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calace
New Member


Date Joined Nov 2009
Total Posts : 10
   Posted 11/12/2009 11:38 AM (GMT -7)   
Has anyone taken Imuran or 6mp to reduce Crohn's inflammation, and if so, how did you do and were there any side affects? I had a re-section 16 years ago, never been on medication (except for Questran to control diarrhea) and my inflammation markers are going up. But I feel pretty healthy every day except for joint pain and I'm nervous about starting medication. Any thoughts on this would be helpful.

bookgal77
Regular Member


Date Joined Jul 2009
Total Posts : 83
   Posted 11/12/2009 11:40 AM (GMT -7)   
I've been on both at different times. They both have long-term side effects that should be taken into consideration, but they definintely do the job they are supposed to (at least for me). The 6MP has some side effects up front that are harder to get used to, but after about 6 months I don't notice them anymore (it was hair loss and extreme fatigue...have both stopped now). I did not notice those with the Imuran but I know others have similar experiences with it. Like any prescription medication, it reacts differently to each person and it comes with its own benefits and risks. Good luck.
**32 year old female; Diagnosed with ulcerative colitis in 2001; diagnosis changed to Crohn's disease in 2009 (but still only impacts colon)
**Asacol (4800 mg daily), 6-MP (100 mg daily), Prednisone (10 mg daily...for a few more weeks), Nexium (40 mg daily)
**Previous meds: Colazal (allergic); Flagyl (off and on for rectal inflammation); Rowasa (enemas only when needed); various pain meds (but luckily none lately); iron IV infusions (when hemoglobin gets low)
**Thankfully only two major flare-ups...2001 and 2009. Hoping to have another 8 years in between the next one (sadly, I do know there will be a next one).


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 11/12/2009 1:00 PM (GMT -7)   
I've been on 6MP for over a decade along with a few other things (various doses of prednisone, pentasa at times, xifaxan). But the constant has been 6MP since my last resection in 1998. I have had trouble with my liver enzyme levels but not to the point that I have had to stop taking the medication. I believe it is one of the reasons I have been able to stay off the operating table for the last 11 years. As you can see from my signature, I had quite a time of it for a while and I believe that was because I went for 10 years without any maintenance medication. I was undiagnosed and untreated, but the disease was running amok in my intestines. The 6MP has kept things in check without any side effects that I have felt.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


calace
New Member


Date Joined Nov 2009
Total Posts : 10
   Posted 11/12/2009 1:16 PM (GMT -7)   
Thanks for your quick replies. I guess I have spent 16 years without meds and I don't feel too bad so I'm hesitant about starting meds. Trying to avoid other surgeries now though. Don't want to be a ticking time bomb.
Crohn's Disease since 1993 when I had a re-section. Only on Questran - no other meds. Three children. Inflammatory markers are slowly going up now, colonoscopy confirms inflammation. Joint pain, but other than some bad days, in good health.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 11/12/2009 1:20 PM (GMT -7)   
Hey Calace,

And welcome to Healingwell. I used to be like you in not wanting to take meds. I took no meds for almost 20 years. It ended abrubtly with an emergency resection due to a complete obstruction. I just would like to see you avoid any further problems, please do get on some type of maintainence med, you could avoid alot of problems in the future. Zanne and I both learned this lesson the hard way, and both are big proponents of maintainence meds now. Good luck!

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

calace
New Member


Date Joined Nov 2009
Total Posts : 10
   Posted 11/12/2009 1:30 PM (GMT -7)   
I am so nervous about starting meds. Is Imuran any better than 6mp? Those are my two choices. If I just let it go, is it possible to go from feeling good to suddenly having an obstruction with no warning? And the "increased chance of lymphoma" makes me absolutely crazy with fear. I don't want to go from feeling good to feeling bad.
Crohn's Disease since 1993 when I had a re-section. Only on Questran - no other meds. Three children. Inflammatory markers are slowly going up now, colonoscopy confirms inflammation. Joint pain, but other than some bad days, in good health.


Carnival Huckster
Regular Member


Date Joined Oct 2009
Total Posts : 159
   Posted 11/13/2009 8:35 AM (GMT -7)   
In my opinion Imuran is a bit heavy duty for someone who does not seem to be in any immediate danger. I was on it 10 or so years ago and it didn't do much for me and I didn't like the side effects. At the dose I was taking, I was under the impression that it halted all bone marrow production and I didn't like the sound of that at all. With that said, not taking any maintenance meds or at least following any special diet (SCD, Maker's Diet, 100% Raw Foods, etc) is asking for trouble. There are many new meds safer than Imuran becomming available (LDN and Wellbutrin as off-labels are very safe for maintenance and Entocort for short-term flare ups) but you kind of have to see which meds agree with you. I would definitely act now against the inflammation rather than playing the "wait and see" game.

