HealingWell
Search Close Search
☰

Started 6-MP yesterday - please share your experiences!

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
12 3
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 8/15/2007 2:47 AM (GMT 0)
Hi everyone,

I saw my GI yesterday and he added 6-MP (50 mg. daily) to my list of meds.  I'd like to hear your stories (good, bad, ugly, but hopefully mostly GOOD) and experiences with this drug.  How long did it take to make you feel better and what did you notice as far as reduction in symptoms?  If 6-MP worked for you, were you able to stop asacol/colazal, other meds, etc.? How long have you been on it?

On the downside, he INCREASED my prednisone dosage back up to 30 mg. this week and I'll taper by 5 mg. weekly for now.  UGH UGH UGH UGH...............

Thanks so much everyone!

Stacey
dx w/UC (pancolitis) March '06
Colazal 750 mg x 9 capsules daily
now on Prednisone, 30 mg. daily
just started 6-MP yesterday (50 mg. daily)
Rowasa enema nightly, Probiotics (Primadophilus Reuteri)
dx w/Type 2 Diabetes Nov. 2002
Metformin 500 mg. x 2 daily,Caduet 5/10 mg. daily, Micardis 80 mg. daily, multivitamin + calcium daily and one baby aspirin, CinndromeX (4 daily)

Posted 8/15/2007 11:47 AM (GMT 0)
There's been a lot of talk recently about 6mp/Imuran, search the posts, this might help you too. But for me, 6mp started working at 7 weeks and I found full benefit at 3 months. I recently had to increase my 50mgs to 75mgs on Mondays and Thursdays (rest of the week is still at 50mgs) because I was at the low end of metabolizing the drug and I was still having minor symptoms. So my GI thought that the extra 2 day boost weekly might help me. I've been on it for almost a year and the only side effects I had in the beginning was fatigue, headache and slight nausea but when I started taking it at night, the severity of the side effects when down significantly.

My GI gave me no clue if I can stop my other meds or not but I started a little experiment on myself. I don't recommend this however so please don't try unless you have the consent of your GI. But I've had this DD for a long time and I feel that I know my body well enough. I've been lowering my Colazal myself because I feel as if I'm starting to react negatively to it. I was on Asacol for years then it seemed my body just didn't like it anymore. I started having increase D, bleeding the works so then the doc switched me to Colazal. It worked great for a while but now that I'm on 6mp, it seems that my body wants to get better but I have a feeling that Colazal is not letting me. So right now I'm seeing if it's the Colazal that is causing me to have sporadic D and bleeding since I do have a history of 5-ASA sensitivity. Usually though, most people have to stay on their 5-ASA to help keep the colon quiet but it's not unheard of for people to stop their Asacol, Colazal etc when the 6mp kicks in.
Posted 8/15/2007 1:02 PM (GMT 0)
I did not metabolize the medicine very well. i took 75 mg every day. I took it for a little over a year. i did not see a lot of benefit from it. It took that along with my asacol and enemas to make me better :( However i just started Remicade so i got off the 6mp.
Posted 8/15/2007 4:24 PM (GMT 0)

I just returned from my doctor and my blood works shows that I can start the 6-MP which I'll begin tonight. Thank you to all who provide such supportive information, like taking it at night to help limit the side-effects.  I'm a little nervous about taking this but if it'll get me of the prednisone, I'll do anything.  Any other recommendations are always appreciated.

Deb McG

Posted 8/15/2007 5:54 PM (GMT 0)
Hi Sherry, Tamtam10, and Deb,

Sherry - I have heard that if the 6-MP works for a person that they can eventually stop taking the asacol/colazol also. I hope your experiment works for you and you can share the results with your doctor! Has the 6-MP ever completely stopped your flaring or just made the symptoms milder? I'm trying not to get my hopes up.............but it's hard not to! Also, what is Canasa? Is that an enema? (P.S. You are a great moderator here - thanks for all you do!!)

Tamtam10 - Did your doctor wait a year while you were on 6-MP to see if you would get better before recommending Remicade? During that year on 6-MP did you flare alot? How did you feel after the first remicade infusion and what was that like if you don't mind me asking? I hope it helped and that you are feeling better! Thanks!

