I've pretty much managed my own PMR and GCA in the last 3 years. I'm on 10mgs Pred and can just function at this dose with plenty of little niggles to remind me I have an active arteritis in the background. Saw (yet another) young rheumy registrar yesterday and told him about the Bristol protocol and said I would like to stay at 10mgs for at least 6 months because it is the first time I have felt normal in 18 months and I need a holiday from pain and sickness. Of course he disagreed and said I must push on to 9mgs asap. I knew this day was coming, when some young medic would have my wellbeing in his hands. It has occurred to me that they have no way of knowing what dose I am actually taking when I go for follow up and I could just lie next time and say I've got down to 5mgs. Of course, this would make it totally pointless going for a hospital follow up and be a waste of everyone's energy. I must also look at myself and see if I am being unreasonable or jumped up.
While I'm ranting, one other thing irritates me. I have mild resting jaw pain as a symptom that my disease is active. It goes when I take my pred. Try telling that to an inexperienced medic. It's not claudication because it happens at rest, so he won't accept it's GCA. (Personally, I think that means it's more serious). I tried to educate him and say it's like 'angina of the jaw' - i.e. pain at rest from a narrowed artery. That provoked him because angina is cardiac pain (duh - as though I didn't know)- so he thinks I am saying I have angina. I tell him that GCA can cause infarction of the scalp and the tongue - what's that if it's not ischaemia and ischaemic pain? I am so afraid to be who I am - a patient with really good education who knows this disease from the inside and who has read more than he has. It is so easy for them to write 'difficult' in your notes and then you're doomed. So I have to pretend I don't know what I know, and he is left with big gaps in his knowledge like before. (I remember going to see a doctor donkey's years ago when I had a stone in my submandibular salivary gland that you could actually see like a big rock under my tongue. This doctor said 'there is no submandibular salivary gland' so I went away and lived with the stone for another 5 years until my gland blocked up totally and I had to have an emergency operation.)
Perhaps I am difficult. I have every right to be, I have been so unwell with my GCA and at long last I am on a dose where I can function. I could always fake a flare and stockpile steroids. When I see myself writing like this I do worry that I am being unreasonable. What do you think fellow sufferers. Am I being a bitch?