Mercaptopurine making my husband a zombie

[cricket81]

is anyone taking mercaptipurine right now? My husband has been on it for three weeks now (75 mg/day) and he is so tired he can barely function. It's hard for him to think straight and have the energy to work. Once he is home he just sleeps. Just curious if anyone else is having this problem.

 

[beth]

Azathioprine which is the usual pro-drug for mercaptopurine did that to me too. I didn't find any way around it.

 

[fenway1971]

I'm on 50mg of mercaptopurine. I went up to 75 but had to come back down after it started messing with my liver.

I am noticeably more fatigued on it. I think it's a common side effect.

 

[Mark33180]

Is he eating your brains????

 

[cricket81]

haha, no not yet! It's only been three weeks since he has been on the meds. I'm pretty sure brain eating doesn't start until the 5th week of therapy.

 

[cheeky]

Azathioprine which is the usual pro-drug for mercaptopurine did that to me too. I didn't find any way around it.

ya i know, the only time in years i felt high energy and well rested was when i was on pred.... that was brief.... ever since i've been on Azathioprine, i'm right back to feeling super lethargic.

 

[DanM]

is anyone taking mercaptipurine right now? My husband has been on it for three weeks now (75 mg/day) and he is so tired he can barely function. It's hard for him to think straight and have the energy to work. Once he is home he just sleeps. Just curious if anyone else is having this problem.

I know what you mean. 6-MP is a real energy sucker. I have been known to imitate the walking dead. Do you have a copy of Thriller at home? I suggest you play it the next time he comes home from work to tease him. You gotta love Vincent Price and Michael Jackson.

 

[fenway1971]

haha, no not yet! It's only been three weeks since he has been on the meds. I'm pretty sure brain eating doesn't start until the 5th week of therapy.

LOL. Having been on this for 3 months, I guess now I know why people stare at me funny.

 

[Jefferson]

I've been on 6-MP for several years now ranging from 50-150 mg's. I'm currently on 75 mg's right now. Fatigue has always been an issue but it's something I just had to assimilate to. I do remember the zombie like stage though; it lasted for several months. Unfortunately it takes the drug several months to begin working. But in my experience, the fatigue lets up, albeit not completely.

 

[cricket81]

I'm not sure if he is ready for the "thriller" joke just quite yet. I'll give him a few more weeks to assimilate first. He is starting to turn the corner (I hope, my fingers are crossed). Thanks so much you guys for all your help. I was also wondering...did anyone notice a difference in their fatigue if they took their med at night vs. the morning?

 

[chief]

ive been on it for 6 years at 75mg couple of months ago i dropped down tp 50mg for the first time and really notice my energy inprove, it was amazing.
I always thought that every one felt as i did but now i know it was the meds really slowing me down. Can't image what it'd be like to be off completely

 

[guest883]

i'm on 6 mp and hate the fatigue

been on 6 mp for 8 yrs. (only 25 mg.). am female, 64, and in total remission since on it but the fatigue is a killer for me..must nap daily and go to bed early. guess it's a trade-off, fatigue vs. colitis/crohns. i don't think the fatigue will ever go away unless i get off the med.

 

[Deleted member 81255]

I agree with cricket. If I take my Azathioprene(Imuran) at night and I don't feel as tired. I wake up with more aches in my legs and feet but Tylenol takes care of that. Maybe you could try taking it at night? Would that work for that medication? Good Luck!

 

[guest883]

tried taking 6mp both in the a.m. and p.m. hoping the change would help w/the fatigue. i now take it at nite. i work out hard daily in the a.m. and notice the fatigue is greater after working out hard or taking a spin class. then i need a 1-1/2 hr. nap instead of say, 40 min. nap. i think it's just one of the side effects of the drug but have recently read that crohns/colitis will return in 87% of the people who quit 6 mp so i'll stick w/it until something new is developed.

 

[Melliejay]

Hi,

I just posted a little of my experience in another thread:

Can't put the link in so here is a copy:

I had a lot of side effects when I started taking 6MP. From memory I mainly experienced:

Hayfever like symptoms
Severe Tiredness but unable to sleep
Nausea (like car sickness)
General unwellness

My doctor advised that you need to slowly up the doseage over a period of time. In my case, due to these side effects, we had to stop the drug then more than usual very slowly introduce it over a 2 month period.

Once I was on the full 50mg dose I was fine for about 6 months however I started getting more side effects slowly. Mainly a slight nauseated feeling near constantly. My Specialist felt it was not the drug as it usually is ok once you get onto it and the initial side effects subside. After 12 months and a colonoscopy that found the crohns in remission due to the 6MP (probably) I was still feeling poorly. I suspected 6MP. My doc and I agreed to 1/2 the dose and I almost instantly felt better. It actually felt like I had been walking around in a haze for months - like vaseline on my eyes and cotton wool in my head. I had been unable to engage in any meaningful conversations or socialise as I couldn't concentrate - but because the symptoms increased gradually I didn't realise how bad it was until I 1/2'ed the dose.

So in my experience I would recommend:

1. Slowly start to increase the dosage
2. Stick with it if you can bear it for at least 6 weeks
3. After you have been on it for a while but you slowly start feeling poorly again it could be this drug

Good luck!

 

[guest883]

i'm taking only 25 mg. of 6mp which have kept me in remission for 8 yrs. have stuck w/it since it works but hate the associated fatigue, regardless of taking it in the a.m. or p.m. guess i'll just have to live w/it, the bruising, the easy bleeding, and the red pinpoint spots on body, but bottom line: haven't had a flare in 8 yrs. so until there's another miracle drug, i've gotta tough it out.

 

[braveheart]

I've been on 6mp for several years without any side effects so far.
I think this drug is the best to control this disease.

 

[kenny]

I found taking my aza after dinner helped while I was adjusting to it. Also the multivit is SOOO important. If I don't get my multivit every morning I get like that after a while. If his gut is not working right vitamin and mineral absorption might be very limited making this a big problem.

 

[littlemissh]

Blimey, looks like I've got all this to look forward to as I will probably be started on azathioprine in the next couple of weeks...then again if it works its worth it..had a rubbish christmas.

 

[hainman]

hi guys n gals.i have been told as of tomorrow i have to be placed on this 6mp instead of azathioprine,i am currently taking injections of humira every 2 weeks but now have to come down to weekly plus take this 6mp together instead of aza and humira,my GI nurse had a meeting with the specialist and the surgeon and stoma specialists and they have papers that point to these 2 drugs working better together than the aza and humira.i also have to start taking asacol enemas which should be fun......hopefully i dont suffer to much fatigue as im a lazy barsteward as it is haha,i realy enjoy mountainbiking so i take it i'll need to be carefull incase i fall down a big feckin hill....
anyhoo all this to get me into remission and off the damn prednisolone steriods which have gifted me osteopenia...............cheers for any info if anyone has tried or is taking the asacol enimas.......

 

[Ian]

I'm on 75mg of 6MP, it knocked me out pretty badly when I started it but I carried on taking it and my body got used to it. I also experienced nausea but that didn't last too long and doesn't happen anymore. My energy levels felt normal again quite soon (well, normal for me anyway). I've heard this is quite common, our bodies just take some time to adjust so I'd tell anyone starting it to hang in there unless it makes you feel really ill for a prolonged amount of time.

 

[hainman]

ive only been on the 6mp for a week but had no fatigue or sickness so fingers crossed it does the job.also been put on asacol enemas.pain in the ass realy but hope they work.....