Deb - We should keep track of each other since we both started the 6-MP this week! We can compare how we're feeling, if it's working, etc. Did your doctor do that TMPT test too? How many mgs. of 6-MP did he prescribe? Also, how long have you been on pred this time and what dosage are you on? Sorry for all the questions!

Thanks everyone,

Stacey
dx w/UC (pancolitis) March '06
Colazal 750 mg x 9 capsules daily
now on Prednisone, 30 mg. daily
just started 6-MP this week (50 mg. daily)
Rowasa enema nightly, Probiotics (Primadophilus Reuteri)
dx w/Type 2 Diabetes Nov. 2002
Metformin 500 mg. x 2 daily,Caduet 5/10 mg. daily, Micardis 80 mg. daily, multivitamin + calcium daily and one baby aspirin, CinndromeX (4 daily)
Posted 8/15/2007 6:10 PM (GMT 0)
Thanks for the compliment Stacey :) Canasa is a suppository which helps keep my rectal flares at bay. I use them every other day or if I have an increase of symptoms, every night. My doc gives me free reign on them. 6mp for me has put me in remission after a year long flare. In that year, I was on Cortenemas almost constantly because I couldn't get off them in addition to Colazal. Which is why I'm on 6mp now. But if 6mp is going to work for you, maybe one day you will wake up and it will feel like a switch has been thrown. That's what it felt like for me. The annoying left sided pain was gone, so was the bleeding and frequency. My energy level slowly increased - it was great! I will keep my fingers crossed for you but remember that patience is the key here. 6mp takes a while to work.
Posted 8/15/2007 10:26 PM (GMT 0)

Stacey,

Yes, he did that TMPT test first to make sure my body would be able to metabolize the 6MP, which it appears mine will.  Based on my weight, he's put me on 100 mg a day, stay at 30 mgs of prednisone for a couple more weeks along with my asacol, and then we'll try to start tapering.  I do the Canasa suppositories pretty much every night as they really help with the feeling of "urgency" when I'm in a flare.  I started with a bad flare in January, started prednisone right away, it was helping, but then I got pancreatisis in February and had to have my gall-bladder removed.  I recovered great from that, got off the prednisone for about a month, then flared again.  Managed to get off again by the middle of July then flared again in August.  No matter what we seem to do, I just can't seem to stay in remission so we're going to give the 6MP a try.

I've had this disease for 20+ years and I'm pretty much willing to try about anything.  I feel like I've been on the prednisone all of this year and the side effects start to really kick my butt.  I work full-time (manager of an insurance division) and have a husband and two boys, so my life is pretty crazy, but luckily, I won't let this problem beat me and I manage to keep pushing myself along, although some days are tougher than others.  I never miss work because of it, I only have a 10 minute commute so when I'm having a flare, if I time things right I can make it without freaking out.  I was about at the point to start thinking about surgery, but since I haven't tried all the meds available yet, surgery would be considered optional and my insurance wouldn't pay, so hopefully this med will help.

Let's say in touch for sure.  I'd love to continue to hear how it's working for you. I'll keep looking for tips.  The one I've heard over and over is to take the 6MP at night to help with some of the side-effects.  Most people said they had headaches but if they took it at night it helped 

Good luck Stacey, I'll keep my fingers crossed for both of us!

Deb McG

Posted 8/15/2007 10:57 PM (GMT 0)
Sherry & Deb,
Thanks again!

Sherry - I like how you say that "switch was thrown" re: realizing the 6-MP was working for you! Did you say you felt that switch around 2 mos. after starting it? I've heard it can even take up to 6 mos.!! I've been using the Rowasa enemas nightly for the last 10 days. I used them the whole month of June then took a break in July. Have you ever tried those? I've never heard of those Canasa suppositories.

Deb - I also work full time (Humane Society) and have a husband and 2 boys! I'm trying very hard to keep up with *life* but feeling overwhelmed not only with the UC but with my other diagnosis as well (Type 2 diabetes.) I saw both my GI and my GP last week and my blood pressure is sky high (I already take meds for it) - I'm sure the prednisone is contributing to that too. In the mean time, my GP scheduled that treadmill test for my heart on 9/10 - the one where they shoot dye into your chest to see how your heart is working and I may/may not end up a candidate for angioplasty or some such, depending on how clogged I am. :0( I can't stop worrying about it all!! I'm so glad you recovered well from that gall bladder surgery! OMG! What were the symptoms of pancreatitis??? Right now I've been taking my 6-MP around 3:30 in the afternoon, but I will try to push it back to evening, as you mentioned others have recommended. It's just that I take SO MANY darn pills it's hard to fit one more in!!! GEEZ!!!
Okay...............feeling sorry for myself now.............sigh..........
TAKE CARE!!!

