Anyone on 6mp for crohns?

Janedoe10

I am on [Purinethol, 6-MP]
after surgery for ulcerative colitis . It's given also the name Mercaptopurine.
I know of no one else on it which makes it hard some times to accept I'm on a cancer drug . Side effects are crap though painful joints ankles ESP and sleeplessness .
Has any one else been put on it by consultants in Ireland ?
Interested just to compare side effects at least .

tooler08

I am on 6-mp for the last 4 years and to be honest its a bit of a pain of a drug at times.
When I started on them I was and on 125mg a day. My energy was zapped right away and so was my appetite. Most mornings I woke up feeling nauseus and I bruised realy easy.

They are pretty strong and dangerous medicine I had to get blood tests twice a week for the first 3 months and then once a week for a few more months. They are immunosupressants so you will be more susceptible to sickness like flus or infections, chest or kidney.

They defineatly do their job. They dont work instantly,up to 3 months to take affect, but my symptoms are pretty much non existent now and Im down to 25mg daily.

I hope this helps

dloob

This is probably a bit late but anyway...
I've been on immuran(6-mp) twice for what is now considered crohns's but was once ulcerative colitis.
I was on 125mg both times.
First time I was coming off a flare which never really settled so after 3 months I ended up back on intravenous hydrocortisone again and eventually remicade.
It never got much of a chance that time as it is a slow acting drug.

Second time was after a gall bladder removal which meant I stopped the remicade and it was decided to try the immuran again.
This time I was on it for 6 or 7 months so it got a good run.
I had absolutely no noticeable side effects, but unfortunately it had no other effects either and it became a slow decline to back on a hydrocortisone drip before returning to the remicade after a spell in hospital.
This time I had monthly blood tests and it raised several liver enzymes a bit but not too much.

So not too positive for the effectiveness for me, but on the other hand no side effects at all.

The_Conductor

I was on Imuran for 6 years in total, before coming off it (without any warning whatsoever, my white cell count collapsed, and I had no immune system). I didn't find any issue with appetite suppression to be honest, however the constant exhaustion was debilitating.

I've ended up in hospital with a flareup on average once a year since coming off it- which is normally treated with hydrocortisone, alongside whatever my current deficiencies might be (I regularly need IV potassium, veinifer, platelets etc).

When Imuran was working for me- and it did work for a long time- it was a life saver- I had been on Pentasa prior to it- which I found totally useless.

You really need to discuss this with your consultant to be honest- my experiences, or those of others- may be totally different to yours.

echo beach

Janedoe10 wrote: »

I know of no one else on it which makes it hard some times to accept I'm on a cancer drug .

It is an suppressant, used as part of the treatment of certain cancers AND to treat other conditions, such as Chrons.
It isn't accurate to call it a 'cancer drug', and thinking about it in that way isn't helpful for you. It is the drug YOUR doctor has prescribed for YOUR condition. What else it might be used for in other people isn't relevant to you.
If the side effects are a problem for you your doctor may be able to prescribe an alternative that suits you better but you have to talk to them about that.