GCA/PMR One Year on (?)

Hi everyone. I haven't posted on the site before but find all the questions and answers intriguing. Just over a year ago I suddenly had a very stiff and painful neck with headaches. This quickly spread to the base of my skull and I couldn't sleep at all. Tried heat, airline pillows, everything. Painkillers were no use at all. After 4 days Dr put me on 40mg Pred for suspected GCA and referred me to Rheumy. After one visit she said that it was likely mechanical and not GCA as my neck "cracked" when manoeuvred. I was referred for carotid artery scan which was negative. CT scan ok and biopsy arranged. Whilst having the biopsy the surgeon said there were white patches on the artery and she thought I would be positive. The biop showed a hint of wedge infarct and some skip lesions which the Rheumy said were not indicative of GCA. I was tapered from 40mg to 5mg Pred over 3 more weeks and then had a "flare". I was told to taper again and suffered another flare at 2.5mg.

Sorry for the long post but 4 years ago I had a rotator cuff repair and the following year had a horrific fall down 17 stairs at the gym damaging everything including my shoulder. My shoulder consultant (after many X-rays, MRIs) now believes the "referred pain" I've been experiencing from my shoulder down to my elbow and from my shoulder blade down to my waist is due to underlying PMR (3 years) but my Rheumy hasn't confirmed this to my GP saying that I only have atypical GCA. sometimes the pain/ache in my shoulder blade seems to transmit through my chest affecting my breathing. I also have very painful, weak thumb joints and my lower back has been a problem for about 4 years.

I have read very recently in a answer from PMRPro that skip lesions are a sign of GCA and the surgeon certainly thought this was so. I wonder if you have seen anything like this series of events before PMRPro?

[piglette]

I am so sorry about your problems. Now you have started the 40mg of pred has the shoulder pain improved? If it is PMR the steroids should have relieved it.

[Hidden in reply to piglette]

Hello Piglette. I've now tapered to 4mg Pred but when I was on 7mg was fab. Could do planks in pilates - no shoulder, neck pain or cracking and no thumb or back pain!

[PMRpro Ambassador in reply to Hidden]

You do have to remember you aren't reducing the dose relentlessly to zero - you are tapering to find the lowest effective dose. And I would say you have overshot - 7mg was perfect, how was 6mg? How long did you stay at each dose? At this sort of level you need at least a month at each new dose before you can say it is still enough. And really, 1/2mg at a time is better now you are this low.

[Hidden in reply to PMRpro]

I'm now reducing at 1/2mg monthly - my own decision this time. Got another telephone appointment next week. I really don't know what to expect, i.e. should I strive to be completely pain free or just be grateful the headaches and neck stiffness/pain are being kept at bay?

[PMRpro Ambassador in reply to Hidden]

If you felt really good at 7 - that's how you should feel. Once symptoms start to reappear, you've usually gone too low - for now at least. You will get lower, just not yet.

[Hidden in reply to PMRpro]

I did feel good at 7mg. I think I will have to be a bit more forceful in my telephone discussions which are sometimes with clinical nurses. I always list my queries and make sure I hit them all but they're not always very reliable which their call backs when they have to consult the Rheumy. Thanks for all this, I do appreciate it.

[piglette in reply to Hidden]

Are you saying that at 4mg you feel worse than at 7mg?

[Hidden in reply to piglette]

Yes piglette I have gradually been feeling aches and pains return.

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Well that confirms what’s already been said, you’ve dropped below the level you need to control your illness.

That’s something else to discuss with doctor -no point whatsoever being on a dose that’s too low.

[Hidden in reply to DorsetLady]

Thanks for that. I appreciate your feedback and will chase for an earlier appointment tomorrow.

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Please do.,.

[PMRpro Ambassador]

Depends on what the rheumy meant by skip lesions - but one of the problems with GCA is that the cell changes do form skip lesions and aren't smoothly scattered through the tissue so can be missed.

Did you ever get to see the histology report? Wonder what the pathologist reported - someone just recently had a biopsy and it found calcium deposits in the artery wall which stiffen it and were the cause of the symptoms - it is very rare so I'm not suggesting that although being rare doesn't mean it doesn't happen. And they would appear as tiny white bits.

Sometimes as really good surgeon doing the biopsy might gather more from their part of the job than a less good rheumy might take from the report.

And what does the rheumy mean by "atypical GCA"?

[Hidden in reply to PMRpro]

Thanks for your reply PMRPro. Didn't see the histology report and only one face to face appointment with Rheumy all others phone. I've now been put on 20mg methotrexate whilst tapering from 4mg as I have 2 new cataracts. However I don't think the methotrexate are hitting the spot. I'm under the impression that she doesn't think it's GCA hence the atypical diagnosis which now puts everything into question. I think this is a fab site which provides insight into many different symptoms. Many thanks again fellow sufferers.

[PMRpro Ambassador in reply to Hidden]

If you have cataracts, stopping pred now won't make any difference, they are there and will only go away with surgery. It is easy enough! And if you are already at 4mg - I'd dispute the use of MTX, she is adding another immunosuppreseant and the risks that introduces at such a low dose that the primary problem now is the return of adrenal function. And no guarantees MTX will work anyway.

[Hidden in reply to PMRpro]

Thanks for that. Gives me another question for my appointment.

[Pippah45]

I was diagnosed with GCA and PMR four years ago and am still on 7mg Prednisolone - I have learnt that rushing to get down is very painful and doesn't work! I have had other issues like a new hip that have delayed the reduction. My sister on the other hand has been up and down with trying to reduce too fast and always ends up going backwards. Slow and steady wins the race in my opinion. Good Luck!

[Hidden in reply to Pippah45]

Thanks for that Pippah45. I know wat you mean about the up and down bit. I've just been doing what they tell me up to now. I think I need a deeper discussion.

[Pippah45]

I am so grateful to these wonderful people here for helping me take my health into my own hands and ignoring the idiots who don't really know what they are doing in so many cases! I go off piste with help of another forum to reclaim my thyroid health too.

[winfong]

Is "atypical GCA" extracranial GCA? If so, there are a couple of us on here.

Also, what kind of inflammation blood markers did you have?