About this Support Group

A support group focused on treatment of IBD using Imuran, Azathioprine and 6-MP.

A place to gain some words of encouragement, share your tips, experiences/side effects on these meds and any information/research you may have discovered about the medication as it relates to IBD treatment.

If you have any other helpful readings please post them below and they will be considered for the main post of this group for quick access to info:

Fact Sheet: Azathioprine/6MP Drug Treatment Information
http://www.nacc.org.uk/downloads/fac...ioprine6MP.pdf

Members

Agent X20, aideen33, Allison M, AllyNZ, aloe, Amanda89, Amandarud08, Ands, anmonk, archaeopteryx, AstridYam, AussieChick, Awme, awoenker12, Ayanna, Bamafan94, Beach bum, Becks35, bita, Bogi, bonniebetts, Book Diva, BrennieJoyce, Brgood, Bruno, buttons, BWNTB06, Carl207, carlbeggins, CarolinAlaska, Carrie171087, Casey Baudelaire, Catherine, Cbanner, Cecil, Cherry04, Christi, CJermalowicz, cjh, cntrygrl504, coolbeans, Cozmo, cre, Crohn's chic, crohnie1800, CrohnsChicago, CrohnsSisterKate, Cupkatemom, Daisy G, Daisy123, daisy98, Darren Coates, Davebc, DaveNotRoach, DD2020, deardoc, DEmberton, dreamintwilight, Dyana, e01rnesto, ebonyvb, Ejay66, eleanor_rigby, Ellen_M, Ellowyne, EmilyElizabeth, emily_v, emmaaaargh, Faye Faye xx, fewdalord, FlashGordon, force7r, FrankieFredericks, FruitPastel, GABoy, Gavin Mc, gemling, gemmafer, ginar695, Glass Half Full, Goku123, Goofychicken, grandmajese, greeneyes, GreenwichUK, Grugsley, hawkeye, Heat92627, heidibz, hetzbaby, HorseLover!!, houston, IAmTheWalrus, Ian_H, IBDlivingfree, InkyStinky, IrritableBob, It takes Guts, jackkat, jacktin, Jag23, JaimeM, james's mum, jamesmom, Jenbob, Jennifer, Jenninmn, jessicashea685, Jodyanne63, joepreston607, Johnatron, Johnnysmom, Josephine, Juuh, Kaitlyn, KarlieK, kat-y, Kate gr, Kate5171, KaylaJB, kelly81, kelsihw, Kendra Cox, kh216, Khaley, KHCD5, kiwigirl, Kiwiindubai, krika, Kvanbeek, Kyle.h, Lady Organic, Ladyslipper, Layla, LCATC945, Leed2713, leloupaccroupi, lew-e, LewisS, lilly12, Lilyworm, Lisa534, Ljfurn, LNS87, long time crohnie, lookame, Lottie93, lourosa71, lowone, lservies, Lyssa, M West, Madhu, Maegans mom, Mallory92, mamalana, Matthew G, MEGANSMOM, meghna795, MelBurk, michelle222, MichelleE, Mike58, mikefromoz, MirrorBride, miry, Mojo_JoJo, mommaof2, momofthree, momofzach, mousesjca, MrsHH, mstirling, MsZombie, myboy12, mygirl, mzlateah, NatashaChampion, nelsonshan, NickyP, nikimazur, NinaZoraida, nolamom, Noonie, NurseAdam, NuttyGuts, ozjay, Pacerdhs, Panza, Patrick Ashton, PaulsPain, paulwright, peter b, pjmel, Polaris, Pusheen, Reflection, RenGen, Rich_w, riyka, RNGirl, rollinstone, ronroush7, Saf, SamanthaLynn, SammyD, Sandi Creek, SarahLou, Saratay05, SArren, sarwhelp, SCAR2003, scrapr, seaneoin, seebee, selenabaroni, Shab, sharmistha.roy, sickinlk, Silverbird, silvermander, Skybird14, sleepallday, smack116, smartjweir, smiley95, songbird, spantar, Spershick, Stardust_Fiddle, starsparkle, Stepe91, Sunshine Cat, SupportiveMom, tdeangelis, The Mad Bagger, theOcean, tillylala, Tiwana, Tomas60, TonyS, traci0531, tracyandkevinp, Tryagain, ttowntiger87, Twbuto, Tyler M, Tyler9, upsetmom, utmelody, vanphuccity, Vantage26, WadeszWorld, wakil, wee_mee, Wendles, worriedboy, x0lou0x, Zac with no K, Zeppy321, zeroliger0, ZestforZen, zilla7777

