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Help.. 6 MP... Entyvio

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Ulcerative Colitis
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Posted 11/23/2015 8:25 PM (GMT 0)
Hi.. I have had my very severe flare since June. I am now on weekly Humira, Prednisone,30 mg, and Lialda. I got a second opinion today from a very good Dr. affiliated with Mt. Sinai Hospital in NY. He said the same thing my Dr. Said.. 6MP, which I am fearful of- people say they lose most of their hair, and get serious infections., and or Entyvio. The Dr. said since I am building antibodies to Humira, it won't work... And Simponi, and Cimzia, the same thing would eventually happen-
I don't want to try 6mp- has anybody been on it? Since it is low dose chemotherapy .. People say they have bad reactions to it.
Entyvio is supposed to be targeted specifically to the gut.
Prednisone seems to be helping with the bleeding.... Giving me a ravenous appetite... Gained seven pounds in a week. can't stay on that indefinitely...
Please get back to me..
Thanks
Posted 11/23/2015 8:42 PM (GMT 0)
I took 6mp without any crazy side effects. I did have to get regular blood work for low WBC but I didn't get any infections or colds while on it that I remember. We were able to get the WBC thing worked out over time and I was able to go 3 or 6 months between blood draws while it worked for me.

I did however get a terrible infection while on remicade and MTX. I mean, really, all these meds are some potential of serious infection. Read the prescribing information. I didn't look that closely at Entyvio's but i wouldn't be surprised if there is something in there about the unlikely chance to develop a terrible infection. It is in remicade's packet. I got the infection I guess. It's a very small risk but it can be a deadly one. I didn't lose hair with 6mp either. It was okay for me.
Posted 11/23/2015 8:51 PM (GMT 0)
6mp and humira have essentially the same side effects and risks, so I do not understand why you would fear one more than the other. All uc medications have a hairloss side effect, including the mild anti-inflammatory medications (asacol hd, lialda, etc.). You need to be careful about reading online about immunomodulators (6mp) as it's used at much, much higher doses for other diseases which greatly increase the odds of side effects when used at high doses. Uc doses are actually quite low.

If you've developed antibodies for one anti-tnf biologic (in this case humira) there is no guarantee that you'll develop antibodies to another (simponi, remicade, or cimzia).

I would recommend starting an immunomodulator (6mp or Imuran) before starting another anti-tnf medication as it decreases the odds that you will develop antibodies to another biologic. If your immune system is suppressed, it is less likely to build antibodies.

Entvyio is an option as well.
Posted 11/23/2015 9:11 PM (GMT 0)
Hair loss is experienced by 1 percent of patients on 6mp at ulcerative colitis doses. From a ten-year single-center experience with 6-mercaptopurine in the treatment of inflammatory bowel disease. www.ncbi.nlm.nih.gov/pubmed/15599205
Posted 11/23/2015 9:11 PM (GMT 0)
Thanks for all of your replies.... What a depressing disease... They can't find a cure for it because they don't know what causes it.. So many people have to suffer .. It isn't fair. Either take these horrible drugs.. Or have your colon removed .. Which is such a life changing event...
I guess I will start therapy , because I am having a very hard time accepting this whole thing. When I was diagnosed 13 years ago.. Had Ulcerative proctitus.. Now left sided UC up to my spleen. Sometimes I pray that I pass away in my sleep, so my problems would be over!!!
Posted 11/24/2015 6:43 PM (GMT 0)
My husband has taken 6 mp. He developed liver issues at 50 mg., so it was reduced to 25mg with allopurinol added to the drug regime. Otherwise never had any side effects, though we doubt it helped at all either. One thought is that taking it while on biologics decreases the chance of developing antibodies to the biologics. It didn't make a difference for us.
Posted 11/26/2015 11:57 PM (GMT 0)
I've been on 6mp about two months. It's really helped so far. I think it's put me in remission. No side effects so far.
Posted 11/27/2015 7:02 AM (GMT 0)
I was on 6mp for six weeks & couldn't tolerate it. Had high fevers even at lowest doses. Then I got meningitis. Hospitalized. So simply stopped it.

The literature says to use an immunomodulator like 6mp or Mtx with the biologics - it's supposed to make them more effective and reduce formation of antibodies. Since I can't do either, I just do biologic. After remicade, we learned I can't tolerate anti-TNFs so I moved on to Entyvio.

I don't worry about weight gain on Pred, which I've had several times. Vanity for me seems to have taken a back seat to primary objective of reducing suffering while UC is flaring. So I summon my courage and take the leap to the next drug. Always feels like there are no great choices but at least there are some options. I ask a lot of questions like you are doing, & then I decide - and hope for the best. That said, it's an endurance test, each time there's a disappointment, and I have to regroup to move on to what's next. Once I do, no second guessing. Have to be hopeful.
Wishing you well!
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