Is It Really GCA?: I recently moved To Asheville... - PMRGCAuk


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Is It Really GCA?

Pamk1949 profile image

I recently moved To Asheville, NC from Miami. Love it here! Finally set up with all new doctors, and everything seems to be going smoothly. However twice last month it was mentioned from my Neuro opthomologist, and rheumatologist that I probably didn’t really have GCA, just maybe PMR.

I was diagnosed clinically by a neuro opthomologist in October 2017 after being diagnosed with PMR, and having an Amaurosis Fugax incident. I had ESR 68 weight loss, jaw claudication.. was put on IV methyl prednisone and later 100 mg prednisone, followed by a stroke work up which was negative. I had 4 more Amaurosis Fugax incidents during those first weeks, even while on 100 mg prednisone.

I would love to think that I never had GCA, but is there any way to tell now? Doctors want me to taper quickly. I’ve learned from this site not to. I was thinking a second opinion from Duke Hospital 4 hours away, or maybe somewhere else. I’m currently on 20 mg prednisone, tapering has been decided by me, because of the move, visitors, life, etc.

I’m still active, no muscle aches. Walking, and hiking is a new hobby. I’m worried about more Amaurosis Fugax incidents, which I don’t see mentioned often on this site. Isnit really GCA?

22 Replies

I'm sure the experts will be along with information and advice in due course. I was interested in your situation. I would have thought the original diagnosis was made on the basis of the symptoms you were demonstrating at the time, such as the jaw claudication. And isn't the sometimes temporary loss of sight caused by GCA a form of "Amaurosis Fugax"? It's very good that you don't have pain symptoms, but as you know this doesn't mean you can taper off pred quickly. Not only is there some question about the accuracy of your diagnosis (was the first lot of doctors right, or the current team, or do they both have things partly right and/or partly wrong?) but after about 10 mg, which you are not that far from, your taper will need to be slower anyway for the sake of your adrenal glands and the fact that you need a certain level of cortisol to maintain life.

Did you have a good response to the pred, and no more vision problems since the inflammation was dealt with and you have tapered to 20?

In your position I think that I would seek an informed second opinion as soon as possible.

Best wishes.

Pamk1949 profile image
Pamk1949 in reply to HeronNS

Thanks for your reply HeronNS....I seemed to have very few problems with the prednisone. I’m just worried that I don’t see a lot of amaurosis mentioned on this forum. I’m checking out Duke Hospital to get a second opinion, but what really can they do after all this Pred.

I appreciate your advice, and I understand you are an expert on the osteoporosis, and that’s a whole other topic that I’ll be asking you soon.

Thanks again

SnazzyD profile image
SnazzyD in reply to Pamk1949

You don’t hear a lot of amaurosis F as thankfully not many progress that far because other symptoms are bad enough to take people to the GP in time. If you look at symptom lists for GCA it is mentioned every time. When I was in A&E with my GCA it was the one symptom they were most interested in. I didn’t have it apparently according to some docs and the fact that my eyesight was shutting down with an ever decreasing field of view like I was looking down a small tube made some docs document that I didn’t have sight problems. The fact that it came back right as rain within two hours of 60mg Pred (another fairly good indicator) still didn’t stir one. My ESR and CRP were normal. There are many papers that say they are often not raised. This far down the line a doc can only make an educated guess lead by symptoms and often at the beginning that’s all they can do as well in the absence of a positive biopsy or ultrasound. I do feel for clinicians, because they have to make a decision not based on a solid test, whether to put someone on potentially life threatening drugs for years possibly. To not act could cause blindness or worse or at the very least crippling pain for PMR. It is shame that in their terror some cling on to the comfort of numbers or misguided assumptions rather than what’s in front of them.

Hello, I’m not sure anyone could say. You certainly had some pretty compelling symptoms though and they were treated with a whopping dose of Pred. The symptoms have resolved which one would hope. Not sure what their basis for no GCA is. Just because you haven’t had any aches or pains now doesn’t mean you didn’t have it. 20mg is still a reasonable dose for PMR. Any biopsy or ultrasound would probably be negative now.

