Posted , 8 users are following.
After being diagnosed with GCA and PMR last November I have gradually reduced my 40mg steroids down to 7mg
Last week I got a terrible headache and jaw pain which just won’t go!
I visited the doctor today who has said I need a blood test tomorrow but as it’s the weekend I need to go back to 30mg of steroid !! I’m gutted!!
0 likes, 11 replies
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Elijo anne28129
Posted
I t seems to me that if you were on 40mg. last Nov. and have reduced to 7 mg. in less than a year, that maybe you reduced too fast. Did you do the reduction on your own or according the MD's instructions? Good luck!
anne28129 Elijo
Posted
r.d.s26296 anne28129
Posted
Oh Dear
Don't reduce your medication quickly. Slowly slowly.
Feel well soon, we all understand your feelings.
Chin up. ??
ptolemy anne28129
Posted
anne28129 ptolemy
Posted
Just hope the blood tests come back ok so I can return to 7mg
I really dislike being on steroids 😩
Anhaga anne28129
Posted
Anne, your markers may not become raised again. This does happen with GCA and PMR. Just as at the beginning, it's the symptoms which must be treated and taken seriously. You don't want to risk losing your sight or having a stroke, do you?
And, by the way, what kind of response would you see if you asked everyone who liked, or simply didn't mind being on steroids to raise their hand? Bet you would see not a single hand raised. None of us like being on steroids. All of us want to be off them. All of us are lucky we have them to keep us functioning!
anne28129 Anhaga
Posted
I’ve gone up to 39mg until I get my blood results. If the results are ok will I be able to drop back to 7mg or will I need to taper back down again?
anne28129
Posted
Anhaga anne28129
Posted
If you flared at 7 it's not quite enough so I think the recommendation is you go to a level slightly above where you started to have symptoms, wait there a while, then taper very slowly so you don't miss you "lowest best dose".
And you aren't being selfish. I was just saying we are all in the same boat! I do have to say this "boat" has put me in virtual touch with many interesting and compassionate people. Silver lining.
EileenH anne28129
Posted
Unfortunately flares are common in the first 18 months of GCA - and they are mostly caused by reducing too fast or too far. To have got down to 7mg in under a year is VERY fast and one group recommends staying at 10mg for a year having taken several months to get to 15mg. There is evidence that the underlying autoimmune activity is still active and causing inflammation even after 6 months on high dose pred (above 20mg) just waiting to flare up and cause more inflammation when the pred is reduced too far.
To add to the confusion, the markers may not rise because you are on pred even though it wasn't enough to stop the inflammation flaring up. Symptoms always rule.
No-one WANTS to be on pred and I know it is disappointing - but there is no point fighting it because you run the risk of ending back at the start. Yes, you can drop staright back to 7mg from 30mg if you haven't been on the high dose for more than about a week or so. But you might be much better going back to 10mg rather than 7mg and sticking there for a while to let things settle down. One group keeps their patients at 10mg for a year - and find it reduces the numbers of flares. After all - a few months at 10mg is far preferable to starting over again isn't it?
anne28129 EileenH
Posted