If your asking if its helping its prob not..right?

[tots]

Ok- right before I started Remicade- my Dr said my Crohns involved the lrg and sml bowel. Last time it was just my sml bowel. He only had me on Entocort. Thats only for the small bowel- maybe why the Entocort wasn't doing the job?

I have now had three Remicade infusions (just so wrong it all goes through as
chemo on my ins bill!) and I am still having trouble. Terrible cramping and diarrhea. I was to discontinue the Entocort the day before my first infusion- he said I could resatart it about the time of my second infusion.

How long do you give the infusions? I am tired of feeling bad- and by bad I mean
its hard to work retail while having pain thats worse than my labor pain!! And my
husband is just sick of the fact I " dont do enough around the house". So his added stress isn't helping either!! God help him if he EVER gets sick!! No sympathy here big guy!!

Do you have any suggestions??

Lauren
:confused2:

 

[Tenacity]

Tots,

Sorry to hear you are still not feeling well after 3 infusions.

What dose of Remicade is he giving you - and how far apart for each infusion?

Also, it sounds to me that you need more help to get you feeling better. Perhaps discuss with your doctor and ask if you should be taking a med like Pentasa. It is in a class of medications called anti-inflammatory agents. It works by stopping the body from producing a certain substance that may cause pain or inflammation.

 

[chrisnsteph1022]

My GI said if it doesn't help after the 3 loading doses, it probably won't help. I saw improvement 3 days after my first infusion. But it never got me all the way to remission. Even with the doubled dose. We just added more stuff to see if we can help it along.

 

[tots]

Stephanie

Do you still take Remicade ? Or is it better to just give
it up?


Lauren

 

[DougUte]

Tots I am on Humira so I don't know what to tell you about Remicade. I was thinking you might want to post this on the Remicade sub forum, which is under the treatment forum here.

 

[kiny]

For whatever reason some people don't respond to infliximab. In UC (some use infliximab for UC now) they see the same thing.

I respond to infliximab, but I know plenty who don't respond at all, like nothing.


"These results suggest that tumour necrosis factor receptor genotypes may be involved in the different responses to infliximab in Japanese patients with Crohn's disease."

others studies don't show this relationship.

Another thing is a study I read that saw that people who responded to inflixmab also responded to antibiotics (macrophage-penetrating types, not Flagyl), while people who didn't respond to infliximab also didn't respond very well to to antibiotics. It had nothing to do with CDAI. It was just one study though.

The more I read the more I wonder if CD is just one disease.

 

[tots]

DougUte-
How long did it take with Humira to see an improvement?
And what type of improvement is reasonable? Pain free?
Diarrhea free? Expand your diet??

Thanks for your response

Lauren

 

[Jennifer]

He only had me on Entocort. Thats only for the small bowel- maybe why the Entocort wasn't doing the job?

Entocort is used for UC as well. It works by reducing inflammation. It doesn't pick and choose where it works. Even worked for my arthritis pain in my joints.

 

[PattyLynn]

Hey Tots,
I started Remicade in Nov 2011. I was told if I didn't see an improvement in 14 weeks then it probably wasn't working. Well, it kind of worked so I am still on it. It healed the fistula but I still have active Crohn's, so it hasn't helped with that yet. Right before my last treatment (June 2012) I had a blood test done to check the levels of Remicade in my blood (or something like that). Turns out my levels were really low so my GI has doubled my dose. I was on 30mg every 8 wks and now I will get 60mg every 8 wks starting on August 16th. Hopefully the increased dose will have a better effect. You can just ask your doc to check you levels. I basically pushed for the test. The squeaky wheel gets the grease......Good luck!

 

[DougUte]

DougUte-
How long did it take with Humira to see an improvement?
And what type of improvement is reasonable? Pain free?
Diarrhea free? Expand your diet??
My
Thanks for your response diarreah

Lauren

My experience with Humira has been good but not perfect. AfteIr I started it, it took about 3 to 4 months for things to really improve. I was pain free from the start because I had surgery first that removed the bad areas. I have had D free periods with help of other meds but my GI thinks they are masking symptoms. I am still pain free, and I am not diet restricted, except a to what I think may cause D. I still am pain free and I do not have blood in my stools.

 

[rygon]

I doubt you would feel great again after 3 infusions, but you should notice some improvements. I didnt feel "right" until after 6infusions, but did notice some difference after the 1st 2 (although the effects were short lived and I was more than ready for my next infusion)

 

[tots]

rgon-
Thanks it gives me hope!
I will make an appt soon to see my dr. I will have alot of questions for him!

Crabby-
My Dr told my Entocort is absorbed in the small bowel. It is not a systemic drug like prednisone therefor has much fewer side affects. You also dont need to tapper off.
I am not saying he's right.... just what he told me. I think I will call the drug company and ask. Thanks for the info



Lauren