Stacey
dx w/UC (pancolitis) March '06
Colazal 750 mg x 9 capsules daily
now on Prednisone, 30 mg. daily
just started 6-MP this week (50 mg. daily)
Rowasa enema nightly, Probiotics (Primadophilus Reuteri)
dx w/Type 2 Diabetes Nov. 2002
Metformin 500 mg. x 2 daily,Caduet 5/10 mg. daily, Micardis 80 mg. daily, multivitamin + calcium daily and one baby aspirin, CinndromeX (4 daily)
Posted 8/15/2007 11:33 PM (GMT 0)

Hi -

I've been on Imuran (6MP) for about 9 months. It probably took a good 5 months to really start to work. I've heard and read that this can be the case in many people. Now I feel the best I've felt in about two years.

I am continuing to take my 5-ASA oral meds. My GI said I don't need to but I do it for my own piece of mind.

So far my monthly blood work has all been fine.

Good luck!

Posted 8/15/2007 11:45 PM (GMT 0)
Wow Kevin!!
That is such great news!! So since the 6-MP kicked in are you feeling, dare I say, "normal"?? I am thrilled to hear you are feeling good! I thought 6-MP was "mercaptopurine" - is that the same as Imuran? (I'm still learning here..............)

Thanks and best wishes for continued health!

Stacey
Posted 8/16/2007 12:11 AM (GMT 0)

Hello
I started the 6mp about 4 weeks ago. STarting to feel somewhat normal. I am also on 30 mg of prednisone. I had a huge flare and was on 60 mg for about 2 weeks and have been tapering down. I also have been using the Rowasa... I can hold them now and they are helping alot.

I dont feel as if a "switch has been thrown" yet but I definiately feel a little more "normal" I am thinking that this is going to work for me.
I have also started to follow (loosely) the SCD. I absolutely believe that eating correctly and healthier meals has had an enormous effect on my UC. I am very positive and hope to be using the word "remission" soon.

Good Luck and Take care
cagio
.

Posted 8/16/2007 12:43 AM (GMT 0)
HIT4NOW--I don't have any experience, just wanted to say ALL THE BEST to you!! I pray the meds will work quickly and timely and all in life will be sane again! Keep us posted! (((((HUGS)))))
Posted 8/16/2007 1:13 AM (GMT 0)
Stacey, 6mp and Imuran are different drugs but are both immune suppresors. They are pretty much the same but broken down different by the liver.
I have tried Rowasa in the past but I am unable to tolerate them. I get severe flu like symptoms as well as intense abdominal pain when I use them. Canasa is pretty much the same as Rowasa except in solid form. For some reason, these don't seem to bother me though! Go figure!
My switch was thrown about 3 months or so after starting 6mp.
Posted 8/16/2007 1:29 AM (GMT 0)

Hi Stacey -

thanks for the congrats! I wouldn't say I was normal but probably about 90% - which is a whole lot better than I was feeling.

I think Sherry answered your question about Imuran vs. 6MP. I believe Imuran is prescribed more in Canada and 6MP in the U.S.A. but I could be wrong about that.

Posted 8/16/2007 7:29 PM (GMT 0)
Sherry - Thanks again for all your helpful info! Did I mention I cannot imagine enduring a year long flare like you did? Wow! I am so so so glad to hear you are feeling better!

Cagio - Continued good luck to you - I'm glad to hear you are feeling a little better too. I completely agree with you on the relationship between healthier eating and UC. I've had to watch what I eat over the last few years anyway due to the diabetes, but because of some things I read on this forum I'm trying even harder to eat well. I've given up popcorn, fried foods, & anything carbonated in addition to sugar, carbs, etc. that I had already stopped eating. I recently eliminated red meat completely for 3 mos. and saw my bad cholesterol significantly drop also.

AlabamaBabs - Thanks for the {{{{{hugs}}}}}!!! Right back at ya!! How have you been feeling?

