HealingWell
Search Close Search
☰

Doc recommends 6mp combined with Remicade. Safe?

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/5/2012 4:09 PM (GMT 0)
I went to my GI doc yesterday and he recommended maybe taking 6mp along with the remicade I am already receiving.  Had blood work done about a month ago to check for Remicade antibodies and surprisingly I don't have any.  Routine blood work also showed positive levels.  Hemoglobin was actually 11.5.  Which is great!  Usually I hover around 8.2.  Been as low as 5.1.   My inflammation marker was high as usual but was a little lower than it normally is.  So according to my lab work I should feel fine.  BUT, I don't.  I actually feel like complete crap.  I'm tired, my body hurts, i have blood in my stool, I have alternating watery diareah with muddy looking stool.  (sorry for the graphic images you now have) lol.  I have abdominal pain with cramping and pain that radiates from my lower back to the lower right side of my abdomen.  I'm going to the bathroom all day long.  The only positive thing is that I am not going overnight.  So, doc recommends 6mp and remicade together but he said there is a slightly higher chance of developing a rare fatal cancer when you combine the two drugs.  What should I do?  Do I just stick it out with the remicade every 6 weeks and deal with the other stuff or do I go on 6mp with the remicade and hopefully do not get the cancer.  I'm scared and confused and don't know what choice to make.  Right now I told him I'd like to just stick with the remicade for now.  Oh, and also my husband and I would like to try for a baby and he said that 6mp was ok if necessary while pregnant.  Idk what to do.  Any thoughts and advice would be greatly appreciated, espcially from those of you that are on the two drugs together.  Thank you :)
Posted 1/5/2012 8:48 PM (GMT 0)
I was on both drugs from late 1998 or early 1999 to 2006 (with only a small break in the 6mp and reintroduction to a lower dose around 2001 because my white count had dropped too low.) I had to stop in 2006 because I developed antibodies to the Remicade.

My approach to this concern, which was also a very real concern for me, is that it was going to help make me healthy now. There may be risks/side effects down the road, but how do I make my way down the road if I can't even get to the road today?

Also, a slightly higher chance than rare is still rare.
Posted 1/5/2012 9:07 PM (GMT 0)
Been on both for about 8 months now. It was an easy decision for me as the possible quality of life increase was MUCH higher than the risk (which seems to be very slight, at least from my reading).

On the other hand, if it's going to make you worry all the time that's something else to consider.
Posted 1/5/2012 10:30 PM (GMT 0)
I am at a very similar spot to you. I am currently on Humira and my doctor wants to add Methotrexate injections to this. I have previously had a reaction to 6mp and Imuran so MTX is my only option left from that category.

It freaks me out as well but I think both fellow Crohnies above said it best. I am looking at my current quality of life and what I need to do for me now. We are also hoping to get pregnant in the next year or two so MTX was even a harder decision because you can't be on it while pregnant. But with my symptoms as they are now it isn't healthy for me to get pregnant anyways. So I decided I need to do what I can to get myself healthy now and once I have been symptom free and healthy for awhile I will address my other concerns.

Good luck. I know these decisions are hard.
Posted 1/5/2012 11:01 PM (GMT 0)
I've been on 6MP since July, 2008 and added Remicade in October, 2008. I've not had any significant issues since being on it, except some hair loss (which is why I now shave my head). I get some moderate fatigue for a day or two about 8-10 days after my Remicade infusion. But these things are definitely worth it because I have not had any flares since 2008. Knock on wood!
Posted 1/6/2012 3:17 PM (GMT 0)
Well here is the thing.  I've been on azathioprine and allopurinol together b/c i've been on 6mp alone and it started to effect my liver.  So i was taken off.  The second time I was on it together so that I could stay at a lower dose.  Once the docs start pushing the dosage higher I can't handle it. Last year I ended up dropping my rbc to 5.1 and needed to be admitted into the hospital for a blood transfusion.  Then my wbc dropped and that's when it was decided to take me off the drug.  I can't get to 100 mg.  Once i get there problems arise.  So the doc said we can't get you to a theraputic level.  So it terrifies me now to think that I might have to go through this again.   As far as being on the drugs together I am scared.  A doctor that I also see in manhatten wants me to consider tysabri.  Another drug I'm terrified of.  Idk.  Why must I keep making these hard decisions?  And for those of you that are on the drugs together, do you feel better?  Do you notice a difference?  Does the doc keep an eye on your blood levels?   Thank you :)
Posted 1/6/2012 5:55 PM (GMT 0)
Ooo, didn't know you had been on those 2 before. Personally I wouldn't be up for trying them again. I wasn't able to get to theraputic levels on either and I told my current doc I won't try again. But that is just me. That is why we are considering Methotrexate with my Humira.

