Imuran/Azathioprine/6-MP Support Group

Crohn's Disease Forum

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CeeCeeGo said:
Well it looks like I am intolerant of 6MP as well as Aza/Imuran. Had really horrible side effects over the weekend similar to the ones I had with Aza.
Onwards and upwards to try another med - probably methotrexate.
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If the side effects are nausea related, have you tried taking them at night so that you sleep through the worst of the symptoms? Or taking a motion sickness or anti-nausea medication before hand?
 
I have noticed so far in my first 2 weeks of 6-mp that I am tired all the time and of course since they upped my steroids when they changed my meds, I can't sleep because I get insomnia from them. So fun little loop that I am in.

Sorry to hear that some of us are having such a rough time of it right now. Hopefully things will get better all around soon.

How is everyone else doing?
 
3 months in with 6mp and fistula has been closed for nearly 2 weeks, a bit of tiredness but no other side effects to report.
 
Jae doesn't seem to have side effects, but yesterday she had joint pain when we went for a walk, she still has really bad gas off and on. I'm not sure whether these are symptoms of undertreatment (we're no longer doing exclusive EEN, but she still gets as much formula - just added some foods - the gas started before the food...) She stopped to rest many times in our little walk due to her hips hurting :(. She's only been on the 6 MP a couple weeks. Fortunately tolerated the foods (GI wise) well.
 
Hi Guys
My side effects were temp of 38, unexpected bruising, severe headaches and a very stiff neck. These are almost identical to what I suffered after 3 weeks of Aza and that also affected my liver which then took 6 weeks to normalise. I was taking 25mg twice a day and had no nausea.
I spoke to my GI this morning and he told me to stop taking the 6MP immediately. He is of the view that I cannot tolerate this type of meds.
 
Yes, it definitely sounds like it's time to call it quits with these particular meds.

Hopefully the next med dos not cause any major side effects. Best of luck. :hug:


CeeCeeGo said:
Hi Guys
My side effects were temp of 38, unexpected bruising, severe headaches and a very stiff neck. These are almost identical to what I suffered after 3 weeks of Aza and that also affected my liver which then took 6 weeks to normalise. I was taking 25mg twice a day and had no nausea.
I spoke to my GI this morning and he told me to stop taking the 6MP immediately. He is of the view that I cannot tolerate this type of meds.
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Ceeceego,
I'm sorry that you have suffered such bad side effects with 6mp. I hope that you can find a medication that will treat your Crohn's Disease without bad side effects.
 
I have been suffering from crohns for many years one bowel resection and after the last flare up I was tested by a company in florida for gluten allergy, I sent a frozen sample of stool and a mouth swab. The results ccame back and I was 99% allergic to gluten, I had inherited a gene from each parent. since then have quit gluten and feel 100% better, am on Imuran and probiotics and that is it. do have some short flare ups but nothing that puts me down longer than a few days. I can go to many more outings and am enjoying life again. this company say's you can have a gluten allergy and not celiacs and i did have a test for celiacs and it was negative. food for thought...hope it helps...


upsetmom said:
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.
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Carol (CeeCeeGo), sorry about your terrible reaction. I hope you find something that is a much better fit for you.
 
Thanks to all of you for your support. Thankfully once I stopped the meds I started to feel much better very quickly and had a really good sleep last night.
:biggrin:
 
Hey I have been on aza since january and ... to be honest it isnt doing anything?
The only thing thats changed is I now have to have blood tests every 8 weeks to make sure the aza isnt doing any damage as I think it can affect your blood cell count? Im not 100% sure and im not trying to scare anyone away from using it, it just doesnt seem to work for me...yet im still taking it...
 
Ki3 said:
Hey I have been on aza since january and ... to be honest it isnt doing anything?
The only thing thats changed is I now have to have blood tests every 8 weeks to make sure the aza isnt doing any damage as I think it can affect your blood cell count? Im not 100% sure and im not trying to scare anyone away from using it, it just doesnt seem to work for me...yet im still taking it...
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My daughters GI said it can take anywhere from 3 to 6 months to start working.
 