Kav - 90% better sounds GREAT! So glad to hear you've found something that works for you!

Stacey
dx w/UC (pancolitis) March '06
Colazal 750 mg x 9 capsules daily
now on Prednisone, 30 mg. daily
just started 6-MP this week (50 mg. daily)
Rowasa enema nightly, Probiotics (Primadophilus Reuteri)
dx w/Type 2 Diabetes Nov. 2002
Metformin 500 mg. x 2 daily,Caduet 5/10 mg. daily, Micardis 80 mg. daily, multivitamin + calcium daily and one baby aspirin, CinndromeX (4 daily)
Posted 8/16/2007 7:39 PM (GMT 0)
My doctor is considering this for me, too. Are there side effects?
Posted 8/16/2007 8:21 PM (GMT 0)
Well let me just say that I used to be one sick kid.  I had beastly flares at least once a year since I was little, and the only thing that worked for me was prednisone (BLEK!).  During my last flare, my doctor started me on 6mp and my life hasn't been the same since.  I have not flared in THREE YEARS and I swear I am never going on prednisone again.  No side effects from the 6mp as far as I know, although sometimes a cold will stick to me for awhile.  Hey, I'll take a cold over UC any day!!
Posted 8/16/2007 8:50 PM (GMT 0)
Stacey,

My doctor did not bring up Remicade until a couple of months ago. It was Remicade or Pred. again. I have had it with the steroids so i chose remicade. I was diagnosed in dec. 2004. with the exception of a breif remission period in 2005 i have had a constant flare. I have been so much better since the remicade treatment. 6mp did not work that great for me but everyone is different.

The actual infusion is no big deal. Mine was fine anyway. I sat there for 3 hours in a big comfy recliner and just watched a portable dvd player and snoozed. I have had some reactions to the medication thought (fever off and on, extreme fatigue, soar throat, and cough). The infusion nurse said for my second treatment i shoudl take a benedryl prior to. I am hoping that remicade is the right treatment for me. Steroids only help me for a couple of weeks and then a flare again. We have really never found the magic potion of meds to keep me healthy.

Good luck with the new medicine. Just remember it takes a few months to actually kick in all the way. Be patient with it and just do blood work often to make sure you body is not having any adverse reactions to it.
Posted 8/16/2007 9:57 PM (GMT 0)
Hi HIT4NOW--I am doing pretty good! Thanks for asking! :) The trip went fine by upping my Lialda from 2-4. I had a little scare over the weekend, breaking out in some rash/hive type thing along with mouth sores, which I never get. My GP said to stop taking Lialda, I was allergic! My GI said, nope, keep taking it. So, after a cortisone shot, I took one Lialda today and if all is well, will take 2 in the AM with 2 more in the PM and back to 4 a day, if possible. If not, I'm looking at Imuran or possibly the 6 MP's. I hope it was just the sun and heat, which my GI thinks was the case. Let's hope! However, he know says there may be some chrones/colitis crossover. I'm not quite sure how to take that and am just trying to get through the colitis. However, life is still good and we just have to keep it going forward and not let this get us down or keep us down!!
Posted 8/17/2007 11:50 AM (GMT 0)

To those new to 6mp,

Hi!  I too just started 6mp 3 1/2 weeks ago.  I had the blood test done and metablolize it normal so im on 50mg to begin.  I have had a super bad flare (i have crons-colitis) for almost 2 years.  Prednisone and i dont do well so its not an option.  Nothing has worked including rowasa enemas, pentasa, colozal...so here i am!  In fact today i am having my first remicade infusion as well.  My doc seems to think that it might buy me some time until the 6mp really kicks in.  I might just have the one infusion and then if needed do humira for a bit.  He thinks i will be on 6mp a few years.  I do have to say, that since starting the 6mp i have less urgency and trips to the bathoom.  Its down to maybe 15 from say 40.  I have been more constipated on the 6mp tho.  My trips to the bathroom are mostly mucous and blood.  Also since starting the 6mp i have extreme fatigue.  Im hoping that will go away and ill continue to get better between the remicade and 6mp. 

Good luck to all of you.  Lets keep each other posted with our hopeful progress!

Posted 8/18/2007 3:24 AM (GMT 0)
Perach - I know it's an immunosuppressant so you have to really watch the germs and not be around sick people. I read on another thread someone had bad nausea and high fevers and had to quit taking it too. JusDebbie here mentioned extreme fatigue. I hope others will chime in...........

