Gca scare back on 60mg from 3.5mg: Hello everyone... - PMRGCAuk

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Gca scare back on 60mg from 3.5mg

lucky12 profile image
7 Replies

Hello everyone my GP sent me to A&E on Friday night as I had pains in the back of my eyes and slight tenderness of temples after examination doctor at hospital put me up to 60mg . This did happen to me 18 months ago the doctor then told me to come down to 20mg over 10 weeks then very very slowly which I have done now on 3.5mg.My concern now is the doctor at A&E on Friday has told me to go straight back on3.5 mg some advice from those who know would be great.

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lucky12 profile image
lucky12
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7 Replies
PMRpro profile image
PMRproAmbassador

IF it was a real GCA flare then I think what you were told last time is safer - how long did the A&E doc this time say to take 60mg for? Theoretically, using 60mg for a couple of day/a week should mean you can go back to your old dose straight away - but that is in other things like RA or asthma where it is being used to manage a flare. GCA is another thing altogether.

I'd discuss it with your GP and preferably a rheumy consultant before dropping right back to 3.5mg. If it had been back to 15mg that would have been different but 3.5mg is a very low dose.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toPMRpro

Snap!!!!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi lucky12,

Have read your post a couple of times, and am still bewildered. Not difficult!

Are you saying the same hospital doctor put you on 60mg, but then said go back to 3.5mg, or have I read that wrongly. How long did he say stay on 60mg, or was it just a one off dose? If so, don't think that is going to sort it out.

Think you need to speak to GP ASAP - he should be able to access A&E notes and clarify.

lucky12 profile image
lucky12

Thank you so much for prompt reply Yes I also got muddled first tried to post from Tablet and couldnt get it to send then sent another one from laptop in case the first one was lost I think it is me that is lost. GCA was not diagnosed but thought it could have been caused by a reaction to antibiotics for a urine infection.However I will be checking with reaumy tomorrow. No the doctor I saw last Friday was the one on call that night but the first scare I had was 18 months ago and saw a specialist at the eye clinic who I had more faith in. I might phone them tomorrow aswell. The 60mg was a one off.

Joyful13 profile image
Joyful13

Dear Lucky 12,

I am also dealing with GCA. I had a flare up about a month ago. At that time, I was taking Prednisone 30mg. I had severe headaches in the temporal and top of my head for 7 days. My doctors had me go to the Emergency room to rule out meningitis. After a spinal tap, it was verified that I did not have meningitis, but I did have a GCA flare up. My rheumatologist had me raise the Prednisone to 40mg which I am still presently taking. I am concerned that the doctor is having you reduce so quickly and to such a low dose. Did they do any lab work for a ESR and CRP?

Best wishes to you for continued improvement.

lucky12 profile image
lucky12

Thank you for your reply joyful13 Yes I did have ESR AND CRP test all ok. I understand the reasoning for them to give me 60mg in case of GCA and I just want to lower pred in the best possible way.I will be talking to ruemy and optomolagist in the morning. Good luck with your reduction.

lucky12 profile image
lucky12

Hi everyone I have spoken to rheumy and she has reasured me all is ok as no GCA so I can go back to 3.5 pred as only had one dose of 60mg.I must admit that I get a bit paranoid if I get an eye problem as it is one of the main pointers for GCA but at the same time I think I must get checked straight away. Thanks to you all.

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