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6MP - Long Term??

Hi all! So relieved there is forum that helps people like us. I absolutely love this site.

My issue is this: I am in the middle of a flare up and my GI doc wants to put me on 6MP. He says that if he puts me on it, he’ll keep me on it indefinitely. Those words ring caution in my ear. Are there any of my forum buddies taking this drub “indefinitely” and if so, how is it working for you thus far?

I have been having flare ups here and there but they had been short lived after I had surgery. I had a shoe string for intestines – about two feet worth taken out. There is activity and inflammation at the surgery site (marvelous!) now. I thought I’d at least be free of Crohn’s symptoms after my surgery for a few years. That’s what I was told and had read… gerr. My mother died a little over a month ago (long story there. I had little faith before in hospitals but after her death – not much now) and I believe the stress from the loss of her threw me out of remission. I didn’t realize that my body would react that way – duh for not thinking that it would but geeez. I’m afraid of the drug re the side effects. Any information/experience with 6MP that you can pass on to me would be greatly appreciated!

In the meantime, I’ll be dreaming of eating something crunchy. I’d kill for a bite of fresh veggies or fruit! lol
 
Hi Leeann and welcome!
6 MP was the reason I joined this forum (and am very glad I did.) I have had Crohns since 1999 and can't even remember the last time I was in remission. Currently on 8 Pentasa (500 mg) day and doc put me on 6 MP for 7 months. 3 months into it I got bronchial pneumonia but had been traveling so didn't think much of it. I can honestly say that the 6 MP wasn't making a positive difference in my life and my doc told me "It takes time." 4 months later, I woke up, had difficulty breathing and had another bout of bronchial pneumonia. Although the doc had been checking my blood levels aggressively, this time there was a noticeable drop in WBC and my liver count had been compromised. I wanted OFF the 6-MP and the doc agreed whole-heartedly that it was compromising an already compromised immune system.
I know that many people have done very well on 6-MP but never again for me. Since I will be going away for vacation, the doc has me only on the Pentasa and upon my return, he wants to me to come for a consult and "bring a family member..." My guess is that he will suggest Humira.
Keep checking the forum. There are many pros/cons about 6-MP. It wasn't for me, but if it is making you feel better and you aren't having any adverse reactions, stick to it. Make sure, however, that you get your blood checked on a regular basis. This drug does affect the liver. Also, do not drink alcohol while on it and drink lots and lots of water. Good luck and keep me posted! Jan
 
I was told that drinking alcohol in moderation is okay while on 6MP. I have an occasional glass of wine and my labs have come back perfect. I do also drink a lot of water. I guess the key word is "moderation".

I'm on 6MP "indefinitely" and haven't really had any issues with it. I had some side effects (headache, nausea, fatigue) when I started taking it but they went away as my body adjusted to the medication. I certainly don't want to be on it forever but until something else comes along I'll continue to take it.
 
I was on 6MP for a little over two years. I had to stop because it was messing with my liver enzymes too much, and started making me feel quite sick; to the point were it was difficult to tell if I was having trouble with my Crohn's, or if my liver was just screaming for a break.
 
I've been on 6MP and Remicade for 9 months, and am on both of them indefinitely. I've felt great so far, but everyone's different. 6MP works by suppressing your immune system, so you will be slightly more prone to infection, and it can also cause liver damage and bone marrow suppression. BUT you will be monitored with blood tests, so they can be caught early on. I started on 100mg 6MP, and my liver enzymes got elevated. They lowered my dose to 50mg and all went back to normal.

So there are some risks, as with any medication, but the risks are very low and a lot of people feel great on 6MP! Good luck, I hope you feel better soon!
 
I was on Imuran for years--when I was first diagnosed in 2001 I was given a huge dose of Remicade and it put me into remission (this was before they did regular doses of Remicade) I was then on Imuran for a few years as a maintenance drug. It kept me pretty well until I started flaring again--I was back in school and planning a wedding, with twin toddlers at home at the time...
They put me on a higher dose of Imuran for a while and then moved onto Humira when it wasn't cutting it anymore. I did both drugs for a while, until I kept getting sick over and over with infections, they dropped the Imuran and kept the Humira. It does a pretty good job I think, as long as I try to keep my stress levels low (ha ha) and eat right.
 
I am on 6mp and remicade indefinitely. I have been on remicade for almost 4 yrs and started 6mp about 6 months ago. I had a few side effects the first week with the 6mp but then I changed when I took them and everything has been good since.
 
Thank you so much for the input!

My doc called the other day and said not only did he want me on 6MP, but he wanted me on either Remicade or Humaria as well.

I’ve posed another question on another thread, but have not gotten a response. So I'll pose the question to y'all.

I'm trying to determine which biologic to choose. I'd like to know what you've experienced with any of the below biologics.

I was on Remicade back in 2004, but may have developed a reaction because of it, although, it was never determined if in fact Remicade was responsible. I had itchy spells like crazy to the point of tears and rubbing my body raw (after my 2nd dose)anyone have that?!. The doc said he's never had anyone have that kind of a reaction (story of my life), but wanted me off of it just the same. Anyway, I thought that I wouldn't be able to take Remicade again once you go off, I may have thought wrong according to my doc. I thought Humira would be the better choice as it's made with a human protein, as Remicade is made with mouse protein and your body would reject it more(?). Any thoughts?

