Good morning
I have a question I hope someone can help me with. I have read on this group about the importance of reducing pried slowly.
I first got ill two weeks ago and am waiting for my appointment to come through to see the rheumatologist. My discharge notes from the hospital say I should reduce the pred by 5mgs every two weeks. Is this too much? It is believed I have GCA and waiting for results of biopsy.
Hi Elaine-W,
Sorry to hear you have/may have GCA.
It seems to be the thing for hospital to say reduce every 2 weeks, but personally I found every 4 weeks better. That way it's easier to make sure you keep the inflammation under control as you reduce. If you taper too quickly then sometimes you can go past the dose that does that. Presumably you have 5mg tabs, so you could try 2.5mg every 2 weeks.
You don't state your starting dose, but the advice is not to drop more than 10% in any one go. If you work that out roughly, and you started at a dose less than 50mg, then 5mg is too high.
Hope you get your results and appointment quickly - but don't be pressurised into reducing too fast. After 3 weeks the Pred is in your system, and you need to be careful. Have you got a Blue Steroid card? Free from pharmacy. You need to carry one, and you need to advise dentist etc you're on Pred.
Sure you'll have lots more questions if GCA confirmed.
Take care.
Thank you for your reply
I started with 40mg. I have a steroid card to Carry around with me.
I will leave the pred at 40mg until the appointment comes through.
Did anyone turn out to have GCA without jaw pain?
I wonder if it is something that could just start like the scalp sensitivity.
I had a few days this week where I felt a bit low and have my head around things now I think.
My lack of sleep was just ridiculous and I felt better after a decent night. I feel less overwhelmed.
I can't thank you all enough for the support and information. I will continue to read old posts in the hope that. I don't ask the same questions
Don't worry about asking the same question that may have been posted six months ago. We are always getting new people on here, and it's sometimes simpler, and quicker to ask again. Plus of course, opinions change anyway due to new ideas.
There are a number of "head" symptoms in GCA, and not everybody gets all of them, personally my temporal artery was never painful nor swollen. I believe there is a lady from Canada who didn't have any head symptoms, so she's always very concened about how to tell if she's having a flare.
Glad to hear you feel a little less overwhelmed by it, we all know how you feel, been there!
The "set" of so-called typical symptoms is neither comprehensive nor essential! Each of them probably appears in maybe 1 in 5 or fewer of patients. In terms of it being the thing that drives you to go to your doctor it is even lower. Some have just scalp pain, some have a bit of jaw discomfort - but it isn't essential even though some doctors are convinced everybody presents the same way! What is more common is that a symptoms appears eventually.
I have not been told I have GCA but I had blurry vision a couple of months ago and it went away. Then I had slight jaw muscle aches that hurt but not while chewing. My temples hurt on and off. Then my scalp started hurting a couple of days ago but the other symptoms are gone???? Don't know to think but don't want the biopsy if not necessary.
What dose are you on now?
I don't have GCA - but I don't think I would even think of reducing until you have the result of the biopsy. That may be negative - but that doesn't mean it isn't GCA that you have, that only means that they didn't find the giant cells they were looking for and that can happen in as many as half of cases. The diagnosis then is a clinical decision - were the symptoms convincing enough to say it could be GCA.
DL's advice is good - she after all has been there!
Perfect.
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