Hello all, I have been following the blogs for a month now after I signed up in the middle of the night as not be able to sleep as usual and they are very interesting, thank you.
I was diagnosed with GCA 4 years ago at the age of 45 and put on 40mg of pred which help my symptoms within around day 3. Thought I would be ok after that but that was the start of my nightmare. I kept getting flare ups and stayed on high dose pred, methotrexate & azioprothine (not sure of spelling) and even low dose chemotherapy tablets for two years which crushed my immune system and I have been close to dying with septic pneumonia ( they called my children in to say goodbye to me)! I have septicaemia three times in all now, the last only two months ago.
My doctor thinks I have PMR as some days I can bearly walk or get out of bed but the rheumatologist has said its fibromyalgia. The pain I have now is managed with bru trans patches of 20mg and daily tramadol or cocodomol as a top up. I have also been back and forth the opthamologist as my eyesight has deteriorated to such an extent as I have now been stopped driving. I now have a taxi to and from work but have lost my independence for everything else although my daughter has been very good taking me shopping.
The rheumatologist now says he's not sure if it is GCA as I didn't have a biopsy, 4 yrs down the road. I am down to 5mg of pred now, the lowest I have been & the rheumy says he intends to keep me this for life, unless I have another flare.
I have gone back to work 3 days a week, mon, weds & fri with a day off in between as I am shattered doing straight days, need a stick to walk as I now have osteoporosis in the spine and feet, and steroid dependancy depression.
Now I have written all this I am sorry to have gone on but it's good to share as I have been reading, so forgive me. My motto is ' it could be worse' .