It's back: Bit confused, cannot update my profile... - PMRGCAuk

PMRGCAuk

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It's back

Mischevious profile image
6 Replies

Bit confused, cannot update my profile, I input the details, click continue and when I log on again the updates have not been added. s

The above is not the primary reason for my post. I am somewhat miffed. I was diagnosed with GCA in February 2012 and found this sits a great help, but when I was clear in May 2016 I stopped looking at it and do feel bad because I am sure my experience can be helpful to others, so for that I apologise

The reason for being miffed is that I am just home from A & E, CRP 192, so it is back.

Can anyone give me some encouragement please? Is a repeat worse than the first, is it likely to last as long, or is that a how long is a piece of string type question. I think that I have caught it quite quickly, I have only been feeling ill for three days whereas last time we were on holiday in USA, I did not know anything about the symptoms so waited until we returned to UK before seeking help. CRP was 236 on that occasion.

Any advice, encouragement or just saying you understand would help a great deal.

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Mischevious profile image
Mischevious
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6 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Profile - might be silly question - but did you save before you exited?

As for GCA return - what a bummer! And quite unusual. - has it been confirmed as GCA - it could be PMR, that is more likely to relapse - or it might just be bad luck.

Keep us informed please.

Mischevious profile image
Mischevious in reply to DorsetLady

Thank you for your reply. Yes, my thoughts exactly, a bit of a bummer but it cannot be changed so just has to be dealt with. Last time I was in hospital for a week and had a CT scan and biopsy so I now need to chase to get a plan going forward. I will keep you informed

PMRpro profile image
PMRproAmbassador

I know people who have had PMR more than once and one lady who had GCA first and got off pred in just 2 years - but 4 years later she developed the symptoms of PMR without any sign of GCA. What do your symptoms suggest? What dose have they put you on?

They all say that the second episodes bore little resemblance to the first - so yes, how long is a piece of string!

All the best and keep us up to date.

Mischevious profile image
Mischevious in reply to PMRpro

Thank you for your reply. I am on 60mg daily. I had to go to A & E today as I recognised the symptoms and my GP said that they could not get the blood test results quickly. My next step tomorrow is to attempt to arrange an appointment at the rheumatology department to get a definite diagnosis and a plan to go forward.

Unfortunately, the doctor that I saw previously and had complete faith in, has retired.retired

bunnymom profile image
bunnymom

That would feel like a low blow indeed after recovering. Welcome back and wishing you well.

Jackoh profile image
Jackoh

What a blow! But at least you know the ropes and will get/ got the necessary help ASAP. Keep in touch and let us know how you get on.

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