Hi again. After two months on 20mg I'm still in the throes of beginners' confusion, and although I've now persuaded my dr to refer me (have got an 'urgent' rheumatology but not til 16th February) I am finding it difficult to stop worrying that I might have GCA or LVV, and feel like I'm spending my days waiting for something terrible to happen. I know the worry and stress won't be helping overall, so I wonder if anyone here can advise whether what I'm experiencing is the result of steroids or some underlying inflammation which hasn't been mopped up by the 20mg dosage.
I have a constant feeling of a tingly scalp, particularly on the top, and a dull ache at the back of my head and top of my neck. My head feels full of pressure. Sometimes the headache is much more painful than others. Mostly it's just dull. The tingling is the main symptom. The head symptoms have only come on since about a month into taking prednisolone. The first month was wonderful, but I guess that's the pred honeymoon everyone talks about!
On the one occasion I tried to reduce the pred dose to 15mg (too soon, probably) I experienced jaw ache, which disappeared when I increased the dose back up to 20mg again. Jaw ache had been the final symptom which emerged before I started taking the pred back at the beginning of November. The Dr sent me for an emergency eye exam at the time but there was nothing to see, GCA-wise, and I was advised to stay on the 20mg dose. At the time I didn't know enough about the spectrum of the disease to worry significantly about it, but looking back I can't help wonder if GCA was developing and if I should have been started on 40mg.
Does anyone else have these head symptoms on pred? The symptoms are not acute, which is part of the problem - I feel a fraud going to A and E, and if I phoned the out of hours I don't think they'd take me any more seriously that my own doctor's surgery, which I am also loathe to go back to as they clearly think I'm making a fuss about nothing. All this leaves me feeling very alone and confused.
I'm hoping to get a private rheumatology appointment but even that won't be til mid January at the earliest, which leaves me feeling a bit stuck between a rock and a hard place. Am I right to be concerned, in which case do I self-medicate and increase my own steroids to 40mg? Or does anyone have tips on how can I best approach the medical profession to get someone to take me seriously and address my concerns without just saying 'you're tense, your headache is just due to that'.