Remicade question

Howdy

It's been a while since my last post.  I'd been feeling great for a good bit of time, but now "my tummy hurts" again, and I could use a bit of advice.  I've been on remicade for about 8 months now.  I felt much better as soon as treatment started, but for some reason my white cell count started dropping.  The GI docs took me off everything except the remicade, my count went back to a safe range, but then I started flaring again.  Now they've put me back on everything and the kitchen sink, and I still don't feel better.  What is the next step if remicade doesn't work anymore?

Hi, Well for me last year the up my does of Remicade which is working great for me. I have been on Remicade for almost 5 years. I would talk to your doctor about upping your dose.

Hi superspike25...I'm a 25+ Crohn's sufferer & was on all kinds of meds during those years. I was on 6-MP for several yrs. & then Remicade was added, which I was on for 3 yrs. I often had reactions to the Remicade but it was helping w/ the rectal/anal abcesses & pain. My white-blood cell count was always low, due to being on immunosuppressants; that is one problem w/ these drugs, they can mask other infections (your counts were probably too low). Normally, if you have an infection/inflammation, a blood test will show a 'high' white count because these are the cells which fight infection. The drugs you are on suppress these cells from fighting the inflammation/infections (that's why they'll usually explain that you shouldn't be around sick people & wash your hands routinely). Anyway, I was diagnosed w/ Conjunctival Malignant Melanoma (rare eye cancer) in 2005 & was forced to stop the 6-MP/Remicade (the doctors don't know if these drugs may have caused the cancer (notably, Remicade) but certainly, immunosuppressants can increase cancer growth). Due to having to stop these drugs & following chemo, etc. for my eye, I went into the hospital for an ileostomy. It was supposed to be temporary but the surgeon told me during my follow-up visit that there's too much damage for a reversal. Having an ileostomy gives you more freedom & much less pain (I will need to make it permanent by having the rectum & 10% of colon that remains, removed). The drawback is that, after 2 yrs. of living w/ an ileostomy, it's still mentally difficult & there are many issues to deal with managing the appliance. If this is a consideration for you, I advise finding a good WOCN (Wound & Ostomy Care Nurse) to discuss this option fully & you may wish to check out the forum C3Life.com. I'm not trying to frighten you but patients need to understand how potent these drugs really are. Note: I had already had a resection & subtotal colectomy (90% colon removal) & was dealing w/ ongoing abcesses, bowel incontinence...very ill. Please let me know how you're doing & feel free to ask me any questions. Like I said, I've been through 25+ yrs. of this & have a pretty good resume of experience. Wishing you better health!...

Hi

I should have clarified. They do a blood test every time I get an infusion. Generally the routine is two or three attempts to get the stupid IV in, draw blood (while the nurse complians about the fact that the darn thing just doesn't want to flow), let the infusion run, fill out that Remicade survey (ya know... how many times in the last two weeks have been sad, blah blah blah.), finish up the infusion, take off, GI looks at my chart, phone call a few days later with the CBC results. They told me I have moderate crohn's... only mine is wierd. I don't get the majority of symptoms that everybody else on this forum seems to get (probably why it took so long to get diagnosd). No bathroom trips here... just serious anemia problems, malnutrition and rapid/unexpected weight loss due to the starvation. They told me that I'd been dealing with it for so long untreated that my mind became sort of immune to the pain. (Literally, I had GI docs pressing in on my abdomine while looking at my x-rays in complete shock that I wasn't screaming.) Sounds kind of cool doesn't it... at least I thought so until it kept landing me in the hospital. I've had four very close calls that put me in the hospital for weeks at a time. Part of the problem is, without the pain and the mad rush to the bathroom, I can't tell when I'm flaring until I'm already in pretty bad shape. (and it doesn't take a lot of time... last time I ended up in the hospital I went from a size 12 to a 6 in less than 3 weeks.)

I don't really think it's the docs that are causing my grief... I'm pretty sure it's just the nature of my disease. No surgery yet although I'm dreading the day that the GI even brings up that topic of conversation.

Here's the update...
GI's solution... double the remicade dose. Try that out for eight weeks... if that doesn't work... add 6mp back in the mix... if that doesn't work... maybe try switching from remicade to humara. Honestly, not willing to do surgery.

Thanks for the journal tip... maybe some sort of pattern will eventually emerge