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GI Presribed me 6MP

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Ulcerative Colitis
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Posted 4/30/2009 7:23 PM (GMT -5)
Has anyone had any luck with 6MP and how long does it take to kick in, I've heard 3 months!
Posted 4/30/2009 7:43 PM (GMT -5)

Starting my third month tomorrow.  So far I don't know if it is working at all.  I tapered from 40 mg. of prednisone down to 20 and then bleeding and pain started again so I went back up to 25 mg.  Then doctor raised 6 MP to 75mg. but I had to back off because of side effects.  Still not really sure where side effects are coming from so may have to try 75Mg again to find out.  I got dizzy when laying down, nauseated, muscle aches, ringing ears, headaches, and feeling "blah" which got better when I back down to 50 mg.  I am very sensitive to medication and cannot tolerate any mesalamines. 

So, after a couple weeks of 25 mg. I went down to 20 mg. and after three days - bleeding again (had stopped for a while mostly).  Waiting to hear about blood tests, etc.  Be sure you have your blood tested regularly.  I was told it would take 3 to 6 months probably to "kick in".  I wish it would so I could go further down with the prednisone.

ElaineNY

Posted 4/30/2009 7:48 PM (GMT -5)
Thanks Kops2da

Yea, that was the one thing my GI told me was that I had to make sure I had blood work done very regularly. Why do you think your GI prescribed you 6MP and not Imuran or Remicade?

Posted 4/30/2009 7:50 PM (GMT -5)
I've been on and off of it a couple of times. It takes about 3-4 months to really start working. I've been taken off of it as it lowers my white count. Several months ago I had the TPMT blood test to see how I metabolize it and I'm below the low end of normal, so it won't work for me anymore. That's when I started Remicade. I was on 6-MP for a few years and it was working pretty good, but then my white count dropped. I've been in a flare for a couple of months now and was just started on Lialda about a month ago (used to take Pentasa). I don't want to jinx anything, but I think things may finally be taking a turn for the better.
Posted 4/30/2009 7:52 PM (GMT -5)
6mp was my last hope- I took it for 5 months and it never worked. Not to say that it won't work for you. The side effects weren't too bad until I started taking 150 mg. which is a very high dose.

My friend took it for a while and it worked for her. It took 2 months for it to start working.

Good Luck!
Posted 4/30/2009 7:54 PM (GMT -5)
6mp was my last hope- I took it for 5 months and it never worked. Not to say that it won't work for you. The side effects weren't too bad until I started taking 150 mg. which is a very high dose.

My friend took it for a while and it worked for her. It took 2 months for it to start working.

Good Luck!
Posted 4/30/2009 7:57 PM (GMT -5)
Thanks everyone, what are the common side effects of 6MP?

Posted 4/30/2009 8:06 PM (GMT -5)
Usually the doctor will do an initial blood test (Prometheus) to see which one you will tolerate better - 6mp or Imuran. They are basically the same drug except Imuran breaks down into 6mp in the liver and 6mp is the purer form of the two. Some people need that break down and others don't. Remicade is "technically" not in this class range and is considered the last med of choice before surgery is considered.

I have been on 6mp for 2 1/2 years and I noticed a change around 7 weeks but I didn't get the full benefit from it until around 3 months. I still go in for blood tests but not as frequent. I have my blood checked every 6 months now unless something comes up. So far the only thing that has happened is they were keeping an eye one time on my WBC which I guess was a bit on the high side. But other then that I have had no troubles with 6mp.

The most common side effects are nausea, fatigue and headaches but once you get used to the med these should subside.
Posted 4/30/2009 8:50 PM (GMT -5)

I have no idea why 6MP was the medication of choice for maintenance.  I never ask. 

ElaineNY

Posted 4/30/2009 9:00 PM (GMT -5)

How long should you try to tolerate the side effects and hope they get better.  I just can't function when the feet and hands started cramping and my arm felt like it was going to fall off.  I just don't know how long to try to work through it.  Doctor always thinks I give up too soon but I have to be able to function somewhat and when the side effects are worse than the UC I have to back oFF!

ElaineNY

Posted 5/1/2009 6:28 AM (GMT -5)
I'm not sure Elaine. We are all different and we all have different pain/side effect threshold levels. My side effects lasted (severely) for about a month and a half. I still get some fatigue though. But the thing with 6mp or Imuran is that you have to drink LOTS and LOTS of fluids! Even if you think you're drinking alot then drink some more. I too get cramping in my legs and feet but I found if I drink a lot of water or other fluids that the cramping subsides. Have you been drinking more liquids lately?
Posted 5/1/2009 6:55 AM (GMT -5)
I have been on 6MP for about 2 1/2 months now. I can't say it has really improved anything for me, but perhaps more time is needed.

Side effects didn't hit me until a couple of weeks ago. The most significant being fatigue. I also have headaches (but not too bad) and hair loss (but that could be from being off prednisone). I also feel achy and stiff, especially in my leg muscles. Trying to get up after sitting for a while can be an adventure. I'm looking forward to the side effects subsiding.

For me, the side effects have been unwelcome, but more annoying than anything. It hasn't stopped me from leading a normal life, just caused me to make some adjustments - especially involving physical activity. I'm sure things will work themselves out eventually.
Posted 5/1/2009 8:00 AM (GMT -5)

I guess adding the side effects to everything else makes it hard for me to function.  Mostly it is the sweating, nausea, and not being able to use my arm, etc.  I have to take Pepto Bismal and Imodium to go anywhere.

