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RELUCTANCE with 6MP

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Ulcerative Colitis
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Posted 1/21/2010 2:59 AM (GMT 0)
I have been stuck at 20mgs of prednisone for about 3 weeks. When I tried to taper to 15 after 2 doses next morning
first 2 b/m's were blood. After I had my "freak out" & got hold of doc's office they told me to increase back up to the 20mg
dose (which I expected) until my appointment yesterday. Here's where it gets good, so I dropped down again on Monday to 15mgs
& have had 3 doses & as of now...no blood. I am gassy but I have included a tiny bit more fiber into my diet so, I expect it. The only
cramping i am having is that feeling of a wound or a cut in my gut that feels like it's scabbing over...hopefully you know what I mean.
I take my canasa suppository at night which is also working great.

Now, doc thinks I should start 6 mp b/c I have been on prednisone way to much within the last year and a half & we all know the long term
side effects of prednisone. However, now that my taper is back on track I am struggling with this advice. I get where he is coming from
& given the fact that my last remission did not last that long he is looking at the bigger picture. I have really changed/altered so much within
my diet & my supplements this time around and am pretty happy with the results I have gotten. I guess it's just alarming to find out that it's
time to move on to the "next class" of drug therapy when I am not sure it's really what I need, just not feeling it in my heart. I am also going to
try colazal instead of asacol as my new maint drug. Fun stuff!!!

Can anyone offer advice on 6mp, how you reached your decision to take it, how it's working for you, & any long term users have you
experienced any side effects. It's a little scary knowing it's used to treat cancer & it's only other uses are treating U/c & Chron's.

Also, thinking about seeing Dr. Dan Present of MT. Siani for my 2nd opinion. Have any of you used him?
Posted 1/21/2010 3:20 AM (GMT 0)
Try Turmeric. I was having trouble tapering pred. Everytime I would get to 20mg I would get blood and D back.
I've been taking 900mg of Turmeric 2x daily for the last 4 days and I'm at 25mg of pred and there is no blood, cramping, urgency, and I'm back down to 1-3 times daily. I'm also getting my appetite back.
I'm just waiting until the "diameter size" of my poos return to normal before tapering because I want to be absolutely sure that I will hit remission.

Also the reason I starting taking Turmeric was because I'm one of the few people which are toxic to 6mp. I never thought that a alternative medicine would help me but it is! :3
Posted 1/21/2010 11:58 AM (GMT 0)
My GI urged me to take it - not something I wanted to do. She was quite adamant about it, so I decided to humor her for a while.

In any event, it was not a good experience for me. I became very fatigued (no matter when I took it) and my hair fell out. I dropped it after a couple of months and my quality of life improved greatly afterwards.

Having said that, I know that a number of people have benefited from its use, and that many of the side effects disappear after a while. So I would not dismiss its value out of hand. It was just not for me as I managed to control my UC via other means.
Posted 1/21/2010 12:26 PM (GMT 0)
I didn't think I would ever get to that point either. I couldn't get out of a flare and I was dependent on steroid enemas. Every time I tapered off them, I would flare again and since I can't take mesalamines, Rowasa enemas were out of the question for me. Just a one question, have you ever tried Rowasa?

I have been on 6mp for 3 years and the main side effect I still have is a bit of fatigue and heat sensitivity. In the beginning, I had headaches, fatigue, and nausea. I contemplated 6mp for 3 months before I broke down and took that first pill. When you start on 6mp or Imuran, you will need to go in for frequent blood testing which a pain in the tush but after being on it for a while, the need for the blood tests come farther apart.

If you feel that this is not the course for you, then you have every right to seek a second opinion.
Posted 1/21/2010 1:55 PM (GMT 0)
Sherry, do you feel like the 6MP is working for you?

I just started Imuran last week. I had to think about it for 2 months before I decided to do it. I am having some fatigue, but nothing too bad. I just hope it works. That is the main thing.