Yeah I was told it would take 3 months to start working but nobody said it could take six?! I would be pretty annoyed if I take this drug for six months then turns out it doesnt work anyway! But thanks for saying that its nice to hear that its normal for it to not work yet and theres not just something wrong with me. ( well obviously there is or i wouldnt be on crohns forum lol)
 
Ask your GI and see what they say.
At first we were told 3 months....but at our last visit we saw a professor and he told us it can take up to 6 months.

Good luck and i hope you get better soon.
 
You can get your 6tg levels tested to see if they're within the therapeutic range, that should give you an idea of whether or not it should be working
 
Oh I've never heard of that before, I'll have to ask about that. They told me it should start to work after the first 3 months. I started in January so maybe its only just starting to work and I havnt noticed yet?
 
What dosage are you on? Has your GI discussed the possibility of increasing dosage with you? Dosage is typically weight-based for these meds and sometimes it does take upping the therapeutic dose to see any difference.


Ki3 said:
Oh I've never heard of that before, I'll have to ask about that. They told me it should start to work after the first 3 months. I started in January so maybe its only just starting to work and I havnt noticed yet?
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Yeah on my last hospital stay they said that they will up my dose as I am gaining weight so I can have more. Thanks for reminding me I will mention that when I go! xx
 
They told me it would take three months and were pretty pushy about it too. They wanted to put me on Infliximab, but I'm not ready to go there yet, so I refused - and after about maaaaybe five months it started working? So yeah - it did take a while for me.
 
To those who've been on the meds awhile: How did you know when your 6MP (or similar med) started working? What was the change like? Was it overnight or you just realized one day you were better? Please describe the "before med started working" you and the "now med is working" you, if you can... Thanks!
 
Well iv yet to be on it for 3 months but I stopped passing blood in stool almost immediately after starting it... I still have quite a bit of pain in my stomach although all my test have come back as if I am in remission, I'm assuming it's a gradual thing though, the longer your on it the more and more the mucosal layer heals... Next time you go to the GI or GP get them to do a 6tg level test, it will let you know whether or not your daughter is in the therapeutic range, which in turn should let you know why or why not she is feeling good or bad.
 
Cool, well it's good shes metabolizing it well, wait it out for a few months, should start seeing results in another 6 weeks, fingers crossed maybe even sooner? It definitely helped me a lot (I'm not even up to 3 months yet).
 
my doctor wants to put my on 50 mg of imuran 3 times a day, is that a lot to start with? I have bad reactions to EVERYTHING. I can't take steroids and the antibiotics made me so sick I couldn't stand it, and the bleeding got worse. I'm supposed to start taking it next week but I'm scared, he doesn't seem to care if the meds make me really sick. what's the point of taking something that you can't keep down?
 
grandmajese said:
my doctor wants to put my on 50 mg of imuran 3 times a day, is that a lot to start with? I have bad reactions to EVERYTHING. I can't take steroids and the antibiotics made me so sick I couldn't stand it, and the bleeding got worse. I'm supposed to start taking it next week but I'm scared, he doesn't seem to care if the meds make me really sick. what's the point of taking something that you can't keep down?
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I know it's impolite to ask a lady for her weight, but to answer that question we would need to know it... The standard is 2-2.5mg per kg body weight or about 1mg per lbs. You usually start with a lower dosage and then ramp up after 2 months or so. I assume you aren't 150lbs so 50mg 2x times per day seems more appropriate. Has your doc discussed biologics instead or in combination with imuran?

As to meds making you sick, I say try it and you'll see. You might just be able to tolerate imuran fine.
 
After being on 100mg Aza for a month, I developed pancreatitis. I've stopped it of course, which is a shame since I was seeing positive improvement on the colitis front, but of course it's not worth trashing my pancreas for this.

