Questions about 6-MP

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brit tuck
Regular Member


Date Joined Jun 2007
Total Posts : 143
   Posted 2/21/2008 9:29 PM (GMT -7)   
I've read some of the other posts about 6-MP/Imuran, but I was wondering if you all would be willing to share your experiences with the medications. I'm supposed to start taking 6-MP next week. I've been on Entocort before, but had gone off it after about 9 months of use. I've been on Pentasa and Imipramine since then, but since going off the Entocort I've had flare ups. So my doctor thinks it is the best way to get everything under control for the long term is to go on 6-MP. So I'm going back on Entocort for two months until the 6-MP starts working.

Some of the side effects have me a bit concerned since I'm in law school right now. Our law school seems to be a breeding ground of colds and whatnot. I'm afraid of going on this medicine and getting really sick from a basic cold. Has that really happened to anyone? Is there anything you can do to boost your immunity while on the medicine?

What have all your experiences been like? Has it helped a lot? I'm just really interested in what real experiences are like with the medicine as opposed to just reading about how the meds work.

Thanks in advance!!

Sharann
Veteran Member


Date Joined Sep 2005
Total Posts : 778
   Posted 2/21/2008 9:39 PM (GMT -7)   
I hate this drug at the moment, but the point is to suppress your immune system a bit on this drug.
Don't try to counteract it with immune boosters or it can interfere. I would eat well, stay away from very ill people,
and wash your hands often. Also, get enough sleep helps.
I am having probs with it now and I have been off it for a few days. Wishing you well in law school and with this med.
I am a Certified Doxie Lover(Weinerdogs)


sammies
Regular Member


Date Joined Feb 2008
Total Posts : 493
   Posted 2/21/2008 9:48 PM (GMT -7)   
Until recently, I was on a small dose of 6mp (50 mgs) on and off for 17 years. When I could take it, 6mp worked great for me. I I am one of the very few who "is allergic" to it. Ie. my red or white blood cells would plummet and I'd have to get off the drug for a while. I never really had any adverse reactions to the drug except that.

It was extremely helpful for my fistulas and my lower bowel disease. I had no issues with pancreatitis or any other side effects other than the low blood counts. I did drink alcohol.

At several points, my GI's office would call and tell me my white blood count was a little low. So I'd get out the hand sanitizer (a constant on my desk and in my bag) and avoid crowds. Never shared drinks. Washed my hands a lot. Washed fruit and was VERY careful near salad bars. When visiting other folks' homes, I never use the guest towels--I dry my hands with tissues. Avoided eating samples at a grocery store and kept my eye on how people handled hors d'oevres at a party. I never had to wear a mask. At times when my counts were low, I did avoid gyms, didn't hold the escalator rail, and left crowded places where folks were coughing. I have a harder time getting rid of colds than most, but I think all of us Crohnies deal with that. If I spotted someone at a party with a cold, I'll admit, I did try to avoid them and still do. But, for the most part, while on 6mp, my health was very good. Again, my dose was low. I have known folks to take up to 150mgs a day and do very well.

The blood tests are very important. In addition to your WBC and RBC, your doc will be monitoring your liver. You'll do the blood tests every few weeks at first and then once a month and then once every 2 or 3 months. If at any point you feel under the weather or spot a rash developing, be sure to call your doc. You'll want to nip any adverse reactions quickly. best of luck to you.
23 years with moderate Crohn's/colitis; fistulizing crohn's; pentasa


brit tuck
Regular Member


Date Joined Jun 2007
Total Posts : 143
   Posted 2/21/2008 11:49 PM (GMT -7)   
Thank you for your comments! That's good to know to stay away from the immune boosters, I wasn't sure if that would be bad or not. I've been trying to make sure I get plenty of rest, I'm always exhausted now. It's kind of hard with so much school work, but I dropped one class this semester. My school has been amazing with helping me. I honestly want to hug them for all their help.

Sammies, what is a normal dose for 6-MP? I thought it was calculated based on your weight. My doctor said that based on my enzyme test, that I'm within the "intermediate to normal" range, which means they possibly can't bump me up to as high of a level as they would want to. My doctor plans on really checking my white blood count, he has me scheduled to go once a week for the first 8 weeks and then once a month after that. Your idea about hand towels seems like a good one. I'm already super into hand washing, it's a little OCD'ish. I always make sure to get the paper towels ready before I was my hands so I don't get germs afterwards.

I guess I'm just nervous since I always tend to have a little cough and get sick easily. And it seems like there is always someone sick in class.. but with assigned seats, you can't stay away from them. If I get sick, should I call my primary care doctor or GI doctor? I guess I'm just worried that I won't notice I'm getting sick at first, since it's pretty common with me, and then it blows up to something bad. Do you think as long as I keep an eye on things I'll be ok?