I am on my 11th day of 75mg 6-MP after determining the combination of Prednisone and Asacol is just not enough to keep my flares under control for longer periods of time.

***UPDATE***So far the only side effect I have noticed and feel I can link to 6MP is the fatigue that hits me in waves through the day. While I know I was fatiguged from being in a flare for a while, this heavy level of fatigue didn't exist until after I started the med. It's like I get a sudden urge to just pass out my eyelids get so heavy and my body starts winding down. I also think the combo of pred is what keeps me up late or waking up SUPER early some nights unable to get back to sleep.


I'm curious to know if anyone has any information/tips on hair styling for women with curly hair. I am certain the Asacol and disease itself over the past year is what has taken a toll on my hear thinning it out significantly to where wearing it curly is not really an option anymore. I am hoping the 6-MP does not add to this as I have heard some people mention hair loss as a result of taking this medication.

I occasionally straighten it, but I am looking into the option of wigs (extensions are just WAY out of my budget). Preferably something that is durable and can be worn by a physically active person...and of course looks reasonably natural.

***2/25/14 UPDATE*** Well a year later since starting this post and The hair thinning continued on my hair my eyebrows and my eyelashes. Each time my dosage was upped the hair thinning got worse to the point I could see bald spaces around the top of my head and it looked as if I was losing hair though not much was falling out.

I talked to my doctor about it and since I am in remission and also because my TPMT tests have been a little odd (it is working for me at lower than normal dosages, but my body has an unusual response to metabolizing 6 - mp though nothing of major concern), we have decided to lower my dose of 6-mp. We are also doing a slow taper off of asacol (also known to cause hair thinning).

It has been about two months since the dose change. I can say that my hair seems to be getting slightly better with this medication adjustment. Hopefully the lowering of 6-mp and the eventual elimination of Asacol will keep me in remission. fingers crossed!

I've been on 50 mg of 6MP for a little over a month now. I haven't noticed any extreme hair loss. I, too, fear the hair loss that I've heard about with this medication. Hopefully, someone comes along with some tips.

Hi, I am the mother of a 17 year old girl who has been on aza for 13 months now. No side effects, still trying to get her levels in range.

Her hair seems to have improved since being on aza.

Please add me to the support group.

I have been on 50 mg of 6-mp for a month now. My inflammation markers are still increasing so my dose was upped today to 75 mg. Hope it works.

My 12 year old has been on 6mp for a year and a half now. They just doubled his dose, still trying to get the dose right.

CrohnsChicago said:

I am on my 11th day of 75mg 6-MP after determining the combination of Prednisone and Asacol is just not enough to keep my flares under control for longer periods of time. So far no major side effects except for maybe an occasional mild headache/sinus discomfort.

I'm curious to know if anyone has any information/tips on hair styling for women with curly hair. I am certain the Asacol and disease itself over the past year is what has taken a toll on my hear thinning it out significantly to where wearing it curly is not really an option anymore. I am hoping the 6-MP does not add to this as I have heard some people mention hair loss as a result of taking this medication.

I occasionally straighten it, but I am looking into the option of wigs (extensions are just WAY out of my budget). Preferably something that is durable and can be worn by a physically active person...and of course looks reasonably natural.

