I recently wrote about my doctor treating me as having GCA, based on the clinical symptoms I had- jaw claudication, generally unwell, flare up of leg and neck pain etc. I have needed to be convinced that I actually had GCA in order to accept the 60mg of steroids that I was a bit unhappy about taking, tho I realise they are essential to protect the eyes etc.
I didn't experience an overnight success. The claudication of the jaw went after about 6 days although there was still slight tenderness in the area. Most of my lower back and thigh pain went but not totally. Odd you might think on that dose for ordinary PMR. I have still loads of energy. A slightly spaced out head. Not sleeping as well as I'd like. Waking too early which is typical of high steroid dose. But compared to how I have been physically for the last two years of having PMR ( diagnosed 4 yrs ago and have had several flares at 6mg in that time) I feel pretty good.
Now. Here is what I really believe is my true diagnosis. I listen to my body. I try never to over react. If anything, I am too stoical and put up with pain when I shouldn't.
Two years ago I kept thinking that the constant pain in my high thigh area (is that the groin? Where the thighs meet the trunk. All the way round that point??) was not typical PMR. I also had a large swollen area above my right ankle which was there all day and worse at night, especially after walking the dog. I showed it to my gp and she said it was due to poor circulation. It ached. I often suffered from awful shin cramps at night. Very painful. Also spasms in my hands.
But I put up with it because it was 'just PMR as I knew it' .
Now since this flare and extra GCA type symptoms in the jaw and the high steroid dose, the swelling above my ankle went on 60mg! Slim ankle again. The thigh/ groin aches went. I think that my PMR morphed to lower limb arteritis some time ago. There was definitely a change in the type of pain and the fact that it wouldn't respond to the lower dose of steroids.
Maybe I'm just trying to rationalise being on this high dose. But I have already noticed this. Yesterday, my dose was put down to 50 mg. Reaction? Slight swelling again above my ankle. Not much, but it's there. Jaw more achey today. Aches in thigh/groin area there today when out walking my lovely retriever. Enough to make me go a lot slower than yesterday.
I know I have to allow this new dose to level out and see how it goes. But does anyone recognise this pattern associated with lower limb arteritis? Am I way off the mark? It makes sense to me.
My gp is very supportive. I have never been referred to a specialist. Should I push for this now? Would really appreciate your feedback lovely people. Many thanks.