I'm also possibly going to be doing a summer abroad program in London. Every time I fly though I tend to get sick. I'm nervous I might have to wear a face mask on the plane so I won't get sick. Ah! I guess I'm just freaking out before hand.

teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 2/22/2008 4:52 AM (GMT -7)   
Hi I have been on Imuran for almost 5 years and I have no-side effects from the drug.
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital
in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.
 My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
My Internest doctor has me on Lisnopril-HTCZ and Folic Acid. Diagnosed
with Osteoarthritis July 2007
 


sammies
Regular Member


Date Joined Feb 2008
Total Posts : 493
   Posted 2/22/2008 8:14 AM (GMT -7)   
Brit tuck- I'll try to answer your questions the best I can. Your willingness to be informed and proactive is half the battle.

I'm not sure what the "normal" 6mp dose is but from what I've read most folks are on 75-100mgs. However, 50 was fine for me. Sounds like your GI has it well planned out and is monitoring you closely. I went to the grocery store last night and they have purell wipes at the front to wipe your carriage handle down. Yes-I definitely use those. It's not just us 6mp folks, the general population is more germ conscious now.

As for the plane ride, ask your doc. I'm betting s/he will say you don't need the mask. Remember, cancer patients often deal with far more suppressed immune systems than we do. My aunt travels with a mini air purifier around her neck. She says it cleans the air before she breathes in and won't get on a plane without it. Neither she nor I will use a plane provided pillow or blanket.

With your doc monitoring you, the availability of communication via cell phone/email, I bet your trip to London will be just fine. It's a good idea to tell your GI ahead of time that you will be traveling as s/he may have some ideas for you or meds to take with you. When I get sick, I call my GI first as he knows which meds are good for Crohnies. (I made the mistake of going to a clinic for a sinus infection in January--went with a zpack and started a terrible flare.)

I'm sure I'm worse OCDish than you! I wipe down my computer keyboard and piano with purell or windex. And I'm the rude one who uses purell after exchanging a sign of peace in churches. :-)
23 years with moderate Crohn's/colitis; fistulizing crohn's; pentasa


MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 2/22/2008 8:17 AM (GMT -7)   
Five years plus on 6mp here as well, 50mg. I have had no adverse effects and very good therapuetic effects. A last scope in December the GI kept poking around in the cecum saying "I really can't find any sign of active disease here" and finally located a very small ulceration and some mild inflammation in the terminal ileum, so it has worked very well for me. Yes there are some side effects thta hit a very small miniroty of patients -- primarily white blood cell supression -- but your regular blood tests should detect that early if it happens. Overall it is one of the most consistently effective long term treatments for Crohns and works well for most people. The one thing to be aware of is that it can take up to 90 days to really reach effectiveness as it gradually ratchets down your immune responses.

lil-momma
Regular Member


Date Joined Feb 2008
Total Posts : 132
   Posted 2/22/2008 8:44 AM (GMT -7)   
It is pretty amazing, what one of us is thinking and don't ask another does......That is yet another positive for this site! My daughter is on 6mp. She started it in sept at 50 mg a day and is up to 150 mg a day. She only weighs 116 lbs so I was curious about the weight determining the dose?! She is having some problems but we can't blame it on 6 mp. Since she started, she has had blood work every 2 wks and her levels have remained very low. That is why they continue to increase the dose. Her GI said it takes 3 months to get the full effect of the drug. As Sammies said - who btw has been very helpful to us - always be careful to avoid germs. Best wishes to you!
Mother to 15 yr old daughter diagnosed w/CD 9/07.  Had col & endo in 9/07, small bowel follow through 11/07, surgery for abcesses 11/07.  Curently taking multi-vit, iron for anemia, bentyl prn, prilosec 20mg-x2, pentasa  500mg-x5, entocort-x3, 6 mp 50mg-x3.....still not doing well.


Doc2007
Regular Member


Date Joined Oct 2007
Total Posts : 294
   Posted 2/22/2008 10:52 AM (GMT -7)   
First I have to say that it is amazing what science has discovered in autoimmune disease medicine! Who would have ever thought that supressing your immune system would actually make some people well! LOL
 
Anyhow I started 6mp in Nov...I guess I am closing in on the 90 day mark where it is suppose to kick in. To be honest I have felt so much better the past 3 weeks then I have since October when I begain to flare.
 
I am at 100mg a day (thats 2 pills every night). I have had no side effects at all which is the best part...My daughter has had an array of colds in which I took days off of work to care for her and I never got ill. My partner and a number of our friends have had that nasty flu bug that has gone around and I slept in the same bed with him and did not catch that either.
 
