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Crohn's Disease Forum » Treatment » Long-term users of 6-mp or Azathioprine


 
01-31-2010, 06:33 PM   #31
kittykat92
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ive been on 75mg for teh past year seeing im only small (99 pounds) and im 17 the doctor doesnt want to increase my dosage anymore (which i think is a good idea) though i still have heaps of hospital stays. I didnt know fatigue was a side effect! that actually answers heaps- I get so tired during the day and just want to sleep my mum gets so worried so that might make her feel a bit better
07-30-2012, 08:53 PM   #32
GlennF
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I am having to decide between two meds: either 6MP or Humira. I feel like Humira is the last resort but I need advise on which one is more preferred. I am only 18 and I just recently had surgery to remove some colon and small intestine in December. My Crohn's specialist says I have a 50% chance of a reoccurrence in the next 5 years. But if I take a medicine the percentage is greatly reduced. I am very confused on which medicine to choose.
07-31-2012, 10:06 PM   #33
TheyCallMeRC
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Location: Auburn, Georgia
Bumping this to give an update..... Finally got to see my new GI today and he started me on 6-MP (100mg day) and I have a colonoscopy next Tuesday and he wants to do an upper GI and small bowel follow through (not sure why he wants to do a SBFT after the colonoscopy but he's the doctor). This is my first try with 6-MP after two years of Cimzia and no luck. I need to get my crohns in remission so my fistulas will heal. Will keep updated as to how it helps or not. He said it takes about 3 weeks and I will be tapered of this round of prednisone so I should know if it's working or not.....
08-02-2012, 02:40 PM   #34
Tenacity
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I believe it takes longer than 3 weeks to be effective. I would research that. I'm typing this on my cell - or I would have done it for you.

Have u ever tried Remicade - or just Cimzia in the past?
08-02-2012, 11:00 PM   #35
TheyCallMeRC
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I believe it takes longer than 3 weeks to be effective. I would research that. I'm typing this on my cell - or I would have done it for you.

Have u ever tried Remicade - or just Cimzia in the past?
I tried Remicade for I think 3 infusions. After the 3rd one I started having a tightness feeling in my chest and the dr. stopped completely. Then my last GI said that he wasnt going to try Humara because if Remicade didn't work then neither would that. i told him we didnt really get to try it and all that but I have heard otherwise from crohns patients and it did work after Remicade. Right now we are trying the 6-MP and if that doesn't work then I will try to push for it again.
08-10-2012, 08:30 AM   #36
Sadiesweeet
 
Join Date: Jul 2012
Location: Hull, United Kingdom
This forum has really made me feel a lot better about being started on this medication! I'm currently taking anti-biotics for my abscess and on the elemental for another two weeks to calm my flare down. My doc has said although i feel fine he wants to start me on Azathioprine long term (not sure what dose yet) as soon as my abscess has gone as my Crohns is quite severe.

I was daunted at first about taking medication long-term and the possible risks to disease etc but most people are saying they have very few side effects other than fatigue?
I have always had fatigue any was as i am anaemic so have vit B12 injections regularly.

I'm sort of hoping although this drug is long term it will help me on my way to leading a normal life with crohns.
11-03-2012, 08:02 PM   #37
smp209
 
Join Date: Nov 2012
This makes me feel a little better. I've been on 6mp for about 14 years now, and have been in remission for about 10. (I was diagnosed at 7, will be turning 26 this month) I've been getting uneasy about being on such a serious med for so long. Especially as I hope to have children someday, I don't want to be on a medicine that could harm my future children. Are there any significant effects that come from being on it for so long?

On a random note, does anyone know if 6mp/Crohn's can cause eczema?
04-06-2015, 06:31 PM   #38
Steveyank
 
Join Date: Mar 2015
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Hi. I just started 6mp today, 100mg. Just wondering how long it take for side effects to appear if they are going to. I Am also on entyvio for 4 months.
10-21-2015, 11:32 AM   #39
mtngrl55
 
Join Date: Jul 2012
Location: Brandon, Manitoba
Hi! Thanks for all of the info here. I have just been on entocort with no results and increasing side effects, so am finally ready to go back to 6-MP. It worked for me for three years but I went off of it because the nausea started to get really bad. That was 10 years ago. Since the 6-MP I have had minor flares and used Aza for one, it worked great but my liver enzymes skyrocketed. I was already in remission after ony 3 months of it. I wish I could use it again. I've been researching cannabis vs 6-MP and while I like that cannabis has less side effects, I want to achieve remission again. I have been Mostly concerned by the risk of lymphoma but I've found that I'm not in the high risk age or gender so will try it again, this time using nabalone for the nausea.
10-21-2015, 03:55 PM   #40
Jennifer
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Hi. I just started 6mp today, 100mg. Just wondering how long it take for side effects to appear if they are going to. I Am also on entyvio for 4 months.
This is a really old post but I'm going to reply anyway in case anyone else wants to know. I've seen people mention on the forum seeing side effects within a few days of taking it but those were more extreme reactions. It really depends on the person (few days to months). Personally I've never noticed any significant side effects from it and I've been on it for over 15 years. 100mg may be too high for you if you have significant side effects Steveyank. Again sorry for the late reply, I just now saw this post.

