reducing steroids after flare

[Cobnut]

Having very slowly reduced my steroids , after over si x years with GCA the inflammation flared up after complications with my second cataract operation. My GP increased my steroids to 10mg which was not a huge amount when I was on 6mg. However a recent bloodtest showed that the ESR had gone down considerably to 6. As my head and jaw pain has decreased and I have been on 10mg for one week, how long should I stay on 10mg and how slowly should I go back to 6mg. The advice to increase steroid intake when facing any procedure is wise but difficult when contacting a GP is not easy and when we are not allowed to order any extra medication with consent. I knew that something was not right when I could no longer put my head on the pillow without pain.

[PMRpro Ambassador]

I suppose it depends - the underlying autoimmune process is obviously alive and well unfortunately and while 10mg is obviously enough to combat the problem (I'm assuming the symptoms have all gone too - they are more important than lab results) you won't know if 6mg is still enough until you try it. Up to a week or 10 days you don't NEED to taper - but I wouldn't drop to 6 either, I'd try 7mg first.

Where you can't contact your doctors in advance - and it is something you could do as soon as you get your date to discuss getting extra pred when they are so restrictive - I wonder how discussing it with the team doing the procedure would work? Is an anaesthetist involved at any point for cataract surgery? And where there are complications - I'd have thought Sick Days Rules should apply, especially for long term steroid patients who are now well below 10mg.

[Cobnut in reply to PMRpro]

Thanks for your reply PMRpro and yes it would seem that I am not seeing the end of my GCA journey and as I was 73 when it started and have just had my 80th birthday I'm beginning to think I shall have it for life. Our surgery works out how many pills you need for two months and any increase must be approved by a GP. Covid has made getting even a telephone appointment almost impossible so I think I left my flare too long trying to pretend the pain was due to the severe infection in my eye. Having TMD as well does not help the diagnosis. I shall stay on 10mg for at least another week and see what happens. No there is'nt an anaesthetist involved in the operation and the surgeon decides what drops to put in afterwards. Mine were complicated for some reason by the Micophenolate I take for my kidneys and I ended up with more steroid eye drops for six weeks.

[SheffieldJane]

That sounds to me like quite a nasty flare. Personally I would give the extra dose a week or so more until you are confident that the symptoms have settled. What is your doctor’s view on timings? Unfortunately blood test results cannot be relied upon to tell the whole story, we have to be so careful with GCA, as you know. What are your CRP results doing? I know that we can sometimes go straight back to the original dose after a maximum of two weeks on 5 mgs more. In your case I would be inclined to taper again. Patience is the name of this game.

[Cobnut in reply to SheffieldJane]

Thanks for your reply. Yes I think I left it a bit late accepting that the pain was not going way . I agree that it would be stupid to reduce too quickly but its easy when you are on a slow reduction . This increase has made the fatigue much worse when I was, like a lot of people, trying to get normal life back. To be honest I was always at my most comfortable at 7mg.but we are always under pressure to reduce.

[SheffieldJane]

Yes 7 mgs is where I have got stuck first with PMR for a year and then GCA currently.