I have been on mycophenolate since may, it has helped considerably with the joint pain and swelling and am very thankful for that. However I have had a couple of huge flares which i don't seem to be able to completely get over. in some ways I feel better but in others i feel so much worse.
In the morning I am very weak and shaky. My legs are like jelly and my whole body seems to have a tremor especially my hands. the weakness does seem to ware off by mid day but for the last 3 months or so I have been unable to go out of the house with out my wheel chair. I have tried to make the effort of going for a walk each day and trying to walk a lamppost further every couple of days. I think I am up to about 300m now,
the other thing I have noticed is that my hands and feet keep going into spasm, now this is ok when i am sat at rest, but I keep dropping things and loosing my balance and I am going to end up hurting myself sooner or later.
the other strange thing is that I always have weird paranoid / neurotic dreams before a flare, but they are now filling my day time thoughts - its awful. I can't tell my partner this bit as i don't really know how to explain it
I have also gone from 8st 10 to 7st 7lb in 6 months whether this is relevant or not (?)
I should have had a rheum app in November but I was ill so the clinic didn't want me to go, they gave me a new app for the end of march. My docs always say they don't want to interfere with the rheumys plans - cop out in other words - but i am not sure whether this is a normal symptom or whether i should try to get an earlier app.
any suggestions would be greatly appreciated