atypical GCA or not GCA at all???

Both the doctors relied on the same written description that I gave to each of them.  The rheumatologist thought they indicated GCA, the ophthalmologist does not.  The rheumatologist's diagnosis of GCA was based entirely on those symptoms and the PMR and the lack of consistent improvement in PMR at 20 mg pred.The eye doctor thinks it is significant that my visual symptoms occurred in both eyes at once- with an arterial blockage, you'd expect one eye only.  So she- and my GP- thought the symptoms more likely resulted from a brain problem (migraine) than arteritis.

The eye doctor says my retinas look great, unchanged from my last exam last summer.  Good news but not definitive of anything.

The rheumatologist is being conservative in immediately treating to protect my vision, the ophthalmologist is being conservative in wanting to avoid a long course of high levels of prednisone and all its ill-effects.  There does not seem to be a way of telling who is right!

I really trust my GP and will rely on his advice about my future dose of prednisone.

 

Not the retinas that are the problem - it is the optic nerve that suffers. However, GCA is a clinical diagnosis - based on doctor's observations.

You can have something called cerebral vasculitis which might also cause such symptoms. However - have the symptoms improvedin any way? If you weren't responding with a 70% global improvement in the PMR symptoms within a week (at the 20mg dose) then there is a query about the diagnosis and further investigations are needed. Though it does sound as if you were pretty much there with the PMR symptoms.

You're in the US aren't you? Is there an option to go to Mayo/Johns Hopkins/Cleveland clinic? because it is pointless having a rheumy and an ophthalmologist squabbling over the diagnosis. And a GP is just that, a generalist.  

True, I was not responding as expected to the low dose of prednisone, so there is still some explainng to do.  I had a 70% improvement on the 20 mg most of the time- the question is about why I had 2 recurrences of worse symptoms.   I live in Boston (the one in Massachusetts), a major medical center, so there should not be a problem getting a second opinion.

It has been great having no pain for a day and a half (while on the 60 mg dose)!  I had already adjusted to expect some pain off and on in the hips, etc, and especially in the shoulders and upper arm on arm movement.

Thanks again for you continued interest and information!

Since you are in a system that could probably provide it - is there any chance of FDG PET/CT  ((18)F-fluorodeoxyglucose positron emission tomography/computed tomography)? It may not be too late to see something if you still were having pain.

The trouble is, the very high doses will work with other things too. Which is nice to be pain-free but does have other problems!

Hi, Eileen:  My temporal artery biopsy was normal so my doctor says to go to 30 mg prednisone.  (Reminder: I was on 15 mg for 5 days, on 20 for about 2 weeks, and have been on 60 mg for 5 days.)  In your experience, does the short time on high dose mean I can reduce this quickly?

Also, the Quick and Kirwin article in the list of websites lists "reduced pulsing of the temporal artery" as one of the signs of GCA.  The doctors had a hard time determining which vessel was the artery becuse it was not pulsing much and looked more like vein.  When they cut into it, they noted the spurting pattern of the blood flow, but it did not seem that they were sure until then and when they could look at the tissue they had removed.  Rather than the 15 minute procedure I expected, it was over an hour and a quarter.  The biopsy doctor's conclusion ws that the artery went into spasm, but they had trouble locating it from the beginning surface exam.

I think it is probably OK to drop to 30 after just 5 days at 60mg - everyone is different, but theoretically it is fine. 

A negative TAB isn't 100% conclusive it wasn't GCA - a positive is 100% conclusive that it IS GCA, but the cells aren't evenly distributed and can skip sections. All put together I would really say - keep a close watch on how things go and don't mess about if any symptoms come back. The rheumy here is of the opinion that 30mg is plenty high enough for GCA that isn't causing overt visual symptoms, in fact he left me at 15mg/day and everything settled down Ok.

Finger crossed.

Thanks, that is really rassuring.  The Quick and Kirwen paper also mentined temporal artery ultra sound for GCA diagnosis.  I don't think I have seen that before.  Is this something that is being done?

A study has been done - possibly in the UK only though I'm not sure - to compare the diagnostic reliability of TABU/S and TAB (biopsy) which gave good results. Unfortunately in the UK it is not widespread because the U/S operator must be trained and do it regularly to maintain skills and that hasn't been funded. The doctors who learnt it for the study still do it and there are probably a few places with other staff who can do it. How that pans out in other countries i don't know as in many other countries only doctors do U/S.

You are so well informed!!  Amazing.

This seems like a good, non-invasive approach, perhaps with better sampling along the vessel than the biopsy.  

Without TAUS or imaging, I still think my GCA diagnosis is uncertain. (I am considering the unusual behavior of my artery significant, but I don't know that anyone else does.)  It seems unlikely that I have GCA, but with blindness on the table, how certain do you want to be before excluding it?    

I'll reduce to 30 mg and see what happens.  Thanks!

After 24 hours on 30 mg, the pain in my upper arms is back.  It is quite mild and does not limit my movement.  It just hurts when I move my arms certain ways. Compared to the before-prednisone level of pain, I'd estimate I have over 90% reduction in symptoms.  Any thoughts?

Sorry but I'm not sure I agree - see my response to snapperblue.

Personally, I'd accept 60mg until further tests can be done if it was to protect my sight. When it is gone that is it - no way back. It is something that happens to thousands of patients per year because their doctors do not respond quickly to complaints of symptoms that could be GCA. And believe me - when you meet these patients who were ignored it is heartbreaking.

I agree that this site is fantastic.  However, I also think I have one of the world's best GPs.  He is always right on top of things, including recent changes in dogma, and ready to hand out material explaining the background.  He is also kind, respects his patients' input, and (get this!) makes HOUSE CALLS for his disabled and elderly patients (including my mother during her advanced dementia).  He actually recognizes that it easier for him to go to them than for them to get to his office!  One of the hospital nurses emphasized that he is not JUST nice, he is a really smart and capable doctor.  I feel really lucky!

Sounds like my lady - house calls are a no-brainer to her too. 

You are a lucky patient!!