Re: Remicade and SCD

[Guest guest]

bc, I'm so sorry you've suffered so long with CD but I don't have answers to your questions. I don't think a medication like Remicade should be stopped without informing your doctor. Have you noticed improvement in the second year after adding SCD? Have you kept a log of the changes in your test results and feelings since starting SCD? Maybe this information could help you decide how much of your healing is from Remicade and how much is from SCD. Does Remicade actually HEAL the intestine, our just relieve symptoms? It seems to me if your colonoscopy shows you are healed and you went off the meds and kept the diet, you should not get sick again, that's just my logic, no experience or training. I'm sure someone here has some answers for you. Wishing you the best. When I have a decision like that to make I use my gut feelings, even though it's destroyed by Crohn's it never fails me in that

way.

Ann,

Living in Italy

Undiagnosed Crohn's since 1977 Diagnosed 15 years

Sacroiliitis 25 years

Rheumatoid arthritis 25 years

Pyoderma Gangronosum 2 years

SCD since July, 2008

Meds: Tapering Prednisone for PG

To: BTVC-SCD Sent: Tuesday, January 13, 2009 11:23:11 PMSubject: Remicade and SCD

I have suffered from Crohn's disease for nearly 50 years (I am 62). Won't bore you with the grizzly details but they include a perforationand 4 bowel resections. I have been on Remicade for 2 years and SCDfor 1 year. I feel better than I have ever felt--well, for 50 yearsanyway! I have very few side effects from the Remicade (joint pain),but I would like to try it on my own without Remicade. Has anyonebeen on Remicade this long and then quit? Can you just quit coldturkey? I hate to mention it to the doctor after we finally foundsomething that works, but I won't know if the diet alone would workunless I try it. If you stop Remicade, can you go back on it? Thankyou so much!

[Guest guest]

You definitely need to speak with your doctor about this. Not that I

would have done things differently. But I wish I new that the

Remicade would potentially not work as well before so my doctor and I

could have had a contigiency plan in place in case that happened.

I was diagnosed with Crohn's disease 21 years ago. Nothing worked to

keep me healthy for longer than 1 year. Finally, after a flare in

2001 my doctor put me on Remicade. For almost 5 years I got infusions

every 8 weeks. It worked great. It was the first time I had lasted

that long between flares. However, when I became pregnant in 2005, I

stopped my infusions. I had no problems during my pregnancy, but

starting 6 weeks after my daughter was born, my Crohn's started to

flare. My doctor put me back on Remicade, plus he put me on the

steriod Entocort (in addition to my other meds). It never worked as

well. After a year or so, they decided to try and push the infusions

to 6 weeks, hoping that would work. It didn't. I never had a

reaction before to the Remicade, but in January 2008 I got hit with 4

infections and then Bell's Palsy within 6 weeks of each other because

the Remicade compromised my immune system so much. I was never able

to get infusions again. My doctor never told me that if I stopped and

start remicade that it might not work as well. This fact came up when

I had the problems last January. I was also told at that time (and I

hope I phrase this correctly), that how remicade is made (it is

completely synthetic, compared to a medicine that has some

human/animal antibodies in it) leads some people to develop an

immunity to the medication if they stop and start the medicine. And

by stopping I was told for a period of greater than 12 weeks.

On the bright side for me, after going through all of that is when I

started SCD. Almost a year later and I feel great and am doing better

than I was while on Remicade. And besides stopping the Remicade, I

also was able to stop the entocort.

Good Luck.

Lynn

>

> I have suffered from Crohn's disease for nearly 50 years (I am 62).

> Won't bore you with the grizzly details but they include a

perforation

> and 4 bowel resections. I have been on Remicade for 2 years and SCD

> for 1 year. I feel better than I have ever felt--well, for 50 years

> anyway! I have very few side effects from the Remicade (joint pain),

> but I would like to try it on my own without Remicade. Has anyone

> been on Remicade this long and then quit? Can you just quit cold

> turkey? I hate to mention it to the doctor after we finally found

> something that works, but I won't know if the diet alone would work

> unless I try it. If you stop Remicade, can you go back on it? Thank

> you so much!

>