Nearing second anniversary of diagnosis, and down to 6mg/day (had flare 9 months ago when back at 40mg/day for 5 weeks). Have been careful with 3 months at 7mg/day, and now trying to reduce. But headaches, lethargy, very poor circulation to feet, pins and needles in arms. No eye problems, no major aches and only very occasional night sweats.
Is this just 'normalisation' in process of pred reduction, or does GCA 'grumble' like this? Any thoughts?
Could be your adrenal glands not sparking yet - you are now below the level of cortisol your glands would normally produce so your body is struggling.
Normally a slow taper - both in dose and time - help your Adrenals start working again - see attached
healthunlocked.com/pmrgcauk...
As you get lower - below 5mg - you can get your Adrenal function checked with an ACTH test, but hopefully things will have sorted themselves by then.
This is a common sticking point 7 mgs. It took me 3 goes to get to 6 mgs, with a flare in the middle. I have an Endocrinologist appointment looming and he has expectations of me being at 4 mgs. I did turn out to have sluggish Adrenals. My belief is that they will recover in their own good time. My symptoms guide me. It will be odd being told what to do.
Thank you to you both. Persisting with pred and will follow up on ACTH test.
Having grumpy argument over syncathen test as still not sure why I have to take risedronate when I have no baseline to judge it against!
7-5mg was jolly difficult for me. I felt so generally ill and achey, almost worse than in the early stages of this illness. It passed but I did no faster than 0.5mg per 6-8 weeks.
Thanks. OH (seems accepted abbrev here!) does keep reminding me that every day is progress and better now than x weeks ago. Just sometimes the struggle seems rather uneven. Onwards and upwards...
Have you had your vitamin D level tested? I had similar problems, thought it was pred withdrawal only to find I was vitamin D deficient (11) should ideally be 75-125. Had a big dose of vitamin D and now my symptoms have disappeared.
I get similar every time I reduce once I am below 10mg. I have just been at 5mg for 6 months with morning muscle pain and stiffness, tiredness and sweating especially in bed. But I have not had a flare. I want my adrenal test so I am preparing to reduce again next months by 1/4mg so 5.mg for two days 4 on third day. I have come to the conclusion I will have these symptoms until I get of Pred so am reducing very very slowly to avoid a flare. Previous flares at 4mg and 2.5 mg. Just into my third year and it is a slow slow journey.
I'd suspect it isn't GCA, it is just your body hasn't kept up with the reduction of pred now you are down to the "physiological dose" level. It will catch up, just sticj where you are until you start to feel a bit better, And maybe consider a low approach to dropping the dose - or just 1/2mg at a time.
Guidance please on pred reduction
EXTRA GCA (pred side effects)
Pred reduction for idiots ?
