Open main menu ☰
HealingWell
Search Close Search
Health Conditions
Allergies Alzheimer's Disease Anxiety & Panic Disorders Arthritis Breast Cancer Chronic Illness Crohn's Disease Depression Diabetes
Fibromyalgia GERD & Acid Reflux Irritable Bowel Syndrome Lupus Lyme Disease Migraine Headache Multiple Sclerosis Prostate Cancer Ulcerative Colitis

View Conditions A to Z »
Support Forums
Anxiety & Panic Disorders Bipolar Disorder Breast Cancer Chronic Pain Crohn's Disease Depression Diabetes Fibromyalgia GERD & Acid Reflux
Hepatitis Irritable Bowel Syndrome Lupus Lyme Disease Multiple Sclerosis Ostomies Prostate Cancer Rheumatoid Arthritis Ulcerative Colitis

View Forums A to Z »
Log In
Join Us
Close main menu ×
  • Home
  • Health Conditions
    • All Conditions
    • Allergies
    • Alzheimer's Disease
    • Anxiety & Panic Disorders
    • Arthritis
    • Breast Cancer
    • Chronic Illness
    • Crohn's Disease
    • Depression
    • Diabetes
    • Fibromyalgia
    • GERD & Acid Reflux
    • Irritable Bowel Syndrome
    • Lupus
    • Lyme Disease
    • Migraine Headache
    • Multiple Sclerosis
    • Prostate Cancer
    • Ulcerative Colitis
  • Support Forums
    • All Forums
    • Anxiety & Panic Disorders
    • Bipolar Disorder
    • Breast Cancer
    • Chronic Pain
    • Crohn's Disease
    • Depression
    • Diabetes
    • Fibromyalgia
    • GERD & Acid Reflux
    • Hepatitis
    • Irritable Bowel Syndrome
    • Lupus
    • Lyme Disease
    • Multiple Sclerosis
    • Ostomies
    • Prostate Cancer
    • Rheumatoid Arthritis
    • Ulcerative Colitis
  • Log In
  • Join Us
Join Us
☰
Forum Home| Forum Rules| Moderators| Active Topics| Help| Log In

6mp

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
profile picture
tschnitz
New Member
Joined : Aug 2012
Posts : 1
Posted 8/23/2012 5:38 AM (GMT -8)
Hello. I am new to this forum so just need some guidance.  My husband is the one diagnosed w/ Crohn's.  Has been on Pentasa but found out that the med alone is not helping the Chron's.  His doctor wants to start him on 6mp in conjunction with the Pentasa.  His father was on the 6mp and has bad side effects so he is not wanting to go on the med.  Any words of advise from people who have been on the 6mp.  The list of side effects the doctor gave us were quite intimidating.  Any help would be great!!
profile picture
WingZero
Veteran Member
Joined : Oct 2011
Posts : 604
Posted 8/23/2012 8:18 AM (GMT -8)
I can't really give much advice, I've only been on it for two weeks, but in my case I'm running out of options. I was really scared to start taking it, and I admit I still have some nights where I wonder what I'm doing, but I also feel like if I don't get this thing under control than that isn't going to be much better. To my understanding, the really scary side effects are *very* rare and they will be monitoring your husband frequently to make sure they catch anything funny so they can pull him off of it if needed.

Side-effect wise, I've only been dealing with a bit of nausea (which might just be from the disease itsself or having been on flagyl before taking 6mp) and I do seem a bit more fatigued even though I'm on prednisone. Otherwise, all you really need to look out for are things you would look out for anyway - fever, chills, signs of infection.

Whatever you guys decide, I hope your husband feels better.
profile picture
Dingleeire
Regular Member
Joined : Feb 2012
Posts : 189
Posted 8/23/2012 10:11 AM (GMT -8)
Hi:

My 17 year old son has been taking it since February. Started out at 75mg and was doing very well. Dosage has been increased to 100mg every other day since late June and he notices that his stomach is getting upset on the days after he takes 100mg. Dosage was increased to get him in the therapeutic range. Doctor says that blood work is where they want it to be. Other side effects is that he may get a little tired from time to time if he over does it, he has lost a little hair almost looks like it is plucked in places but when it starts to look real bad he just gets his hair buzzed. However,he has gained and maintained his weight while taking this drug and his energy level is good for the most part like I said above only crashes really if he over does it.

