Remicade Update…

OK so it has been a full week since first Remicade Infusion. My gut feels good!! More than good!

For past 2 days only 1 trip to bathroom a day!

Just coincidence? ……who knows, but I’ll take it! :)

Side effects…..still have joint pain, which is slightly better today, not sure why. Could be the Tyleonl and Advil. I did go to Zumba last 2 nights and spent 30 minutes in dry sauna afterwards. I feel more energetic last 2 days. I have also noticed that I have had a continuous runny nose this week, not irritating enough to take cold medicine though.

Will keep you updated…..next treatment is Oct 5th

If anyone has any comments on their experiences with Remicade please let me know, I would love to hear how Remicade worked or not worked for you, and the side effects too. I would love to hear from women out there and if you experienced any female issues related to the drug. I am still a little scared about the drug. My doctor keeps telling me the side effects are rare, but that doesn’t ease my mind at all.

Also my doctor wants me to stay on the Asacol HD (8 a day) while on Remicade and that scares me too. Why? because if I have another huge flare while on both what’s next scares me. Any suggestions would help…Thanks

Current Meds: I am currently on Probiotic VSL , Asacol HD, whole food source vitamins, calcium, vitamin D, Omega-3, I drink plenty of water daily.

Other health conditions: Hypothyroid for which I have had for 12 years as well and have not taken Synthroid in a couple years (my bad) my TSH was 40 2 weeks ago. scheduled appointment with primary physician to get back on Synthroid.

Recent CT scan of abdomen showed gall stones for which GI doc told me to maybe get a surgical consult, as this may be giving me symptoms that worsen the colitis. (Whatever…..I am not going for surgical consult, my symptoms are the same as they have been during all flare-ups)

I think it’s interesting to know what other (if any) health conditions people with UC have. There are a lot of commonalities.

Take care everyone :)




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Remicade

4 Responses to Remicade Update…

  1. Miss. Meg October 1, 2011 at 6:21 pm #

    I was super sick after my first infusion, upper respiratory infection. After I got over that, I felt much better. I was on Remicade for over 2 years, even during my pregnancy. As soon as my husband lost his job and we lost our health insurance, I didn’t have any more infusions. It worried me to be dependent on it for the rest of my life. Time was a factor too. Very time consuming! I’ve been off of it for a couple of years now and my GI wants me to get back on it. My problem is more with the anemia. I was having iron infusions on top of the Remicade infusions. Never had the joint pain. My GI told me never to take Advil, but Tylenol. Ibuprofen isn’t good for UC’ers. Good luck. I don’t know if my body has gotten used to not having Remicade or if I’m just used to feeling like I do. Does that make sense?

  2. Amy October 2, 2011 at 6:46 am #

    I took Remicade for a year, until last month when my Dr. determined it failed. I remember the first infusion and how much better I felt almost immediately. I had been hospitalized for 10 days with pan colitis. Each infusion after though I learned to schedule on a Friday so I could have the weekend to work through the effects of the infusion — joint paint, sore throat, sinus stuff. All I wanted to do was lay on the couch and not move. I could really feel the cyclical effects of the drug over time — about 4 good weeks in the middle of the 8. Finally after 3 big flares and 2 scopes in a month, the doctor has diagnosed me with Crohn’s. So, I’m on Cimzia. I’ve only had 1 series of injections so far and have never felt so bad. The diarrhea was under control pretty quickly, but I’ve never had such bad joint pain and the blisters in my throat were intense. I’m scheduled for my second injections on Friday and am supposed to go back to work on Monday. I’m hoping it gets better.

    By the way, I had my gall bladder removed 2 years ago during a flare and 6 month bout with c-diff. My GI thought it was unrelated.

    Good luck and I hope Remicade works for you!
    Amy

    44 years old, diagnosed with left-sided UC in 2006
    Have tried Colozal, Asacol
    Now on Cimzia, 6MP, Canasa, multivitamin, folic acid
    Hoping to taper off Predisone soon!

  3. Mom-E October 2, 2011 at 8:49 am #

    Nurse Liz,
    Thank you so much for sharing your story. I have been following it for the last couple of days as my daughter will have her first infusion on Wednesday. We are both very scared but hoping it will work because right now she is miserable. It is comforting to hear from you – kind of a heads up :) Please don’t stop writing!

    Thank you!
    Mom-E

  4. Nicole October 2, 2011 at 1:16 pm #

    Thank you for posting your story. I am scheduled for another scope in two weeks. If my colitis has gotten worse I am scheduled to start Remicade infusions. The only thing that has helped me over the past year was Prednisone and my DR doesn’t want to put me back on it again. I have been on every single colitis medication over the past year and a half. Right now I’m on Asacol HD 6 a day and it hasn’t seemed to help at all. It is hopeful to hear how much better you felt after the infusion. I am getting married in March and my DR and I are desperately trying to get me out of this flare before the wedding.

    I think what worries me the most about Remicade is getting sick. I am a teacher and work with kids with special needs who cannot take care of themselves, so I am constantly sneezed/coughed on.. I can’t wash my hands enough times in a day.. But at this point I will do anything to feel better.

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