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Time to add 6-MP - experience, etc.??

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Ulcerative Colitis
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Posted 2/28/2009 1:07 AM (GMT 0)

I'm taking 6MP now since 3 months and it looks like as if I will be quitting it soon ... . My side effects have gotten so bad in the last 4 weeks (daily strong headaches, nausea, total loss of apetite and crazy vertigo-type dizziness whenever I turn my head or just move my eyes for hours a day), there is discussion to quit it. I had a final liver test done today after I cut back to 50 mg from 75 mg. My liver enzymes were very high and have calmed down on 50mg a bit, but not enough to say it is safe for me. The Prometheus (sp) test I took to see how much I metabolize 6MP showed that I am a low responder and that 6MP is likely not doing anything for me, meaning that my remission is conincidential and wasn't brought on by 6MP.

I thought I let you know that the side effects - if there a will be any for you - can get worse with time and might be not there from the get-go. I had tolerable side effects in the beginning, but now life is so miserable. I have no UC symptoms, but dizziness, nausea, headaches and bla bla bla. And major hair loss? Yeah, that, too.

Oh, I take 6MP at 6 PM in the evening and for me it does make a difference when I take it. I get incredibly tired around 2 hours after taking it and so I could never take it in the morning or with lunch. I like the sleepiness it causes, because it makes me sleep all through the night.

Just my experience.

Posted 2/28/2009 1:17 AM (GMT 0)

Just got the pills with instructions - says one pill once a day - with or without food so looks like I have a lot of options.  Start with taking it with breakfast with prednisone - easier to remember.  I KNOW that I need to drink a lot of water, etc. - anyone here have problems with that?  I just hate water and rarely drink anything extra all day.  I drink small glass of water with pills twice a day - 2 cups of coffee and maybe a glass of milk all day - guess I will have to try to drink more!

ElaineNY

Posted 2/28/2009 1:29 PM (GMT 0)
Definately drink lots and lots of water. I have always been a big water drinker so it wasn't much of a change for me. But what I found works better is to buy bottled water - that way I can keep track of how much water I am drinking. But if you don't like water, what if you were to drink Kool-aid, or water with lime or lemon or anything that will flavor your water?
Posted 2/28/2009 3:23 PM (GMT 0)

I just took my first 6-MP and drank a glass of water - small!  We have great water - filtered, etc. so I put it in bottles in refrigerator.  Not sure how much I SHOULD (minimum) drink but any would be more than now!  As for the fruit flavored, etc.  they give me GERD and too many calories as I am much overweight.  I will try to drink something for sure.  My husband has had kidney stones and I know THAT pain is worse than my UC for sure!

Wish me luck with the 6 MP - I feel sooooooooo great - hate for that to change!

ElaineNY

Posted 2/28/2009 3:29 PM (GMT 0)

scarlett - if I have that many side effects I WILL stop taking it.  Fought with my doctor about stopping Colazal, Asacol, Lialda, etc.  I told him already if the medication makes me FEEL worse than the UC - I WILL not take it.  I was not even sure about trying it or prednisone - but decided to try.  I am VERY sensitive to all medication and can't take anything stronger than Tylenol for pain, etc. etc.  However, seems also that I get reverse reactions sometimes - like hyper from sleeping pills, no problems with prednisone like gaining weight or anything.

ElaineNY

Posted 3/1/2009 12:26 AM (GMT 0)
     Elaine, the only side effect I have from the 6MP is the thinning of my hair.
Posted 3/1/2009 12:36 AM (GMT 0)

Thanks Christine - you are keeping my spirits up.  Today I felt a little "out of sorts" but nothing else funny.  Winter here so depression is common but doing ok there too.  My hair is pretty thick and pure white.  I don't want to lose it BUT it would be a decent tradeoff for remission - able to travel, etc. etc. before I get any older!!

ElaineNY

Posted 3/1/2009 3:39 AM (GMT 0)
I'm on 75mg and have been for about 5 years now. I had some hair thinning when I started it...some fell out but nothing serious. It stopped after about two months on it. Besides that no other serious side effects from what I can tell. Just try not to drink while taking it. My doc stresses that.
Posted 3/1/2009 3:43 AM (GMT 0)

Thanks - I don't drink alcohol if that is what you mean - not for many years.  My problem is trying to drink more water.  I been on prednisone for 3 weeks and I just don't drink much water or fluids at all.  I am forcing it right now with reminders from my husband.  Water on an empty stomach always makes me nauseated - have to keep working on it!

