Hi everyone.
It's been a while since i posted about myself, so quick update. 63yrs old, PMR diagnosed over three years ago and taking 20mg pred. ( but i know i have had it for a lot longer undiagnosed) . GCA diagnosed over 2 years ago pred increased to 40mg , with increases up to 60/80mg when having a flare. I also have hydrocephalus, hypertension, hypothyroidism, and had a brain haemorrhage 28 years ago, so I take quite a cocktail of different drugs. I had become so steroid sensitive that I have put on over 4 stone, my teeth are suffering greatly, my breathing is short and wheezy and i have scarring on my lungs, my muscles have been replaced with fat, so walking is very difficult, my eyes have got steroid induced cataracts and the glaucoma which I already had has raised my eye pressures so much that I am at the eye hospital every other week to try to reduce the pressure, and I have steroid induced pre diabetes. The pain I am in is almost too much to cope with and the fatigue is overwhelming.
Last summer I was told I had steroid myopathy and I was to get off steroids as soon as possible. Every time I tried to reduce I had a gca flare and so the pred had to be bumped up again , then start again reducing. This all had to be done cold turkey because I am allergic to many strong painkillers. (They don't seem to work for the pmr pain anyway).
Two weeks ago I was in my usual reclined position on the sofa watching Sunday afternoon TV because I was too tired to do anything, when I started having gca flare up symptoms, Temple pain, head pain and visual disturbances. I didn't phone the out of hours doctors because I was pretty sure it was another gca flare and I knew what to do if it was. And as I had a routine appointment with the eye clinic early Monday morning I wasn't too concerned.
Next morning at the eye clinic everything took off. It seemed I had suffered a TIA and so started a whole new round of tests etc. Anyway, to try to condense this, even though i was told the sight loss would return in 24/48 hours it has not returned. I was told by the ophthalmic doctors that I also have sjogrens syndrome, which makes a lot of sense with my symptoms, so was given extra drops to help with the dry eyes. But, they make my eyes so very sore that the small amount of sight I have is worse and painful.
Well, you may think that's enough for now to cope with, I was sent for a brain scan with regards to the TIA and what they found was the hydrocephalus which had laid dormant for many years has returned and the neurosurgeons want to put a shunt back in my brain. I am not too happy about this as I think it is one heck of a coincidence that it has increased to this size so quickly. I really believe that it is also another result of the steroid myopathy and that as I get off the Prednisolone the increased brain flaid and pressure will also go down.
As I am writing this, I realise it might be too worrying for some people starting out on their pmr journey so administrator please delete this post if you think it not helpful.
Anyway, I just wanted to share with you that if symptoms change it might not be down to pmr/gca or steroid withdrawl, it may be prudent to get a doctors opinion on what's going on. I'm not sure what has caused my sight loss, but just maybe if I had got medical advice I may not be in the pickle I am now. Because I had had so many gca flare ups I thought I knew what I was doing, sadly not !!
What are the specific eye symptoms that precede sight loss?
GCA questions
GCA concern