As has been said, even if you knew 100% you hadn’t had GCA, you’ve had enough Pred to have switched off adrenal function so a fast taper to zero could well send you spinning into an adrenal crisis or even a flare, which would be a shame because it sounds like you’re doing very well.

Pamk1949 profile image
Pamk1949 in reply to SnazzyD

Thanks Snazzy. Yes they were compelling signs for GCA,.and I am so appreciative of my eyesight. It’s just disturbing that the new doctors are doubting GCA and if they are right,( they said my markers were not high enough for GCA) this prednisone was for nothing.. don’t worry I won’t be tapering rapidly. The new doctors are concerned about developing cateracts, and bone loss.

HeronNS profile image
HeronNS in reply to Pamk1949

I believe it is stated in the literature that a few patients with GCA do not have the expected elevated markers. Not that yours weren't elevated enough to begin with anyway, and now they should be normal if pred has been doing its job!

SnazzyD profile image
SnazzyD in reply to Pamk1949

Those without a positive biopsy or ultrasound always run that risk.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Pamk1949

You might like to advise your doctors that my ESR was only 58 and that was AFTER I’d lost sight in right eye (irretrievably). Blood markers are a guide only, not the be all and end all. Symptoms rule!

Pamk1949 profile image
Pamk1949 in reply to DorsetLady

Yes, I certainly will. And I also printed out some guidelines that you had posted to someone else on this site. I will show that to this rheumatologist —Even though I won’t be seeing him for long . Thanks for your advice

I am glad you love where you are living. You seem to be doing so well. You are quite right to taper gradually from 20 mgs. You have done amazingly well to get to 20 and feel good. I wonder if the label really matters? It sounds jolly like GCA to me. These new doctors are only seeing you now the worst has past and you are showing such strong resilience. I can understand your fear of another Amaurosis Fugax incident. We’re they able to identify the source of the blockage and deal with it? Perhaps you should see another neuro- optholmogist, if you are not satisfied with this new one.

Happy hiking you sound like a woman in recovery to me.🌷

Thanks SheffieldJane! No, they just named the blockage an Amaurosis Fugax. I spent the night at University Miami Hospital, they did a million tests, came up with nothing—just told me to take baby aspirin. You’re right about the “label” — I’m in for the ride now!

SnazzyD profile image
SnazzyD in reply to Pamk1949

Sorry, me again, Am F is a name for the symptom not the blockage, so it could come from local pressure too. There are other causes too and as other people have said, if GCA didn’t do it, what did? The fact that it has resolved with Pred is very encouraging.

Pamk1949 profile image
Pamk1949 in reply to SnazzyD

You’re right! The fact that prednisone made it go away says that it must be GCA

Hidden profile image

Hi Pam,

I go to Duke Hospital in Durham. Nancy Allen specializes in GCA but it takes a few months to get in. Where in the world do your Doctors get the idea that an ESR of 68 is not high enough? Mine was 68 and I do have GCA. They sound a little misinformed but I am not surprised, it took me a while to get the right GP +Rheumatologist.

Pamk1949 profile image
Pamk1949 in reply to Hidden

Wow!! I had just googled your Nancy Allen last week. I saw that she specializes in GCA and I now have a call into her office for an appointment. Thanks so much, Durham is only 4 hours away by car, 1 hour plane ride.

Hidden profile image
Hidden in reply to Pamk1949

Let me know how you get on.

Like you my rheumatologists flip flop about my diagnosis of GCA, NHS ones are inclined towards not, private one says yes (I'm in UK). I get the most useful response when I ask what else it could be, as they can't think of anything else. I did have amaurosis fugax in first week, but not since although I do get the odd ocular migraine. They are right to worry about pred side effects, I am probably very unlucky having had sepsis, bad cataracts and now vertebral fractures. Now trying methotrexate, although whether it will work after 2 plus years appears to be questionable!

Like you I would love it not to be GCA, but this leaves me wondering what else could it be and how come I've been taking this horrible drug for so long if I didn't need it. Rheumatologists don't seem to get how devastating this situation is.

If you can, get another opinion, as the longer you take the pred the more likely side effects are I think. In the UK the NHS seems to ration care by waiting which means we clock up more and more pred between consultaions, in my case last year they were every 6 months!