The answer to drinking more fluids is NO!  They all make me nauseated and I just TRY to drink a little more.  Water is terrible - juice gives me GERD - milk does not agree with me.  For two days I tried to drink extra and got so sick!  I also have an overactive bladder!  I will just keep trying - at least drink more with my medication than I used to.  When I go out I can't drink at all - like shopping, etc. because Iwould be in the bathroom all the time.

ElaineNY

Posted 5/1/2009 8:31 AM (GMT -5)
After my colonoscopy on the 20th of this month, I am going to be starting 6MP or Immuran pending the colonoscopy results.... I am hoping it works....this flare is really nasty....
Posted 5/1/2009 11:36 AM (GMT -5)
Elaine, what about popcicles? Can you tolerate them?
Posted 5/1/2009 2:18 PM (GMT -5)

I always do better in hot weather.  Yes, I can but have to be careful about sugar in them.  Juice bars might be better.  I also like the ones the kids eat that you squeeze out of the tube.  Thanks for reminding me now that it is finally warm.  Winter I drank decaf/herbal tea some.  Just have to remind myself I NEED to have the extra liquid!

Posted 5/2/2009 8:43 AM (GMT -5)

So does anyone recommend that I DONT try 6mp? 

I really want to get on something that could potentially put me in to remission because this disease is slowly but surley taking over my life.

Posted 5/2/2009 8:57 AM (GMT -5)

Since starting on 6MP I have done extensive research online and don't really find any good reason not to try it.  Seems it take from 3 to 6 months for most to get help from it.  It is a way for me to get off prednisone - I hope.  I am in my third month now of 6MP and 25mg. of prednisone.  So far not much difference but it seems that 6MP can be stopped at any time without problems.  One has to be sure their blood is tested on a regular basis to check white blood count.  If it is too low - you can immediately stop it. 

Some research found several who have been on maintenance dose for years - one 12 years.

ElaineNY

Posted 5/2/2009 12:01 PM (GMT -5)

I'm on 6MP since a bit over 5 months. I started with 75 mg and boy, was I miserable! I take 50 mg now since around 2 months and I feel great. I have blood tests once a month and they come back fine now (since I am on 50 mg). And I am in remission since 4 months.

I have to say that I love to hate 6MP. The side effects on 75 mg were terrible. I tried to sit them out. I constantly had bad headaches, dizzy spells, comatose sleep, achy body, nausea to the point of almost throwing up, sweating, total weakness (I couldn't even bend down to empty the dishwasher from the weakness in my legs). I am doing great now on 50 mg. I'm still more tired than before (meaning pre-6MP), but since I take it in the evening, it almost works like a sleep aid for me. I have at least 8 hours of uninterrupted sleep (except for tornado season and severe storms at nights - hey, I'm in Texas :)). My doc took me off 75 mg and put me on 50 mg after my blood work was borderline severe, meaning the blood count plummeted and the liver enzymes went through the roof. But I am doing okay now and I'm glad I didn't give up on 6MP.

I can only agree to what Sherry has said: Drink lots of fluids! To flush the kidneys and to keep you hydrated. My doc always says that 6MP makes you prone to dehydration, so chug down that water or whatever you like.

Just my 2 cents.

Posted 5/2/2009 12:15 PM (GMT -5)

I like your "2 cents".  Thanks!  Gives me encouragement but I see you take Asacol also - I can't tolerate any mesalamines including rectal meds.  Wondering if 6MP will be enough.

ElaineNY

Posted 5/2/2009 1:05 PM (GMT -5)

Thanks for everyones feedback.

Did any of you lose your hair while on 6mp?

Also, do you take it indefinitiley even if you reach remission or do you ultimatley wean off of it?

Posted 5/2/2009 1:49 PM (GMT -5)
I lost some hair in the beginning but once my body got used to it eventually the hairloss stopped. I have naturally super thick hair anyway so this wasn't an issue for me. 6mp is the only thing that really worked to get me remission and my GI has no plan of taking me off it anytime soon.
Posted 5/2/2009 9:06 PM (GMT -5)
Yeah, unfortunately I lose a lot of hair. My shower drain was constantly clogged up with my hair. It has slowed down though. Anyway, I had superlong, red hair and needed to cut it chin-length, because it was just so thin. I am okay with the new haircut. It grows back eventually.

My doc is not planning on taking me off 6MP unless it stops working and/or my blood work is bad again. You basically take it as a maintenance drug. I also take Asacol as a backup, at the moment I take 2 x 2 Asacol a day. My energy level is back also. I was able to do yoga, the next day pilates and the following day cardio - who hoo! I am taking a break today though cool

Posted 5/2/2009 9:58 PM (GMT -5)
My son has had incredible results with 6MP.  It took a very long time to get him into remission, like maybe 6 months.  It was worth the wait. One benefit over Remicade is with our insurance, a 3 month supply costs $20. 6MP gave me my son back:)
Posted 5/3/2009 1:45 PM (GMT -5)
     I've been on 6MP for over five years now.  The doctor took me off for a short while last year because my amylase and lipase levels were very high when I was admitted to the hospital.  However, he placed me back on it after a few months because I just could not get off the prednisone.  It still took another three months to kick in along with the prednisone.  He had me on 75 mgm but my white count went down to 2.4, so I lowered the dose to 50 mgm one day and 25 the next.  This has been working very well.  I still am on Colazal , six pills a day.  My white count in April was 2.9.  I get monthly CBC's.  I did have some thinning of my hair but started using Nioxin with great results.
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