After some help and advice on GCA management - PMRGCAuk

PMRGCAuk

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After some help and advice on GCA management

MichaelW
MichaelW

Hi there,

As previously posted I was diagnosed with GCA in July 17 with a starting dose of 40 mg Prednisone. After a number of up and downs I managed to get to 17mg on 27 th Jan. During my descent I have had bouts of electrical type pain in my lower left jaw which has got worse during the last month or so. I also have a constant buzzing in my ears and I seem to be more puffy around the eyes and getting redder in the face, particularly in the evening. There is a feeling of tightness in my throat but no difficulty swallowing

I arranged a blood test on Monday of this week and the results show that my CRp has risen from less than 4 to 29 and ESR from 2 to 12.

Based on this I have increased my dose to 22mg but as yet (day 3) I have felt no benefit.

Any help or advice on next steps would be very welcome

Thanks

Michael

10 Replies
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Hidden
Hidden

Hi Micheal,

Has anyone ever listened into your carotid artery ( in your neck ) to see if it’s been affected by the GCA?

Have you contacted your Rheumy?

PMRpro
PMRproAmbassador

It is your doctor you need to speak to - and if there is any possibility of GCA flaring you will need a lot more than 22mg. As Keyes suggests - you may well need more tests.

MichaelW
MichaelW in reply to PMRpro

I managed to see my GP this afternoon and had a productive discussion. He agreed that I needed to up my Pred dose and suggested 30-35mg. Assuming I can get the flare under control how long should I stay at this elevated dose and what is the best route back to 17mg?

Thanks in advance for any help and guidance

PMRpro
PMRproAmbassador in reply to MichaelW

30-35mg is still on the low side for query returning GCA - and first of all I would say you need to get the symptoms and the rising blood markers under control first. Then you can worry about reducing. But it may not be to 17mg - that seems to not have been enough.

Hi MichaelW,

I have similar Pred reaction to you, except for the jaw pain you mention. I take the reactions to be side-effects of the Pred which, from other posts I have read, are not uncommon.

I was diagnosed with GCA in October 2017, then after later review and re-examination of the biopsy result, changed to not being a positive result for GCA, but not negative either. I started on a 60 mgs Pred dose, and now down to 30. I have sight loss in my left eye. I did not have any GCA symptoms other than a shadow in my left eye vision, but inflammation of my optic nerves had already set in before the Pred. I had PMR before this since 2012.

Hope you are not too worried about the puffyness around the eyes and red face, as I would have thought that will subside when the Pred dose gets lower, which is what I am expecting to happen.

We are all on a long journey on this site - none of us would have chosen to take it - but there are a lot of very knowledgeable and helpful and supportive people on here.

Good luck on your "journey" and hope things go well.

MichaelW
MichaelW in reply to bribaz

Thanks for the good wishes- at the moment feels more like an assault course than a journey !!

Yes, I know - it is not easy!

Hidden
Hidden

There are other drugs as well as prednisolone... maybe you should seek a full review to consider alternatives such as methotrexate.

Hidden
Hidden in reply to Hidden

Hi Mikeo999 this message is over two years old so you may or may not get a reply.

PMRpro
PMRproAmbassador in reply to Hidden

mtx is not an alternative to corticosteroids, whatever you may have heard. It is used as a supplement to steroids in the hope of a steroid-sparing effect. It works for a few patients - but only a minority - and achieves a modest reduction in dose. But the one (Italian) study that found it did seem to help also found that it didn't achieve any reduction in steroid adverse events at 5 years - with a significant proportion of patients still requiring pred at 5 years.

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