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6mp,20yrold SCARED please help..

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Ulcerative Colitis
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Posted 5/29/2009 4:39 AM (GMT 0)
Hi. Im 20 years old, I have ulcerative colitis.
I am on 30mg of prednisone trying to get out of a flare, having trouble since about last august of 08

I just started 6mp, 50mg in the morning and 25mg at night,
30mg prednisone, tapering down to 20mg then holding till we see what happens with the imuran.
and colazal, like 3 grams or somthing.

I need some info..
I just kind of realized that I am on chemotherepy medication,

I want to know, what the risk of developing cancer or other severe complications by taking this drug is.

I am Very very scared. and I have bene having anxiety attacks all night about this..

What have your expereinces been with this drug? Is this worth the risk?

I just, am so young.. and really dont know what to do.. I mean, I dont want to develop cancer... maybe I should just get the surgery.. so please, honestly give me feedback.. thank you all.

[email protected]
Posted 5/29/2009 6:46 AM (GMT 0)
I am scared myself to go on 6MP. The doctors claim that it isn't bad at the dosages. But it still isn't something that is good for your body.
Posted 5/29/2009 6:57 AM (GMT 0)
Well, me being 20 I can relate to how terrifying this is. I've not had to take 6mp yet but I was inspired to go and read a few studies. None of them had any proof that 6mp was carcinogen and is actually used to treat cancers like leukemia. There are a few really unpleasant side effects but your doctor really should be aware of them and give you better details than I can. If you stay alert of anything feeling wrong while on 6mp you should immediately tell your doc but that goes with many medications. From what I could find 6mp won't kill you. It may increase a chance of infection but it won't cause cancer.
Posted 5/29/2009 7:11 AM (GMT 0)
I think it can increase the chance for cancer. How 6MP works is by interrupting DNA synthesis of purines. This directly affects the immune response in UC as the cells involved in the immune response are duplicating very rapidly. It also affects the other cells of the body but not as greatly because they are not dividing as rapidly. To me this seems to be a carcinogenic effect, but maybe not such a big one to get worried about.
Posted 5/29/2009 11:09 AM (GMT 0)
The FDA considers 6MP/ Imuran carcinogenic.  Dosage is one factor; duration is another; a third seems to be combination with other drugs.
Posted 5/29/2009 11:49 AM (GMT 0)
I am on azathioprine, which from what I gather is in the same class of drugs as the 6-MP. (hope I'm right on that)

I have been on azathioprine (100mg) for 2.5 years now. My initial flare would not go away until I started taking it but, like you, I had (and still have) reservations about it. For me it was totally worth going on to stop the flaring since it was the only thing that really got me under control. I'm still freaked out by it, but I'm more freaked out by the UC and flaring so I stick with it. For me, it is worth the risk.

Your doc should be monitoring your blood work on a regular basis to look for irregularities. When I was initially prescribed it I was going in to have blood work drawn very frequently. I forget the exact intervals, but it seems like weekly for 1.5 months. Now my blood is checked yearly.
Posted 5/29/2009 1:57 PM (GMT 0)
Before taking powerful drugs like 6mp, we'd all be wise to learn all we can about the pros and cons. Here are some links to help you:

 

http://www.webmd.com/drugs/drug-1370-Purinethol+Oral.aspx?drugid=1370&drugname=Purinethol+Oral&source=1

http://www.webmd.com/ibd-crohns-disease/immunomodulators-for-inflammatory-bowel-disease

http://www.dailystrength.org/treatments/Purinethol

http://www.chemocare.com/bio/purinethol.asp

http://www.merck.com/mmpe/sec02/ch018/ch018c.html

Posted 5/29/2009 5:43 PM (GMT 0)
There is no reason to be scared as long as you have a good doctor who will answer all your questions and also, do your own research. Your body is your own responsibility, so when you decide to go on 6MP, make sure that you take the responsibility and have your blood work on a regular basis recommended and instructed by your doctor.

I understand that you are young and that you are fairly new to this disease. A lot of people here have the disease for a long time. I hesitated taking Pred for 12 years (took it the first time last summer) and I fought to take 6MP, but now I wish I had taken 6MP much earlier. It would have saved me from a lot of pain with this disease.

So just gather all the facts and make an informed decision.