Did you check your thyroid? If that's off it can cause thinning hair

hawkeye said:

Did you check your thyroid? If that's off it can cause thinning hair

I haven't had it tested in about 2 years...i think...I get so many blood tests these days it's hard to keep up off the top of my head. I know hair thinning is also common in my mom's side. In addition my dad had thyroid issues as does my grandma (my grandma is going bald a bit)

Probably should pay more attention but I definitely know over the past 12 months since my first flare it has become a lot more noticeable.

Thanks for the suggestion.

***UPDATE: I actually just pulled my blood results (I like to keep records). My last TSH test was in August 2012 and my results were 3.88 which is well within the normal range I believe so unless there's a test I'm not receiving yet I am going to say it has to be the crohn's/meds combo.

I suppose i should join this club too.
My 15.5 year old is starting imuran today...
They're starting her on 50mg for two weeks then increasing to 125mg
Shes also taking Pentasa ....and has also been put on flagyl.

6MP can cause hair loss unfortunately. If it helps, I didn't notice hair loss until after I had been taking it for over 10 years.

I spoke with a hair stylist friend of mine somewhat recently about the issue and she suggested having a shorter hair cut with layers to help add volume (shoulder length is ok, doesn't have to be extremely short) and if you dye your hair darker, to stop and possibly even go a shade or two lighter.

I've been dying mine black for years but with the hair loss, it starts to look like I'm balding so I'm gradually lightening up the color (grew the roots out some, got a short A line hair cut and dyed the roots a rich chocolate brown instead of touching up the black).

I'm sorry I don't have any info on wigs or anything of that nature.

I started imuran 6 weeks ago, and am tapering off prednisone. I feel better for the most part. I was told that hunger is a side effect to prednisone but I totally never feel hungry and force myself to eat in order to take my pills and because I know I should. Does anyone else have this problem?

The hunger / increased appetite has been more noticeable sometimes when I've had to take a round of prednisone for a flare than others, the same with the insomnia.

But I'm on prednisone and still not hungry at all really. I am definitely noticing the insomnia though.

The hunger level has either been normal or ravenous / continually snacky, never had the lack of appetite. The next time I am on pred and have insomnia, I have vowed to take Gravol before bed.

Gravol and I don't tend to get along, I pretty much nap through my nights at this point as nothing seems to help my insomnia.

Im usually crazy hungry on pred but this time I toggle between the same hungers hawkeye has.I Typically only have no appetite when something like my symptoms are bothering me Or im under stress

My big concern is that I haven't had an appetite for 3 months, ever since I was hospitalized and found out I have IBD. Though I am now starting to feel better with the imuran, I'm still really having a hard time with getting my appetite back, which is making it hard to stop losing weight.

well while on the pred make sure you are drinking plenty of water to flush out your system and reducing your sodium intake to prevent water retention which is very common and a common cause for the bloating, weight gain (as well as increased hunger). My doctor also told me increased water intake on 6-MP was good too because it helps your body flush out toxins and process the meds better.

The only other suggestion I can make is to find ways to be a bit more physically active if you are well and of course choose healthier, safer options for food as often as possible being mindful of portions. As you taper down off of pred you will start to hopefully notice some of the weight/bloating go down, but for some folks it may take a bit longer. The rest it seems will be up to you to control your diet and exercise.

Hopefully it doesn't affect you too harshly. Just continue to be mindful of your dietary habits while on pred that's about all most of us can do.

It took me almost... 6 months for my Aza to start working (well, I was only on 35mg half the time, but that's another story) but I feel like it's finally starting to work and I am so relieved!! When I first started I had to force myself to eat and I was dropping weight like nobody's business but now I have an appetite that rivals my prednisone munchies and I'm finally gaining weight again

Only thing is that my hair's thinned out tremendously - but to be honest, sometimes it was a little too thick to deal with before. Anyway, I just wanted to share, and say I hope everyone's doing well.

So here is my question....if you are on pred for the beginning of it all at what point did you all realize it was working for you? Was it the continued lack of symptoms that was initially Induced by the prednisone?