My last dose was about 48 hours ago and I already feel much better.
 
my GI is looking to introduce 6mp to the mix. im on remicade buts its no longer effective and its bothering my liver. im going to switch to humira and give 6mp a go. I had pancreatitis in the past year. am I mad to do this. im really nervous.
ju
 
sickinlk said:
my GI is looking to introduce 6mp to the mix. im on remicade buts its no longer effective and its bothering my liver. im going to switch to humira and give 6mp a go. I had pancreatitis in the past year. am I mad to do this. im really nervous.
ju
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Make sure you get your routine blood tests done while on your new meds. 6MP also carries the risk of liver issues and pancreatitis for some people. Your blood tests are important for early detection.

I have been on 6MP/Pred combo since valentine's day and have had no problems thus far. My crohn's symptoms seem to have died down.

I hope this new treatment plan proves to be successful for you :hug:
 
Yesterday Jaedyn had her 4 week bloodwork after starting 6MP. (duplicate post from Parents of IBD kids)

WBC 4.5 (5.0-11.0) low
RBC 3.98 (4.10-5.10) low
Hemoglobin 12.9 (13.0-16.0) low
Hematocrit 37.9 (39.0-48.0) low
Cell sizes are normal.

Neut% 53.4 (25-70)
Lymph% 26.8 (20-40)
Mono % 12.3 (0-10) High
Eos % 7.1 (0-4) High
Baso % 0.4 (0-1)

Na 143
K 4.8
Cl 104
TCO2 32.0 (18-27) High
Other anormalities include:
AST 44 (5-41) High
ALT 50 (6-40) High

The EOS make me wonder if she's getting an allergy to the med, but the absolute count is normal. The TCO2 indicates metabolic alkalosis - any thoughts on this? It is a significant change from 2 weeks ago. Formulas didn't change in that time... She's never had anemia before now. Could it be a med side effect? WBC count was 4.9 two weeks ago...

By the way, GI-wise Jaedyn is doing the best that I can ever remember - almost symptom-free!
 
6mp is an immunosuppressant and it does lower the white blood count blood levels. Right not my white blood count level is 3.2, which is lower than I like. My doctor has lowered my 6mp dosage to try to raise the level but that has not helped. I am scheduled for a colonscopy in the beginning of June and depending on the results, we might switch my medication.
 
Hey Carolin, 6mp can create exactly the kind of changes that Jaedyn has. Although, considering hemoglobin is at 12.9 and all the other lines are close to normal ranges I don't think you can interfere anything significant from that blood test. I'd wait for the next or the two next tests and see if things change back to normal. Especially given that he is doing very well.
 
I just wanted to share that I've been on and off Imuran over the last few years, when I first started on it in 2011 I was only on 100mg and it suppressed my immune system too low and I picked up a weird virus that pretty much gave me glandular fever like symptoms... I spent 2 weeks in hospital before they could figure it out! Anyway... I'm back on it again.. mainly so that we could see if i get sick again and to fill the criteria so I might quality for the government to let me have biologic treatments. I was on a really low dosage since January just one 50mg pill a day.... and it made my hair fall out terribly! Everytime I wash my hair it comes out in clumps, it's all over my bedroom floor from when I brush it, luckily I have pretty thick hair so you can't really notice but it's horrible! They put me up to 100mg a day since last week... so far no awful side effects fingers crossed... I have regular blood tests, so we'll see how it goes! Apparently most of my doctor's patients don't have any side effects at all!!
 
I'm starting on Azathioprine today, feeling a little apprehensive about suppressing my immune system and all the possible side effects. I'm staying on steroids for 4 to 6 weeks while it kicks in, and also staying on Pentasa, even though it doesn't seem to do much.

Thanks to everyone who has posted their experience on here, it helps not to feel so alone with it.
 
I've just started on 100mg of Azathioprine a day, feeling a bit apprehensive about supressing my immune system as I'm already anaemic and a bit susceptible to virus/illness. And also all the possible side effects of the drug itself.

I take 1000-2000mg of Vitamin C a day to try and boost my already low immune system... is this defeating the purpose of azathioprine do you know? Should I keep taking them?