Best of luck and please feel better soon.
Posted 5/29/2009 6:10 PM (GMT 0)
Why are you not on rectal meds if you are having problems?
Posted 5/29/2009 8:34 PM (GMT 0)
     I've been on 6MP for about six years now.  I get monthly CBC's .  Every three months I receive liver function and pancreatic enzyme tests.  Last year I had my worse flare ever and was hospitalized for ten days.  The doctor took me off the 6MP because when I was admitted my pancreatic enzyme levels were extremely high.  However, by the end of my hospitalization the tests had returned to normal and my colonoscopy revealed only inflammation in the rectum.  about two months later the doctor decided to try the 6MP again, since I was having a difficult time weaning off the prednisone.  It took another three months before "kicking in".  I enjoyed eight months of sheer bliss.....no symptoms whatsoever.  However, last Sunday I noticed mucus in my stools and ulcers in my mouth.  Having a long history (over ten years) of UC, I KNOW what those symptoms represent.  Proctitis is looming its ugly head again.  So far no bleeding but I do feel pressure.  I started my cort enemas and Canasa to see if I can head this off at the pass.

     I guess you can summarize this by saying.....6MP does NOT keep you out of flares.  It may have helped in the fact that my ulcerations have stayed in the rectum and not traveled further into the colon in over ten years OR maybe the Colazal can take the credit for that.  Who really knows?

Posted 5/29/2009 11:19 PM (GMT 0)
I am on colazal, and 6mp, and 30mg prednisone..

as I said, my colon seems to be out of flare, my inflammation seems to be in the lower rectum/anal area now..

Im not sure about rectal meds, personally I dont like combining the colazal with 6mp becuase I read it makes the liver toxicity issue even bigger...

I eat a very healthy diet, I was doing the raw food frutarian diet for a couple months while tapering off the prednisone, and achieved a very healthy colon, my colonoscopy showed no inflammation or ulcers, said my colon looks amazing, went as far to say he doesnt know why Im still having pain.. but tapered down to 5mg of prednisone and eating heavy bulky salads, well bledeing and urgency occured.. I am now at solid bowel movements, no blood, no mucus, doing well with that department.. I am not on the raw diet any more, however I eat bee pollen, manuka honey, and fruits all day till around the afternoon, when I drink some veggie juice, I drink lots of carrot juice as well, I take probiotics every morning, licorice root, curcumin, digestive enzymes as well, Im going to cut out all grains, nuts and seeds too here shortly, I eat some meat, but Im going to cut that out as well, and only eat wild salmon if I eat meat, basically just keep it simple to light salads/salad wraps, and fruit.. and lots of honey/ raw bee products,and I drink lots of coconut water.


I told my doctor the only way Ill take the 6mp is if I can get blood work done once a week, wich I am doing, and my first blood work showed no problems.. Also, he has me taking 6mp 50mg in the morning, and 25mg at night, he said that woul dbe easier on my liver since taht is a concern of mine.. do you think it would be better to just take the 75mg all at once? I havent really been expereincing any side effects.. I mean, I feel nauseated a couple times during the day, but nothing to bad..
sometimes I loose my appetite, but still force myself to eat, Im just worried about the cancer and lymphoma, is lymphoma reversable? and how would we notice/discover that sort of thing??
Posted 5/29/2009 11:23 PM (GMT 0)
I'd start some rectal meds (start with a 5ASA, then maybe try a steroid one if they don't work), then, if your inflammation is low before trying 6MP. I think there's a pretty good chance you could get into complete remission by using them in combination with colazol.
Posted 5/29/2009 11:32 PM (GMT 0)
Ive already started the 6mp tho..

I tried mesalmine ennemas once last year, but I dont think they did anything.. in fact I think they made my lower back(flank) kind of sore.. not sure if it aggrivated my rectum or not. :\
Posted 5/30/2009 12:16 AM (GMT 0)
I don't have much to add here - everyone has said what I would say.

But..

I can relate to you, herbalgerbals. I am 22, and I've had UC since I was 19. I started taking Imuran in January because I wanted to get off Entocort, and I wanted to just feel better and take a lot less pills. Since then, I was doing really well until Tuesday this week. I don't know what happened, but all my progress has fallen apart. I don't necessarily like that I'm taking Imuran, a heavy drug, but, if it works, I'm going to stick with it. I think this is a fluke week because of the womanly timing. *rolls eyes*
Posted 5/30/2009 2:11 AM (GMT 0)
I would skip rowasa and use the hydrortisone enemas. The steroid enemas are not rowasa, not even close to the same thing. For me, if I am flaring bad, I either use the cortenemas or I keep flaring.
Posted 5/30/2009 11:04 AM (GMT 0)
Hi, I too feel the same and chickened out on taking it. I dont know anything about a surger, everyone here is talking about it. ? Im not having it one you levels I guess, yet. But it is still scary, bad, bad cramps. I have had some blood, and black stool. Some other UC type things.

 I was offered by my doc to take methatextrate for my undiagnosed auto immune prob. With irits, wierd stuff, ibs, and some UC symtoms. Does anyone know anything about this drug?

I dont have UC on your level, not yet. Surgery, wo, that must be not good. I have some bleeding form time to time. But extrmely bad cramps are quite often, I haqd a recent scary as hell bought of it. For two weeks I could barely eat. Ridding of gluten and dairy for a few day and getting back on VSL3#, I live it. I was mostly better in a few days. Its temeporary, but thank god.

