GCA and remission

[christine2715]

How do you know when GCA has gone into remission. It seems to me that if some people need steroids for very long periods because of adrenal failure how will they know if the GCA is in remission? Maybe I am being a bit dim about this. Also I get awful crackling in my neck, which is stiff and sometimes painful, especially if I move my head to one side. My sinus' are always blocked but I seem to have no infection. Have found Sudafed to be the best thing for that. I am on 22 mg Pred having reduced over 7 months from 60 mg. I go down 1 mg at a time and stick at that for a week but I do get odd flare ups still. Many thanks for all the help I have had on this site especially from Dorsetlady and PCPro.

[PMRpro Ambassador]

You don't get to the adrenal insufficiency stage until you get to about 5mg - and very low dose for GCA - and the replacement dose for it is under 10mg.

The only way you know you are in remission from GCA is lack of symptoms - there isn't as yet a recognised test (other than temporal artery biopsy which doesn't always work and is a one-off) to identify GCA's presence or absence. So if you need a low dose for adrenal insufficiency and you have no symptoms - take it and be happy!

Your cracking neck could be a muscle stiffness problem - I used to get very strange noises from my neck! I was very good friends with my osteopath!

[christine2715 in reply to PMRpro]

Many thanks. I might try an osteopath. I also read that it might be arthritis which it might be as my Mother had it in her neck. I believe you cannot take Naprozene with steroids as they are anti-inflamatories - they otherwise might have worked.

[PMRpro Ambassador in reply to christine2715]

Didn't help for me - I have both and had had the neck problem while not on pred so could take other things.

[DorsetLady PMRGCAuk volunteer]

As PMRpro says - you don't know 100%.

I think it's maybe just a gut feeling that things have changed, and obvious lack of any GCA type symptoms. Trouble is, many of us have other issues, that can be confused with GCA - I have arthritic left shoulder which very often made me think the worst!

Personally I found life very difficult between the reductions from 6mg to 3mg taken 0.5mg a time and slowly - but sure that was lazy adrenals. Once I got to 3mg everything improved noticeably - whether that was GCA gone, or adrenal waking up, or combination of both I don't know - but it certainly was a changing point!

However, because I'd been on Pred for so long, I still took the reductions very slowly until I got to zero - just in case the GCA was still lurking. That took another 10months, probably could have done it quicker, but wasn't going to take any risks.

[bunnymom in reply to DorsetLady]

Is it just PMR fog lifting from my vision or is that a new picture? If so, very nice!

[PMRpro Ambassador in reply to bunnymom]

I do believe you're right! Very nice indeed DL!!!!

[DorsetLady PMRGCAuk volunteer in reply to bunnymom]

New- thanks. Casse asked me how to get photo on her profile- so I had to go through the motions to be able to explain it!

[Mgeorge]

Don't know if it helps, but my rheumatologist said the neck " crackling " was just arthritis.