Hope I have the luck you and Christine have had.  I am so happy without blood, diarrhea, cramping, etc. etc. - afraid it won't last!

ElaineNY

Posted 3/4/2009 9:29 PM (GMT 0)
I take mine at night time before bed....I still get nausea....I have been taking 6MP for the past 6 months or more and have just started to flare again...
Posted 3/4/2009 9:37 PM (GMT 0)

Just started taking it at night and was nauseated again about 4 a.m.  Only taken 5 pills - hoping it will get better - as long as it does not get worse!

Thanks for your input!  Sorry it is not working for you - yet!

ElaineNY

Posted 3/4/2009 10:46 PM (GMT 0)

Elaine,

it might help if you eat a little bit before you go to sleep - just some crackers will do. So do you eat a bit before you go to sleep? You might want to try that. The beginning of 6-MP is harsh, that's true. I personally feel icky when I take it on an empty stomach.

Well, my last liver test was normal (Thank God!) and all the side-effects have subsided within the last week. There is still hope! Maybe I just needed to get used to 50 mg. Let's see how good or bad the CBC test is that I will be having on March 12.

Hang in there, 6MP might very well work for you. Keeping my fingers crossed!

Posted 3/5/2009 1:45 AM (GMT 0)

Eating something makes me laugh - remember on am on prednisone 20mg. and eating constantly!!  Actually, trying to control myself.  I always eat with medication even when I am not suppposed to - messes with my IBS if I don't!  Took it at 7 for two nights now.  See how I sleep and if I wake up in the night sick!  My breathing seems shallow also for a while.

I started 6MP - 50 mg. on February 28 and will be until March 16 before I see the doctor.  I have NEVER had a blood test - probably last year sometime. 

I will know when/if the side effects get too much for me and call the doc - as usual!

ElaineNY

Posted 3/5/2009 1:35 PM (GMT 0)
I find the usage of your 6mp slightly unusual Elaine. Before I started on mine, my GI did a Prometheus test. This is a specialized test to see if I had the proper liver enzymes to process it and also to see if I was a candidate for 6mp or Imuran. Then when I was in the good to go, I started out at 25mgs for a week - went in for bloodwork, then he upped it 50mgs - went in for another blood test a week later and then another one a week after that. I had weekly blood draws for about a month. I still get my blood drawn every 3 months and I've had the Prometheus metabolites test twice. This is test to see how you are metabolizing the medication. Maybe you should call your doc up just to ask about this.
Posted 3/5/2009 2:21 PM (GMT 0)

I agree with Sherry. The doctor needs to know what your normal liver enzyme values are  BEFORE putting you on 6MP. Like Sherry, I had blood tests every week in the beginning; the second month of 6MP I went in twice a month and now I go once a month (unless I feel the need for additional tests because something feels off). I always have this pattern of tests now: Liver, CBC, liver, CBC and so on.

It is crucial to test your blood on a regular basis, because the blood tests will show much earlier BEFORE something goes awry; otherwise you are up to relying merely on your own sense of well-being to tell that 6MP is doing more harm than good and end up with more problems.

I would nag my doc about the blood tests.

Posted 3/5/2009 2:39 PM (GMT 0)
I just started on 75mg of 6MP this morning after a month of 40mg of prednisone and 4 Lialda per day failed to bring about remission. Thanks to everyone for posting your experiences and advice. It's a big help.
Posted 3/5/2009 2:52 PM (GMT 0)

I don't agree or disagree with your girls!  I searched my memory and tring to think what my GI doc did, etc.- last year I had two colonoscopies and this year a sigmoid - lots going on for me to remember.

I did have a Prometheus test (when I looked it up) along with my first colonoscopy which was June 2008.  At the time of my followup visit the gastro doc told me everything was "normal" - no infection, no liver problems or anything.  He also did an endoscopy and I have a small hiatal hernia and GERD. 

