I have been on steroids for 4 years now, down to 4mgs for the last 12 months. Tried 3.1/2 a few times but had to go back to 4mgs. Thought I was doing really well and tried again a fortnight ago, woke up this morning with this headache back, so took 4 about 6am, The pain still hasn't gone. I'm telling myself now I shouldn't of messed about.
I have been diagnosed with GCA and thats the only sympton I have. (Headache), but when it's bad ,it's bad, really don't want to down that road again. Don't go to Rhumy as He wasn't very nice and I get all that I want and need from this Forum, ( Brilliant and caring.
I have got an appt. with my Dr. on Wed. for another matter and I am going to ask her what to do next, I did tell her that I had gone down to 3.1/2 and she said OK. didn't seem to want to talk about the problem and left it at that
Most of us are left to our own devices as what to do next and we are left most of the time to helps ourselves and hope for the best.
If any canbody can give their opinion as for what to do I'd be very greateful. Thank you
I live on my own and friends don't really understand wht your talking about, only to say " you always look well"
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Atracta
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Have you tried ordinary painkillers to see if they shift it? It's a start - if it works it is unlikely to be the GCA waking up. Not sure if headache is typical in low adrenal function which is a possibility at this level of pred dose.
Yes I have tried Paracetamol, always got them in the house, headache still hovering about. I have noticed with quite afew questions people as asking that it's all trial and error, /////We are really greatful for all your help, don't really like calling you old timers, more like experienced. What would we do without you, I will let you know what the Dr. says on Wednesday.
Hi Atracta, I would be really content to stay at 4 mgs. It is a relatively harmless dose with negligible side effects. It seems to be holding your headaches at bay. I guess it is your ideal dose. If it was me, I would stay there until the Spring at least. Watch out for worsening symptoms though. GCA possibly hasn’t done with you yet.
Isn’t the weight gain the most depressing thing? There are a number of very disciplined people on here who have cut white carbs out of their diet and have managed to maintain their normal weight. I am not one of them. I have noticed my appetite decreasing as my Pred dose gets lower. I am 2 dress sizes bigger than before diagnosis ( when weight was dropping off).
Grappling with the weight too Sheffield Jane. It is fairly depressing and at the moment just buying bigger clothes but I hate it. When hunger hits it is overpowering. Feel I'm being weak giving in to it. I had lost 8kg before PMR/GCA and now I've put that on and more.
Sounds like withdrawals to me. I'm on a similar time scale and dose to you, don't get the headaches unless it's withdrawals and they usually go after a few days. Like you I'm stuck on my dose so no withdrawals now but it did take time for my body to settle. What type of headache is yours - are your eyes affected by the light? I have GCA and these are always my symptoms and very painful, no painkillers take it off and take paracetamol as it helps deaden it - it hurts too much otherwise. It goes after a few days. I have to say they are more painful the lower the dose (currently on 4 1/2mg).
I would tell your GP symptoms are not going on 3 1/2mg and go to 4mg and stay there. It's an acceptable dose and symptoms should settle. If they don't the headaches need addressing but think you need to be stable on the pred first as it sounds as if it's the culprit. It sounds as if it's still settling after you trying to reduce and you need to rest up at this stage.
I also get the headaches if I've been doing too much which always affects my neck and shoulders and goes up the back of the head. I use a little Magnesium oil when that happens and rub it in the centre of my neck.
Thanks for kind words, this thing is so frustrating ,just don't seem to be able to handle it, I didn't relise that you can get the headaches when reducing and then you say your body can get used to the lowerdose. (Really really thought it was coming back with vengence)
I am frightened to death of getting those headaches back again, when I first started with this problem. (4years ago) The only way I can discribe the pain is somebody having hold of a cricket bat aiming for a 6 score and hitting the left side of my head with it just a few inches away from me. I really don't know how anybody could put up with this kind of pain. I could actually see the bat coming at me.
I must admit I never get any other kind of pain (once or twice on the bones at the front of my hips) Dr. says ir was PMR) it didn't last long and hasn't come back fingers crossed.
I did question him once about me only getting head pain and he said sometimes that happends. Very laxidaisycal!!
I had all the tests done at the begining, biopsy clear couldn't find any joint pain etc etc. I did wonder if it was something else the head pain. That's why I lose faith in the Drs. and Rummies.
Still pain in my head this morning so have taken 6mgs, see what a different Dr. has to say on Wednesday
Just remember that your body is trying to cope with the different doses, if all symptoms go then you do need that extra, if they don't then you do need to give it chance to go naturally - as I said rest and it it's withdrawals it will go within a week. Your GP might not know either. Only you know your body and what works for one doesn't another. Best wishes.
This letter just sounds like I have written it, I have GCA and have had it 6 years now down to 2 mgs two weeks ago but the headaches are coming back, so so disapointed, I too am on my own and nobody to listen to my problems. I have decided to go up to 5mgs today and hope for the best.
I have got another problem and I have never seen it on this forum, I have very high BP and on 3 Blood pressure tablets and I have a monitor, most of the time it wont accept the BP reading and it goes all stupid and then error comes up. Does anybody know if rhe Pred tablets can cause this to happen? I too haven;t got a rummie I sacked 2 at the beginning of this illness. I really don't think they understand or even want to, they pass exams and maybe understand the Theory but don't want to understand the pain we all go through. Many a time I think they are thinking I'm a silly old women, Anyway I hope I can get some reply to say maybe I could be right about the BP thanks
The pred CAN lead to high BP but if you are getting the error signal is it maybe due to either the BP being too high despite the medication - in which case your BP needs expert investigation, it's way out of a GP's ability. It may of course be something called essential hypertension - doesn't mean you have to have it, it means your BP is high and no reason can be found.
Autoimmune disease can lead to damage to the electrical cells in the heart and that causes arrythmias, I have atrial fibrillation though it tends to lead to low BP. But if your chest arteries are inflamed that could lead to raised BP - or renal involvement. Do you have regular blood tests to rule that out?
No its not my monitor it is the same with the Drs. and every monitor I use, also I have A/F had it now for about 4 years, had a cardierversion,and things have been fine with that. Its just this Blood pressure problem. I feel well but have got the Dr's baffled. Just thought somebody might know something else, I am going to the Dr's for another BP test on Monday. Thanks for the reply as I put it in the wrong section I was trying to reply to another lady and it didn't say send, I will get round to getting it right eventuality
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