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One year on Remicade and I got worse!

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Crohn's Disease
How much remicade are you on?
>500 mg once every two months - 0.0% - 0 votes
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Posted 11/15/2008 10:34 PM (GMT 0)
47 years old, Been sick with CD since 1985!

2 Bowel Resections 1986 and 1995

5 + Hemorages where I landed in the ICU because of fast blood loss

Dr put me on Remicade 15 months ago and I was already feeling better on it when I started

Now for the past 6 weeks my CD is back and worse then ever

Pain, Cramps 15+ visits to the washroom a day (No blood yet)

Not responding to 60 mg of predinsone and losing around 2 pounds a week

Strong enough to work. Weak enough to feel lousy at work.

Developed a bad cough which they though might be a side effect of the Remicade but all lungs are clear so no infection. Took Zantac and cough is 98% better!

In any case, Dr is thinking of doubling the Remicade which I am concerned about, 500 mg once every two months to once a month!

Any thoughts!

My son asked me yesterday can you die of this?

Posted 11/16/2008 12:12 AM (GMT 0)

Well, I wanted to say hello and welcome.  You are sure to find some great information on this site.  Sorry you have to be here though.

As for the Remicade, I was on it.  It stopped working well for me and I developed the bad side effects, so I had to stop taking it.  It really only helped at the very beginning and with each infusion, helped less and less.  Has your doctor talked about Humira at all?  I have had great success with it.  I'm no longer on prednisone at all.  I am basically in remission and feeling so much better than I ever did on Remicade.  I'd be cautious about doubling the Remicade dose myself. 

There will be more people who come along and have more ideas.  Good luck to you in the mean time.  Hope you are feeling better soon. 

Posted 11/16/2008 12:42 AM (GMT 0)
Humera?

Never heard of it and will ask

Is it available in Canada

Posted 11/16/2008 4:33 AM (GMT 0)
i was on remicade for 6 years, maybe more. i felt good after i got it, but i still developed a fistula, which is what it is supposed to prevent/heal. imho, it only masked my symptoms.

i've had double doses before. didnt help me. there are lots of meds out there. i've had great success with a naturopath and dietary changes. i saw results pretty quickly with "alternative" meds. might be something to consider if you're really frustrated and spent.

i hope you find some answers and begin to heal.
Posted 11/16/2008 6:43 AM (GMT 0)
Humira is similar to Remicade but without the mouse protein. Also, you it is way easier to take. It is one shot every other week. You give it to yourself in your own home. I don't know if it is available in Canada. I live in the U.S. I'm sure others will come along from Canada who know.
Posted 11/16/2008 9:26 AM (GMT 0)
Hi and Welcome to Healingwell, i have been on Remicade for 5 years and I am doing fine. In the beginning of this year my Gi doctor up my dosage. I get my infusions every 8 weeks.
Posted 11/16/2008 11:39 AM (GMT 0)
Hi Yes Humira is available in Canada. I was on Rem. and not doing too bad till they doubled my dose then I got a bad cold and pneumonia so went off it but then I have lung problems too. I did not try the Humira yet but my GI was going to put me on it and I am Canadian. lol gail
Posted 11/16/2008 2:34 PM (GMT 0)

Hi

I had a fistula (sticking out of my stomach) before remicade and it did nothing for the fistula! Prednisone in 5 weeks has dried up that sucker and its dry!

Could you recommend those naturopath and dietary changes and alternative meds? Please

CrazyHarry said...
i was on remicade for 6 years, maybe more. i felt good after i got it, but i still developed a fistula, which is what it is supposed to prevent/heal. imho, it only masked my symptoms.

i've had double doses before. didnt help me. there are lots of meds out there. i've had great success with a naturopath and dietary changes. i saw results pretty quickly with "alternative" meds. might be something to consider if you're really frustrated and spent.

i hope you find some answers and begin to heal.

Posted 11/16/2008 4:04 PM (GMT 0)
Hello - I have UC but I have been in the worst flare of my life for the past few weeks and my doctor moved my remicade up two weeks and doubled my dose. Yesterday I started feeling better. Today I feel amazing again. So its working to me. I personally think its best to try each medicine and fully as you can before you give up on it. That way you don't double guess yourself later.
Posted 11/16/2008 4:06 PM (GMT 0)
Also - I have developed a bad cough also but I had an xray and my lungs are clear. Its strange because I have never had coughing issues before and it has been like this for three weeks. I have heard this from others also. That makes me nervous.
Posted 11/16/2008 9:06 PM (GMT 0)
I was on remicade for 2 years, and it just stopped working for me. My doctor said that he didn't want to up my dose because the body can actually build up a tolerance to the drug making it less effective. So I was deemed a remicade failure. I'm not sure if your doctor told you that? He was gonna put me on Humira, but said that since the 2 were similar that it would only have about a 30% chance of working. After that news I opted for surgery. I would be kinda worried about upping the dose only because it does suppress the immune system. But its definitely your choice. Good luck!
Posted 11/16/2008 9:49 PM (GMT 0)
I need to get off the 60 mg of prednison but I dont want surgury

.
Dont want to have a colostomy which will probably happen
Have a terrible scar (hernia) on my stomach 4 inches wide from a wound infection from the last operation and I am sure a surgeon will perforate the bowel when he cuts in!
Posted 11/16/2008 11:32 PM (GMT 0)
MTLGUY40 -

i ended up needing surgery for the fistula as it was going from my colon to my bladder. that surgery removed the bulk of the active disease, but i've had problems since then. it was dietary changes that got me feeling well - the maker's diet and the scd were key.

my naturopath is in san diego, california:
dr. mark stengler
www.lajollawholehealth.com


he changed my probiotic and digestive enzyme and put me on some herbal stuff he made in his office which helped get my bowels in order after a colonoscopy upset my entire GI tract. he was also able to help me with a perianal abscess. i dont know if you can buy any of this stuff yourself, like in a health food store or on the internet cos i've never seen it before. the herbal stuff he makes himself as far as i know. some of the stuff he does buy from manufacturers but it is perhaps one of those things where they only sell to doctors and not the general public. that is not uncommon.

i hope this info helps.
Posted 11/17/2008 12:43 AM (GMT 0)
your pol question is kinda missleading as everyones dose is differant.. its is suppossed to be based on weight say 5mg per kilogram of weight. so a person who weighs 50kg is going to get roughly half that of someone who weighs 100kg. so i would guess that with your 500mg dose that you weigh close to 100kg?
Posted 11/17/2008 8:21 PM (GMT 0)
I weight approximately 210 so yes I guess my question was wrong. On the other hand I continue to lose 1/2 a day with this episode!

Dr. just called and wants me to go get myself admitted to the hospital...should i?

 

Posted 11/17/2008 8:39 PM (GMT 0)
If your doc says get to the hospital, that's exactly what I would do. He must have a reason for it, especially if your disease is not under control.

Posted 11/17/2008 8:52 PM (GMT 0)
I know but right now I feel like a complainer. I am not lying in bed like a rock. Just a bit lathagic and not improving.


I just am going to the washroom 15 times a day
Nights and A.M. are tough between frequency of visits and cramps

I have had 2 surguries but he is just afraid something else is going on. Don't know if I want to wait 3 days in ER for tests etc.
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