Anyone on Remicade and Imuran?

[dgg]

Hi,
I've been suffering from a horseshoe fistula for almost 3 years now and nothing seems to work for it. Had multiple surgeries and have 3 draining setons and have been on remicade at 5 ml every 8 weeks for 2 years now. It seems like the remicade isn't as effective as it used to be and I went to head of GI at a major research center who wants me to be much more aggressive w my treatment now. She wants me on remicade every 4 weeks at 10 ml and to start imuran. My regular GI said he's never had any of his patients on this combination so I'm nervous about this. The plan is to try and close the fistula or at least make it smaller so I can try a plug procedure.
I'm a 36 year old woman and the new doctor prescribing imuran told me that the cancer risk (for Lymphoma) with this 2 drugs together was seen mostly on older men and that in her experience she didn't seem too concerned. I am still nervous. Is anyone on this combo for a fistula? Any advice? Thanks!

 

[PaulsPain]

I have been on this combo since August 2011. I started Azathioprine (Dec 2010) first to see if it would close my fistula, since I viewed Remicade as a little more "risky". I finally decided to give Remicade a try. My rear end feels the best it has in about 7 years. I had the seton pulled in December and it appears the fistula has closed.... At least it isn't bothering me. It took me about 5 infusions before seeing results.

I am a 37 year old male. The thing has me the most nervous about the Remicade/Aza combo is the development Hepatosplenic T-cell Lymphoma(HSTCL) - which is very deadly. This seems to be seen in mostly adolescents and young adults and mostly males.

Here is an FDA "Safety review" on this.
http://www.fda.gov/Drugs/DrugSafety/ucm250913.htm

At some point I may stop the Aza because of this risk, although the risk is low. The main thing is that I feel so good at the moment I am not sure I want to mess with anything right now......

 

[DustyKat]

Hey ddg,

No experience with that combination here but it might be idea to ask in the Remicade forum...

http://www.crohnsforum.com/forumdisplay.php?f=58

Dusty.

 

[shamrock15]

I have been on the combination for a year and a half now, and for the first time in approximately 25 with Crohn's, I may be able to finally use that other "r" word (remission). For me it has worked, unquestionably. I have lost some hair, although it is a toss up whether it is due to aza or rabeprazole. Ask lots of questions, do your research and see if it works for you.

 

[David]

Hi dgg,

I know you wanted more insight. I don't have any to add but am replying to bump your thread in hopes others might have some thoughts to share with you.

 

[Sybil Vane]

I was on Remicade and Imuran for a year when my doctor took me off of the Imuran due to the lymphoma risk. Being on the two after my second surgery when both strictures were gone was the best I've ever felt. I ended up going back on the combination and was bumped up to 10 mg/kg every 6 weeks but not every four. I went to see an IBD specialist before my third resection and he said that the lymphoma risk for folks on both only increases it a very little bit and that a lot of IBD specialists are not taking their patients off of Imuran after a year because the benefits outweigh the risks.

I hope you feel better soon!

 

[David]

I noticed today that Rygon is on Imuran (azathioprine) and Infliximab (Remicade). He should be notified that I'm talking about him and might be able to provide some insight

 

[rygon]

Although ive never had a fistula, I started on imuran 1st then went on to remicade as well. Most people at my hospital are on both as the imuran helps stop the body from rejecting the remicade.

Luckily i can tolerate imuran (others get side effects) and ive not had any problem with these two combinations (also on mezavant as well)

I read about the increase of chance of getting cancer, but I thought the risk was worth taking to have a good quality life now.

PS Cheers David the tagging mod is great

 

[dgg]

Thanks for your comments! I will get my remicade levels checked again 4 weeks after my latest infusion and I'm supposed to get remicade every 4 weeks now so we'll see how things go. My stomach feels a little "off" since starting Imuran but I also started taking Flagyl again at the same time so not sure which is the culprit. Taking a probiotic as well to try and help.

 

[notfullyfathomed]

Hi ddg! I am also Remicade and Imuran. Like rygon, I started Imuran first as a maintenance drug, and then added on Remicade, and I don't have a fistula. I'm also on Pred -- I ended up in the hospital for a few days with an obstruction in early March, so they loaded me up with drugs! So far, so good, though. My doc says that he will take me off of the Imuran once I am feeling better (he said maybe 3 months) because it is mainly helpful for preventing the development of antibodies in when you are first receiving Remicade (I am doing my own little lit review on this, though -- I will post on the remi subforum if I find anything interesting). For me, I was ok with the increased cancer risk of the two drugs combined because of the added benefits the Imuran would give.

It sounds like you have made your decision about the next tx though! Hope it knocks out the fistula asap!!

 

[dgg]

How long on remicade?

Hi Notfullyfathomed,
SOrry to hear about your obstruction and happy you're better now. Just curious... how long have you been on remicade for? It's been exactly 2 years for me now and it seems to work great the first 2 weeks after I get it then my fistula gets bad after that (lots of disgusting issues and discomfort). I wonder of anyone stays on remicade for years and years and if so does the effectiveness go down? Just curious to see you experience since it looks like you've been diagnosed w Crohn's longer than me (just diagnosed on 2009). It's really helpful to have support and to hear about others who are on similar medicine combinations and who suffer. Sometimes I feel like nobody else understands the anguish this disease can cause. I keep reminding myself that when things get bad they'll get better again and to be patient, and thank goodness I have health insurance

 

[flowergirl]

paulspain -- good to hear you finally closed up!! i'm still waiting for mine to close up. just had my 5th infusion a few days ago. i'm not on imuran though.