Sorry to sound so miserable, but with hindsight I would have made a fuss earlier in my treatment!

Pamk1949 profile image
Pamk1949 in reply to Cally55

But how can you get a second opinion when they tell you that you are going blind!! And I had no idea what prednisone does, nor did anyone attempt to explain to me. How I even found this forum is amazing luck. Enough of my rant......I’m sorry to hear about your sepsis, fractures and cataracts. What dose of prednisone are you on now after 2 years, can I ask?

Cally55 profile image
Cally55 in reply to Pamk1949

13.25 mg, I have a pill cutter, and have been told to stick at this and 15mg of methotrexate per week for 8 weeks when I get to see rheumatologist again.

The information leaflet that comes with the pred listed all the side effects possible but I didn't expect to get so many of them! When I asked rheumatologist about side effects of methotrexate she said don't take too much notice as most people don't get them! Rang a bit hollow with me for some reason!

PMRpro profile image
PMRproAmbassador in reply to Cally55

Funny that!

PMRpro profile image

I'm quite appalled that a patient who had repeated amaurosis fugax together with other typical GCA symptoms. particularly jaw claudication, is now being told by doctors who didn't see you at the time they don't/didnt have GCA - especially when the doctors are saying they probably did have PMR! It is a risk though that everyone faces when there was not a positive TAB or ultrasound result at the time.

Amaurosis fugax is just a fancy word for unilateral fleeting loss of vision and there are many causes. GCA is one and the one that must be assumed until everything else is ruled out because of its potentially devastating effect. Once it appears there is usually a window of about a week before total and irreversible visual loss occurs.

Amaurosis fugax appears in about a third of patients with GCA and in some cases they go blind without ever having any other warning. Your current doctors are being silly - and you are very lucky that you were put on high dose corticosteroids at the time. GCA presents with no raised blood markers in 1 in 5 patients - just like PMR. Yours was considerably raised.

After being on such high doses initially (which were perfectly justified in response to amaurosis fugax that had no other apparent cause) I think it is unlikely they would be able to find imaging or histological evidence now. Especially since the blockage relating to loss of vision occurs in an artery deep inside the brain - the reason the temporal artery is used is only because it is easily accessible and non-essential. That is why the TAB is so frequently negative - which doesn't mean the patient doesn't have GCA. Just they didn't find what they were looking for.

It is likely that after 7 months on high dose pred after an initial pulse therapy with methylpred that the GCA swelling which is the source of the risk is well and truly banished. The risk now is that the underlying autoimmune cause is still active and that it is still creating some inflammation that is being mopped up daily by your pred. If your blood markers are normal - that is the reason why. Not that you didn't have GCA originally but that you are currently on enough pred. The only test now is to reduce the pred slowly - you are, after all, at a normal starting dose for PMR - and see how far you get without any return of symptoms or rising blood markers.

Under the circumstances I would high tail it out of that hospital to find someone rather more professional in their manner. Your previous medical team made a perfectly reasonable diagnosis. And frankly - so cataracts are a risk? They can be dealt with easily enough. Osteoporosis is a risk? Not necessarily, there are several people on the forum who had no measurable change in bone density while on GCA doses of pred for 5 years - and some of them didn't even take calcium/vit D supplements! There are ways of dealing with that too.

You need a dexascan to know your bone density status now - unless you had one at the time which you should have done. Then you can have a sensible discussion about what to do. You are now at PMR dose levels and they don't seem to have the effects the doctors would have us believe:

What is done is done - you are where you are and I would say quite rightly so.

Pamk1949 profile image
Pamk1949 in reply to PMRpro

Thank you PMRpro! I have learned a lot from you by researching on this site, and value your opinions. Yes I am going to a rheumatologist at Duke University Medical who specializes in PMR/GCA

I never knew the arteries/veins were deep inside the brain—always though they were the arteries they used for biopsy. What would I do without this forum— all my info comes from here.

I had a dexascan at the very beginning of all this (Oct 2017). It showed left hip at -2.4. I’m having another soon, after all the calcium, vit D, K2 , and crossing my fingers it’s not worse — the AA scares me.

Thanks again, and thank you for your article links

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