On GCA end of spectrum?

Hi. I had a TIA at the end of September, and about the same time developed at the PMR symptoms. The Rheumatologist Registrar that I saw recently dismissed my query as to whether I could be on the GCA end of the spectrum (mind you having receive the copy of her letter to the doctor I wonder if she was talking about me, it has so many inaccuracies!) The TIA consultant is more wiling to counternance the fact that I could be near the GCA end, although he was puzzled as to why my ESR has never been higher than 49 (although the paper below seems to blow that theory out of the window) It is probably academic now, but I think I had quite a few episodes, especially this year that I thought were severe migraines but I now think probably werent at all. (e.g. sudden onset 8 hr headache from hell, with temporal tenderness, subsequent jaw pain when chewing etc, also I had word finding and formulation problems, which I was acutely away of, being a Speech and Language Therapist when I was working. Also visual problems). Various people have said, why are you concerned, you are probably on the right medication now (20 mg of prednisolone - using tapering app to try and get down) but it seems to me it is important to know if one has had GCA in the past (I dont know if that is possible, i.e. to have it once and not now.) My ESR is down to 16 and CRP at 19)

I would be interested to get others thoughts on this. And as an aside I have had no appetite since my TIA, not too bothered about that, as I am keeping off the 14lbs that dropped off suddenly. But just interested to know if that is related and if anyone else has had that.

Sorry long story! I find the site and forum such an enormous help. Thanks to everyone for posting

Bridget

[DorsetLady PMRGCAuk volunteer]

Hi Bridget,

Your visual and head aches etc certainly sound as if it could be GCA. Loss of appetite could be either PMR or GCA, so not really conclusive. The ESR reading is a bit of a red herring, as you know many never have raised markers, and mine was only 58 after 18 months being undiagnosed and full blown GCA. 20mg would certainly be the lowest starting dose if GCA were suspected, but if you don’t have those symptoms anymore it’s a bit difficult to say for sure. Perhaps you are one of those lucky ones that don’t get it as badly as most - the more I read on here the less I’m sure!

All I would say is don’t reduce too quickly, and should you get any return of GCA symptoms then seek medical advice soonest.

[Hidden in reply to DorsetLady]

Thanks for that, yes I take on board your advise about not reducing too quickly the Rheumatologist keen to take me down from 20 to about 8 in no time at all. Got to see our GP's resident pharmacist (as no GP appointments, due to illness etc). He was impressed with the steroid taper app and quite willing for me to up and down as I need. He also booked me in for a blood test, to check blood sugar levels. Really much easier than a GP appointment!

Bridget

[PMRpro Ambassador]

Which paper do you mean? If you want to liase with the TIA consultant I can provide you with more literature about normal or only slightly raised ESR levels.

What you describe DOES sound very GCA-ish, whatever your rheumy thinks, and if it were me I would be looking for another one who isn't fixated on speedy reductions and is ignorant of the possibilities. What was her justification for saying no?

Once you have had GCA the propensity for it to flare if the dose is reduced too far doesn't go away until the autoimmune bit is burned out which takes from 2 years up - and you are heading for that with this rheumy.

And where are you?

[Hidden in reply to PMRpro]

Sorry I dont think I referenced the paper it is:

"The spectrum of giant cell arteritis and polymyalgia rheumatica: revisiting the concept of the disease

Christian Dejaco Christina Duftner Frank Buttgereit Eric L. MattesonBhaskar Dasgupta

Rheumatology, Volume 56, Issue 4, 1 April 2017

" (I think I got the reference from this forum somewhere)

I am near Mansfield, and only saw the Registrar for my first appointment, I will be seeing Prof Walsh, who I think has done loads of research into PMR etc, so am hopeful that when i see him at the end of April, I will have a good consultation with him. The doctor I saw was a ST5 Rheumatologist, with 9 years experience but her letter to GP could have been about another patient; so many inaccuracies!

My TIA consultant is brilliant, so open to just a normal discussion and treating me like an equal partner in my health and the decision on this, as does my GP. Any information about raised ESR and CRP would be very helpful, thank you.

Bridget

[PMRpro Ambassador in reply to Hidden]

Yes, I've mentioned it a few times.

Google "normal acute phase reaction in polymyalgia rheumatica" and you should get a load of links. If your google isn't as well trained as mine ask and I'll copy and paste them for you

[Hidden in reply to PMRpro]

Thanks, have just Googled and as you say loads of information/papers including this one which looks interesting:

uptodate.com/contents/clini...

(updated Nov 2017)

Bridget

[PMRpro Ambassador in reply to Hidden]

Some of the links are to papers that did studies - the Uptodate link is a very good reveiw which I wish more doctors were familiar with! Trouble is, many of their articles, which are excellent, are only partially available without joining (and paying). Same applies for a lot of the full text papers. Thank goodness for abstracts!

[Hidden in reply to PMRpro]

Yes, but some like Medscape you can sign up and create password and get into the site for free, which is good.

[PMRpro Ambassador in reply to Hidden]

Oh yes - and I'm a member of any good ones that are free!