new and nervous

I've just been diagnosed with Crohn's as of yesterday. I've had recurring problems for the past 2 - 3 years and horrible doctors who did nothing to help me or assumed the inflammation and symptoms would clear on their own. After finally finding a doctor who listened and tested he's diagnosed me and given me a medication to try.

As I am glad to finally know what is going on with my body - I'm hesitant and nervous to take these meds. He prescribed me Mercaptopurine aka Purinethol. The description and side effects of the medicine make me worried because I've already lost a ton of weight and and don't need to lose appetite, feel nauseous or lose hair.

I was wondering if anyone had taken this med before and how they felt with it?

Also if there were other websites to recommend for information and support.

Thanks!

Welcome heavly. Have not had experience with your prescription either, but you have come to the right place. I am so glad I found this forum. It is full of great people with lots of information and experience that I have learned a great deal from. I was so nervous and ignorant when I was first diagnosed, but fortunately things have worked out pretty well(so far) for me and I hope that they work out better for you also and that you have doctors now that will listen to you and help you.

This is rather peculiar. I had never heard of (Mercaptopurine / Purinethol), and a quick Google search shows it to be a drug for treating cancer. Perhaps it has some benefit for Crohn's sufferers, but I can find nothing said about that. This is a drug with serious side effects.

Here is a link:

http://www.drugs.com/cdi/purinethol.html

I don't want to second guess your doctor, but is there something that he isn't telling you?

Seems to me that there are several milder drugs that should be tried first for a newly diagnosed Crohn's patient.

best wishes for improved health,
Robert

hi and welcome heavly. i was very anxious about taking the 6mp. now that i am on it i don't think about it much. i just add it to my daily pills :/ this is my last step before surgery. so far, i have some mild nausea. and i took nanners advice, i take it before bed and have also added folic acid.

so where is your crohn's located? does your dr. have you on pentasa or asacol as well? i assume he did a scope with biposies for your diagnosis?

don't fret too much. anytime you need to talk we are here to listen :) take care!

Have been on 6mp for five years with no side effects and very good remission levels. This drug is widely used in CD and has been studied for 20 years or more . . . as noted, it is taken at a much lower level for Crohn's than for other uses. Chances are good that you will have no problems with it and good results, though it should be noted that it can take 3-6 months to reach full effectiveness.

Welcome and good luck. I was weary of taking my first dose of Azathioprine (which Judy speaks of above) but I am glad I did it. I am doing well and don't see too many Ill side effects . I do take extra folic acid for hair loss and it seems to help. good luck! Karen

I apologize, I did not know that Mercaptopurine is another name for 6MP. I have indeed heard of 6MP, though I haven't taken it myself.

I assume that the numerous side effects of 6MP (that I have read about, not experienced) have much to do with the higher dosage given to cancer patients. At the lower dosage you're taking, you should do OK. At least, many others on this site seem to think so, and they have experience with it.

Take a look into Asacol as a milder drug if you have side effects from 6MP. Of course, "milder" also means "not as effective." Some of the choices we have to live with.

You're new here, so I guess you haven't seen some of the discussions we've had about diet, supplements, etc. It's worth looking over some of that stuff, though it's kind of buried in all the numerous posts. For myself, I take 3 supplements which have greatly reduced my diarrhea: vitamin A (fish oil type, not beta-carotene), a probiotic, and MSM. It took about a week for the vitamin A (just one capsule daily) to kick in, but it really helped. I've found that some things can really induce a flare and thus must be avoided, especially caffeine (coffee, tea and cola). I also avoid hot spices and alcohol. If you're having diarrhea, a low-fiber diet can help, with some occasional Imodium. You didn't really tell us about what symptoms you have, so I'm only guessing about what you need. There are some people here on special diets, but it might not be necessary for you so I won't delve into that right now.

regards,
Robert

Thank you all sooo very much for posting! I feel much better and more knowledgeable! about taking the 6MP. So far.. I'm on day one of meds, so we'll see how it goes.

As far as the symptoms I have - I've never really had diarrhea - mostly soft, irregular bowels with a lot of pain and cramping and blood in the stool - and sometimes just blood. On the rare occasion, vomiting too. I've lost about 15 lbs and I really hope to gain most of the weight back. I have always been small (5'4") - but 95 lbs is just too light for my liking! When I first went to this new doctor he used a scope and then scheduled a CT scan - which I was so glad to not have to do another colonoscopy. He said that my upper and lower bowel are inflamed and irritated which explains the bleeding and pain and constant emergency trips to the bathroom, numerous times a day. Before I had the CT scan I was taking 12 Asecol (dont remember the dosage at the moment) a day - which did help. I had much less pain and bleeding on most days and even managed to gain back about 4 lbs, but after having the CT scan my doctor prescribed the 6MP because the inflammation is up higher in my intestine than he had initially thought.

I keep a pretty simple diet and eat often. I usually snack throughout the day and eat about every 2 - 4 hours. I've learned that I can't have caffeine (chocolate I miss you!) and rich foods - like some red meats and heavy creams. Luckily I don't have problems with dairy - so long as I keep it to 2 - 3 servings a day - if I couldn't eat ice cream I just don't know what I'd do! I limit the amount of sweets I eat a day (which if you couldn't already guess I have a huge sweet tooth!) and try to eat based off how I feel at the moment. I will definitely look into those diet books and see what they recommend.

Thank you thank you all again!! I am so glad that I found this board and will continue to check and post regularly :D
best wishes and health!
xxoo

Hi there, i'm taking Imuran which is in the same class as 6MP.

I find taking it at night i'm not as tired in the day.  The side effects do go away usually after a few weeks at most.
Hang in there, as many have said it does take 3-6 months to kick in fully.  I'm at week 4 now with Imuran, i've noticed little improvement so far but i'm also on evil prednisone ;) 

Best wishes, good luck!