well after 7 treatments of cyclo i have now graduated onto rituximab.
i've missed being on the forum but didn't have the energy to post anything but I thought that i would like to share what has happened so far.
after 7 treatments of cyclo and prednisone was finally tapered down to 5 mg daily plus the other wonderful stuff. I thought I was feeling better but then noticed extreme shortness of breath just before my 7th treatment as well as a cough. i, lilke an idiot, self-diagnosed myself, as pheunomia(?) after my infusion the next day, i coughed up some blood, looked like clots, and still thought ok, i'll keep an eye on it. Next day well I coughed up a lot of blood and ended up in emergency with pulmonary hemorraging in my lungs. this was determined by a chest x-ray. a broncialscopy was done and this further confirmed that my lungs were filled up with blood. Immediate treatement was IVIG-immune globlin, daily for 5 days to stop bleeding and now rituximab for 4 weekly treatments. 2nd treatment is today. my prednisone as again been increased to 50mg daily, split am and pm, so back to no sleep.
I have noticed severe knee pain which i hadn't before and would like to know if anyone has had this also. As well after eating it seems that nothing really gets digested!
Also MRI of brain was done as i was having extreme headaches and this came back negative so the brain, it seems is okay, so far, but I wonder at times!!!!
Hope everyone is doing well as it has been a while for me.
Take care
Harvi
Bookmarks