Thanks for everyones' posts, it's good to feel I'm not alone with this.

:hug:
 
Cozmo,
Don't worry. You are not alone. Hopefully, you won't have any problems with aza. I used to be on 100 mgs of aza and had no problems. Regarding supplements, you might want to consider either a time release or chelated iron pill or you can try to get more iron from food, such as fortified cereal. As for Vitamin C, I get the recommended amount from a multivitamin pill and only take 1000 mgs when I feel like I am about to get a cold. You might want to give the aza a week if you are feeling okay, slowly wean yourself off of that high dosage of Vitamin C.
 
I usually take extra vitamin C in the fall/winter/spring when the colds and flu are more prevalent in our region. I take the 500 mg chewable tablets.
 
I'm on 6MP and I took extra vitamin C recently (in addition to my multivitamin) for a bad cold I had. I'm not sure but I think it helped a bit because my cold didn't linger as long or get worse/turn into something worse like an infection as it normally does and it wasn't a fun cold.
 
What regular labs should Jae be getting while on 6MP? I thought the GI said CBC and CMP and Metabolites, but the ped only knew of getting those in 2 weeks after starting. Should Jae be doing all 3 on a monthly basis now?
 
I get all of them done every time blood is drawn - cbc, cmp, metabolites and esr,crp. You should definitely ask for them.
Good luck.
 
so ive 1 week done on 50mg of 6-mp. I have this pressure (like I need a burp, but lower) and a heat in my mid upper abdomen. think my pancreas is getting angry again. had labs done yesterday and asked for amylase to be checked. please no.
ju
 
I get blood drawn every 3 months, sometimes more often if there is a problem. I always get CBCs done and I sometimes get a CRP ( C Reactive Protein) test, which measures if there is inflammation in the body.
 
My daughters been on imuran for 2 months...She had a bad start with nausea ,vomiting and fatigue which settled after a few weeks. Today she tells me that shes been feeling dizzy on and off for the last few days. And in class she felt like she was going to faint. Could this be caused from the imuran...2 months later ?.... She has been good otherwise.
 
upsetmom said:
My daughters been on imuran for 2 months...She had a bad start with nausea ,vomiting and fatigue which settled after a few weeks. Today she tells me that shes been feeling dizzy on and off for the last few days. And in class she felt like she was going to faint. Could this be caused from the imuran...2 months later ?.... She has been good otherwise.
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It could be that as it builds up in her system that her body isn't handling it well. I would contact her GI and get some extra blood work done. I had the issue that I was fine at first and then at the 2 month mark I felt awful and weak and it turned out that it was affecting my liver. My GI then changed me to 6-mp.
 
DS is starting Aza tonight. Any tips or suggestions? Mornings vs evenings? With or without food? Currently flaring so he's also on pred for a bit. We have to do split dosing: 25 mg one day, 50 mg the next. Should I split the 50 mg between morning and evening?
 
I find that taking it at bedtime helped with the nausea. Also, it's best not to take it within 2 hours of milk products.
Good luck and hope it does its job quickly for your son.
 
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.

***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.
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my daughter has been on 6mp since oct of 2012 she did have some hair loss and her hair does not grow like it used to. the 6mp with humira has put megans Crohn's in remission. we are dealing with joint pain in her spine now "( but you know it could be worse................so we pray pray and pray some more. god is good and this to shall pass
 
Has anyone had the problem of losing appetite from taking Imuran/Azathioprine?

I was on it before and became sick of just the thought of any food. It didn't happen fast and could have just been a coincidence that my appetite came back like crazy around when I stopped taking it.

I'm on it again and it's been almost 3 weeks. My appetite has started diminishing and I'm starting to get really picky about what I eat and it's starting to take its toll on my weight..
 
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I just read somewhere that I should be wearing gloves when handling the Aza for DS?? Especially since I need to split the pills in half? Is that true? Something about the dust and it possibly affecting my immune system?
 
