GCA condition steroid effects or both?

[Bluey-1]

I was diagnosed with GCA two months ago and tapered down to 17.5 mg steroids from 60 mg. I have had insomnia from the start which is improving as the steroid dosage is reduced. I have practised good sleep hygiene - the full works, expensive sleep inducing bath foam, massage oil, magnesium oil spray, essential oil pillow spray…you name it I’m doing it and it is helping. I see the rheumatologist on Monday. ESR and CRP were down to very low levels (2 and 1.2) after a month so I’m interested in what Monday’s results show after two months. Despite sleep now improving, the build up of insomnia for months has been gruelling and I can’t distinguish fatigue that is as a result of steroid effects and the GCA condition. I get drained very easily and taking great care to pace myself. I do feel that there are big improvements since the dreadful day of diagnosis - looking back I hadn’t been well for a few weeks beforehand. Can anyone help? My thinking is it’s probably both and I’m aware you really have to follow what your body needs.

[DorsetLady PMRGCAuk volunteer]

Very fast taper, which maybe why, along with the sleepless nights, you feel as you do.

Maybe have a look at this - and just because your inflammation markers are low doesn’t mean GCA is cured, it’s not - so that is responsible for a lot of your fatigue - any autoimmune disease has that effect.

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

"My thinking is it’s probably both and I’m aware you really have to follow what your body needs."

Exactly so I would say!

[ubaoz]

I can really sympathise with the constant fatigue you're experiencing. It can be really debilitating can't it!

I was diagnosed with GCA in late May this year and have managed to get down to 22.5mg so far. In my case I think the fatigue is a combination of lack of sleep, steroid withdrawal symptoms due to my relatively fast taper, as well as the exhausting effects of the GCA itself. I've slowed my taper down a bit from the initial fast pace (I'm now dropping down 10% every 4 weeks instead of every 2 weeks and using a modified tapering plan as suggested by Dorset Lady) and am feeling somewhat better as a result. Hope you can get some relief from your fatigue soon!

[Viveka]

Sounds like you are surviving a very fast taper very well on the whole. I think feeling like you do is to be expected. If it were me I would want to be slowing the taper down now and spend a month at 17.5 to let the body catch up... The national guidelines would support this approach - useful to know, if you have a rheumy who advocates super-fast taper.

[Ridge]

I think the most sensible thing you are doing is joining this web site. I am 4 years in and have only just joined. In the past 4 years I have had all sorts of trouble which I think I could have avoided if I had had all this wonderful advice. One thing my Rheumy told me that CRP and ESR levels are almost irrelevant once you are on steroids. How you feel is the most relevant.

[PMRpro Ambassador in reply to Ridge]

CRP and ESR are irrelevant when you are on Actemra. They are still relevant for many patients when on steroids - if they start to creep up after a taper step then that is a warning that the inflammation may be escaping the pred and building up again. A single raised CRP or ESR without accompanying symptoms shouldn't result in a kneejerk increase in pred dose but should initiate monitoring to identify a trend over following weeks. Stopping the taper and possibly a return to a higher dose may be called for,