Question:

Hi Roy,    Maybe I’m one of the 5% who’s experienced side-effects with 6mp so here’s what it was like. For the first month or so, I was throwing up just about non-stop and nauseaus the rest of the time. I took prilosec and it stopped immediately. Within a week of feeling better on prilosec, I stopped the prilosec and had no more troubles on 6mp. I stayed with it, went into a symptom-free remission (my one and only in 7 years) and have been there for close to 5 months. I obviously have nothing to complain about with this drug and am thrilled that that’s the only price I’ve had to pay. Of course people need to be aware of the potential trouble that lay down the imuran/6mp path. Some folks get liver problems & others just get too immuno-suppressed and many just don’t find that it works for them. Regular(every other week) blood work is required to be clear on your status but this is a great drug when it works. I think the doctors are right on this one. Actually I basically think prednisone(No matter how much I hate it) is an amazing drug without which there’d be a lot less of us sick folks around(alive). I hate the side effects but I can’t deny that it’s pulled me out of the hospital in a matter of days many times. Of course, if doctors were required to take a year’s worth of prednisone before they got their md’s then we’d all have a lot less trouble with their lack of understanding about the nature of that drug, but 6mp is a nice one when it works –     Mick

Response:

I have been on most of the drugs you mentioned and I didn’t think they helped and always ended up having surgery anyway.  I have been on 6-MP for almost four years now and thought it has keep me out of surgery and fortunately I have not experienced any of the side effects common with this drug.  I take it mostly for the fistula tracks , but I also take Cipro and Flagyl for the Crohns. Good luck

Response:

I have been on most of the drugs you mentioned and I didn’t think they helped and always ended up having surgery anyway.  I have been on 6-MP for almost four years now and thought it has keep me out of surgery and fortunately I have not experienced any of the side effects common with this drug.  

Great you are free of side effects, but what are the side effects of this drug? I just received a press report from two doctors who will be presenting a major study at the annual GI convention and who concluded that this is a safe drug. Out of 503 patients over a 25 years period only 5% developed side effects. I tend not to trust doctors’ believe in the safety of their drugs (once upon a time they also argued that perdnisome was a "miracle cure" for IBD) but if we, sufferers, have been experiencing side effects of 6-MP then maybe we should talk about it. Roy deCarvalho

Response:

I take 6-MP for crohn’s, not UC.  I’ve been taking it since April with very good results.  I have not had a flare since March, and my blood work has always been normal.  I hope this helps! Carol

Response:

I also take 6-MP for Crohn`s and have been on 100 mg a day for 3 years now. Been feeling great and haven`t had a flare since I`ve been on it. Gotta have your blood checked every 2 months but worth the trouble. 6-MP takes about 4 months to  kick in, so my Doc slowly weened me off the Pred so at the end of 4 months I was completely off Prednisone and strickly on 6-MP. Talk to your Dr. about it, might be worth a try. Vinnie

Response:

Anyone got any experience of taking 6-MP for UC?.  Currently on Pred (10mg and decreasin) and Asacol (800mg, 3 x a day). Ta Tony Howard

Response:

Good news/bad news.  Prescribed today for perianal Crohn’s.  Any advice appreciated. Love & Peace, Connie

Response:

Get your blood tests! Debs – Hide quoted text — Show quoted text – Good news/bad news.  Prescribed today for perianal Crohn’s.  Any advice appreciated. Love & Peace, Connie

Response:

immunomodulator.  typical risks associated.  watch your bloods.  read the caution info that comes with it, it all applies…watch for the side effects it mentions. jeffy

– Hide quoted text — Show quoted text – Good news/bad news.  Prescribed today for perianal Crohn’s.  Any advice appreciated. Love & Peace, Connie

Response:

Hi Connie! 6MP has literally been my lifesaver!  By getting me on the right dose I have regained my life, fistula free.  Like Deb said, get your blood tested regularly.  Some doctors begin with every other week, mine began with every month and we did that for several years.  I’m finally stable enough that I get my blood tested every two weeks.  (Hmm….still haven’t heard from GI about latest blood test, guess I need to call again, damn!)  I always call, this way I know the results and I know they’ve been looked at by my GI.  There was one time that the lab called my GI with the results and he called me, at 10 p.m., so I would not take the next dose.  There can be serious liver damage.  Generally, a CBC is enough, though LFT’s can be watched too if circumstances.  I have both monitored because of prior problems with my LFT’s and the possibility of another medication effecting my liver. Good luck! mgbio – Hide quoted text — Show quoted text – Good news/bad news.  Prescribed today for perianal Crohn’s.  Any advice appreciated. Love & Peace, Connie

Response:

Great for you mgbio. Glad you found something that works so well! Faisal

– Hide quoted text — Show quoted text – Hi Connie! 6MP has literally been my lifesaver!  By getting me on the right dose I have regained my life, fistula free.  Like Deb said, get your blood tested regularly.  Some doctors begin with every other week, mine began with every month and we did that for several years.  I’m finally stable enough that I get my blood tested every two weeks.  (Hmm….still haven’t heard from GI about latest blood test, guess I need to call again, damn!)  I always call, this way I know the results and I know they’ve been looked at by my GI.  There was one time that the lab called my GI with the results and he called me, at 10 p.m., so I would not take the next dose.  There can be serious liver damage.  Generally, a CBC is enough, though LFT’s can be watched too if circumstances.  I have both monitored because of prior problems with my LFT’s and the possibility of another medication effecting my liver. Good luck! mgbio Good news/bad news.  Prescribed today for perianal Crohn’s.  Any advice appreciated. Love & Peace, Connie

Response:

Thanks Faisal.  I hope you find something too! mgbio – Hide quoted text — Show quoted text – Great for you mgbio. Glad you found something that works so well! Faisal Hi Connie! 6MP has literally been my lifesaver!  By getting me on the right dose I have regained my life, fistula free.  Like Deb said, get your blood tested regularly.  Some doctors begin with every other week, mine began with every month and we did that for several years.  I’m finally stable enough that I get my blood tested every two weeks.  (Hmm….still haven’t heard from GI about latest blood test, guess I need to call again, damn!)  I always call, this way I know the results and I know they’ve been looked at by my GI.  There was one time that the lab called my GI with the results and he called me, at 10 p.m., so I would not take the next dose.  There can be serious liver damage.  Generally, a CBC is enough, though LFT’s can be watched too if circumstances.  I have both monitored because of prior problems with my LFT’s and the possibility of another medication effecting my liver. Good luck! mgbio Good news/bad news.  Prescribed today for perianal Crohn’s.  Any advice appreciated. Love & Peace, Connie

Response:

immunomodulator.  typical risks associated.  watch your bloods.  read the caution info that comes with it, it all applies…watch for the side effects it mentions. jeffy Good news/bad news.  Prescribed today for perianal Crohn’s.  Any advice appreciated. Love & Peace, Connie

and darn it you cannot drink…there is risk of liver damage with 6mp anyway…so no booze for christmas or new years(i will have one sip of champagne..thats it..i gave up my favorite sam adams beer) like everyone said..get your blood work done…and if u get nauseated..my pharmacist(it was a weekend and i didnt want to hassle my gi for this) said i could take the 6mp at night as long as i didnt ever split the dosage…that made a lot of difference..but i still needed a scrip for compazine…which i still need here and there..diet coke also helps the nausea..so does chai tea..and so does salty stuff which i usually hate…i am NOT a potato chip eater at all..but now we keep them around..thats the worst side effect i have actually felt from 6mp..i have been on it since june..i am still getting small bouts of bleeding, skin breakouts and pain and D…but the bouts clear up faster…and i am stronger…i think its worth the risks ..at least for me it is..the pred didnt help me this last time…even 60 mg for 6 months… good luck annie

Response:

I’ve been on 6MP for about 2 weeks now, and my fears of potential adverse effects are causing me a ton of anxiety. I just did about 2 weeks in the hospital for a C. Diff infection and I’m about 112 lbs (I’m a 6 foot 23 year old male). I’m very weak. I’m alsotaking 40mg of Pred. Since these factors, and the disease itself, are already suppressing my immune system, should I quit the 6MP? My IBD is supposed healing, so I don’t see the point of exposing myself to further illness.

Sometimes we are faced with difficult choices, as we all know. Those with CD or UC are often faced with a series of choices between evils of varying degree. In my mind, steroids are an essential part of the treatment of serious flares but are also one of the greater evils we face. In my case, Pred caused a rare condition called avascular necrosis and as a result, both my hips are deteriorating and will have to be replaced. I am on 6MP and through its use I have been Pred free for over 3 years. The benefits of being steroid free ar, in my case, mainly due to my family being able to tolerate my presence (I was an absolute jerk on Pred). The side effects of 6MP are much less severe than Pred and are more along the lines of nuisance than major (except when the med affects you white blood count). Regular blood tests can keep that danger to a minimum. It was thought that 6MP might cause a higher than "normal population" incidence of brain tumours but the latest statistics would indicate that that is not true. Good luck with your choices. Don’t become overwhelmed by all the information and scary stuff out there. And don’t be afraid to take the occasional chance. In a lot of cases you are more likely to be run over by a bus on your way to the drug store than be affected by the drug you are buying. Regards, Michael

Response:

I’ve been on 6MP for about 2 weeks now, and my fears of potential adverse effects are causing me a ton of anxiety. I just did about 2 weeks in the hospital for a C. Diff infection and I’m about 112 lbs (I’m a 6 foot 23 year old male). I’m very weak. I’m alsotaking 40mg of Pred. Since these factors, and the disease itself, are already suppressing my immune system, should I quit the 6MP? My IBD is supposed healing, so I don’t see the point of exposing myself to further illness.