And another question (can you tell we're new to Aza?)... a lot of people have mentioned nausea. Can DS take Zofran for that? He already has a script for "as needed".
 
I know a few folks on Imuran/Aza/6MP here have taken zofran for the nausea. Talk to the GI about it. Best of luck!
 
Have you looked into getting 25mg tablets. Sarah takes 2 x50 mg + 1x 25mg per day. So no splitting for us.
 
Thanks, Catherine. The pharmacy just didn't have 25mg's when we where there. I'll ask at our next refill. Splitting the pill was "interesting" tonight. Then DS sneezed! Pill dust everywhere.
 
Catherine said:
Have you looked into getting 25mg tablets. Sarah takes 2 x50 mg + 1x 25mg per day. So no splitting for us.
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I do that too. One other option... for example if you're taking a total of 125mgs per day... take three 50mgs on day one and two on day 2. I just make a note in my diary whether it's a 3 day or a 2 day.
 
Mehita said:
Thanks, Catherine. The pharmacy just didn't have 25mg's when we where there. I'll ask at our next refill. Splitting the pill was "interesting" tonight. Then DS sneezed! Pill dust everywhere.
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On your signature I saw your kid is taking only an average of 37.5mg per day of aza. That is a very, very low dosage. The effective dosage of aza is 2-2.5mg per kg bodyweight or about 0.9mg to 1.1mg per lbs. Do you know why the dosage is that low?
 
alex_chris said:
On your signature I saw your kid is taking only an average of 37.5mg per day of aza. That is a very, very low dosage. The effective dosage of aza is 2-2.5mg per kg bodyweight or about 0.9mg to 1.1mg per lbs. Do you know why the dosage is that low?
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He's starting so low because his TPMT was "intermediate" (=15), so for now it is only a half dose. He's about 35-36 kg on a good day.
 
Zac with no K said:
Has anyone had the problem of losing appetite from taking Imuran/Azathioprine?

I was on it before and became sick of just the thought of any food. It didn't happen fast and could have just been a coincidence that my appetite came back like crazy around when I stopped taking it.

I'm on it again and it's been almost 3 weeks. My appetite has started diminishing and I'm starting to get really picky about what I eat and it's starting to take its toll on my weight..
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Jae has no appetite on 6MP, but then again, she never has, and she is also doing 2000 calories of Ensure Plus/Peptamen Junior mixture/day. It is interesting that you ask this, because I have been noticing that Jae doesn't want most real foods - not even ice cream or other foods that used to be her favorite. Makes me wonder what is what, but it also gives me some reassurance as she is not having other symptoms and I was worrying it was due to her Crohn's...
 
Mehita said:
DS is starting Aza tonight. Any tips or suggestions? Mornings vs evenings? With or without food? Currently flaring so he's also on pred for a bit. We have to do split dosing: 25 mg one day, 50 mg the next. Should I split the 50 mg between morning and evening?
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Jae takes her 6MP anytime in the day she remembers it. It could be morning, evening, etc. No problems with or without food. Hugs to you both. I hope that he takes it with no problems at all, like Jaedyn. Hang in there! My prayers are for you both.
 
CarolinAlaska said:
Jae takes her 6MP anytime in the day she remembers it. It could be morning, evening, etc. No problems with or without food. Hugs to you both. I hope that he takes it with no problems at all, like Jaedyn. Hang in there! My prayers are for you both.
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It's not a critical thing, but aza/6mp should best be taken at about the same time each day. If at all possible in two dosages of the same size one in the morning and one in the evening. The reason is that you want a steady blood level of it.
 
With a teenage girl, that is not always something I have control of, but if I can help her remember to take it each day, I think I'm doing pretty well... I'll let her know...
 
Carolin, Sarah only takes aza in the morning. Twice a day maybe be better but better that it gets taken every day.
 
Is the initial blood testing supposed to be weekly or every two weeks? I'm pretty sure the GI nurse said two weeks, but I've been reading of people on the Forum doing weekly. DS was in the intermediate range so needs to be monitored closely. Can much happen in a weeks time if he's not metabolizing Aza?
 
