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heavly
Regular Member


Date Joined Nov 2007
Total Posts : 83
   Posted 11/30/2007 6:27 AM (GMT -7)   
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! confused

Mac_Gyver
Regular Member


Date Joined Aug 2007
Total Posts : 350
   Posted 11/30/2007 6:39 AM (GMT -7)   
Welcome to the board. While I have not taken the medication you are taking, Im sure someone will come alone on the board who has. You have found a good place, there is alot of information here all you have to do is ask- Jason
Symptoms Of Crohn's June of '06 (21 years old 285lbs). Colonoscopy in Jan '07 no sign of Crohn's.
Surgery for a Fistula in April '07, diagnosed suggestive Crohn's in May '07. August '07 small bowel follow
through, diagnosed with Crohn's (23 years old 165lbs). On HUMIRA, Prednisone

============================================


clavman
Regular Member


Date Joined Sep 2007
Total Posts : 39
   Posted 11/30/2007 6:48 AM (GMT -7)   
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.
Bob
47 years old
Dx 3/07 Moderate Crohn's in terminal ileum-Probably had it for years earlier
Rx Prednisone initially for 8 weeks-40mg/day then tapered down to 0
    Currently on Pentasa-2000mg/day


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 11/30/2007 7:20 AM (GMT -7)   
Many folks on this board take Imuran/6mp and have been able to reach and maintain remission on these drugs. I have taken both and found that the side effects go a way within a short time. My best tip is to take it at bedtime as you sleep thru the nausea/fatigue side effects. As for the MILD hairloss, many take 1 mg Folic Acid or Biotin to help with that. I would try the med, many have had great success with it.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


ozonehole
Veteran Member


Date Joined Dec 2006
Total Posts : 559
   Posted 11/30/2007 9:15 AM (GMT -7)   
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
Crohn's since 1988
3 resections

Post Edited (ozonehole) : 11/30/2007 9:16:04 AM (GMT-7)


heavly
Regular Member


Date Joined Nov 2007
Total Posts : 83
   Posted 11/30/2007 9:23 AM (GMT -7)   
It is a drug they use with other treatments for leukemia. It is also listed as a drug used for Crohn's, ulcerative colitis and lymphoma. I spoke with the pharmacist and he said that as well. I have a low dose compared to what they use for patient's with cancer. I have left a message for my doctor to call me so I can further discuss this with him. I had tried to ask him as many questions as I could think before leaving the office but I think he should have mentioned that to me, at least for me to be comfortable with it. I'm waiting to hear back from him, but considering trying it for a few days before bed (thanks for the suggestion above) and if I experience any serious symptoms to call him.

dustspeck
Veteran Member


Date Joined Sep 2007
Total Posts : 565
   Posted 11/30/2007 9:33 AM (GMT -7)   
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!
.: stephanie :.
32 y/o female diagnosed 8/8/7 with crohn's of the terminal ileum w/ stricture/scarring
10mgs prednisone (getting there!), 50mgs 6mp, 4000mg pentasa, vicodin for pain & a boat load of other drugs for sleep and anxiety!


peggy619
New Member


Date Joined Jul 2007
Total Posts : 5
   Posted 11/30/2007 9:36 AM (GMT -7)   
Welcome to the board Heavly, sorry you have to be here, but you will benefit from the knowledge and empathy you will find here. I was diagnosed last April and put on Mercaptopurine/Purinethol/6MP right away. I was concerned about the side affects, but gave it a try anyway. I was too scared not to! It is frequently used to treat other auto immune diseases as well as cancer. Contrary to the last posters opinion, your doctor is giving you a commonly used medication for Crohn's. I have experienced very few and very minor side effects..fatigue and slight dizziness being two of them. (and I've always been dizzy, lol) You will need to get your blood tested on a regular basis as it can suppress your bone marrow. Should this occur, stopping the medication relieves that immediately. I think you will find that many people on this board have been pleased with the results of this medication. I hope you feel better soon. In the meantime, get as much info as you can. Visit the Crohns and Colitis foundation website, you'll get alot of good info there. There is even a book I found invaluable, the website is: http://www.ccfa.org/. Take care of yourself, it is scary--any chronic disease is, but knowledge is power. Peggy

MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 11/30/2007 9:43 AM (GMT -7)   
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.

JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 11/30/2007 9:49 AM (GMT -7)   
Mercaptopurine (6MP) has been used to treat Crohn's disease for many years, it's an antimetabolite. Similar drugs are Imuran, Azathioprine, (Purinethol is a trade name for Mercaptopurine). Yes, it's the same drug they use in a type of Leukemia, but CD patients take smaller doses. Side effects/adverse reactions are pretty rare, but doctors will keep an eye on things with regular blood tests.

They are known as immunosuppressants along with Methotrexate which is also frequently used to treat CD and Cyclosporin which I don't think is used anymore.
Judy
Crohn's Disease   
 
 
 


karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 11/30/2007 2:51 PM (GMT -7)   

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


 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 On 150mg Azathioprine (generic Imuran), Pentasa, & Entocort (take zofran for nausea now)

Diagnosed w/  Fibromyalgia May 2007 also on Soma

Also have Arthritis, and feel like I am falling apart sometimes...


