After some help and advice on GCA management

[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

[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 Ambassador]

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 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 Ambassador 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.

[bribaz]

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 in reply to bribaz]

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

[bribaz]

Yes, I know - it is not easy!

[Hidden]

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

[Hidden in reply to Hidden]

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

[PMRpro Ambassador 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.