My GI says that he has had very good luck with Imuran with his other UC patients, so I am keeping my fingers crossed.
Posted 1/21/2010 2:05 PM (GMT 0)
It's far worse to stay on prednisone than it is to take 6MP. The doses UCers take is far below the therapuetic level for cancer patients. Research in the early 2000s indicated that it was a very safe drug for us. But I do understand your hesitation, I had the same concerns when I was put on in it in 1998. I stayed on it for 1.5 years; it didn't help my UC but I didn't have side effects either. It's a tough call but getting into remission and reducing inflammation is paramount to maintaining good health.

Sue
Posted 1/21/2010 2:26 PM (GMT 0)
WeirdBeard, yes I do feel that 6mp is helping me. I've had some up and downs with it though, meaning that I can not get into the theuredic (sp?) level without getting into liver toxicity. But for the most part it has kept my flares mild to non existent. I'm back in remission now but I just got over a little blip (stress from a death in the family) and had to go back on steroid enemas for a short time. But before that I was in remission since April '09. I hope this works for you and you can get into remission.
Posted 1/21/2010 9:40 PM (GMT 0)
     I fought the doctor about taking 6MP too.  That was several years ago.  After starting it...it took 3 months to "kick in", I did enjoy a two year remission but then the flares started again.  The doctor increased my dose to 100 mgm this past summer from the 50 mgm I was taking and it made me very sick.  My white blood count went down to 1.6!  He took me off the 6MP.  I am now on Remicade.  After my first two infusions I felt great.  My third infusion was on Dec 31st.  I suffered a flu bug about a day or so later and have been having IBD symptoms ever since.  Waiting for a call from my GI doctor today because of my urgency issues...getting worse.shakehead
Posted 1/21/2010 11:37 PM (GMT 0)
Christine- just curious...what other lifestyle/diet changes had you made between the 6mp & remicade?

Thanks-
Posted 1/22/2010 12:42 AM (GMT 0)

suebear said...
It's far worse to stay on prednisone than it is to take 6MP. The doses UCers take is far below the therapuetic level for cancer patients. Research in the early 2000s indicated that it was a very safe drug for us. But I do understand your hesitation, I had the same concerns when I was put on in it in 1998. I stayed on it for 1.5 years; it didn't help my UC but I didn't have side effects either. It's a tough call but getting into remission and reducing inflammation is paramount to maintaining good health.

Sue

I agree - I'd take 6MP over Prednisone any day.  Of course neither is fun!
Posted 1/22/2010 3:52 AM (GMT 0)
     momof3.....I didn't make any lifestyle changes..lol.  To tell you the truth, after suffering with this since 1998, I don't think it has anything to do with diet.  I did start with the severe symptoms while on the Atkins Diet for two weeks and I swear that threw me into this mess but the doctor thinks it was just a coinicidence.  As a matter of fact, a lot of people who suffer with IBD say that the Atkins diet actually helps them!  Go figure.

     I do stay away from spicy, greasy foods.  While flaring I stick to a low residue diet too.  However, I felt so good after my first two Remicade infusions, I ate like a beast!

     I am 63 yrs old, so I don't go overboard on exercise.  I try to walk at least three times a week at a good pace for at least 30 minutes.

     Reading this forum you will come to realize that what works for some people doesn't work for others.  Guess it is just trial and error for each individual.

Posted 1/24/2010 4:20 PM (GMT 0)
Hi

I have been taking 6mp for 3 weeks now, not really noticed anything but im really tired all the time, I just cant seem to get my butt in gear and just want to sit and watch telly, not good as I have a 3 yr old and 1 year old that I need to entertain! But I figured that if the pred wasnt going to work then the next thing to do is try the 6mp as I dont want to have surgery ! Im getting really fed up with this problem I am hoping that I can get into remission soon on this drug!
I have my third blood test this wednesday but im off to get the swine flu jab tomorrow si I will check on my last week bloods too.

Hope you make a decission soon, the 6mp takes 6-8 weeks to work so sooner you get on it the better, I wish I had taken it when I was told too ! Atleast by now I would know if its working for me.

XX
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