Tysabri is scary to me too. What about trying something like Cimzia before Tysabri. I feel like Tysabri is the scariest of all the biologics. Did that doc say why he wanted to jump right to Tysabri? Would your insurance even cover Tysabri without trying Humira or Cimzia first?

My dad has a friend who is on Humira and Methotrexate together and he is doing really well. He had been having a several year flare up, went on Humira and did better but was still having bleeding. They added the MTX and he is doing great, symptom free. He has been on both for about 18 mos.
Posted 1/7/2012 4:21 AM (GMT 0)
I have been on cimzia, humira, and methotrexate also.  While I was on humira my lips swelled so i was taken off of it and the cimzia never helped so that too was stopped.  As far as the methotrexate goes, I loathe it.  It made me so sick.  I would literally get my injection at my dr.'s office and for 3 days I couldn't move.  I was neaseated and tired.  Sick to my stomach.  I would also get this raging headache.  The horrible side effects far more outweighed the benefits which were minimal at best.  Never again will I take that drug.  As far as the Tysabri goes, I am terrified b/c of the brain infection that it could cause.  The doc in Manhatten says it's extremely rare and there is actually only 1 reported case of that brain infection in a patient receiving it for Crohn's disease.  All the others were people who were taking it for MS.  I don't care who was taking and what they were taking it for they still got it and I don't want to be one of them.  This is my second time on Remicade and thankfully I dont have any antibodies to the drug.  I just need something else b/c I honestly still do not feel well.  I've had surgery in 08 and had a temp ileostomy which was reversed 3 months later and it was decided by the surgeon that i shouldn't take any drugs.  He told me I would be crohn's free for 15 years.  Yea ok, 6 months later I was in a horrible flare and back on meds.  I wish I would have gone on maintence drugs from jump.  Ps, here I am 3 years later with a horrible stricture, biologics don't work and I feel like crap.  I just need some answers.  Thank you for listening to me rant :P
Posted 5/19/2013 1:01 AM (GMT 0)
Thanks for posting on this thread.  I can't believe it's been over a year since I posted this.  Since this post I have had a small bowel resection.  I had the surgery in May of 2012.  I was having horrible small bowel obstructions due to scar tissue and active inflammation.  Horse Crohnie, I already have an 8 year old son whose bowel movements are excellent and no problems thank goodness.  I am also currently pregnant with twin boys.  According to all research, the chance of passing this disease along to your children is extrememly low.  Especially if only one parent has it.  As far as the meds go, I never started taking the 6mp together with the remicade.  I am still currently on a remicade regimen every 6 weeks.  I am 27 weeks pregnant and I've so far felt pretty good as far as the crohn's.  I don't really have a fear of passing this disease onto my children.  I'm sure there are plenty of children out there that need love and homes but our personal preference was to have our own biological children.
Posted 5/21/2013 5:36 AM (GMT 0)
I am so happy to hear that you are pregnant.  I disagree with the earlier post that you could pass Crohn's to your children.  I am a RN with Crohn's and am mortified by the earlier response you received to adopt, rather than pass the so called gene down to your children.  We should all support people with Crohn's who want to and can get pregnant, rather than preach our pro life stance.  I carried three children and thankfully they are healthy.  I applaud  your perseverance and drive. 

 

Posted 5/21/2013 5:53 AM (GMT 0)
Also Bella, I would love to stay in touch with you and will support you every step of the way.  Horse Crohnie , I would love to hear from you.  I think you are misinformed

.

✚ New Topic ✚ Reply