Im 29 now. My granda took methatextrate and dies from cancer, but she was old and smoked too much. Whats should i do. Take it and possible hold of the disease before I have to have things cut out and live with the results? What is the better thing, the drugs or not?

Should I ask for steroids as well? My auto immune probs are slowly grows worse.

And what the heck is with the scary surgeries? Do I even want to know this possible futrue?

Is this realy all auto immune?

Post Edited (houseguest) : 5/30/2009 5:09:31 AM (GMT-6)

Posted 5/30/2009 7:24 PM (GMT 0)
I feel the same way you do. I was on Remicade (which is even more powerful) and I was scared with that and had a bad reaction so I stopped after the 2nd dose. Now I've been prescribed 6mp. I was supposed to start taking it yesterday but I have a ton of anxiety about it. Since the mixture of 6mp and Remicade has been linked to cancer, I'm just not sure I want to put that in my system since I had a Remicade infusion a month ago. Also not sure I want to start such a risky drug with side effects when I am in remission, but remission is new for me and since I'm elminiating Remicade as an option I don't know if I should do the 6mp or not!
Posted 5/30/2009 7:47 PM (GMT 0)

Just wanted to bring to everyone's attention the importance of really really keeping on top of your blood work if you are taking 6mp and Remicade at the same time. My son was on both and he ended up very sick with nutropenia (very depressed white blood cell count) and he was VERY sick in the hospital for 10 days. He had a high fever and terrible sores all over his mouth and throat. no to mention unbeleivable headaches from the 6mp. Anyway, the mixture of those drugs needs to be very closely monitored.

As far a surgery goes, it's as scary as your are scared. If you are sick enough and miserable about your quality of life, it might be the option for you. As big a step as surgery is, the thought of being in and out of hospitals all the time and being on very serious drugs.............well, that's scary too. It's a personal decision based on your circumstances. Good luck to everyone!

Posted 6/4/2009 2:47 AM (GMT 0)
To second what my mother said I will briefly elaborate on my experience with 6mp. To begin it will take 6-8 weeks before you see any real benefit from the drug. I was on the drug for about 10 months and throughout I experienced terrible headaches. This was most prevalent for me when my dosage was 100mg or higher. Additionally these were not your garden variety hangover headaches. These were migraine knock you on your ass headaches. With that said, it did help me to go into remission for about 2 months total. As my mother mentioned I also became neutropenic. Terrible experience and I really really recommend that anyone considering immuno-suppressants diligently monitor their blood work. I am 24 and truly suffered for a year. I am lucky in that a year is a short time relative to others who have posted here. I chose to have surgery only after trying every drug out there including 6mp, remicade and even cyclosporine. Cyclosporine is so toxic that my regular infusion center refused to give it to me and I had to go to Mt. Sinai Hospital in NYC to receive the poison. Sadly it only made me worse. When I was first diagnosed I vowed I would beat this and would not have surgery. After the cyclosporine I had no choice but to have surgery. It was the best option for me and I hope to be "back to normal" in time for the holidays. Surgery is not something to take lightly. It is a long process and serious surgery. I will say this. None of the drugs I mentioned above are miracle drugs. They all have side effects.
Posted 6/4/2009 4:15 AM (GMT 0)
I believe the risk of cancer is low, but the risk of having liver toxicity is far greater. If you are on this drug, you need to have consistent and periodic monitoring to make sure the levels are adequate in your body and that you aren't suffering from toxic effects.
Posted 6/4/2009 12:04 PM (GMT 0)
If your inflammation is in the rectum, definitely use rectal meds. You don't have to use enemas--there are suppositories and foams.

I'm 20 so I can relate to your fear. Who knows what the long-term side effect of Remicade will be? But 6MP has been around for a long time, and most studies have shown that it's safe. You just have to decide what's best for you. I was really hesitant about staying on Remicade, but now that I'm in remission, I don't want to stop! I'm somewhat normal now, so I'm willing to take the risk of the Remicade unknown.

houseguest, methotrexate is more often used for Crohn's than UC; you might want to post on the CD board. The most common belief is that UC is autoimmune, since your body attacks your own colon.
Posted 6/4/2009 6:38 PM (GMT 0)
As I said, I told my GI if I am on this 6mp I want blood work ONCE A WEEK, no matter what.

So Ive been doing that.
So far, Ive been noticing slight headaches, and a lot of sleepisness, or nausea during the day..

lately my urine has been a little more yellow..

Today I called about my liver panel, and they said my ALK phosphate was a little low..

But I never got any Real advice, I only spoke to a nurse, so you know they didnt help me much..

Should I be concerned???
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