HealingWell
Search Close Search
☰

Remicade Made A Difference

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/18/2011 7:20 PM (GMT 0)
so because of the new year, my GI's office has to go through all the insurance approvals for Remicade and they don't do any infusions the fist two weeks of the year. Well during those two weeks is when my 6 week appointment fell so we had to schedule me at 8 weeks. Right around the 6 week mark, my symptoms started to get really bad...my BM's were getting really loose, I had severe gas pains, loss of appetite, very run down and an overall "sick" feeling. Those just gradually got worse and worse leading up to my infusion yesterday. Luckily, I have not seen any blood or mucous during any of those symptoms and BM's being only 1-2 times a day. I have also been off Prednisone since December so I also thought my symptoms could be because of that but I refuse to go back on after the damage it's done. Leading up to my infusion yesterday was the first time I seriously considered discussing the surgery with my doctor I felt so bad and kept saying to myself I can't live with this the rest of my life. I had plenty of "why me" days where you sit and ball your eyes out for no reason. I was going to give this Remicade infusion one last shot to see if it really makes a difference and it did. I got my infusion in the morning and by late afternoon I felt 100x better. This was truly the first time I was really able to tell how much of a difference it actually made. My energy and not having that overall sick feeling is really what has improved. They do give me an injection of the steroid Solucortef before my infusion so I was hoping it wasn't just that covering up my symptoms. Cramping has been much much less as well. I'm scheduled to see my GI in a couple weeks so hopefully the Remicade continues to work. I'll feel much better in a couple of days if my symptoms are still mostly gone then I'll know it's not the steroid. Anyway, that's my rambling for the day :)

Gordon
Posted 1/18/2011 7:37 PM (GMT 0)
Rambling is fine!! Keep us posted as to how you're doing. Seems this might be a positive this time....hope it continues.

q
Posted 1/18/2011 7:51 PM (GMT 0)
Wow Gordon, that's great news! I'm so glad you are feeling better; and of course....rambling is fine around here!

Posted 1/18/2011 8:07 PM (GMT 0)
Awesome news. Hopefully the remicade will keep you feeling well for a long while.
Posted 1/18/2011 8:16 PM (GMT 0)
That's great. It gives me hope for the future :) I hope you continue to feel good.
Posted 1/18/2011 11:49 PM (GMT 0)
granted my symptoms aren't perfect but prior to my infusion, I could barely get off the couch to do anything. I would spend my entire weekends on the couch watching TV. If I got up to do anything, within 5-10 mins I would be right back on it. I come home from work at night and straight to the couch for the evening. It definitely feels promising that I feel like getting up and around
Posted 1/19/2011 1:29 AM (GMT 0)
It's so good you're feeling some better! I hope you continue to! Thanks for bringing us up to date.
Posted 1/20/2011 12:00 AM (GMT 0)
Glad it is working, I'm on it also and it is working for me. I'm not perfect either but i have a life. My complaint is I'm still tired. Good luck. I would give it awhile before you give up on it. I started in July 2009 and got a scope in march 2010 and while my symptoms improve my colon wasn't healing, they wanted to take me off and I said can I have another year and she said six months but in August 2010 she upped my dose to 7.5kg. I go every eight weeks. I don't get urgency or problems right before my infuion but I had a scope yesterday and a year ago I had severe uc throughout my whole colon. My left side is completely healed and my right side has mild inflammation and ulcers. I still go D about 4-6 times a day but sometime less mornings are still bad but I don't have urgency as much, I use to have accidents and now I haven't if I have to go i still have to go but I can usually find a bathroom before I have a problem. my stool is still loose so I'm not perfect either but it has helped a great deal.  I hope it continues to work for you
Posted 1/20/2011 12:37 AM (GMT 0)
I'm curious to have a colonoscopy and see how much of a difference it's made since I started it last april in the hospital. I'm pretty much on the max dose at 10mg/kg every 6 weeks...it needs to keep working, I'm running out of meds
Posted 1/20/2011 2:57 AM (GMT 0)
I know how you feel. I was freaking out yesterday I didn't want to think about going off it. I have humira and the new trial drug MLN-0002 left and than surgery. I would probably try the humira but not the trial drug. I don't know though when faced with the choice. I also was looking into acupuncture and fecal transplant. I have to tell myself I tried everything before the surgery. It just makes me feel better.
Posted 1/20/2011 2:39 PM (GMT 0)
I too had great success; my colonoscopy in August 2009 showed no ulcers, and no polyps. I start with a new doctor on Friday, so we'll see if he wants another...kind of want one to have one to see if things still look good!

✚ New Topic ✚ Reply