I have been dropping my pred down very slowly and was almost on 4 1/2 from 5mg and I started to get headaches. Of course I was very concerned about GCA.
spoke to my rheumatologist and he said to go up to 7 1/2 which I did. It has taken my headaches away and I feel much better. Can one get a headache and it be a flare??
He wants me to stay on 7 1/2 for 3 weeks. Does that mean I have to start dropping from that number again? Or could I go back down to where I felt okay before the headaches after 2 weeks if still feeling fine?
many thanks
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Jampel
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My upper arms were a bit sore. I was planning on sticking at that number for a bit. But the headaches got in the way. I was just quite concerned about GCA
Fair enough. If it were me and the headaches were well gone in under 2 weeks, I would try 5mg and see if it is still enough. Had you noticed when the uper arm soreness had started? How long had you been at 5mg before the taper to 4 1/2?
My arms have been a little sore off an on for a couple of months. But not enough to make me stay at a higher dose. If just feels like a bit of soreness after exercising
I was doing DS and was in my last week and almost on 4 1/2 completely. But my headaches started the week prior.
As PMRpro has said, adrenal insufficiency can cause headaches - so maybe the lower dose was enough to trigger them. But do keep in eye on the arm situation as well, it sounds as if you might be just on the cusp of enough Pred, not quite enough and definitely not enough.
Staying put at current dose for a couple of months might help both scenarios.
Thank you PRO for the advise. I just want to say that seven years ago when I had this I actually finished in 1 and 1/2 years of being pred. It just goes to show it can change TY
I know no-one who has had it twice who found the two episodes were the same!! And even some doctors are now admitting they find that with GCA - PMR is no different.
I'm also tapering from 5 to 4.5mg. I find weeks 2 and 3 of DL's slow taper is when i will get achy, headachy and feel a bit jittery inside. All minor but I'm aware I'm not perfectly right. From experience, and I've been doing this for over 7 years now, it's my body adjusting to the lower dose...it only happens on the 4.5mg days, early on. Towards the end of the cycle it has settled. Have you tried taking pain killers? It's a handy way of making a self diagnosis. If they work it's not a flare or the result of too little Pred. I see you're still fairly new in the scheme of things, so i agree with my peers, 5mg is probably your golden dose for the time being. Once I get to 3mg and below I have found it easier to continue. Sadly I can never consistently stay below 2.5mg.
I found that with the DSNS, for the first 3 times of the new dose, I just didn't feel right, then it was as of my body said "OK, nothing's going to explode, forget it" - and after a couple more times I fel not quite right on the OLD dose days. So then I just went to every day new dose.
Thanks for your note This is my second time around with PMR and the first time it seemed like a breeze compared to this time. I will now know that when I get down further again it will be my adrenals and will feel off for a bit TY
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Beginnings of a flare?
confused
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Flare?