Keeping up with blood work is very important to catch any potential problems. I still worry like crazy about him and I hope to God that he will not get any of the serious side effects from this drug but I also know that his crohn's has to be treated.

Wishing you husband the very best and I hope he does well on 6mp.
profile picture
I need help
Regular Member
Joined : Jun 2012
Posts : 210
Posted 8/23/2012 10:28 AM (GMT -8)
I was on imuran for a few weeks and had to come off of it because of the side effects.  Now my doctor wants me to go on 6MP.  I feel the same way as your husband. These 2 drugs are similar.  I'm like a couple of other people who responded.  I think I'm going to take it because nothing else is working.  I hate the thought of destroying my immune system for however long I have to be on this drug.

Good luck to your husband.  keep us updated.   I hope other people who take 6Mp will respond.

profile picture
MikeB
Veteran Member
Joined : Mar 2006
Posts : 1169
Posted 8/23/2012 1:46 PM (GMT -8)
Side effects from 6mp and Imuran affect perhaps 10-15% of patients, and all are reversible simply by stopping the drug. Many Crohns patients have successfully achieved long term remission on these meds. I would try it and see . . . worst thing that can happen is you have to stop and go to plan B.
profile picture
nawlinscate
Veteran Member
Joined : Jan 2007
Posts : 656
Posted 8/25/2012 5:19 AM (GMT -8)
I've been on 50mg/day of 6MP for 8 years, with minimal side effects--and it's kept me in remission during that time. Pentasa did absolutely nothing for me. Each one of us is different, but maybe it's worth a try.
profile picture
laurlew
New Member
Joined : Aug 2012
Posts : 13
Posted 8/25/2012 7:09 AM (GMT -8)
Hi, I am also new to this forum. I have been reading all the posts regarding chrons and uc for a while though. I was diagnosed with uc over 10 years sgo and had been doing well on the asa meds. Up until 6 mo. Ago. I just came home from the hospital after a 5 day stay due to a severe flare. I am on 40mg. Of prednisone and started 6mp 50mg last week. I am not excited about the 6mp, but if it means I will possibly go to remission, I am willing to try.
My new problem is this morning I awoke with pain on my right side, just under my breast. It got pretty severe, but seemed to subside after I took the prednisone. So I am guessing there is inflammation and the steroid helped, but the problem still exists. What does the pancreatic pain feel like, does it usually subside and or return?
I have been sick for so long that any new pain terrifies me, and I end up crying, begging God to make it stop. The anxiety and emotional toll this disease takes on you may very well be the worst part of it!! Anyway, any help/information would be appreciated.
Btw...having cbc blood test every week, but had it run on Thursday, so Dr. didnt have any results yet. Hoping this isnt pancrease or liver related.
profile picture
champagnekindofgal
Regular Member
Joined : Jan 2010
Posts : 221
Posted 8/26/2012 6:32 AM (GMT -8)
I would suggest you ask the doctor if he will be testing to see if your husband has the right enzymes to metabolize 6mp.

I was on 6pm for 2 years and went off in 2006 when it affected my liver. Went on Imuran in 2009 after a bowel obstruction (thought I could go drug free for a while ... not).

I had a doctor in 2009 that kept playing with my doses and apparantly I didn't have the enzymes in the beginning to digest the drug, so I ended up having metabolite toxicity and my hair started to fall out.  I am now on Pentasa and have a new doctor;)  All symptoms reversed. 