Response:

I’ve been on 6MP for about 2 weeks now, and my fears of potential adverse effects are causing me a ton of anxiety. I just did about 2 weeks in the hospital for a C. Diff infection and I’m about 112 lbs (I’m a 6 foot 23 year old male). I’m very weak. I’m alsotaking 40mg of Pred. Since these factors, and the disease itself, are already suppressing my immune system, should I quit the 6MP? My IBD is supposed healing, so I don’t see the point of exposing myself to further illness.

You should be taking the highest dose of 6-MP that doesn’t seriously reduce your white count.  The Dr. should be ordering 2 to 3 blood tests a month until a stable dosage is indicated, then monthly testing after that.  I’ve been on 6-MP now for over a year without any ‘noticeable’ side effects (knock on wood) except for the fluctuating white count requiring adjustments to the amount of 6-MP I’m taking.  This is my understanding.  Your mileage may vary, California somewhat less….  :-) Prednisone is no longer an option for me.  I can’t take it more than a few days before my feet swell up to where I can no longer walk comfortably.  I used to think of  Pred. as the wonder drug but no longer…                                                                 —john. — — Railroad Enthusiast – Pipe Organ Owner – Software Engineer –

Response:

Why would you have to come off of your meds? Just take the probiotics at a time well separated from any antibiotic you are taking. Store yogurt is made with chemicals. Real yogurt (with Lactobacillus acidophilus), has the same problems that the probiotics have. Probiotics offer a whole lot more different organisms than real yogurt. Boyd — "The cure for boredom is curiosity. There is no cure for curiosity." (Ellen Parr- author)

– Hide quoted text — Show quoted text – I started taking 6-mp last December after I ended up in the ER.  The Dr started me at 75mg, but found that after only a few months the efficacy of the drug was not in the range it needed to be at.  I have since increased to 100mg which seems to be holding well.  it is important to have periodic enzyme level checks done.  I believe this is done through a company called Prometheus.  This test measures how well the drug is being absorbed and received by the body. That being said, I too am interested in probiotics, however I don’t believe my Dr would ever recommend me coming off a medication that keeps me stable and for all practical purposes in remission.  What about yogurt?  what can a probiotic provide beyond the bacteria provided there? — Paul CD c/o 98

Response:

. Also my doctor mentioned Remicade before, but now he says I can’t have it unless I am taking the 6-mp. I was informed that previous studies did show that you would do better w remicade if you were on 6 mp. But last month I was informed by my doc this is no longer true. Apparewntly a new study came out which says it makes no difference. SO talk w your doc re this.

Response:

Eden, try the website vitaminshoppe.com  They have a good selection of vitamins so I assume they will also have probiotics. I have had very good luck with them in the past, no personal connection. Debs P.S. They also discount

We have Vitamin Shoppe’s here in NY, practically on every corner. And I have a dicount card, so I will be headed there on Monday. Thanks guys for all the names, I have them all written down. I think my doc will still want me to take the 6-mp though. I am going to try to start with a low dose and the probiotics. I am not sure if the reasoning behind the Remicade-6-mp combo is because of the research or because he personally feels there wouldn’t be enough results with just the remicade. I got the impression that it was a personal preference, but he didn’t specifically say. I must say, I do really like and trust him. My last dr was an absolute moron. I suffered in ignorance for 3 years. My diagnosis went like this: "Well you do have Crohn’s Disease. We weren’t expecting that. you will have it for the rest of your life. Take these meds, come back in a month." LOL. I had never even heard of CD before that. He did have the absolute best nurse in the world though. Why she was working for him, I’ll never know. Well thanks again everyone. Eden

Response:

I started taking 6-mp last December after I ended up in the ER.  The Dr started me at 75mg, but found that after only a few months the efficacy of the drug was not in the range it needed to be at.  I have since increased to 100mg which seems to be holding well.  it is important to have periodic enzyme level checks done.  I believe this is done through a company called Prometheus.  This test measures how well the drug is being absorbed and received by the body. That being said, I too am interested in probiotics, however I don’t believe my Dr would ever recommend me coming off a medication that keeps me stable and for all practical purposes in remission.  What about yogurt?  what can a probiotic provide beyond the bacteria provided there? — Paul CD c/o 98

Response:

Eden, try the website vitaminshoppe.com  They have a good selection of vitamins so I assume they will also have probiotics. I have had very good luck with them in the past, no personal connection. Debs P.S. They also discount

Response:

Hi I’ve been on Azathioprine (same as 6-MP I believe) and have managed to do without Pred for almost a year (a record for me) and for the last month have stopped the ASACOL. No side effects after the first few weeks but monthly blood tests are important. I’m on 175 mg per day. I don’t know about the pregnancy side being male sorry Geoff Hi everyone —   I have Crohn’s and about a month ago was hospitalized for a blockage. I

have been on Prednisone since, on a steady taper of 5 mg every four days. I started at 40 mg. I did have to go back up after the first week, but haven’t had any

problems since. I am also on Pentasa, 16 pills a day, and Protonix, 40 mg. I saw my GI Tuesday, and he really really wants me to start on 6-MP. He says that

judging by the fact that my stools get looser as I taper, I will be having problems when I go off the prednisone. I don’t want to stay on the prednisone, and he didn’t

really say that I should. I think he only uses it when absolutely necessary, which is wonderful. However, I am 28 and have no children. Sometime in the next few years I

would like to have children. I am not in any particular hurry, no definite plans, I just know one day I will want them. My GI says 6-mp is absolutely safe, just don’t

take it while you are actually pregnant. We’ve been using it for 30 yrs, he said. But I did a little research and I didn’t find much, but one site had this to say: Tell your doctor if you are pregnant or if you intend to have children.

There is a chance that this medicine may cause birth defects if either the male or female is taking it at the time of conception or if it is taken during pregnancy.

However, studies have not been done in humans. Mercaptopurine has been shown to cause damage to the fetus in rats and increases the risk of miscarriage or

premature births in humans. In addition, many cancer medicines may cause sterility which could be permanent. Although this has not been reported with this medicine, the possibility should be kept in mind. Be sure that you have discussed this with your doctor before taking this

medicine. It is best to use some kind of birth control while you are taking mercaptopurine. Tell your doctor right away if you think you have become pregnant while taking mercaptopurine <http://my.webmd.com/content/asset/uspdi.202350   Not very definite, but a little scary. I just don’t know what to think.

I did take it a few years ago for about 8 months, and it really never had much effect on my disease. I was having a lot of problems with anal abcesses then though,

and now my ileum is the problem. And I was only on 50mg that whole time. I know that I should be thinking that getting my disease in remission is more important

right now than pregnancy sometime down the road. But my disease has never been all that horrible, except for twice a year, when I have periods of extreme personal

stress. I can live with loose stools. I hardly ever have urgency or accidents. I guess I am just confused right now. Also my doctor mentioned Remicade before, but now

he says I can’t have it unless I am taking the 6-mp. The remicade makes me nervous too, but because it would only be one infusion, I feel a little better

about it. You just have to take the 6-mp for so long for it to even work.   Anyway, I guess what I am asking is for your thoughts on this, your

experiences with 6-mp. Maybe it can help me make up my mind. I have been considering just – Hide quoted text — Show quoted text – getting some eggs frozen, then I can take whatever they throw at me. Thanks, Eden

Response:

Just a suggestion, try taking some probiotics (good bacteria) to tighten up the stool. You can find the probiotics at wal~mart, walgreens, grocery, and health food stores. Try to find one with as many different strain as possible. This might help your stool and prevent you from needing the 6-mp. Hi Mike —    I have been reading all the posts about probiotics, and am interested. I have developed a nasty case of thrush with this round of prednisone. I looked at the pharmacy and all they had was Probiotica, which was just Lactobillus? something like that. Isn’t that basically the same thing as eating yogurt with active cultures? I don’t really know what to look for, or where. I am in New York, so I am sure I can find something. Do you have any suggestions as to brands or strains I should look for? Or is there a website with info I can go to? Thanks, Eden

I use Acidolpolis XTRA by Sundown, because they are cheap, but I take 3 to 4 times the recommended dose. Go to a GNC and look for Probiotic Plus. That one is reported to be a good one. Mike Please Visit www.ibdcure.com and sign the petition for an IBD postage stamp. All opinions expressed are mine unless otherwise noted. Copyright

Question:

Does anyone know what can help a very dreaded heavy menstral cycle?  I have cycles that totally drain me (no pun intended).  Seriously, though, is there anything that can help?  I have been examined and only have one very small fibroid tumor, which the doctor feels could not be the cause of my heavy flow.  I am scared to get a hysterectomy, and have not been told I need one, yet my periods are so heavy and make me so tired, I can hardly function. Has anyone has success with taken cayenne pepper capsules?  Or any other ideas? Also, does anyone know "why" heart palpitations are more frequent during, and just before the menstal cycle? If anyone knows anything that could help, please email me personally. Thanks,

Response:

Does anyone know what can help a very dreaded heavy menstral cycle?  I have cycles that totally drain me (no pun intended).  Seriously, though, is there anything that can help?  I have been examined and only have one very small fibroid tumor, which the doctor feels could not be the cause of my heavy flow.  I am scared to get a hysterectomy, and have not been told I need one, yet my periods are so heavy and make me so tired, I can hardly function.

***Although I