It's probably 6 months since my last post. I'd like to thank everyone who replied. I initially asked if anyone was still being prescribed Thalidomide and where in the country you lived. Since then I've taken advice from my Rheumatologist and, since last April, have tried a series of other immunosuppressants - azathioprine, which I couldn't tolerate and mycophenolate together with colchicine which has made no difference. After feeling reasonably well for the last 15 years I struggle with symptoms which were controlled by thalidomide. My rheumatologist has now applied for funding for anti tnfs. She mentioned infiximab and Humira. I wonder how others find these drugs. My main symptoms are oral/genital ulcers, joint/muscle pain and fatigue, bowel and bladder problems. Added to this last August I was rushed in to hospital with a suspected heart attack. Fortunately, this wasn't the cause. At the time I had numerous oral ulcers and the opinion was that I had had an oesophageal spasm. I have suffered for years with reflux, heartburn etc and I know that I have reduced mobility of the oesophagus, food gets stuck and painful to swallow. There was no follow up They just upped the omeprazole to 40mg. This week I have had severe vomitting (only bile) and horrendous pain right side upper abdomen and all around the back - so much so that I had to dial 111. The GP has arranged an ultrascan and feels it's pointing to the gallbladder. I read somewhere that taking immunosupressants puts you at risk of gall stones. Has anyone else suffered like this or as my sister in law said "You are allowed normal conditions!" However, my GP arranged for an endoscopy prior to this, which I'm having next week, because of the increased pain on/after eating. All I can say is that, for once, I have no appetite and the weight is dropping off!!
I'd really be interested if you take anti tnfs, which one and how they effect you.