Or were there still some signs of things not being well after stopping pred and then eventually the 6mp/aza/imuran kicked in?
I hope my question made sense lol

Sorry to change the subject.
My 15 year old started taking imuran along with her pentasa and antibiotics a few days ago and the fatigue and nausea have already started...how long do these side effects last?

Sorry to hear that she is having side effects. I found that if I take 6mp right before I go to bed, it helped with the nausea and it might even help the fatigue as well.
Good luck with it.

upsetmom said:

Sorry to change the subject.
My 15 year old started taking imuran along with her pentasa and antibiotics a few days ago and the fatigue and nausea have already started...how long do these side effects last?

I found that the fatigue tends to stick around, I've been on imuran for about 7 weeks now. The nausea passed for the most part after a couple weeks. I still occasionally get nausea, but its not constant. I've noticed the longer I'm on the imuran and the less prednisone I'm on the more energy I seem to get, whether that's because I'm finally getting better or what I'm not sure. Hopefully that helps you.

My sons been on 6-MP since mid December. We started to see a real difference by the end of January, tummy pain gone and more energy returning.

However, last 2 weeks energy levels been terrible. He is needing 10/11 hours sleep a night just to get through day at school.

Saw GI Monday and generally they are pleased with him, height gone up at last. They've tested blood for various difference things to check problem with tiredness. Hoping it is just iron levels and not 6-MP, as we do think it is working.

Xxx

CrohnsChicago said:

So here is my question....if you are on pred for the beginning of it all at what point did you all realize it was working for you? Was it the continued lack of symptoms that was initially Induced by the prednisone?

Or were there still some signs of things not being well after stopping pred and then eventually the 6mp/aza/imuran kicked in?
I hope my question made sense lol

I started to notice I was waking up less in the night to run to the bathroom and the pain started to lessen. More recently I have had more energy and just felt better all around. Still not feeling 100% but I'm also not quite up to the full dose of up imuran yet so hopefully once I get there I will be feeling more like the healthy me.

I have been on 50mg of 6-MP for almost two years now. It has definitely worked to lower the inflammation levels in my body.

CrohnsChicago said:

So here is my question....if you are on pred for the beginning of it all at what point did you all realize it was working for you? Was it the continued lack of symptoms that was initially Induced by the prednisone?

Or were there still some signs of things not being well after stopping pred and then eventually the 6mp/aza/imuran kicked in?
I hope my question made sense lol

For me I knew it was working once I had tapered off Prednisone without having symptoms return.

I have been on Imuran for 12 years. Except for the 8 months I came off of it in 2006. I was hoping to get pregnant during that time but instead, when the Imuran got out of my system I had a major flare-up that I honestly thought was going to kill me. So I went back on the Imuran, and don't intend to come off of it again.
I don't remember ever having any side effects with this medicine. I know it takes several months to get in your system though. I just know when it gets in my system I start feeling lots better.
CrohnsChicago,
I'm not an expert on the hair loss, but it's been my experience that when I'm going into a flare and sometimes during the flare, my hair starts to fall out. I have a very thick head of hair so I don't miss it just by looking at it. But when I wash it, brush it, run my hand through it, it comes out in handfuls. I mean a lot more than what is normal. I find it all over furniture, my clothes, the carpet. I've never read this anywhere as a symptom of the disease, but I think it has more to do with certain vitamin defiencies than anything else. Because when the Crohn's is flaring up, your food is not being digested properly. So you lose vitamins and all the other good stuff you need. That's one way I know mine is about to flare up. My hair starts falling out. This has happened to me all 3 times my Crohn's has flared. I thought at first it was the medicine, but then it happened at a time I hadn't changed medicines. So I consider it a symptom of the disease because of the loss of vitamins.
Hope that was helpful!

Telangectasia Effluvium - hair loss associated with major life crises. Corresponds with major stressors, probably includes bad Crohn's flares. Hair usually returns 3-4 months later with the normal cycle of growth.