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 11/30/2007 3:55 PM (GMT -7)   
I've been on 6MP for more than a decade. I have had no side effects to speak of. You should have regular blood work and every so often you should have blood sent to the prometheus lab to check to see how you are metabolizing the drug. This is the best way to check to see if you are at the proper dosage. It is a delicate balance. You need to be at a level that is helpfull with out being toxic. That level is different for each person. There are guidelines based on weight but the best way to know for sure is to have your blood tested by prometheus.

The dosages that CD patients are given are much lower than cancer patients, so technically the side effects can happen, but it isn't the norm for us.

Good luck with your information gathering and I hope your doctor is able to give you enough time to answer all of your questions. The main thing is that YOU need to be comfortable with this path, and if you aren't then you need to work with your doctor to find another path.
Suzanne

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


ozonehole
Veteran Member


Date Joined Dec 2006
Total Posts : 559
   Posted 11/30/2007 7:50 PM (GMT -7)   
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
Crohn's since 1988
3 resections

Post Edited (ozonehole) : 11/30/2007 7:57:44 PM (GMT-7)


Skjura
Regular Member


Date Joined Jun 2007
Total Posts : 210
   Posted 12/1/2007 10:33 AM (GMT -7)   
hi heavly,
and welcome to us. I agree with ozonehole when it comes to the diet. There is a lot to find in here about different diets that are able to calm diarrhea, to reduce pain and which teach you to take control yourself.

This is the most important part that I suggest for you. Some of the diets that Crohnies succeed in are f.i. SCD diet, a book is written by Elaine Gottschall, The Makers Diet (don't remember the author) and the book The New Eating Right for a bad gut, by Ph.d. James Scala. To combine a diet and a maintenance medicine later, could be very wise.

Hope you'll bring the disease under control soon.
With all the best from I.
 
Diagnosed CD June 2007. Have only used prednisone. Did make a difference while max dosed. Got my problems back when tapering.
 
Using Low Dose Naltrexone from sept. 2007. See yahoo.com.
LDN helps me. I am now in remission. Have no side effects. (LDN gives just a few - if any the first weeks on it). It's cheap. Just 60 cents a day.
LDN modulates the immunesystem through stimulating the endorphines.


heavly
Regular Member


Date Joined Nov 2007
Total Posts : 83
   Posted 12/1/2007 2:01 PM (GMT -7)   
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

EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 12/1/2007 3:28 PM (GMT -7)   
Welcome heavly! After reading your question about other websites for support, it dawned on me that it's too bad there's not a forum out there like this one of Crohn's folks who are making a go of it without what I call the "big gun" meds. There are a lot of folks out there doing this successfully. They make serious dietary changes and add important supplements like probiotics. Most folks have to figure this out on their own, though. I know our doctor was of no help in this department. Thank goodness for this site!!!

As Skjura recommended, please look into those books on diets. We're doing The Maker's Diet by Jordan Rubin. (Jordan's personal story of his battle and victory over Crohn's is well worth the read!) I also incorporate aspects of the Specific Carbohydrate Diet (SCD) by Elaine Gottschall. The latter has a lot of information/recipes you can access online, too. Prepare yourself...both eliminate sugar, flour, refined carbs, etc. My son found it especially hard to give up ice cream, but he's completely in remission, so he believes it is more than worth it. (And believe me, we were the family who each had a bowl of ice cream nearly every night!) I found the Maker's Diet especially fascinating because it focuses on putting the highest quality foods possible in your body.

We are all very fortunate to have this forum and the internet at our fingertips to help learn how to deal with Crohn's. Every day I learn something new...

Best of luck to you and I hope you feel better real soon!
EMom

Grateful for everyone's help here!

Mother to 15 year old boy just diagnosed in June, 2007.
Currently taking Asacol, omega 3s, digestive enzymes, probiotics, iron, vit. C, and a good multivitamin.

Started The Maker's Diet in early September.


thenay
Regular Member


Date Joined May 2006
Total Posts : 167
   Posted 12/1/2007 3:32 PM (GMT -7)   

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!


Male DX with CD May 2006 @ age 22, Colonoscopy and SBT
Taking Prednisone 17.5mg (tapering), Imuran 75mg (eventually 150mg I was told), Atenolol 25mg for fast heartbeat (thanks Pred!)


Mormor Vicky
Veteran Member


Date Joined Mar 2007
Total Posts : 684
   Posted 12/1/2007 7:51 PM (GMT -7)   
Welcome Heavly, I'm one that did have a bad reaction to 6-MP, so when you go to your doctor to complain about side effects make sure he listens instead of telling you that "All meds have side-effects even aspirin. You will have to deal with it." I ended up in isolation with bone-marrow suppression for 11 days. to say the least he is no longer my doctor. Just make sure you let them know what side-effects you suffer from and then don't let them blow you off. I wish it had worked for me but at lest I know that it's on my no-no list. I have read that what happened to me is a long shot 1 in 300 people. Just make sure you have your blo
Vicky / 47 years old
DX'd with Crohn's during a resection August 2006
DX'd with Steriod induced Diabetes November 2006
Considered in Clinical remission but have minor signs of disease activity
 
Daughter (26) also has Crohn's since she was 12.
 
Currently on 4000mg of Pentasa only for Crohn's
No longer able to take 6-MP because of Bone-Marrow Suppression
Cymbalta, Metformin, Lipitor

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