Am feeling so miserable and sorry for myself which is pathetic when I read how so many of you out there suffer too. Most of the problem is that I have been ill with some sort of mystery autoimmune thing for about forty years or even more.
After numerous visits to hospitals, finally getting to Rheumatologists bloods have always been frustratingly negative. As soon as that happened I was told fibromyalgia, go home and get on with it. As years went by it all gradually worsened, joint pain, dry eyes and mouth, constant biliary infections and pancreatitis, sensitivity to lights, kidney infections, massive flares etc etc.
Finally two years ago I saw a super Rheumatologist privately, who would listen and think. He decided despite negative bloods I definitely had Sjogrens Disease and was suspicious of Lupus too.I was on Prednisalone 5mg per day and also hydrocortisone, can't tolerate higher steroid due to stomach issues gastritis.He decided depot medrol injections were the way forward so I get them every four to five months 120mg.
Initially they were like a miracle but after four times they are not working so long and then I have to revert to low dose oral Pred which is not enough. I can't have my next injection till Feb and life at the moment is a real struggle.I am flaring at the slightest thing, with hot red face , sore joints , bile duct problems, heart arrhythmia and angina and desperate fatigue.
I like one short walk a day with my dog, but if it is cold , windy, rainy or sunny. I get a flare. We even had to change the Christmas tree lights as the LEDs were giving me a flare too.
The last time I saw him he said he was not keen to change my meds due to the liver issue, can the newer biological drugs be taken with people who have liver problems? Or am I stuck on only the steroids.I tried the hydroxychloroquine but it attacked biliary system too and had to stop in three days.
Just feel so frustrated, because my bloods are still normal the Rheumatologist is not keen to try anything new
Is there anyone here who is seronegative? I feel I have fought my whole life to be believed because of my normal blood results and now thankfully I have a good Rheumy but such few treatments possible apart from the steroids.
Have heard of some people going to London Bridge Hospital but am in Scotland and at the moment am too unwell to go more than a few miles.
Sorry for the length of this but am awake as usual in middle of night with usual flare keeping me awake. Wasn't nearly so bad in summer, think the damp and cold are dynamite.
Hope you are all tucked up tight and sleeping soundly . C xx