Purinethol / Mercaptopurine ?

[songbird]

After having a horrible time, ended up back @ hospital. Now back on Prednisone with my Asacol. With follow-up on tests I now hold in my hand the bottle of Purinethol~scared to start this med. See it's not in this list.., says it is used to treat cancer.., Freaked out. Any feed back. I'm now told that not only do I have Crohn's, but they "think" I also have ulcer. colitis ~ not to mention a lot of crap with Esophagus, etc. etc. Feel like I'm ready to just cry & not stop. More tests, more hospitals, more worries.:sign0085:
Thanks for any info with this.
No Singing.., just a chirp!

 

[jimcon24]

Hi Songbird!
When I got diagnosed with crohns they started me with mercaptopurine. Like you I read the small print and got a bit scared. Its used to treat leukaemia, wash your hands after touching the tablet, these sorts of things made me nervous too! But guess what? It was a great success for me. I took it for 18 months and was crohns free for 3 years. Ultimately I needed to stop mercaptopurine because it lowered my white blood cell count too far. I needed very regular bloods too, to see my kidneys and liver were doing ok. I would say put aside your fears and take it as prescribed - it could really control your symptoms and can have far reaching benefits. My IBD nurse told me the maximum length of time it could be taken was 5 years. He also went on to say that the longer I could take it, the longer the benefits would last. He drew me a very basic graph which showed for every year you could take it, the chances of flare-ups in your lifetime would reduce. So if I had managed a 5 year term the benefits may still potentially been with me as an old man. However I only made 18 months because of my white blood cells. Essentially this medicine does its thing in the bone marrow. I've never read of anyone having success with it but it kept me good for 3 years at least. Good luck with it. It you want to ask me anything about it feel free!

 

[songbird]

Thanks Jimcon,
Were you on other meds as well? With all the fears of everything.., I wonder about even the smallest of things.., hair loss, lol. Did you experience that? I already had significant thinning, cut my hair, still fairly long, however with all else I would like to hang on to it as long as possible.
I know you also stated it "does its thing in the bone marrow", I take it you didn't have any problems there? I go in next week for 1st blood test.., then after 3 back to see if they can get another IVCAT. I guess the blood tests have to be pretty consistent?
They, the two GI's that attended me today went over soooo many issues that when I left my head was spinning & I really couldn't get a handle on questions about this med., until after I got home & looked it up.
So, once again.., Thanks.

 

[PsychoJane]

Hi Songbird,
I moved your post in the Imuran/Azathioprine/6-MP thread. 6-MP is another term used for mercaptopurine/purinethol. Where I live, we almost only use the term purinethol in reference to that medication so I was a little confused myself when I first got on the forum. Anyway, just to let you know that you have many people on the forum that are taking this medication and I am sure you will be able to obtain answers regarding any interrogation you may have (blood tests, potential side effects, improvements, etc).

Quickly, I can tell you that this medication needs a little time to start being effective, generally something around 6-8weeks but it is not said that you won't get benefits out of it earlier. Generally you will have frequent blood tests at first, sometimes it is weekly at the beginning then monthly and then it is generally every 2 or 3 months to make sure there is no side effect occurring (this medication can be hard on the liver but the close check up allows to take it up early).

 

[rollinstone]

Don't stress songbird, mercaputine (sorry for spelling) is 6-mp, pretty much the sister drug to imuran, when I say sister drug, imuran is converted to 6mp or mercaputine once it's ingested into the body.

 

[jimcon24]

Thanks Jimcon,
Were you on other meds as well? With all the fears of everything.., I wonder about even the smallest of things.., hair loss, lol. Did you experience that? I already had significant thinning, cut my hair, still fairly long, however with all else I would like to hang on to it as long as possible.
I know you also stated it "does its thing in the bone marrow", I take it you didn't have any problems there? I go in next week for 1st blood test.., then after 3 back to see if they can get another IVCAT. I guess the blood tests have to be pretty consistent?
They, the two GI's that attended me today went over soooo many issues that when I left my head was spinning & I really couldn't get a handle on questions about this med., until after I got home & looked it up.
So, once again.., Thanks.

Songbird, they started me on prednisolone and mercaptopurine at the same time. I did fortnightly bloods for 3 months and then every 3 months and as the white blood cells dropped it was weekly for 4 months. I initially started on 75mg but went down to 50mg with the whites dropping. I did not see or feel side effects at anytime, even when the whites were low I felt good. No-one at the hospital explaned the medication which was fine with me as it is complicated and there was always the leaflet to refer to. I think you should go ahead as it may improve your quality of life, you'll be monitored so any bad effects and you stop. If you were to risk assess the medication against things you do in your day to day life I think its a small risk and reading small print on any medication could make a person nervy. I was crohns free for 3 years with it, I hope you can be crohns free for even longer.

 

[CrohnsChicago]

I was also a bit fearful starting 6-MP (mercaptopurine) for the same reasons stated above. But I've been on it now since February and I feel SO much better than I did before. It takes a while to kick in, usually around 3 months, which is why they put you on steroids in the meantime to hold you over.

I agree, give it a shot. Side effects are minimal to non-existent for most people. And it's worth a shot to try the 6-mp pills before trying the heavier stuff such as Humira or Remicade which will require a bit more of a lifestyle adjustment to receive your medication as well as more common side effects. And yes, it is used to treat certain cancers, but consider that cancer patients are receiving MUCH higher dosages of this medication than what is given to Crohn's patients. So even though we are not out of the clear entirely, their risks are greater than ours.

Also you will be receiving routine blood tests on the medication so if at any point the doctor feels your liver or pancreas is at risk or you are having any other complication, your doctor will take you off of the medication. And you don't need to be weaned off like prednisone which is also another good thing.

Just when you are taking the medication make sure to always drink plenty of water to help your liver break down the medication, wash your hands to free yourself of germs as the medication has the ability to increase your chances of getting sick and wear plenty of sunblock when outdoors to protect your skin and decrease your chances of skin cancer (which is low) as your skin becomes more sensitive while on this medication.

 

[songbird]

I started the med. last night 75mg. Now just need to stop feeling like such a baby. Thanks your feedback really encourage me to stop freaking, lol. :yfaint:
Looking forward to better days ahead. Wish you both well.

 

[chickadees]

Thanks for sharing... I can so relate! My doctor prescribed 150mg for me last week with entocort & i've been scared to start taking it. I have mild crohn's so it just seems like too potient of a drug & not typical 1st line medication. I'm working up the courage, if I'm brave I may start on Saturday.

 

[LindaS]

I've been on Mercaptopurine for about a year now. I took it several years ago and it put me in remission, but I had to stop it due to liver issues. Please make sure to keep all your lab appointments. That way they can spot any problems early.