So, if I did not have an appointment in 10 days I would call. AND I will call if I feel sick or different in any way.  Each day I take the 6MP - this is day 6 - I feel better - less problems.  I am feeling so good I hate to think about the boat rocking as they say.  My only real problem is my appetite.  Prednisone gives me the munchies.  I read that 6 MP I could lose my appetitie - wish it would happen soon.  I am obese and really don't want to put on any more. 

Thanks for your replies and I most certainly will check about the blood tests.  In fact, I will call the NP (she always calls me back) and see if the doc maybe forgot to have me go to the lab before my visit.

ElaineNY

Posted 3/5/2009 4:33 PM (GMT 0)

JRob - whats up!! Have not seen you around in a while!

I too am now on 6MP. Everybody...March 20th will be 2 months on it...and I am still bleeding??!!!! Is that normal? I take it at night. I have had severe appeptite loss and thinning of the hair...but nothing to write home about. I am going to the GI tomorrow. should i ask to be bumped up to 100 mgs???

Posted 3/7/2009 6:41 PM (GMT 0)

Wishful - hey, just saw your post.  Would you please send me your loss of appetite - I guess the prednisone 20 mg. is overriding the 6 MP as I want to eat ALL the time.  I have been on 6 MP one week now along with the prednisone 20 mg. for going on three weeks.  Having bad days and good days - more good than bad but I don't like the bad ones.  Because I have IBS sometimes it IS whta I eat and I know it - makes me "go" more - still no blood or diarrhea but some discomfort in rectal area.  I do not feel in remission!

Seeing doctor on March 16.  The prednisone got me where I am and hoping the 6 MP or something gets me the rest of the way.

ElaineNY

Posted 3/7/2009 8:39 PM (GMT 0)
     Wishful....did you start the 6MP while still taking prednisone?  My GI doctor said the 6MP takes about three to six months to "kick in" while still tapering the prednisone.  It took me about three months this past time.  In remission now since Nov 1st.
Posted 3/8/2009 12:29 AM (GMT 0)
When I was taking my 6MP, I had these acne/rash all over my top body. G.I. doctor told me to see the dermatologist but I didn't
Also, I drank tons of vodka on the weekends while on 6MP. VERY bad.
Posted 3/8/2009 1:47 AM (GMT 0)
Hi Elaine - Just wanted to add my two cents! I started 6 MP in October, and feel the best I've felt since being diagnosed. It did take me a few months to feel great - I, too, was weaning off the pred. when I started the 6 MP. But, I've been off the pred. since December, and that's the longest I've been able to stay off of that drug! I did get a blood test the same day the 6 MP was prescribed, and went every 2 weeks for 6 weeks, then monthly after that. So far, so good. Tests all look good. Definite nausea in the morning, but I always had terrible morning sickness when I was pregnant, so I'm used to that! Hope you have good luck with it!!!
Posted 3/8/2009 2:23 AM (GMT 0)

bap06 - thanks for the encouragement.  I do not take any other medication - I see you take LIada  I tried that but too many side effects from it.  I put in a call to the NP Friday but too late for her to get back to me - I will try again Monday regarding blood tests.  Only problems I seem to be having more gas in chest - it moves around and I take Gas-X so don't know - maybe something I ate too.  Yes, my nausea is much better - it was worse when I was on no medication before diagnosis so I don't really mind.

ElaineNY

Posted 3/8/2009 5:09 AM (GMT 0)
hey all! yes, i actually started the 6MP while I was in the hospital back in january. i was on IV steriods and then released on predisone. I weened down and am off the prednisone....but never really got better. Still bleeding...or the bleeding got worse since i got off the prednisone. I dont want to go back to it.  Do you have to take steriods when starting 6MP or for it to work?

Posted 3/8/2009 1:44 PM (GMT 0)

My understanding - and I just been taking 6MP for 8 days - is to get the UC in remission with the prednisone - start tapering and add 6MP so when you get the prednisone tapered and finally/hopefully get off it the 6MP will have "kicked in" to KEEP you in remission - that is supposed to take about 3 to 6 months.  Now, that is the way it is supposed to work!  I feel nearly in remission as far as no blood, no diarrhea and only slight discomfort in rectal area at times.  I would be very happy if I could stay where I am!

ElaineNY

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