Remicade question

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superspike25
Regular Member


Date Joined Aug 2006
Total Posts : 98
   Posted 2/16/2008 6:31 PM (GMT -7)   
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?
24 year old grad student trying to cope with CD.
 
6MP, Pentasa, nexium, calcium, iron, multivitamin, lexapro 
 
 


praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 2/16/2008 6:45 PM (GMT -7)   
well remicade became ineffective for me...so they put me on humira...its a self injection, but its biological like remicade. I think its working. Hard to tell w/this ileostomy
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!
 
Temp Ileostomy performed 1/29/08
Still Adusting
 
Healingwell.com has been my Godsend...Thank you


teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 2/16/2008 6:47 PM (GMT -7)   
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, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital
in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.
 My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
My Internest doctor has me on Lisnopril-HTCZ and Folic Acid. Diagnosed
with Osteoarthritis July 2007
 


superspike25
Regular Member


Date Joined Aug 2006
Total Posts : 98
   Posted 2/16/2008 6:53 PM (GMT -7)   
I have an appointment to actually meet with the GI in person after my next remicade session. (Sometimes I wonder if the GI actually exists or not... there's usually a middle man nurse whenever I have questions or need to report symptoms!) I'll ask about uping the dose. I don't have flares all that often (maybe two or three a year), but when they do come, they come in full fury and usually put me in the hospital. Once they start it's difficult to slow them down.
24 year old grad student trying to cope with CD.
 
Remicade, calcium, iron, multivitamin, lexapro 
 
 


fuzzyw
Regular Member


Date Joined Feb 2008
Total Posts : 48
   Posted 2/16/2008 11:21 PM (GMT -7)   
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!... tongue

fuzzyw
Regular Member


Date Joined Feb 2008
Total Posts : 48
   Posted 2/16/2008 11:48 PM (GMT -7)   
Hello again, superspike25...I hadn't read your 2nd posting when I submitted mine. I was shocked to read that you were finally seeing the GI??? You should be monitered/blood checked by your GI prior to each infusion. You should also be monitered routinely if you're on 6-MP, not to mention the fact that you have what sounds like moderate to severe Crohn's. Might be time for you to find a new GI. I'm fortunate to live in MA where I've access to some of the country's top medical care. Trust me, being treated by a Clincal Director at Mass. Eye & Ear (she was recently featured on the 'Today Show'), I genuinely believe that this is the reason why I still have my eye & I was able to treat the cancer w/ topical chemo (not available or used at all hospitals). I don't know where you're located but it's worth searching for the best doctor you can find. I believe that the difference between Humira & Remicade is that Humira contains human protein whereas Remicade contains mouse protein. While still noted for its serious side-effects, it may work better for you than Remicade (provided that you can handle injecting yourself). I had allergic reactions to Remicade & had to be loaded-up w/ Prednisone, Benadryl & a handful of other drugs before & after every infusion. If you do have remissions then you probably aren't considering ostomy surgery (this is usually the last option, unless temporary). I hope that you find a solution (& regular treatment!). Keep us posted... tongue

superspike25
Regular Member


Date Joined Aug 2006
Total Posts : 98
   Posted 2/28/2008 10:19 PM (GMT -7)   
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.
24 year old grad student trying to cope with CD.
 
Remicade, calcium, iron, multivitamin, lexapro 
 
 


fuzzyw
Regular Member


Date Joined Feb 2008
Total Posts : 48
   Posted 3/2/2008 11:15 PM (GMT -7)   

Hi superspike25...just to let you know, several yrs. ago, when they actually still had CCFA support meetings in my area, there was a young guy (actually, I was young then too) that was embarrassed to say that he didn't suffer from diarrhea. We were all amazed & while I was initially envious (his only symptom was severe fatigue), I began to realize how difficult it was for him...severe fatigue is one of my biggest complaints. I'm sure that he felt really alone...probably would've been better off in a Crohnic Fatigue Syndrome group (although I don't believe that this was a recognized disease at that time). If you're not having diarrhea but suffer from symptoms of malnutrition, it would seem that you're inflammation centers in the small bowel/ileum? Have you had any surgery? I know that it's difficult to treat the small bowel...resection results in the lack of nutrient absorbtion which you obviously already suffer from. I'm actually at a loss for words. My only possible suggestion is if you can find a way to tell if a flare-up is coming (often, my knees start to ache). Maybe you should try to keep a journal for awhile & see if any pre-symptoms stand out...at least you could seek treatment before things get really bad. Have they put you on TPN (Total Parental Nutrition)? Which is worse...constant pain/diarrhea or frequent hospital stays due to malabsorbtion? Difficult to answer. Please keep us updated. I'd like to know if the Remicade helps in your case. Wishing you remission! tongue

 

 


Fuzzy:
25+ yrs. Crohn's Disease Sufferer; 2yr. Ostomate (ileostomy)
2yr. Remission for Conjunctival Malignant Melanoma
Drugs:
Cipro as needed; Children's Vitamin/B-12 Supplement; Xanax as needed; Clonazepam 3x daily; Levothyroxin for Hypothyroidism (too many former Crohn's drugs to list)
Several Eye meds used to help prevent further damage resulting from treatment for eye cancer
(former 6-MP/Remicade user - ceased due to cancer diagnosis)
Surgeries:
Resection-'91, Sub-total Colectomy-'93, Rectal Abcess Excision-'01, Ileostomy-'06 (several other unrelated surgeries)


superspike25
Regular Member


Date Joined Aug 2006
Total Posts : 98
   Posted 4/5/2008 10:24 PM (GMT -7)   
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
24 year old grad student trying to cope with CD.
 
Remicade, calcium, iron, multivitamin, lexapro 
 
 


Aimee =)
Veteran Member


Date Joined Jun 2004
Total Posts : 1020
   Posted 4/6/2008 11:56 AM (GMT -7)   
superspike, that is kind of the way we went as well - surgery was my last option. Thankfully, Humira worked with Remicade gave out.

I hope the double dose sustains you awhile longer. It did for me about a year.
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