From my experience so far it seems that the precautions and warnings are given because those things do happen in a very very small number of patients, but as my doctor told me a few years before I was put on the drug is that the longer they use 6mp in treating Crohns patients the more they find that their innitial fears are unfounded.
 
Anyhow Im looking forward to getting my life back on track, getting back in the gym, and living a healthy active lifstyle again. I have found that I go to bed about two hours earlier than I use too. But I attribute that to the fatigue caused by having active disease, and not the drug itself.
 
Good luck!

lilturbo
Regular Member


Date Joined Feb 2008
Total Posts : 298
   Posted 2/22/2008 6:36 PM (GMT -7)   
I was on 6-MP for a few months and had to get my blood drawn weekly to check my liver enzymes. I ended up having to come off of the 6-MP b/c it was causing too much damage to my liver. My only advice is to get your blood drawn at least once a month to make sure all of your numbers are OK. I am now on Remicade.

nawlinscate
Veteran Member


Date Joined Jan 2007
Total Posts : 656
   Posted 2/24/2008 1:52 AM (GMT -7)   

I've been on 50 mg per day of 6MP for about four years now. It has definitely reduced the inflammation (and hence the narrowing) in my terminal ileum. If it's producing side effects, I don't know about them, since most of them are the same as my Crohn's symptoms (nausea, diarrhea, lightheadedness). I have been totally reckless with my own health and safety, doing things in the toxic post-Katrina environment that should have killed me many times over. (I'm not kidding about this. You don't even want to know!) But I've only gotten sick once, with a respiratory virus. My doctor just says that I must have an amazing immune system, since it seems to be operating so effectively even with a daily drug to suppress it.

I have blood tests and liver function tests every three months. The 6MP has done nothing to relieve all my horrible Crohn's symptoms, but neither has anything else I've tried. Still, since the drug has helped to prevent any further obstructions since my surgery in 1999, I'm happy to be on it.

 


Mormor Vicky
Veteran Member


Date Joined Mar 2007
Total Posts : 684
   Posted 2/25/2008 11:00 AM (GMT -7)   
150mg seems to be a very high dose for 6-mp for your daughter.  I was overweight and was upped to 150mg.  I developed ulcers on my lips and went to my GI.  He said that it was the herpes virus and to go to my PCP.  She put me on anti-biotics that did absolutely nothing.  Next came the "heavy guns" antibiotic.  I was getting worse.  Decided to go to the ER because I couldn't eat or drink anything because of the pain.  My lips looked like raw meat.  Turns out I had bone-marrow suppression that my GI didn't catch when I first went in 3 weeks earlier.  Ended up in isolation for 11 days.  To say the least, he is no longer my GI.  He should have caught it much earlier and he didn't. 
 
I know this med can be quite wonderful for so many people but please, please stay on top of it and make sure your GI does too.
Vicky / 48 years old
DX'd with Crohn's during a resection August 2006
DX'd with Steriod induced Diabetes November 2006
Considered in Clinical remission but have minor signs of disease activity
 
Daughter (27) also has Crohn's since she was 12.
 
Currently on 4000mg of Pentasa only for Crohn's
No longer able to take 6-MP because of Bone-Marrow Suppression
Cymbalta, Metformin, Lipitor


EmmyT
Regular Member


Date Joined Oct 2007
Total Posts : 75
   Posted 2/25/2008 5:09 PM (GMT -7)   

Lil-momma-

I've always heard 50mg per 50lbs. I am 115 and when I was on it it was 100mg. 150 sounds very high.


brit tuck
Regular Member


Date Joined Jun 2007
Total Posts : 143
   Posted 2/25/2008 5:12 PM (GMT -7)   
Is the 50mg/50 lbs normal? I know that my doctor said something about me being "intermediate to normal" so he couldn't bump me up as high as possible, but I'm definitely not anywhere near 115 and the most I can go up to is 75mg. Is that really low?

inflamed
Veteran Member


Date Joined Nov 2005
Total Posts : 1340
   Posted 2/29/2008 10:10 PM (GMT -7)   
I was on 6mp for more than three years and it was my wonder drug. Even in a law school that bred germs I got sick less when I was on it (I did get flu shots). I was in remission within months of starting 6mp and never had side effects. I only stopped to get pregnant.