+ 34 year old male
+ Crohn's Disease DX in 1997, doc said it was "moderate to severe"
+ Currently taking 9mg entocort and 40mg prozac
+ SCD for past 10 years
+ 4,000 mg MSM, Calcium, Vitamin D, Multivitamin, S. boulardii, Acidophilus
+ Section in lower jejunum is badly strictured (5mm wide opening continues for 10cm!) but otherwise no other problems in bowel
+ No surgeries so far


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 11/13/2009 8:56 AM (GMT -7)   
In answer to your questions, yes you can go from feeling fine to a complete obstruction in minutes, and then to a bowel perforation. I get obstructions from adhesions. I woke up last night with one. I had gone to bed feeling fine. By 2 in the afternoon I was fine again. But at this point my obstructions are not from scaring or active disease, at one point they were, and as Nanners said, it can be a very abrupt end to what we all think is remission.

Imuran and 6MP are basically the same drug. They start out differently when ingested but when the body breaks them down they are broken down into the same chemicals. At the dosages that CD patients take them the risks are not as great as they are when taken at high doses for chemo, but they are still there.

Only you and your doctor can decide what is right for you. You say you feel fine, but what do your labs and testing indicate? Why does your doctor want to start you on drugs now? How high are you inflammation markers? The joint pain is also a sign that damage is being done. How do you really feel against how you felt 5 years ago, 10 years ago?
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


Carnival Huckster
Regular Member


Date Joined Oct 2009
Total Posts : 159
   Posted 11/13/2009 11:09 AM (GMT -7)   
Imuran and 6MP are both lousy choices IMHO based on what you have described.... but your doctor is obviously more familiar with your case than any of us. I would start with the safer meds + maybe a quick dose of steroids to bring down the inflammation + diet first and THEN go to the heavy duty immuno-supressors or anti-TNF if those don't work. Even worse than Imuran, of course, is to take no action and land yourself in the hospital with another surgery and long-term immunosurpressors on top of that. Obstructions and perforations are an absolute mess and should obviously be avoided at almost any cost.


+ 34 year old male
+ Crohn's Disease DX in 1997, doc said it was "moderate to severe"
+ Currently taking 9mg entocort and 40mg prozac
+ SCD for past 10 years
+ 4,000 mg MSM, Calcium, Vitamin D, Multivitamin, S. boulardii, Acidophilus
+ Section in lower jejunum is badly strictured (5mm wide opening continues for 10cm!) but otherwise no other problems in bowel
+ No surgeries so far


calace
New Member


Date Joined Nov 2009
Total Posts : 10
   Posted 11/13/2009 12:15 PM (GMT -7)   
I was on Entecort low dose for 6 months and it didn't do anything. Inflammation markers (viewed from bloodwork every 3 months) continue to rise slowly. With Questran, I feel pretty good. I think doctor is worried that I am a time bomb since I haven't had any other meds in 16 years and my surgery was 16 years ago. That's a long time. I just don't feel as sick as many of these postings, but apparently my bloodwork (and colonoscopy) says otherwise! I appreciate all of these postings. It's helping me to come to terms with it.
Crohn's Disease since 1993 when I had a re-section. Only on Questran - no other meds. Three children. Inflammatory markers are slowly going up now, colonoscopy confirms inflammation. Joint pain, but other than some bad days, in good health.


Carnival Huckster
Regular Member


Date Joined Oct 2009
Total Posts : 159
   Posted 11/13/2009 2:05 PM (GMT -7)   
What about Pentasa or Asacol? Neither of those medications did anything for me, but some people swear by them. After that I would try LDN, Wellbutrin, and diet. If that doesn't work then I would use the maximum dose of Entocort for a few weeks. If that doesn't work then a short course of prednisone. If you are still having problems at that point I would then consider either Imuran / 6MP or Anti-TNF. If you go striaght to Imuran you are skipping over all of the safest options and going straight to the most dangerous class of medications IMHO.

+ 34 year old male
+ Crohn's Disease DX in 1997, doc said it was "moderate to severe"
+ Currently taking 9mg entocort and 40mg prozac
+ SCD for past 10 years
+ 4,000 mg MSM, Calcium, Vitamin D, Multivitamin, S. boulardii, Acidophilus
+ Section in lower jejunum is badly strictured (5mm wide opening continues for 10cm!) but otherwise no other problems in bowel
+ No surgeries so far


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 11/13/2009 3:15 PM (GMT -7)   
Furum Rule: 4. Use good judgement. NEVER rely on information or opinions exchanged via the forums or chat rooms to replace necessary, personal consultation(s) with qualified health or medical professionals to meet your individual health or medical needs. Remember that what's right or has worked for one person may not be what's right for you.