Michelle T. - WOW! It is so wonderful to hear that the 6-MP is working for you! Did your Dr. say how long you can stay on it? I mean, do you know if people keep taking it "forever"??

Tamtam10 - Are you still feeling the reactions to the first remicade infusion? I hope not - your next one is Tuesday already - has it been 2 weeks? In all honesty, it sounds like the majority of people who use remicade on this forum have found it to be very very helpful in relieving their symptoms! I hope the same goes for you!! Please keep us posted!

Alabamababs - Uh, what is Lialda and HOW ARE YOU? I hope the hive/rash and mouthsores are ALL GONE now? Thanks for your upbeat attitude here - sometimes I feel so beaten down and exhausted - it's so nice to read a friendly word or two!

JusDebbie - Hey, how did your first remicade infusion go today? Let us know how you are feeling. I cannot imagine 40 trips to the bathroom! My "bad" day is 15 trips so I really feel badly for you! Please let us know how you are feeling!

Wishing everyone a great weekend,

Stacey
dx w/UC (pancolitis) March '06
Colazal 750 mg x 9 capsules daily
now on Prednisone, 30 mg. daily
just started 6-MP this week (50 mg. daily)
Rowasa enema nightly, Probiotics (Primadophilus Reuteri)
dx w/Type 2 Diabetes Nov. 2002
Metformin 500 mg. x 2 daily,Caduet 5/10 mg. daily, Micardis 80 mg. daily, multivitamin + calcium daily and one baby aspirin, CinndromeX (4 daily)
Posted 8/18/2007 3:03 PM (GMT 0)
Ok i survived my first remicade infusion.  They premediated me with tylenol and benedry.  Then started the drip very slow.  They doubled it every 15mins when they took my blood pressure and temperature.  My temp stayed fairly steady at about 99.5 which is how it has been running.  My blood pressure dropped down to like 87/38 at one point which kinda freaked me out but i was at 100/50ish when it all ended.  Not sure what that was all about.  The nurse seemed to be ok with it.  I had nothing bad happen, just felt a little weird at times.  The rest of the day i was fine too and today i feel a little more energetic than i have been in weeks.  Not sure if thats real or mental!  Ill keep you posted.  Im just now at 22hrs post infusion!
Posted 8/18/2007 4:09 PM (GMT 0)
HIT4NOW- I am impressed with your multi-tasking response abilities he he :)

Lialda is a medicene used to treat Ulcerative Colitis, typically for patients allergic to the sulfa types of meds, as I am. It is a once a day medicene and a mesalamine product, such as Asacol, but not several pills taken several times a day. I have the pancolitis, as you do. Has your doc talked to you about the Lialda? I was told if Lialda didn't help me, than the next option would be the 6 MP's and/or pred as you are doing. Lialda really went to work fast, within a week and a half and I like that I take it once a day (four pills at the same time) or I would forget! My symptoms of blood/mucous and frequently going to the bathroom have significantly decreased since taking the Lialda. I am also watching more carefully what I eat and trying to keep bad stress down, which is stressful in itself!! ha ha

Lialda website:   http://www.lialda.com/

I think you are doing just great by reaching out and talking about your concerns and getting input and being so upbeat, yourself! I wish that for all of us, we had a specific "prototype of UC" to follow, but that is the biggest pain about all of this for me--we are all different and unique in how UC affects us and how we respond to certain meds, foods, stress, etc. Maybe it is God's way of helping me to quit trying to figure it all out and just focus one day at a time. I hope that as time goes by, we'll get a better handle on it than it seems to have on us. :)

Hang in there!!!!!!!!!!

Posted 8/18/2007 9:15 PM (GMT 0)
I don't think my doctor plans on taking me off 6mp (I wouldn't want him to!!).  I get blood tests once a month to make sure my levels are not too high or too low, and as long as my levels are good 6mp is my primary drug from here on out! 
Posted 8/19/2007 12:53 AM (GMT 0)
Hello

I have been on them for about 2 months now
last month blood test he drop me from 75mg to
50mg....still flaring...my last test he put me on 50mg to 100mg a day ...what i been reading there is hope ...good luck to you
✚ New Topic ✚ Reply
123