For those that can metobolize the drug, I hear it can provide long term benefits ... but do ask about pre-testing.

profile picture
salubrious
New Member
Joined : Aug 2012
Posts : 17
Posted 8/26/2012 8:23 PM (GMT -8)
I was on 6mp for about 3 years and it worked well with NO side effects. I did start to notice some signs of flare around the three year mark and was put on Humira. My chron's is under controll which I'm incredibly grateful for. After a year of being on Humira I started getting all sorts of minor infections and now my hair is falling out. I'm curious about this metabolite toxicity. I was never filled in about this.

But as far as side effects go: everything is cost and benefit. I guess we have to try these drugs out and see if they offer us a quality of life. There's certainly a fine balance.

Best of luck.
profile picture
oldcrohnie
Regular Member
Joined : Feb 2007
Posts : 140
Posted 8/27/2012 9:27 AM (GMT -8)
laurew - if you haven't already - get to the doctor or ER - I started with pain on just under my breast, which after 12 hours spread to my back, and by the time I got to the ER, I had a serious case of pancreatitis - caused by 6MP. Stopped taking it, was kept overnight on IV fluids, and fasted for 48 hours before feeling better. Have it checked out - better safe than sorry - you don't want to end up a diabetic.

 

profile picture
laurlew
New Member
Joined : Aug 2012
Posts : 13
Posted 8/28/2012 7:48 AM (GMT -8)
Thanks for the advise oldchronie, waiting on a call back from my dr. Now. This is Tuesday, and I have had the pain every day since Saturday, but by evening it is all but gone. Right, definately dont want to end up diabetic!
What med. Did you do next after you stopped the 6mp?
profile picture
meshice
Veteran Member
Joined : Jan 2003
Posts : 734
Posted 8/28/2012 9:05 AM (GMT -8)
I have been on POentasa and 6MP for 11 years now and I have had NO problems.  I get bloodwork done every three months to check my blood counts and once a year they check my liver with bloodwork.  6MP has been my miracle drug!
profile picture
oldcrohnie
Regular Member
Joined : Feb 2007
Posts : 140
Posted 8/28/2012 4:06 PM (GMT -8)
Hi - I went on Pentasa, but was allergic, so now I'm on Humira. My doctor said there was nothing else that could be done except biologics.
meshice - glad the 6mp works for you - it seems to work for a lot of people. Unfortunately, I am allergic to quite a few drugs.
Laurlew - if the pain subsides at night, doesn't sound like pancreatitis, but the location of the pain is a concern. Hope you get some answers soon. We have enough to worry about without "new" pains!
profile picture
oldcrohnie
Regular Member
Joined : Feb 2007
Posts : 140
Posted 8/30/2012 6:26 PM (GMT -8)
laurlew - any word from your doctor yet?
profile picture
laurlew
New Member
Joined : Aug 2012
Posts : 13
Posted 8/31/2012 3:04 PM (GMT -8)
Hi oldchronie...what a journey I am on.
I live by and am being treated at the Cleveland Clinic (thank god) so I am in good hands. Went to the ER at my Dr. Advise and dx with pulmonary embolismS! Dr. Says result of the UC in very small number of cases (lucky me)! After much discussion this week between Dr. And me, I have decided that surgery is my only hope now. I havent wrapped my head around it yet, just decided today, typing to you from my hospital bed! Surgery is scheduled for Tuesday. I have to have a procedure done this weekend to put an umbrella like filter in my main vein to catch/break up any clots, it stays forever. Tired of the hospital, tired of UC and tired of the emotional up and down!!
So...I will post again a couple days after the first of 3 (thats right, lucky me has to have the 3 step instead of 2) and let you all know what life is like then! Thsnks for the advise oldchronie, glad I called dr. And went to ER! even if the end result wasnt what I wanted!
profile picture
I need help
Regular Member
Joined : Jun 2012
Posts : 210
Posted 9/1/2012 10:28 AM (GMT -8)
meshice,

What dose have you been on these last 11 years?

