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6MP friend or foe? holistic options out there that work?

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Crohn's Disease
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Posted 1/19/2013 5:47 AM (GMT 0)

My 9 year old daughter dx w/CD Nov. 2012 has been on Pred. since 12/1/12 and doc wants to wean her off Pred. as we start 6MP. After reading RX cautions, I'm scared to death to start her on this med. "This med may increase your risk of dev. tumor or other cancer. A rare type of cancer called HSTCL has been reported in patients using 6MP. These cases have been fatal, most occurred in teens or young adults and most patients were using this med. to treat CD or UC! The safely and effectiveness of using 6MP to treat bowel inflammation has not been confirmed." Now what would you do? Would you give your baby this drug knowing up front what it's been connected to?

Also, she has been given no dietary restrictions besides no nuts, popcorn, lg. seeds (watermelon, sunflower). is this normal to not have dietary restrictions?  Has anyone tried and had success w/holistic treatment and not these scary drugs w/nasty cautionary statements? Help us please!

Posted 1/19/2013 7:00 AM (GMT 0)
Some of us do have some success in changing our diet. Some people find taking gluten or/and lactose helps. There are also some specialized diets recommended in the info section at the top couple post of the page. I know 6mp sounds really scary but long term prednisone use can be just as scary. I can't imagine having to make these decisions for a child. I had a hard enough time making them for myself. Where is your child's disease most active? Have you tried any probiotics?
Posted 1/19/2013 7:06 AM (GMT 0)
Yes she is on probiotics, folic acid, pred,D3, multi-vit complete w/iron, iron supp, omega-3. It's most active in her Lg. intestines. 
Posted 1/19/2013 7:20 AM (GMT 0)
Then rectal meds may be something that you might want to discuss with your doctor. I have UC so I cannot say for sure that it would work but if the Crohn's is mostly active in the large intestine I would think it would work the same. You may want to pop over to the UC board. We have several moms with young kids there. Also there are a lot of people who are on rectal meds that see a lot of relief from them. I know these meds have scary side effects maybe the moms on the UC board can share their stories. I know several of them had some pretty sick kids and decisions had to be made pretty fast. I hope you find peace with the decision you make.
Posted 1/19/2013 10:35 AM (GMT 0)
6mp and it's sister drug Imuran, have been around for quite some time. They can be very effective maintanance medications and have a proven track record.

The warnings are scary, and I felt the same way before my Daughter started this.

Most of the concerns for these meds are at considrably higher doses. Like when used for organ transplants.

I'm not saying that makes them harmless, but something you should consider.  

 

Posted 1/19/2013 2:18 PM (GMT 0)
THank you, Teddtlove, for your kind words and information. I will talk to my doc about rectal meds as well. Also, thanks to 73monte for your "grounding" advice. Has 6MP worked for your daughter?
Posted 1/19/2013 4:57 PM (GMT 0)
Your GI doc will follow with ongoing blood work, so if her levels are being adversely affected, the doc will stop the 6MP....so I think that may lower her risk even more, but I'm not a doc, so I don't know for sure. There is a blood test, TMPT that she can take in advance, that may help to indicate if her body has the enzymes to bread down the drug. For me, my advance blood test looked fine, but I still got elevated liver enzymes shortly after starting it. So we had to discontinue the 6MP for me, but the good news is that within a couple of months of stopping, my levels returned to normal. 6MP has put many people in remission, and if she is having adverse effects, she can stop it. I hope this helps, and I'm so sorry your little girl has to go through all of this!!
Posted 1/19/2013 9:27 PM (GMT 0)
I am currently on 6mp after having been on no drugs for about 2 years. I was on 6mp before and it put me into remission, so after having a flare this past summer, I am back on it recently to hopefully work again like it did before.

I have to say, I'm super paranoid about all of the side effects for it as well, but knowing that it has worked for me and is cheaper than the alternatives, I am less worried this go around. If you look at the other drugs: Prednisone, Humira, Cimzia, etc., you'll find that their side effects are all scary as well. My GI dr also said that having Crohn's makes you at a higher risk for colon cancer, so it's best to be on some sort of maintenance medication.

I honestly don't know which is worse, vomiting/diarrhea/pain every day with Crohn's or the side effects from the meds that treat it!
As for diet, I have tried every holistic path I can find. I've seen dr's, nutritionists, reiki masters, chiropractors, and even a witch dr of sorts. I exercise at least 4 days a week, even when my stomach hurts and drink a lot of water. Inflammation is the main cause, so look up diets/supplements that heal inflammation in the body. There are a lot of conflicting ideas, so keep a food journal and notice how she's feeling, hopefully you can find a correlation.

When I'm feeling better, a high protein diet works best for me. However, right now I'm in a flare and NOTHING helps.
Good luck and keep us posted!! Sounds like you're a good mom with all the research you're already doing! :)
Posted 1/19/2013 9:30 PM (GMT 0)
I forgot to add that *knock on wood* I haven't noticed any major side effects on 6mp. I originally got off of it because I kept having "panic attacks" on it that I never had before, but was feeling better so was able to get off.

The only thing I hate about it is that my husband and I cannot try for a baby while I'm on it, but with a 9 year old, you don't need to worry about that. :)
Posted 1/19/2013 9:42 PM (GMT 0)
My daughter has a working diagnoses of crohns . . . .no crohn's meds yet; but right now we are on a ton of pain killers. That too is scary - and like you I am looking for some alternative therapies. Im new here so not sure of all the rules but we did find a doc were going to see this coming week with the promise of something hopeful - - -that is natural. But will see.
My daughter is 15 and has been seeing a pediatric GI in the ATL area - and he has suspected all along that were dealing crohn's but so far every procedure and test turns up nothing.
Posted 1/19/2013 10:26 PM (GMT 0)
kt'smomma,

Yes, Imuran has worked for my Daughter for the last 3 years, but unfortunately, she's been showing signs of disease activity in recent months. Our GI is now recommending Remicade or Humira. Now I'm in that same boat as you are, worrying about new meds.

Just wanted to add, Imuran and 6mp have to be taken at a theraputic dose to be optimally effective. You have to make sure that she gets a metabolite test done. It simply means that everyones optimal dose is different. One person will need 50mgs, while another will need 200mgs.

 

Posted 1/21/2013 4:42 PM (GMT 0)
I went to Mayo in FL after I was first diagnosed. GI there said I should try Imuran, so with the approval of my local GI I started it. (Pentasa and Entocort had already been tried with no results)

I was on it for 2-3 weeks I think (2006 seems like a long time ago!) and woke up one day with severe pain. After getting to the ER, we found out I had Pancreatitis. I was in the hospital for 2 weeks on pain meds and a TPN drip. Hands down that was the worst pain I've ever felt, and the days and days without eating real food almost drove me crazy! TPN drip may give you everything you need, but it doesn't help the cravings for food.

The nurse there told me pancreatitis pain is said to be comparable, if not worse, than childbirth. Needless to say, I'll never take Imuran/6mp again! I'm jealous of those who find it helpful!
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