I have been reading and making the odd post on this forum for a while and it is now time to tell my story.
I have bd and live in Australia. In November 2008 I developed problems with my left eye, went on a long holiday and developed all the other symptoms(ulcers,painful joints, skin lumps & tiredness )and then was diagnosed. Very lucky compared to most of you. I was stared on prednisone (50mg) & methotrexate. This went ok until the side effects were too hard and I was changed to cyclosporine. Again this was ok until I developed kidney failure. Moved to interferon then infliximab. During this time I had many addmissions for lengthy periods up to 3mths.
Then I had a bowel perforation needing a colostomy, obstructed kidney needing a stint and was started on Asa but due to my liver failure and continuing kidney failure they needed to stop. Started on cyclophosphamide but lost my white cells and needed the rescue drug. So went to the oral dose with humeria. I also had shingles and positive TB test but couldn't have the treatment due to liver problems. During this time I also seemed to get periods of haematemises needing endoscopes and blood transfusions.
I stayed on the cyclo& embril (changed from humeria ) for a while but following a bone marrow biopsy my bone marrow was giving up. So next combo is micophenolate,tacrolimus, 50mg of pred and every 3wks IV methyl pred.
My last 6 addmissions have been via ICU due to sepsis and now with seizures as the bd has spread to my brain. The effect on my eyes has left me with only 20% vision. So things are not so good at present but we managed to get travel insurance and hope to go to the US in January for a ski holiday ( not sure how that will go with the vision but worth a go)
I can see the wonderful support that this forum offers and it stops you feeling sorry for yourself. I have been in contact with Lesley and that has been great.
Wishing you all a wonderful holiday.