profile picture
oldcrohnie
Regular Member
Joined : Feb 2007
Posts : 140
Posted 9/1/2012 3:44 PM (GMT -8)
Oh, laurlew, so sorry to hear this. I will pray for your quick recovery. You just never know with IBD and all the badass meds! Good luck.
profile picture
laurlew
New Member
Joined : Aug 2012
Posts : 13
Posted 9/3/2012 4:24 AM (GMT -8)
Well, as it turns out I cant do the surgery at this time. The vascular team was adamant that putting me under anesthetic with existing clots in my lungs could be fatal. So, I have to do 6 months of coumadin and get rid of the clots. When they are gone I can and have to have the surgery.
So, I got a break, but the end result is the same...surgery.
Now of course if I start to taper off the prednisone and start to bleed, this will throw a problem in the mix, but cross that bridge when I get to it!
profile picture
oldcrohnie
Regular Member
Joined : Feb 2007
Posts : 140
Posted 9/3/2012 5:01 AM (GMT -8)
Take one day at a time - prayers are with you. Did you stop the 6MP? Will you stay in the hospital to be monitored?
profile picture
laurlew
New Member
Joined : Aug 2012
Posts : 13
Posted 9/3/2012 2:46 PM (GMT -8)
Still on the 6mp, I will see my GI this week while I am here and ask why. If I have to have surgery because of the clot risk, why stay on it? If there was a chance I could be in remission without clot risk, I could understand that...and that would be awesome!
Here at the clinic for 5 more days so my heparin levels are therapuetic and I can get the oral coumadin levels right. I hear the INR levels suck to regulate, this should be fun!
Yep, one thing at a time. Thanks for the prayers and thoughts! More updates to come!
profile picture
Katiesmama
New Member
Joined : Aug 2012
Posts : 1
Posted 9/3/2012 3:09 PM (GMT -8)
New to the forum, Chron's since I was 29/42 now. I was on asocol for years but since the birth of my daughter it didn't seem to work. Lots of stomach pain and gas. Recently tried humira which gave me hives all over my upper torso. Itching and redness so bad it would wake me up in the middle of the night. Just stared 6mp with much anticipation. Taking a cancer drug scares the heck out of me! I travel for work and have a 4 year old and a husband that works nights. Just trying to get the bowels back to normal . Happy to read the success of 6mp.

Best of luck to you all!
profile picture
meshice
Veteran Member
Joined : Jan 2003
Posts : 734
Posted 9/6/2012 9:33 AM (GMT -8)
I take 75mg of 6MP a day.
profile picture
dorri
Veteran Member
Joined : Feb 2003
Posts : 2050
Posted 9/6/2012 9:14 PM (GMT -8)
Isn't 6mp, imuran and azathioprine all the same more or less, just under different brand names?
I was on this immune suppressant for almost a month, and even though I quit taking it because of weight loss, fevers and joint pain etc.. I'm still trying to pick myself up and it's a month and half later. Hope everything goes well for you, and you don't experience what some of us have. Everything has side effects to some degree.
profile picture
laurlew
New Member
Joined : Aug 2012
Posts : 13
Posted 9/21/2012 8:19 AM (GMT -8)
Hello all! Just thought I would post because there are very few positive posts on here. I hsve continued on the 6mp, tapering every week off the prednisone (down to 30) and taking the warfarin and Im feeling great!! I know that the prednisone has much to do with thst, but zIm just happy to be feeling good! No blood, regular movements, and living life for s while...sure feels good!! Hoping to be done with the warfarin after three months, should be done with the prednisone then too...THEN I`ll worry about surgery.
✚ New Topic ✚ Reply


More On Crohns Disease

Traveling With Inflammatory Bowel Disease

Traveling With Inflammatory Bowel Disease

Cardinal Rules For Life With Crohn's Disease

Cardinal Rules For Life With Crohn's Disease


HealingWell

About Us  |   Advertise  |   Subscribe  |   Privacy & Disclaimer
Connect With Us
Facebook Twitter Instagram Pinterest LinkedIn
© 1997-2023 HealingWell.com LLC All Rights Reserved. Our website is for informational purposes only. HealingWell.com LLC does not provide medical advice, diagnosis, or treatment.