Mehita said:
Is the initial blood testing supposed to be weekly or every two weeks? I'm pretty sure the GI nurse said two weeks, but I've been reading of people on the Forum doing weekly. DS was in the intermediate range so needs to be monitored closely. Can much happen in a weeks time if he's not metabolizing Aza?
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Both time I started aza (in 2003 and then again in 2010) it was every two weeks. However, I have seen people around saying that the standard in the US is weekly for at least the first 4-6 weeks. If you want a good "curve" of blood test results and really be on the safe side, weekly is surely better. If you don't want DS to get poked by a needle every week, from what my GIs told me 2 weeks for the first 6 weeks is fine, then every 4 weeks up to 3-4 months into aza or so and then every 6-8 weeks thereafter.
 
Mehita said:
Is the initial blood testing supposed to be weekly or every two weeks? I'm pretty sure the GI nurse said two weeks, but I've been reading of people on the Forum doing weekly. DS was in the intermediate range so needs to be monitored closely. Can much happen in a weeks time if he's not metabolizing Aza?
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I was told weekly for the first month and then monthly, not that I made it that far on aza. As for how much could happen in a week, it's more about monitoring closely as the doses are increased to see if the body is handling it alright. Then after reaching the full dosage monitoring to make sure the body continues to handle it.
 
hi guys,
ive got 2 weeks of 50mg 6mp done now. I have this cold in my head for a few days. no biggy but yesterday I noticed a bunch of hives on my waist. they aren't anywhere else. should I be worried. if it was a reaction to 6mp would it be everywhere?
ju
 
The hives may or may not be from 6mp. It could also be an allergic reaction to food or something seasonal, like pollen. Are you using a new soap or laundry detergent?

Play it safe and call your doctor.
 
nothing new being used. I don't have hayfever normally. I say normally because since dx a whole heap of new probs have arisen. lol. i don't wanna call the doctor because theres only 5 hives there and i don't wanna look like a hypochondriac. ill keep an eye just. thanks for the reply Kh216.
ju
 
So back to the land of frustration, my GI sent me for blood work last week and I didn't hear anything back until this morning they call and want more blood work because my liver enzymes and inflammatory markers are up and they want to check for mono. Sounds like I can't handle 6-mp either. :( and possibly having mono is not something I want to hear 2 days before I'm supposed to take a 9 hour road trip to visit my grandmother in assisted living. Hopefully the mono test comes back negative.

When they put me on 6-mp they told me the next option was remicade, not sure I'm prepared for that possibility yet...
 
I'm new to Crohn's also at the same time Dx with a Gluten Allergic so much to take in. I'm currently on 200mg of Azathioprine and started it about 2 weeks ago along with 40mg of Prednisone I'm tapering off of that.

I'm not seeing a difference or side effects still tired and still have joint pain. But in time I do hope that things get better. Blood work was all good just had my 1st blood draw.
 
LBlair, it can take up to 3 months for AZA to kick in. Sorry you've gotten this diagnosis and all that goes with it. I hope your AZA kicks in soon!
 
Good day to all, I have been on 125 imuran for about 7 months and just started having terrible headaches!!! Is this normal? My blood tests have been good.

thanks for your help


Currently
Asacol 800 3x day
Imuran 125 1x day
 
I think the headaches and dizziness are from dehydration. My son has to drink a full glass of water with his 6mp and has to drink water throughout the day or he will get the headaches/dizziness.

Mehita, Our GI said to use gloves while cutting the pills but this is mostly an issue if you end up pregnant. 6mp can cause birth defects. We cut pills for about a year and we just made sure we washed our hands well after handling it. Our son does also. Johnny also has zofran as needed for nausea while on the 6mp. He has needed maybe 6 or 7 this year so far, so nausea is quite infrequent.
 
