Update and questions about GCA

[TooSore]

Last week I wrote about a headache that went on too long. I saw the doctor and had blood work done. Results were all wonderful. The doctor suggested I see a chiropractor because my jaw is out of alignment. I saw him on Monday. He says my neck is " locked up", very tight and I have limited mobility in my spine. This could be causing the jaw and headache. He did not want to blame it for the slight migraine aura that I'm getting so off to the eye doctor I went. She saw something on the retina and sent me to see another eye doctor. I have a "cotton wooly" so something happened to the blood flow to a small area. I am scheduled for a TAB, possibly today if I get medical clearance in time, if not on Friday. She started me on 80 mg of prednisone. When I asked if it would interfere with results she said she had a two week window before that happened. I asked about the ultrasound test and she had not heard of it, said the TAB was gold standard. I am not afraid of the TAB, just want to cover my basis. What are people's thoughts about all of this? Is there anywhere in the USA that could also do an ultrasound?

I'm nervously waiting for the doctors offices to open so I can talk to the rheumatologist and find out what's happening today.

Also, in terms of recovery - what should I expect. I am teaching summer school and it's difficult to get subs. I'd like to give them a heads up.

[PMRpro Ambassador]

Really don't know about availability of the u/s option in the USA, it requires training so outside the hospitals that participated in the study you would have to ask. I imagine that good u/s clinics in the US might have someone who can do them.

But I do have to say that a rheumatologist or eye specialist who hasn't even heard of it obviously doesn't keep up-to-date on the work done in their field. Do offer her this link to study - which might also be useful when seeking somewhere that does them:

academic.oup.com/rheumatolo...

I have never linked cotton wool spots with GCA - but it seems they may appear in older patients with GCA!

eyewiki.aao.org/Cotton_Wool...

retina.com.au/retina-associ...

[TooSore in reply to PMRpro]

I actually saw an ocular surgeon yesterday. I spoke to my Rheumatologist today and had an appointment with the retinal specialist today. Both said to go with the TAB to be sure, but they don't think it's GCA. The retinal specialist ran a battery of tests including one with a dye. He says he sees a small embolism. ( I think... he was kind and willing to repeat himself but I was struggling by then to hold onto info. I've seen so many people and have had so many tests.) I now have to have a carotid ultra sound. They are puzzled because I don't have high blood pressure or anything to lead them that way. This afternoon they took a 2.5 cm piece for the TAB. They want me to continue to take 80mg until test results are back. It should only be a day or two. I have some pain now in the same spot. Below where the went in. It's smaller than a fingerprint, pressure like it's being pushed in. It has happened maybe 3 times, lasts only a few minutes.

I appreciate the information you gave me. I'll check the article you gave me and follow through.

[TooSore in reply to TooSore]

TAB came back clear so I'm dropped to 20mg of prednisone for now. They won't drop me further until they figure out what caused it. (Rheumatologist says just because it's clear it's not a guarantee of not being GCA, just ups it to 63%, maybe higher because of inflammation numbers) waiting on more bloodwork and results of the carotid ultrasound. So I was on 80 mg from Tuesday night, then switched to mornings, through Friday, now on 20mg. I was told the big jump would be ok because it's been ashort time. How long can I stay on a dose and do a jump down rather than a slower taper?

[PMRpro Ambassador in reply to TooSore]

That's OK if the rheumy does know it is not 100% definitive - that makes a change!

If the drop to 20mg is OK I'd stay there at least a week - did you have any PMR-type symptoms when you were on pred before? If there is no reason to stay on pred you can reduce quickly, maybe 5mg at a time to below 10 since you were at such a low dose if it is done within a couple of weeks. Did the doc say anything about getting back to below 5mg again?

[TooSore in reply to PMRpro]

Thank you for your response, I value your insight. This scare has been a shock and things have moved so quickly (which was important I know, but overwhelming) prior to my initial low grade headache and migraine I was feeling fantastic since September. Last summer I tried to get to .5 mg and failed - a step too far. Went to 2 mg for a few weeks, then down to 1.5 mg. I felt better than ever. I dropped another 10 lbs. I added yoga, added to my swim routine, handling work stress with no increase in symptoms. Doc says I can stay on 1.5 forever. I planned to talk with him at my next appointment about a taper plan for heading to 1.0. I haven't had symptoms since the end of last summer. My numbers support that my inflammation is down. I do have to reduce very slowly, I tend to cry easily if I go too fast.

I am glad the doctor is being careful. He doesn't think the cotton wool spot was caused by GCA but he also can't say it wasn't. Something caused an interruption to blood flow to my eye. Until they find out what it was I seem be be in limbo and he wants me on the 20mg to keep me protected. Once they know, he'll discuss a plan for lowering, dependent on what it was. (If they ever find out). He won't discuss specifics until more test results come back. I seem to be ok today on 20mg. I'm tired but haven't slept well since this stared - so not unreasonably, no aches or pains.

If this turnes out to not be a rheumatology issue I'm wondering where I turn next...

[PMRpro Ambassador in reply to TooSore]

That's for the docs to work out!! But they do seem to be aware - and that is the most important thing.