GCA 2 weeks at 70, 60 mg each
Been getting some strange intermittent pressure symptoms in head over the last couple of days.
Much worse this morning, feels at times nose area want to explode, moves around between nose, eyes, back of head. Only time had similar was when overdid a walk, and then quickly disappeared.
Phoned doctor, says on high dose, may be sinuses or stress, does not think GCA, thoughts.?
He is still going to see me today, just to make sure!
Get him to check blood pressure - good that he seeing you today.
So, already back from f2f with doctor, so much easier/ better than over telephone!
Blood pressure normal.
Thinks likely tension in neck, from PRED or otherwise, causing stress headaches.
Asked if I thought it was GCA related. I said wasn’t convinced it was not. So agreed take 50 mg tomorrow, if pressure still there or reoccurs ( tends to be in mornings) take the extra 10mg, and keep on 60 mg until get results from bloods taken today.
Very impressed with service👍👍👍
Good luck.
On high doses I permanently felt congested in the inside of middle of my face.
Apart from once when I walked too far, was fine until 3 days ago.
Today pressure been with me all day, taking full dose paracetamol, which doesn’t seem to be helping much, if any.
Good luck hope it works out
Its possibly oedema, that creates pressure in the head. I have experienced it. Prendisolone causes oedema. I felt it in the feet and legs. The pressure
Prednisone although a saviour, is also the worst experience I have ever had; so am no medical practitioner, just know that the steroid at high doses plays havoc. I have GCA, blind in one eye so was started on 100mg for 3 days; then to 60 and started tapering after 3months. However, never had pressure in head area, just wreaked havoc on muscles/ligaments/skin/hair etc and affected my balance. Finally walking without a stick, but wary of turning too quickly etc. Good Luck with your doctors and think about the Pred effects.
Many thanks for your response and sorry to hear about your experience.
Five weeks into PRED now, muscles definitely dIsappearing, bad insomnia, and moon face, so far, no doubt other effects to come.
Resisted the extra 10mg today, so still on 50mg, as pressure a lot better. Dr did say could be PRED side effect.
Ummm - that 'pressure' still sounds suspiciously like GCA pain - at least the kind I am familiar with from having it initially and during some 'flares' over a 3 and a half year period. Even though you have been on quite high doses they might not have been enough to control the level of inflammation - people absorb Prednisone in different degrees and then there is body weight. Also blood tests aren't always indicative (enough) to deduce all this from. I'd be a bit cautious about reducing to lower doses of Pred too soon before you are sure that this isn't GCA pain.
Many thanks for your response. The pressure seems to be sorting itself out without increasing back to 60mg.
The day I visited doctor was about 7/10 uncomfortableness wise and lasted most of the day. The next day 3/10 and diminished mid-afternoon, and yesterday just for part of the morning 2-1/10., but up to 3/10 when walking.
It’s very strange, but the pressure seems to start just after my dose of PRED kicks in.
I was thinking it was tension headache, as suggested by the doctor. Did your ‘pressure’ just continue to increase until you increased your PRED or did it vary day by day?
I was going to try and stay on 50 mg for at least one, hopefully two further weeks, which would make it a month at this level, anyway.
These things are so subjective - but your description of 'pressure' resonated with me as being quite typical of how my face and eyes felt initially with GCA. I often thought of my head as rather like an 'inflated' balloon and initially mistook the pain for sinus or allergy issues even though I already had PMR at that point. I sometimes also think Pred 'makes' me feel 'tired' but not being able to suddenly withdraw the drug means it is difficult in this whole process for us to make such simple assumptions. I am still inclined to think that you should just keep an eye on your dose/tapering in relation to the symptoms you describe - as our own experience is really more pertinent than any external 'measures' of what SHOULD be happening. Without having the condition themselves I think it is difficult for medicos to understand this very well as they are generally quite worried about the impact of Prednisone - often inordinately so given the possible consequences of NOT having 'enough' ! Generally it is 'us' who can really tell if it is controlling our inflammation or not .... (in my opinion anyway)
Many thanks, very wary at the moment about reducing dose and potential consequences of going too fast.
Dr was initially reduce fast, 2 weeks then down 10mg the thought of which was stressing me out. Last visit for this, he said smooth, slow and safe reductions, which is much more to my liking. I hope he’d been reading up about it, anyway will see, when I suggest another 2 weeks at 50mg.
P.S.
Loved WA, spent 5 weeks there at beginning of this year, touring from Perth as far as Albany in the south ( where it never stopped raining) and up to Exmouth in the north.
Update:
Decided to increase dose today back to 60 mg, without waiting for blood tests tomorrow.
Been having, on and off spot pains In head, jaw and teeth the last 2 days, this morning they are getting persistent.
Day 1 of Pred
Prednisolone tapering
advice please!
What are GCA headaches like?
GCA came out of the blue!
