Newly diagnosed with UC. Hospital for 12 days home for a miserable 6 back in hospital for 12.
I was actually getting better after the c. diff was conquered by Flagyl and Vancomycin AND they fixed my leaking blood vessels in my stomach and esophagus.....when the GI folks decided to try Remicade. I was so scared of the surgeons coming in every day telling me how they were going to take my colon that I didn't argue. but I was feeling a little better before the first Remicade infusion.
First Remicade infusion (while hospitalized) happened with no noticeable effects that I can tell. No Premed with tylenol or benedryl.. I didn't sleep at all that night but that could have been the IV prednisone or anxiety over the fact that they told me I would know within 24 hours if the Remicade worked. The GI docs seemed to think that it was working because the sent me home with my colon 4 days later. HOWEVER they never could give me a straight answer as to HOW they knew it was working. I was already feeling a little better every day though with not c. diff and no longer losing blood...
Second Remicade Infusion was on Friday. Either Remicade is working or my first flare is just going away because they cured the c. diff and fixed the torn leaking blood vessels in my stomach. for whatever reason I am thanking God daily. I don't have any experience or background as this is my first "FLARE" I felt so bad before the Remicade due to the c. diff and blood loss that I can honestly say that I feel a lot better now. But I'm still not back to feeling as good as I felt two days before I got my first flare and thought I had food poisoning.
As for the Remicade infusions. They are a cakewalk really. Except the 3 hour office visit and the multiple sticks I get to get an IV. No additional effects or side effects that I can tell good OR bad. I feel no real difference the next day... I'll let you know if the Remicade works a miracle in the next week or two.. My BM do seem to be getting better slowly regardles so I'm going to thank the Remicade. Down to 4, 5 or 6 BM's per day semi-formed pieces.
I just can't wait to get off of this darn Prednisone. Jittery hands and severe muscle wasting from the Prednisone... If I sit down my legs don't have the strength to get me standing again. Only now just able to fight my way up a small flight of stairs.. This was happening before the Remicade... I lost 50 lbs and a lot of blood in the hospital..
ANY advice with the fatigue and muscle wasting issue would be appreciated.
________________
39 year old male
First symptoms March 2010
Most conventional medications didn't work..
Currently
Remicade infusions 2 so far. NOT on Azathioprine (Imuran)
Tapering off of Prednisone (doesn't work for me apparently) 15 mg 2x per day. - Gives me Fatigue, Weak legs and jittery hands
Soon to stop Flagyl 3 x per day - Supposed to take until this Wednesday then stop cold turkey no taper
Nexium 2x per day - will probably keep for a while... don't want to change everything at once...
Vitamin D -
Daily multivitamin
Vitamin B-12
Fish Oil
Post Edited (PanUC10) : 5/23/2010 7:36:20 AM (GMT-6)