I know there are tons of posts on the subject of remicade. My GI and family practioner both think I should be on it. I'm supposed to start it tomorrow.
It makes me nervous to say the least. I've read about it quite a bit. The side effects ( that you CAN POSSIBLY get) seem like it might not be worth the potential help from taking it....I'm just so confused!!!
I was diaognosed in 2004 with UC, wanted a 2nd opinion in 2005 was diaognosed with moderate severe UC, probable Crohn's. I was on I beleive every pill from to try to treat it for over a year. The last pill form was immuran, it woked for awhile, till I started feeling really good except for some breathing problems. I went off it on my own, I was in a pretty good remission like state till a couple of months ago. Then started with the diareahha, bloating, pain, all the usual symptoms again. Went back in to see my GI, she was leaving so I've been seeing a temporary GI at my clinic along with my family doctor. They were both wanting me to either go back on Immuran go start remicade. They put me on prednisone(have been on that since 7/9/08 and hate it stuff, but it has helped the diareahha control)
Well, 10 days ago I started having unbearable pain on my lower left side, went in to the GI, went through exrays and CT scans, and it was showing inflammation in lower intestine and colon. My GI said he then wanted to start me on immuran on my next clinic appointment with him, but he said it takes like 6 weeks to started truely helping, soThey tried me on some pain relivers that gave me really bad side effects ( couldn't breathe decent, and a seizure ) so needless to say I stopped taking that, called the GI doc and he said he couldn't get me in so I could go to the ER if I wanted. Well By the time I talked to him, I was starting to feel better so I stayed home.
Now this last Friday I again couldn't tolerate the pain any more ( the pain now is, on my lower left side and my lower left side on my back) both my GI and family doctor said they couldn't get me in so if I wanted to I could go to the ER. Well, I did that, and they admitted me into the hospital where they just kept doing the same test ( CT scan 2 times, TONS of blood tests, and TONS of exrays) was in there till late afternoon today, Sunday. They tried me on Ketorolac by IV, instead of the prednisone and to help with pain, which didn't help the pain at all, and the on Sunday gave me a Lidocaine Patch, which eased the pain some.
What REALLY scares me is that I've always had on the lower side of blood pressure and heart beat ( it was ususal for me to have 50 for my heart beat and blood pressure of like 106/68) well while in the hospital the last couple days my blood pressure dropped I don't remember the numbers exactly but, I know my heart beat was going between 28 and 44, which is not good...and had some feelings like I could'nt breathe right, harder to breathe than normal.
The reason I got released from the hospital at all, was cuz none of my test showed anything wrong except for my inflammation in my lower intestine and colon like before, they said my heart looked fine (the right size), and my lungs and other organs looked fine, and I have my GI appointment tommorrow, which is when they want me to start remicade.
I told them I would go to the appointment and now am wondering about the effects of remicade on my heart...they said it looked from exrays or ct scan...I don't know if I trust this. If my hearts fine like they say, do you think it was a reaction to the Ketrolac drug??? And If my normal heartbeat is at 50, should I worry about Remicade???
I'm sorry this got SO long!!!!