I have been on 6-mp for about 6 weeks now and am not a fan. I have developed "photosensitivity" and my hair is falling out. Does anyone know if similar drugs have similar side effects? I am only 36 and am not ready to be a bald recluse...lol. My GI doesn't seem to care but it bothers me! Any advice would be appreciated...thank you:eek:
 
heat,
seems a lot of the drugs we get prescribed can cause hair loss. also being sick and in a flare can be a cause for it too. I would feel the same as you about my hair. it gets so thin and its scary seeing a big ball of hair in the drain after washing. could you go for a shorter layered style. its no fun this blastin disease.
dunno about photo sensitivity apart form wearing glasses and a hat and loads of high spf sun cream. apparently it makes our skin burn easier.
is it doing anything for your crohn's.
ju
 
Maybe I'm totally seeing things that aren't there. Maybe we have weird light bulbs. Maybe I'm just paranoid, but...

I think DS is starting to look a little yellow? He's only been on Aza for just over two weeks and we did bloods yesterday but do not have results back yet. His TPMT was in the intermediate range so his dose is only 1/2 of what it should be and we're watching him like a hawk.

A couple of weeks ago, he did get a little sunburn on his face that is now tanning up, but it seems to have a yellowish undertone to it.

Can Aza cause jaundice this quickly? Also, if he had jaundice as a newborn, does that make him more susceptible?

Does anyone have experience with this? How quickly can things get bad? Should he be experiencing other symptoms?

It's a holiday weekend here in the US, so calling our GI seems like overreacting. Or... maybe I'm just overreacting?
 
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Mehita said:
Maybe I'm totally seeing things that aren't there. Maybe we have weird light bulbs. Maybe I'm just paranoid, but...

I think DS is starting to look a little yellow? He's only been on Aza for just over two weeks and we did bloods yesterday but do not have results back yet. His TPMT was in the intermediate range so his dose is only 1/2 of what it should be and we're watching him like a hawk.

A couple of weeks ago, he did get a little sunburn on his face that is now tanning up, but it seems to have a yellowish undertone to it.

Can Aza cause jaundice this quickly? Also, if he had jaundice as a newborn, does that make him more susceptible?

Does anyone have experience with this? How quickly can things get bad? Should he be experiencing other symptoms?

It's a holiday weekend here in the US, so calling our GI seems like overreacting. Or... maybe I'm just overreacting?
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I think it is worth the phone call for your peace of mind. It has no relationship to the newborn jaundice. Other symptoms could be confusion, fatigue, eyes getting yellow, dark urine...

I don't know how long it takes to make things go bad, but I think it would be noticeable when it was getting bad enough to make him yellow. Unfortunately, turning yellow isn't usually the first sign - I think bloodwork shows liver enzyme changes long before the jaundice stage, but not sure how much longer if it really was toxic to his liver...
 
Mehita said:
Maybe I'm totally seeing things that aren't there. Maybe we have weird light bulbs. Maybe I'm just paranoid, but...

I think DS is starting to look a little yellow? He's only been on Aza for just over two weeks and we did bloods yesterday but do not have results back yet. His TPMT was in the intermediate range so his dose is only 1/2 of what it should be and we're watching him like a hawk.

A couple of weeks ago, he did get a little sunburn on his face that is now tanning up, but it seems to have a yellowish undertone to it.

Can Aza cause jaundice this quickly? Also, if he had jaundice as a newborn, does that make him more susceptible?

Does anyone have experience with this? How quickly can things get bad? Should he be experiencing other symptoms?

It's a holiday weekend here in the US, so calling our GI seems like overreacting. Or... maybe I'm just overreacting?
Click to expand...

His liver enzymes will start showing damage to his liver well before jaundice will be a huge issue. I have been taken off 6-mp after less than 2 months on it because my liver enzymes started going through the roof. The physical side effects that I noticed were extreme exhaustion and my hair falling out. It turns out the exhaustion wasn't so much a side effect of the drug but a side effect of the damage to my liver.
 
Heat92627 - Have you had any recent blood work done? You might want to get your CBS and Liver Function Test done to see if anything else is going on.
 