Also, I've just received an info packet about Cimzia - it's the same biologic family, but seems VERY expensive. I'm trying to determine what's so different about this new biologic other than the cost I would assume. Anyone??

I told my doctor that I am still researching and considering his suggestion to try 6MP, etc., though I am concerned about the side effects, but have learned there has been great success in treating Crohn’s symptoms with 6MP and biologics, and no doubt that has been his experience with his patience, however, I wasn't so compelled to jump in because he "told" me to. I told him that my goal is to be as informed as possible before I agree to take any new medication that has such potential risk.

Suprisingly, he was delighted that I was taking it so serious - duh... lol

Any of your vast knowlege /suggestions would be appreciated!
 
It's my understanding that all of the biologics are expensive. I'm assuming the cost of Cimzia is due in part to it being new. It costs my insurance $1700 a month, I pay $22. The reason I chose Cimzia over Humira was because injections once a month sounded A LOT better than twice a month.

I went on the 6MP after the Cimzia started to fail. It really seems to be working!
 
I.m on 6MP currently and I get to feelling sick due to side effects of it about once a week or so. My whole deal with it is that I.ve been on it for 5 months now 3 at 50 and another 2 at 100mg and I still am having problems with flaring. My GI is being so slow about moving it up and waiting for it to kick in. It.s driving me nuts!
 
I took 6MP for close to 10 years. I only stopped because it stopped working. I never had any real side effects from it that I could tell. It got me through my late teens and college when I was eating and drinking lots of things that I shouldn't have been.

So while it worked it was great. I hope it works as well for you as it did for me.
 

Jennifer

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I've taken 6MP for over 10 years (currently 50mg). Its a maintenance drug. I've never really had any problems with it. I have blood work done monthly to make sure that it isn't affecting any of my other organs. Anyone on it has to have regular blood work done. Its a must. I hope it works out for you! :D
 
I go in next Thursday. I'll be prescribed the 6MP and either Remicade or Humira. I think I will ask the doc which he thinks is best, but I'm leaning toward Humira only because more people seem to have better success as far as not rejecting it. I don't like having to get shots. Would almost rather get the I.V.s. Anyway, thanks for your input. I so appreciate this forum and all of you of course!
 
I'm happy to see lots of positive feedback for 6MP. I'm glad not everyone suffered horrendously the way I did thanks to this lovely drug.

After I could no longer be on prednisone and asacol wasn't doing the trick, my doctor put me on 6mp and it worked for me for over a year. After my year of 6MP i was unfortunately diagnosed with stage 3 Hodgkin's Lymphoma (one of the many lovely side effects of 6MP listed on the label of the prescription bottle, that your doctor doesn't exactly point out.)

I had to ungo 6 months of chemotherapy which, I have to say, is the best med I've ever been on for my Crohn's symptoms. However, I'd rather suffer from the worst Crohn's symptoms than be told that I had stage three cancer ever again. You think Crohn's is your biggest problem and then you get slapped in the face with CANCER. Crohn's looks like a walk in the park.

My advice to you is definitely try the 6MP (seeing as how there is positive feedback on here from people who have been on it for years and years.) However, I would definitely stay on top of various side effects once you are on 6MP. Know your body and know what is normal. Swollen glands and extreme fatigue are not normal. Also, I would bring up the fact that Lymphoma is a side effect of the drug to your doctor.

Since I have been in remission from the cancer for four years now I have been on entocort since last september and have had great results with minimal side effects!

Best of luck!
 
I'm happy to see lots of positive feedback for 6MP. I'm glad not everyone suffered horrendously the way I did thanks to this lovely drug.

After I could no longer be on prednisone and asacol wasn't doing the trick, my doctor put me on 6mp and it worked for me for over a year. After my year of 6MP i was unfortunately diagnosed with stage 3 Hodgkin's Lymphoma (one of the many lovely side effects of 6MP listed on the label of the prescription bottle, that your doctor doesn't exactly point out.)

I had to ungo 6 months of chemotherapy which, I have to say, is the best med I've ever been on for my Crohn's symptoms. However, I'd rather suffer from the worst Crohn's symptoms than be told that I had stage three cancer ever again. You think Crohn's is your biggest problem and then you get slapped in the face with CANCER. Crohn's looks like a walk in the park.

My advice to you is definitely try the 6MP (seeing as how there is positive feedback on here from people who have been on it for years and years.) However, I would definitely stay on top of various side effects once you are on 6MP. Know your body and know what is normal. Swollen glands and extreme fatigue are not normal. Also, I would bring up the fact that Lymphoma is a side effect of the drug to your doctor.

Since I have been in remission from the cancer for four years now I have been on entocort since last september and have had great results with minimal side effects!

Best of luck!
Best wishes to you on staying in remission. I think everyone's biggest fear is what happened to you. Thank you for posting your story because it certainly keeps the reality of the side effects of these drugs at the forefront of my mind. It reminds me to pay attention to my body. I hope you are able to remain in remission and live a long, happy life.
 
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