Hi Folks,
I feel I have made some progress the past few months. I started Imuran in Oct and it really seems to be working well for me, on top of the RTX I had in June. I have a couple more questions/concerns/rantings? for you all who have had this longer than myself.
1) My specialist keeps beating around the bush for a possible maintenance round of Rituxan. Rituxan is a powerful drug; I don't want it if I don't need it. Is this a normal protocol? If I am in full remission should he administer it again?
2) Immune system. What have I got, exactly? My fear of getting sick is pretty extreme. Do I have any sort of immunity to the buggies at all?
3) I need to get some weight off; it's crappy. I'd like to kick about 40 pounds; or more... I'm not fussy. However I think my joints are junked. My arms seem like they are getting strong again; but my legs - especially my knees are not good. My legs are wobbly ... I need some low-impact exercise suggestions as I almost died on the treadmill... lol... Yoga? ... And is there anything that might help my knees? They aren't really swollen or anything like that.. They just feel creaky and they are unreliable. If I get down on the floor (to scrub the bath tub, etc etc) I have a hard time getting back up because my knees don't want to work.
4) Do any of you have a permanent or annoying sore throat? Seems like every few days I get one that comes and goes. I also still seem really out of breath sometimes. I cough too; and sometimes its mucus cough. However everything is good on bloodwork - it's just yuck.
5) Pee. Mine is a very unnatural color. I think it glows. IT'S REALLY YELLOW. It started after the Imuran. When I take my weekly urine sample to the lab they are always amazed by it. Obviously they can't find anything wrong with it but does anyone else have alarming yellow pee? lol
6) Prednisone moon face - It's time to go. I have obviously lost the puffed up look but my face is still 50% larger than normal. I have a chin that doesn't belong... lol... I have been under 10mg for quite some time. Anyone help me out here if/when theirs flew the coop?
7) Are any of you in drug-free remission? Obviously this is my goal. Right now; I think 50% of the crappiness I feel is a direct result of all the drugs I am taking. Maybe it's not realistic to want to be drug free but I would love to be!
I think that's it... I really hope I don't get sick again. I don't know if I could do that again so soon. Do 2nd flares come on as fast/as strong as initial flares? Are they harder to contain? Easier? I'm always full of Q's.. lol
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