I would suggest asking your doctor (ie. a real doctor, not an internet doctor) what is more dangerous - Imuran or poorly treated IBD. I was on 6MP for 5 years and felt really well until I decided to get off of it(I had another reason to think about getting off meds) and realized I made a mistake.

Taking Imuran or 6MP under the supervision of a doctor is not dangerous. The lymphoma thing is highly controversial and I wouldn't think twice about it. You need to put things in perspective (ie. risk of flaring and surgery vs. a miniscule increase (if that) in the chance of lymphoma.

Good luck.
33 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. Proferrin iron pills.

Tried SCD, didn't work, now avoiding gluten and dairy.


Go Saskatchewan Roughriders!


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 11/13/2009 4:32 PM (GMT -7)   
I agree with Rider, you need to follow your doctors advice and what you feel you can "live" with in your heart and mind. But just to be clear, Questran does not treat Crohn's disease. It treats the symptom of Diarrhea as an off label use. Questran is a medication used for high cholesterol not for CD it is used off label for Diarrhea. So basically you have been un-treated for the past 16 years. It doesn't seem like its working for you if your inflammation markers are going up.

Also, there are many of us who have to use multiple drugs to bring inflammation under control. Once things are back in check we can start to wean off some medications and figure out what we need to stay on and what can go. I started out after my last resection on Prednisone (high dose), Pentasa and 6MP. All of these drugs work a bit differently and take different amounts of time to take effect. Eventually I was able to cut my prednisone dose down to a very minimal amount, get off Pentasa and cut the 6MP dose in half. I still have other drug options open to me if these stop working for me and more are coming down the pike.

I have tried diet alone, when I was undiagnosed. It was a complete failure for me. Perhaps for someone whose disease is under control, but for me, I will never go without some form of maintenance medication, its just a ticking time bomb.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


beave
Veteran Member


Date Joined Mar 2007
Total Posts : 1091
   Posted 11/13/2009 4:32 PM (GMT -7)   
Thanks for the voice of reason, Rider Fan. I was about to post something similar.

Carnival Huckster, you are flat-out exaggerating the risks of thiopurines and doing a disservice to other posters by doing so.

calace
New Member


Date Joined Nov 2009
Total Posts : 10
   Posted 11/13/2009 6:38 PM (GMT -7)   
Thanks again for all of the posts - I have been reading them carefully and pondering them today. Quite coincidentally, today I completely forgot to take the Questran in the morning. At 4pm, my body reminded me while I was walking my dogs. I almost didn't make it back in time. It was the ugly reminder that I am not healthy. Ugh.
Crohn's Disease since 1993 when I had a re-section. Only on Questran - no other meds. Three children. Inflammatory markers are slowly going up now, colonoscopy confirms inflammation. Joint pain, but other than some bad days, in good health.


Carnival Huckster
Regular Member


Date Joined Oct 2009
Total Posts : 159
   Posted 11/14/2009 12:21 PM (GMT -7)   
For those of you who are naysayers, I completely 100% disagree with the notion that you should blindly accept what your doctor says -- or for that matter what the profit-driven pharmaceutical industry says -- is safe without applying a healthy degree of skepticism. Does anyone remember Vioxx? Furthermore, you did not correctly cite the forum rules. I my post I said "I would try..." -- clearly I was reffering to my own set of personal circumstances / experiences and was not dispensing medical advice as you suggested. For those of you who want to blindly jump on the big pharma bandwagon, go ahead -- get right into bed with the same group of corporate interest who went after the cherry growers for posting information about the health benefits and anti-cancer properties of cherries on their web site.

+ 34 year old male
+ Crohn's Disease DX in 1997, doc said it was "moderate to severe"
+ Currently taking 9mg entocort and 40mg prozac
+ SCD for past 10 years
+ 4,000 mg MSM, Calcium, Vitamin D, Multivitamin, S. boulardii, Acidophilus
+ Section in lower jejunum is badly strictured (5mm wide opening continues for 10cm!) but otherwise no other problems in bowel
+ No surgeries so far


beave
Veteran Member


Date Joined Mar 2007
Total Posts : 1091
   Posted 11/14/2009 5:41 PM (GMT -7)   
C'mon, CH, if you're gonna spout off a conspiracy theory, at least come up with one that doesn't fall apart under basic scrutiny.  Big pharma bandwagon?  Really?  Imuran and 6mp have been around for decades, were not developed initially for IBD treatment, and, most importantly, are both well past their patent terms.  They're available as generic and are very inexpensive.  Big pharma barely makes a cent off them.  The *mounds* of research of their efficacy and relative safety does not come from big pharma, for they have no financial interest in the use of these meds in IBD.
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