Just started Imuran last week and, I gotta say, I think it is working already! Don't seem to be seeing any side effects... do those come later?
 
smack116 said:
Just started Imuran last week and, I gotta say, I think it is working already! Don't seem to be seeing any side effects... do those come later?
Click to expand...

Usually if your going to get side effects they happen straight away...well they did for my daughter.

You might be one of the lucky ones who won't get side effects.

Good Luck!!!
 
@smack116 - Many people tolerate Imuran without any problems. I have two children on Imuran and neither have side effects with it. :)

The main thing to remember is to have bloods done regularly whilst ever you are taking the drug. At this point you should on weekly for month, then move to fortnightly, then monthly and finally 2-3 monthly.

Good luck! I hope all continues to go well.

Dusty. xxx
 
Just encase anyone has the same problem, I was extremely nauseated on Imuran everyday and extremely tired and just really down, but I take my two tablets at night now and sleep through it all and I have been feeling great the last few days. So anyone with the same problem give it a go :)
 
alex_chris said:
Sorry to hear about your diagnosis. Re imuran, yes it increases the chance of cancer, but let's compare that to people who smoke just as an example. Smoking increases the chances of cancer tens if not hundreds of times more than imuran... And still people smoke, voluntarily! Imuran has an indirect benefit by the way, because you need to do a complete blood test every 8 weeks and talk to your doctor regularly, it is more likely that cancer or many other diseases are detected very early on.
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Thank you for this message!! it's made me think so much better about all this. I'm currently on 100mg Aza and started in January. I worry about the cancer side a lot and reading this post has really made me think. I use to be a smoker, not a heavy one, but a smoker anyway, and stopped completely in January. So here I am worrying about cancer when yes you're right, when I was a smoker I never thought 2 seconds about cancer! So my health is a lot better now being a non smoker taking the tablets, then it ever was being a smoker! So thank you for raising this point and making me realise! :)

However, the main worry I have is the sun... I'm from the UK so weather is never really a big issue - when we do get abit of sun I like to sit out in it and am I going on holiday abroad soon. I haven't experienced sunny weather yet whilst being on these tablets. Does anyone notice issues with the sun?? I would wear sun cream but I don't like the idea of being restricted to the shade all the time :(
 
Hey Jenbob,

Everyone is different but my two kids are on Imuran and we are in Oz. They follow the usual sun protection precautions and neither have experienced any issues.

Dusty. xxx
 
I read somewhere that this type of medication is usually given in a lot higher dosage to organ patients etc., so could this mean we might not be affected as much? So just making sure a high factor sun is on could be enough?

I assume its probably the case of 'everyone is different'. I may sit in the garden tomorrow (as our small British summer is trying to come through!), and see how I react to it! :)
 
Yes, organ recipients do receive much higher doses.

I would take sensible precautions and start out slowly. Like you say, a good start would be a high SPF and sit in the garden. I would probably add a hat too.

Dusty. xxx
 
Jenbob said:
However, the main worry I have is the sun... I'm from the UK so weather is never really a big issue - when we do get abit of sun I like to sit out in it and am I going on holiday abroad soon. I haven't experienced sunny weather yet whilst being on these tablets. Does anyone notice issues with the sun?? I would wear sun cream but I don't like the idea of being restricted to the shade all the time :(
Click to expand...

I just came back from two weeks of mountaineering and just chilling at the Southern coast of Crete. My skin is probably between types II and III, with a ias to II. The only sunburn I had was on my left shoulder because I didn't properly pit suncream there on the very first day. Otherwise I had no issue and never had an issue with the sun in the last 10 years on azathioprine.
 
Ah that's great to hear :)
Well the sun is showing his face today, so will sit in the garden and see what awaits! Thanks
 
What is the major issue about the sun? Last summer (Early feb here in Oz) I ended up getting severe sunburn on my back and legs in spots I couldn't reach with sunscreen at the beach. I still notice some discoloured skin on my back. Is it because of an increase cancer risk? I'm a little concerned that I haven't got it checked...
 

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