands won't be producing cortisol because they know there is plenty of corticosteroid present to fulfil all necessary functions.

[venezia1 in reply to venezia1]

I ask because after being on pred for 9 years I began to feel more and more exhausted. I read on the site about adrenal deficiency after a long time on pred so asked for a test - turned out I had none at all, so am now on hydrocortisone for ever....I'm cross about it because I shouldn't gave had to ask - they should give you the test after seven years, I think.

[PMRpro Ambassador in reply to venezia1]

Mmm - but my point is that there is no point and no real need until your PRED dose is low enough as pred does the same thing as the cortisol. Some of the fatigue must be due to aging - and probable loss of fitness in the muscles because of the pred which can cause myopathy.

[Stkeyna in reply to PMRpro]

PS. I meant to add that I have had two PET scans in the last 6 years or so. One without pred and one with. No real difference in the scans both saying I had a residual amount of vasculitis.

[Stkeyna in reply to Stkeyna]

Thanks for sharing your experiences with me and yes quality of life must jump to the front of the queue. Delighted you are not showing any damage caused by pred. so far and long may that continue. If you can then hopefully you will try again at dropping even if a small amount. Rod Hughes tells me I will get down below 7.5mg but I am not so sure. It's a long way to go after so many years. The number of years on the clock must count - physically and mentally. Anyway good luck!