My dose was always adjusted by bloodwork. You should be monitored frequently, especially in the beginning. I was usually on 75mg (120lbs 5'9)
Currently in remission!


brit tuck
Regular Member


Date Joined Jun 2007
Total Posts : 143
   Posted 3/1/2008 9:53 AM (GMT -7)   
My doctor is planning on doing blood tests every week for the first 8 weeks and then every month after that. I guess I was just a little shocked that people who are taller and weigh a lot less than me are taking either the same amount I'll get up to (Inflamed) or even more than I'm allowed to. That's nothing to be concerned about right, the fact that I'm not allowed to go higher?

I'm glad that this drug seems to work well for people. I've been on it for like 5 days and I haven't had any nausea or anything, so that's good. I'm hoping it helps me too eventually. And I'm trying to be careful around people who are sick at school and everywhere. It's like I have a detector that hears every sneeze and cough now.

DarrylP
Regular Member


Date Joined May 2006
Total Posts : 214
   Posted 3/1/2008 1:35 PM (GMT -7)   
brit tuck said...
Is the 50mg/50 lbs normal? I know that my doctor said something about me being "intermediate to normal" so he couldn't bump me up as high as possible, but I'm definitely not anywhere near 115 and the most I can go up to is 75mg. Is that really low?
Sounds about right to me, i am on 250mg at 240lbs , so that ratio is about normal, the recommended therapeutic of Imuran for Chrons in the big medical book of drugs says 2.25 mg/kg which is about 1.02mg/lb
 
However, as far as i know from reading these boards, there are more ppl who cant then there are that can handle this dosing, it seems i here about many more ppl having to lower their imuran doses because of toxicity problems whereas i could probably handle more the 250mg/day. All depends on the person, maybe your doctore thinks you cant handle the full dosing? or maybe your kidney/liver counts are already low to begin with?
 


brit tuck
Regular Member


Date Joined Jun 2007
Total Posts : 143
   Posted 3/1/2008 2:15 PM (GMT -7)   
I know my doctor mentioned I was in the intermediate to normal range, as far as the dosing. But I wasn't aware that could possibly be because my counts are already low. Do you think I should be concerned about that if the medicine starts working? Or just make to sure to definitely keep an eye on things? Thank you all for your help!

DarrylP
Regular Member


Date Joined May 2006
Total Posts : 214
   Posted 3/1/2008 9:01 PM (GMT -7)   
Well thats the main reason for keeping on eye through the forms of blood tests is too make sure they arent putting you on too much. I am just making an assumption about the counts since it would be obvious in my mind that if you already had borderline liver or kidney counts that they wouldnt go putting you on a full dose right off the bat. For me, my kidney counts and liver counts were exceptional, (Creatinine Clearance and Creatinine levels were exactly where they were supposed to be, liver counts were nice and low, which i credit to the fact i havent had a drink in 6 years, dont eat any junk food or food containing bad fats/cholestorol blah blah and spending my life in the gym) so my doctor didnt think twice about giving me the full dose, and sure enough, my pre-Imuran and post-Imuran Kidney/Liver counts were unchanged, which is good...so in the case of you, i would assume your GI would have some reason to believe you dont need the full blown dose, and i think the only thing that would give your GI that kind of information is a blood test to see what your current condiitons were Pre-Imuran
brit tuck said...
I know my doctor mentioned I was in the intermediate to normal range, as far as the dosing. But I wasn't aware that could possibly be because my counts are already low. Do you think I should be concerned about that if the medicine starts working? Or just make to sure to definitely keep an eye on things? Thank you all for your help!

 


petittarte
Veteran Member


Date Joined Apr 2006
Total Posts : 686
   Posted 3/1/2008 10:41 PM (GMT -7)   
I find that I get sick much less since I have been on 6mp and remicade.
Jodi

Remicade and 6MP


brit tuck
Regular Member


Date Joined Jun 2007
Total Posts : 143
   Posted 3/4/2008 1:02 AM (GMT -7)   
Have any of you noticed itching while being on the medication? Over the past few days I feel really itchy.. almost like there's always something like a hair on my face or just something that makes me start to itch. Sounds kind of strange I know. Also, I feel like my acne is all of a sudden getting worse. But that could also be because I recently changed my birth control. Anyways, I thought if anyone knew the answers you guys would.

Also, I ended up calling my primary care doctor's office to let them know I was on the medicine and also to ask when, if I ever needed to, I should have to call them about having colds. They basically just said if I had a fever is when I should come in. I've had a bit of a sore throat but I haven't thought much of it so I'm leaving that be. If only I wasn't so tired! One step at a time though. :)

inflamed
Veteran Member


Date Joined Nov 2005
Total Posts : 1340
   Posted 3/4/2008 6:53 PM (GMT -7)   
I've had the itching, but it only started after I stopped taking 6mp. A few others have mentioned a similar thing on a post about itching ankles.
Currently in remission!

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