GCA or not update : I had call from my Rhuemy to... - PMRGCAuk

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GCA or not update

Marlenec
Marlenec
β€’20 Replies

I had call from my Rhuemy to say my bloods normal except white cells still high. Should stay on 40mg Prednisolone for a week to see if symptoms improve and then reduce to 30 for the 3 days till next appointment. So relieved! I mentioned the information I had from the posts here but had the feeling she didn't really take it on board.

Thank you so much everyone for your help and support.πŸ˜‡πŸ˜‡πŸ˜‡

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DorsetLady
DorsetLadyPMRGCAuk volunteer

Good response from Rheumy, let’s hope the 40mg does the trick.

Personally I would happier to reduce to 35mg rather than 30mg, but if that’s her instructions, guess to have to follow them...but do keep notes so you can tell her how you’ve got on.

Good luck.

Marlenec
Marlenec
in reply to DorsetLady

Thank you - yes I will make notes - great idea.

DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to Marlenec

Yes you need to make notes, because you forget otherwise- I got used to doing it when hubby was ill - so it just stuck.

Ex civil servant as well - so well trained!

Marlenec
Marlenec
in reply to DorsetLady

Ah well that says it all!

I shall reduce to 35mg as your safer advice.

Thank you.

Hello, like DL if it was me I’d like to smooth out the reduction with 5mg instead of 10mg. Also, Pred stimulates the production of Neutrophils, a type of white cell, so it will artificially put up the white cell count which can cloud the issue if you do have an infection.

Marlenec
Marlenec
in reply to SnazzyD

Hi thank you. I don't know anything at all about white cells (shall Google out of interest) . Yes, when DL suggested 35mg, I thought

that sounds a safer way and that's what I'll do.

What we'd do without this forum goodness knows, it would be a much harder and less safe journey.

We all recommended this forum to the newcomers at the meeting yesterday.

Thanks again.

What were/are your symptoms Marlene for the suspected GCA? Did you start with PMR on a lower dose of Pred?

Hi Staplehurst

I've had PMR for three and half years, 3 flares but stable on 4mg Pred for last couple of months. New symptoms were - temple headaches both sides, jaw and tongue really bad aching when chewing - have to stop, overall feeling dreadful, absolutely no energy to even think about doing anything, some night sweats, upper arms really aching worse than PMR ache.

Hope this helps.

Shouldn't you be on a high dose if you have GCA. I think I'd be too frightened to just be 4 mg.

Mahnahvu
Mahnahvu
in reply to Marlenec

Similar to your experience, I was on 5mg pred after 3 years of PMR, so I knew what symptoms to watch for. After having several weeks of a tender scalp and pain in my eyes, the moment I felt a twinge of pain in my jaw upon moving it up and down, I immediately made the call to rheumatology. They put me on a precautionary 40 mg pred to protect my sight and we did blood work. The blood tests came back normal, except for CRP was only very slightly raised, but it was not high enough to point to GCR. Perhaps I was being too cautionary, with the symptoms not really classic for GCA. (I had no temple pain, no classic headache, nor was the pain in my jaw affected by chewing.)

With nothing more definitive, I did the 40mg for 5 days and then quickly tapered over three days back down to my previous 5mg. Once I hit 5mg I flared big time, and it was obvious I had the classic GCA symptoms. My scalp was so tender it hurt to wear a hat. I now had a more classic headache, day and night. The jaw pain was now more typical "claudication" where chewing would make it worse.

I reported the flare to rheumatology and requested a biopsy. While awaiting the biopsy I went back up to the precautionary 40mg pred. When the biopsy results came back positive, we upped the prednisone to 60mg and started regular GCA treatment.

PMRpro
PMRproModerator
in reply to Mahnahvu

Obviously a doctor who is unaware the the blood markers may lag a long way behind - symptoms ALWAYS trump lab results.

Marlenec
Marlenec
in reply to Mahnahvu

So glad you were diagnosed correctly in the end. Could have lost your sight.

Good luck with it all. take care. Thank you for posting.

What is regular GCA treatment Mahnahvu? What is the starting dose, is it daily and for how long ?

Anne

A typical treatment plan is outlined in Table 5 of the PDF linked below:

rcpe.ac.uk/sites/default/fi...

The newest guidelines for the UK are at this link:

academic.oup.com/rheumatolo...

See Table 2 for a typical tapering schedule.

Appreciate that link thank you.

Anne

Hi Staplehurst - now on 40 mg - please see my first post above.

Thanks

Sorry, yes, saw it and shouldn't have asked.

No problem at all just didn't want you to misunderstand.

The DRs hate it when you know a bit more from another source. I don’t know why. Knowledge is Power? We know all info is not good but yours came from a trusted source? Hope the results ease your mind so you know what to expect next.

Marlenec
Marlenec
in reply to Estellemac

Hi thanks, yes I'm convinced it's GCA and hope they agree so I can continue the Prednisolone and get to grips with it. I've decided if they say not GCA and cannot give me a a different diagnosis that includes my symptoms, I'll ask for a second opinion. My 4th day on 40gm and symptoms improved a bit.

Take care.

Marlene

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