Hi! Thanks for all of the info here. I have just been on entocort with no results and increasing side effects, so am finally ready to go back to 6-MP. It worked for me for three years but I went off of it because the nausea started to get really bad. That was 10 years ago. Since the 6-MP I have had minor flares and used Aza for one, it worked great but my liver enzymes skyrocketed. I was already in remission after ony 3 months of it. I wish I could use it again. I've been researching cannabis vs 6-MP and while I like that cannabis has less side effects, I want to achieve remission again. I have been Mostly concerned by the risk of lymphoma but I've found that I'm not in the high risk age or gender so will try it again, this time using nabalone for the nausea.
What dose were you taking mtngrl55? I wonder if maybe the dose for you was a little high. Also if your liver enzymes went up then you could talk to your doctor about trying a low dose of 6MP with Allopurinol. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2659140/ Good luck!
__________________
Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
10-23-2015, 09:58 AM   #41
mtngrl55
 
Join Date: Jul 2012
Location: Brandon, Manitoba
Thanks Jennifer. I see my Dr this week and will find out then what he has planned but will remember allopurinol if needed.
11-13-2015, 08:00 PM   #42
smp209
 
Join Date: Nov 2012
Hi all,

I've been on 6MP for nearly 18 years, last flare was 12 years ago. My previous GI was adamant about me staying on it, saying that if I got off I would have a flare. I recently found a new GI who really listens to my concerns and questions instead of just shooting them down. The second he heard how long I had been on 6MP he recommended that I go off. He said that the longer you're on 6MP the greater your risk for things like lymphoma. He said he has taken several patients off of it, some of whom are now on no medication at all. I would love to go off of it, as I have been concerned about the potential side effects for a long time.

I'm just wondering if anyone on here has ever gone off of 6MP and how it went for you?
11-13-2015, 10:19 PM   #43
ronroush7
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I am on the same dosage as you. I was on a higher dosage but then they said there was too much in my blood. I believe my hair has thinned out some from it.
11-18-2015, 10:41 PM   #44
samman
 
Join Date: Mar 2015
Location: Corona, California
smp209, So if he took you off of it did you get any problems? Also how long have you been off of it. I was planning on taking it for a while then stopping for a while and asking my doctor if that is a possibility. Supposedly cancer risks increase as well if you keep crohns active too...
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Diagnosed:1/2015 but had flare 4 years earlier without knowing it could be Crohns
Currently: 6MP, Protonix
Previously Took: Lialda, Prednisone
Areas: Stomach, Duodenum, Colon
11-19-2015, 05:21 AM   #45
smp209
 
Join Date: Nov 2012
Hi Samman. I haven't gone off of it just yet, he wants to do some tests to see if there is any inflammation/disease still in my intestine first. That will help determine if I go off it or not. I was hoping to hear from others who had gone off of 6MP, because I've been on so long that I'm nervous to get off of it.
01-24-2016, 05:06 PM   #46
jfrahill
 
Join Date: Jan 2016
Location: Rochester, New York
For those on 6MP - I found out I had Crohn's after my first surgery (they thought it was Colitis) in '95. I was on 6MP for ~~ 10-12 yrs., only needed 50mg daily. Had blood work checked monthly for signs of problems with my liver. The longer you are on 6MP the higher your risk for lymphoma.

Three + years ago I started weaning myself off of 6MP. I succeeded. The only thing I take now is Imodium to slow my system down (have high metabolism), and I eat very healthy. Eggs/yogurt for breakfast, salads for lunch, steak/fish for dinner. lots of fruits & veggies.

They detected I had Crohn's when I was 40, I'm now 63, I hope to work another 10 years, and I won't stop learning, growing, knowing, until well into my 80's.
01-25-2016, 07:29 AM   #47
smp209
 
Join Date: Nov 2012
jfrahill your post was so wonderful to read! I'm so happy to hear of someone who has been able to go off of 6MP successfully. I too eat very healthy and workout daily, so I think that will help me go off of it. I just had some tests that show I don't have any inflammation, so I should be hearing from my doctor today to discuss it further.

Thank you so much for responding!
01-25-2016, 09:38 AM   #48
jfrahill
 
Join Date: Jan 2016
Location: Rochester, New York
smp209 - never doubt what you can do. Part of any healing process is the patient believing in themselves & the path they are on. My journey is not over by a long shot. I have two daughters who get colonoscopies every year, not just for Crohn's, but my ex (an ex for very different reasons), has FAP (familial adenoma polyposis) and just recently had what's called a Full Whipple procedure - part of her duodenum & pancreas removed - near stage 4 cancer. So keep it positive. Working out...I changed from running to walking 30 minutes a day after work. I still get eh physical & mental benefits. Let me know how it goes, and know you've got someone in your corner.
09-07-2016, 06:58 PM   #49
mom5272
 
Join Date: Aug 2010
Location: Virginia
I've been on 6MP for almost 20 years.. always done great on it but now i'm having major skin problems...warts, keratosis, brown spots..spreading like wildfire. I'm so upset because this has been a miracle drug for me and now i'm afraid of developing skin cancer. Seeing a new GI DR this Friday...
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Crohn's Disease since 1992
6MP 100mg daily
Prednisone when occasionally flare
06-05-2017, 01:51 PM   #50
CrawlThenWalk
 
Join Date: Jun 2017
Location: Virginia Beach, Virginia
Like mom5272 I also have developed a lot of flat warts, keratosis and skin tags. I have been on Imuran for 22 years. I have tapered down to 50mg daily from starting dosage of 150mg. I was diagnosed with Darier's disease earlier this year, which is a rare skin condition. I also have Rosacea. I've speculated that these conditions are either related to my Crohn's, Imuran, or both. I probably will never really know. I have traveled the world to surf and have spent a good bit of time in the sun. I'm sure that wasn't too helpful. Anyway, I've been in remission for 18 years. I've had out of range liver enzymes on blood tests due to Imuran. I elected to say on Imuran because my quality of life is VASTLY improved. Even if the Imuran shortens my life in some way, I'm living a high quality life for many years. Long term use - It's a risk/benefit analysis that is unique to each person's disease experience.
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