6MP + Remicade

[cassimw]

My newly diagnosed 14 year old daughter just had her 2nd dose of Remicade today. Her GI is really pushing to add 6MP for about 6 months for two reasons:

1. She wants to take an aggressive course toward healing her fistula. Since it takes a few months for 6MP to get into your system, she doesn't want to wait.

2. Starting 6MP now will increase the odds that she won't develop immunity toward Remicade.

We saw a doctor at John's Hopkins for a second opinion. That doctor said she didn't think it was necessary to start 6MP yet. She thought it made sense to wait until after a few (4-5?) doses of Remicade to see if that alone was working and also said that we could test for immunity later, and if she was developing antibodies, we could add the 6MP then. When I asked if that would be too late, she said no.

Right now we are leaning toward adding the 6MP because if adding a med can help us avoid surgery and prevent immunity to Remicade, it sounds like we should try it.

As I understand it, the drawbacks are:

1. There is a link between the combo and a rare form of cancer (we are obviously concerned about this, but from what we have read, we think the odds seem very low and the possible benefits outweigh this tiny risk)

2. Two drugs lowering our daughter's immune system (but I'm understanding that kids are more likely to get colds, etc. - but this doesn't seem to be a big concern - am I wrong?)

3. Chance of pancreatitis (which is reversible, as I understand it).

4. General kinds of side effects: headache, fatigue, nausea

5. Hair thinning (this is a bit troublesome since our daughter already has thin hair ;-) Anyone experience this? How bad was it?

I posted a similar thread not long ago, but I was asking about a more general combo. I really want to know about people who have experienced this combo. It's really difficult when you have two doctors with different opinions!

Any thoughts are appreciated!

 

[Maya142]

Many GI's are now adding an immunomodulator when starting anti-TNFs. This, as you know, is to prevent antibodies.

When my daughters first started biologics, this was not really known. We put them on just the anti-TNF and nothing else. They have each been through a number of biologics in the many years they've been on them (6 years for one kiddo, 5 for the other). This is because the biologics just stopped working. Now they are both on biologics with immunomodulators because we worry about running out of drugs.

That said, only my younger daughter has had an antibody test (weren't available before) and she didn't have any antibodies to Remicade. She has even been on Remicade three separate times (various combos of immunomodulators - MTX, Imuran, Sulfasalazine), and it stopped working each of those times.

So the science is still sort of fuzzy.

Given that she has a fistula though, I'd want to hit the Crohn's with everything you've got, including an immunodulator.

1. There is a tiny, tiny risk for that rare form of cancer - I think it is 6 in 10,000.

2. My kiddos have gotten through middle school and high school and now college without an increase in colds/infections. It's opportunistic infections you have to worry about with anti-TNFs, and those are very rare. My girls get about one cold a year, which is a lot better than many of their classmates who aren't on any meds!

4. My daughter was on Imuran and Remicade (and it was high dose Remi - 20mg/kg every 4 weeks). She had minor side effects with Imuran: nausea when we increased the dose, but it passed within a week. Tiredness the day after Remicade infusions (but many kids feel just fine after Remi). Side effects really depend, but I can tell you that we've had basically none with biologics and very few with Imuran. NO increase in infections, even with the high dose Remicade.

5. No hair thinning with Imuran for us. My daughter was very worried about it (she's a teenager!) but nothing happened.

Good luck!!

 

[Keepsmiling]

My now 9 year old daughter has been on the 6mp/Remicade combo for a little over 1 year. We initially expressed apprehension for using the 6mp combo as well....we were also told by our GI that he would like us to give a low dose of 6mp a try for the first 6 months to give her the best shot of responding to the Remicade and then he would let us decide on whether to continue. Her response was amazing.....we are now afraid to change anything because we don't want to "fix what's not broken". As far as increased risk for cancer, we were told her risk increases to 4 chances out of 10,000. We see the head of the IBD clinic and he has probably been practicing 20+ years. He has not had a case of cancer in a female in this situation during his career.

She takes the 6mp right before bed so as to avoid nausea and we've had no issues. As far as thinning hair, we have not experienced it related to the 6 mp/Remicade. In the past, we've used a shampoo with biotin to help thicken her hair. As far as compromising her immune system, she's the healthiest kid I know - probably because she is vigilant about hand washing and hand sanitizer Knock on wood, she has not been sick in the past year.

Hoping your girl is feeling better soon no matter what option you choose

 

[crohnsinct]

Ditto to what the others said about antibodies and increasing the length of time you get to use Remicade. Personally, I wouldn't want to risk antibody formation as if it happens quickly and goes high you are sunk. That said, my daughter used Remicade for a year before we added Methotrexate (just another immunomodulator). She didn't form antibodies in that year. Also, on the two immune suppressing drugs is the healthiest person in the house.

The one thing I will say is that there is a lot of research and thought in the adult GI community that 6 months of Imuran or Methotrexate is enough to stop antibody formation and that after that time you can come off them. No so sure the ped docs are willing to try. I am with the previous poster...if it ain't broke and plan to keep my daughter on Mtx for as long as she is on Remicade!

Seems you have an excellent handle on the ins and outs of what is being presented to you. Trust your gut!

 

[Madhu]

My husband has been on 6MP + Remicade for 4 months now. We were also a bit skeptical at first but my GI insisted since it would help prevent antibodies. The first 2 months, he had a lot of hair fall. His GI wanted to stop 6MP but my husband wanted to be on it considering the good effects. So after 2 months the hair loss stopped completely, and recently his bloodwork showed no antibodies. This combo totally helped his 2 fistulae and I should say we got our life back. Knock on wood!

Also, his GI said adding 6MP later after antibodies are present will not work.

I wish you well

 

[cassimw]

You guys are really making me feel better about this decision, thanks! I think we're going to go for it. I left a message for the doctor.