After six weeks lonely wait (apart from this forum) on 40mg Pred and no information, no real discussion with the Reg who saw me in A&E, I was in Rheumatology yesterday. Still no consultant. Anyway, the nice young man, a Reg, did listen and didn't talk at me. He felt I was very young at 54 and unexciting inflammatory markers made it less likely GCA but my rapid good response to Pred and my symptoms made it compelling enough to keep on with normal Pred reduction. I whipped out the guidelines to save his breath. I said I'd had a bumpy ride with my Pred taking and now take enteric coated at night. He said he'd not heard of them being like sleeping tablets which I find very surprising and he said he'd not heard of anyone manage to lose weight on Pred. I assured him it was taking massive self control and carbs/salt lock down. He seemed relieved when I said my face had changed though. Perhaps it was looking like I wasn't absorbing any Pred!
The DEXA scan came up as osteopaenic but I told him I'd already run figures through the FRAX tool that wasn't working on his computer and that I was still in the green zone for no Bisphosphnates. So, he agreed on supplements. PET scan ok but I asked if inflammation in the body would have been suppressed by the Pred after three weeks and he said it might, so not totally reassured. TA biopsy negative.
So now I'm scared stiff about reducing. I'm still aware that my left temple doesn't feel normal if it prod it but it doesn't hurt. Occasionally i get a sensation like a tiny bubble going pop painlessly there. Eyes and scalp are fine. I asked what he considered to be a flare and he said if I had the same symptoms as before give the Dept a call. I thought, nope mate, I'll be popping extra pills and going to A&E rather than wait days for someone to get back to me. I asked if my temple not feeling normal was par for the course and he said normally people get no symptoms after Pred starts but sometimes they can. Hmm.
No follow-up, into the care of my GP and the wild blue yonder. 😮
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SnazzyD
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"PET scan ok but I asked if inflammation in the body would have been suppressed by the Pred after three weeks and he said it might" - even 10mg pred is enough to interfere with a PET scan so doing one on someone on 40mg is rather a waste of time and money - PET scans. Young at 54?????
But you know what to watch for - and I have heard a lot of people say they keep having strange sensations even on pred.
Thanks, that's reassuring about the sensations. Common sense brain tells me that if there was a problem in my artery that with hindsight may have been there quietly brewing for months, the tissue changes won't magically go in six weeks. My fear brain just reacts to anything that points to a potential relapse. I
did ask if the PET scan would show gross abnormality in the vessels but the reply was a bit waffly and felt like he didn't really know the answer. I did push and ask if a big fat aortic aneurysm would show up if the Pred had suppressed the inflammation, and he said yes, but still in a winging it sort of way. Sigh.
Did you discuss reduction plan, or has he left that to your GP? Whatever, don't be pressurised into going too quickly, sure you won't, but as we know many doctors have a love/hate relationship with Pred, and want you off it asap. From personal point of view I would suggest 5mg steps once a month initially, until you get to say 25mg, then 2.5mg drops - provided all okay.
As for headaches et al, I had funny head (funnier than normal!) for a few weeks initially on Pred, but not sure whether GCA, Pred, shock or just getting used to mono-sightedness. Sorry not much help!
No follow up, so I guess the GP. My knowledge of GCA is greater than hers already, though frankly I'd much rather have a discussion with someone who can challenge me. If I whip out evidence or guidance e.g. DSNS I'm sure she would go with it. Happy with that and this site.
Funny you said about the 5mg, as I was wondering the same myself and did 35mg instead of 30 this week; 25% drop seemed huge. I usually end up doing things by gut feel in the end.
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