GCA flare-up: Have just spoken to another GP at my... - PMRGCAuk

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GCA flare-up

maria40 profile image
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Have just spoken to another GP at my surgery and he agrees I should be on much more than 30mg for GCA flare-up affecting my eyes. I'm seeing him at 4.30 and he's spoken of a biopsy and rheumatologist appt. Perhaps I'm getting somewhere at last! Thanks for prompting me to pester the surgery, polkadot.com

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maria40
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polkadotcom profile image
polkadotcom

You are welcome, so glad that you seem to be driving in the right direction now.

polkadotcom profile image
polkadotcom

Do let us know how you are getting on. I hope the appointment was a success.

maria40 profile image
maria40 in reply to polkadotcom

Thanks for your concern. I seem to be on some sort of merry-go-round. GP I saw yesterday said I didn't have GCA, as not all symptoms fitted. He also examined my eyes and found them normal. He diagnosed a form of neuralgia for which he prescribed Carbamazepine. I read the enclosed leaflet and was informed that they should not be taken if any heart problems were present. I have SVT for which I take Bisoprolol which must have shown on GP screen. I phoned the surgery this morning and the duty doctor told me I certainly should not take them.

So I am now on a greatly increased dose of steroids to no purpose, a condition which I can't treat with the prescribed medicine and a further appointment with yesterday's doctor on Thursday.

On the positive side I do feel a little better this morning having had a decent night's sleep without worrying about my diminishing supply of steroids which were replenished yesterday.

Thanks again; will keep you informed of progress.

Asbeck profile image
Asbeck in reply to maria40

On Google Images there is a UTube "movie" about how it looks to have the dreaded "curtain" descending over your eyes. This might help you in determining whether you need to go to the hospital before your doctor's appointment. (It helped me.) (Search dark grey curtain haze eye or go to youtube.com/watch?v=SkAaWg9... Almost everyone on here is more experienced than I am. But since I'm giving you one example I don't want you to think that it is the only symptom to worry about. The absence of site in the eye, even for a few seconds is immediate cause for the hospital as are black spots in your vision (not just floaters.) Stay well with your sight and good luck.

Asbeck profile image
Asbeck in reply to Asbeck

sight not site--sorry

PMRpro profile image
PMRproAmbassador in reply to maria40

"GP I saw yesterday said I didn't have GCA, as not all symptoms fitted"

Not everyone has all symptoms and some have very few! I'm going to be very cynical now: given how often a GP is likely to have come across GCA I'd rather be safe than sorry even if it meant taking a high dose for a while. How did your symptoms respond to the higher dose of pred? And I doubt he can see a retina and optic nerve that well with the equipment in a normal GP surgery - always supposing he knew what he was looking for.

I'm with polkadotcom - wouldn't bother seeing HIM again. Maybe for an ingrowing toenail - but he wouldn't know what to do with that either I suspect.

maria40 profile image
maria40 in reply to PMRpro

My symptoms have lessened since I've been on 30mg Pred; although I still have intermittent scalp tingling/tremor and slight headache my eyes do seem better. But I agree about the inadequacy of the optical test which consisted of reading a chart of shapes - his letter chart was missing! - while he shone a torch into my eyes.

But I now have absolutely no faith at all in him as the medication he prescribed, carbamazepine, is not to be taken by anyone with any heart problems, I have SVT and take Bisoprolol - it was confirmed by the duty doctor whom I phoned the next morning that I certainly shouldn't take it. Had he looked properly at my screen he would have seen that if he had recognised the contraindication.

Now I am uncertain what to do. I know there is one v.good GP in the practice, the one who was that morning's duty doctor, but she is there infrequently. Should I try to get an appointment with her although this may take some time or keep my appointment with Dr Hopeless in order at least to get my increased steroid needs onto my repeat prescription - this assumes my symptoms continue to diminish.

Thanks for help, support and advice.

PMRpro profile image
PMRproAmbassador in reply to maria40

Whether you see him or not again is up to you - what he's said so far suggests he hasn't a clue. Like polkadotcom I wouldn't be enthusiastic about seeing him. Getting the pred would be a good start - can you do both? That would cover all eventualities. Can you speak to her on the phone?

To see if you have the sort of damage caused by GCA you need a specialist ophthalmoscope, as shown in this article:

en.wikipedia.org/wiki/Ophth...

and he needed to have it as close to your eye as he could get it. Like almost touching your eyeball (that was where the optometrist had hers when she looked at my retina last month).

If he did that he might possibly be right - but some of the changes are very subtle and unless he worked in eyes for any length of time I would be doubtful. If you have any other visual problems - go to an optician and ask for the optometrist to have a look.

polkadotcom profile image
polkadotcom

Well, this may be the time to revert to plan B? I just don't believe these doctors sometimes! But I'm glad you are feeling a bit better anyway.

For what it's worth Carbamazepine is usually offered or given to patients with Trigeminal Neuralgia but I find it hard to believe that he tried to fob you off with it. I'm not sure that I would want to see that particular doctor again under the circumstances. Have you someone you can take with you? That does help sometimes.

Take a tape recorder!

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