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Help - Please! Doctor wants to stop 6MP!!!

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Ulcerative Colitis
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Posted 1/27/2019 4:57 PM (GMT 0)
Hi everyone -

I'm hoping I can get some insight regarding continuing or discontinuing 6MP.

I was diagnosed with ulcerative colitis in 9/2006. In March 2007 - I started 6MP and by May 2007 I was in remission.

Since achieving remission - I have done very well - I've had no relapses and have tolerated the 6MP and Lialda very well and I'm symptom free (yay!!) I started on 100mg of 6MP and was then dropped down to 75mg which I still take daily. I'm also taking Lialda daily 2 1.2gm pills every morning.

The last two colonoscopies have shown complete remission. Recently - my gastro ordered a blood test to see how well the 6MP was being metabolized by my body and the result came back last week showing I am receiving no therapeutic benefit from taking the 6MP. He has recommended I stop taking the 6MP (to taper off of it) but to continue taking the Lialda.

The thought of stopping the 6MP terrifies me!! I know, I know - I'm probably one of the few, if any at all, who want to stay on it and I know logically, in my brain, I'm taking medication that is doing absolutely nothing - but I'm still super scared. My gastro thinks the chance of relapse is low since I'm not receiving any therapeutic benefit from the 6MP anyway.

My previous gastro doc did not want to "upset the apple cart" - he was fine with me continuing to take both meds since I was in remission and tolerating the 6MP. I was 100% completely on board with his thinking.

I must be very, very special because I also have relapsing / remitting multiple sclerosis (diagnosed April 2005). I'm so scared of stopping the 6MP and the potential for relapse - I'm not comfortable taking that gamble.

Any thoughts?

Thank ypu!
Karen

UC -
6MP - 75mg - once daily
Lialda - 2 1.2gm tablets in the morning.
Posted 1/27/2019 5:15 PM (GMT 0)
Can you ask for a second opinion from another gastro doc? (Or the doc who looks after your MS?)
Posted 1/27/2019 6:55 PM (GMT 0)
What medications do you take for MS?
Posted 1/27/2019 10:03 PM (GMT 0)
Thank you so much for taking the time to respond - I really appreciate it!

poopydoop - I've been thinking of getting a second opinion. I love my neurologist who treats my MS - it is definitely worth asking his thoughts on this issue.

Oligodar - The meds I'm on for the MS are:
Copaxone - 20mg subcutaneous injection daily
Lunesta - 3mg pill nightly
Simply Sleep - OTC - 2 pills nightly
Bupropion XL 150mg - 2 pills 1xday
Cymbalta - 30mg - 1 pill daily - the Bupropion and Cymbalta are for depression - MS related.
Sumatriptan - 50mg - take as needed for migraines
Myrbetriq - 1 25mg pill daily - overactive bladder due to MS

I'm on a lot of medication - but like a well oiled machine everything has been working together (thankfully) and both diseases have been managed well (overall) the past several years. My MS is definitely higher maintenance though.
Posted 1/27/2019 11:17 PM (GMT 0)
Are any of the MS meds helpful with treating the UC?

If you are not getting a therapeutic effect then it’s probably not worth taking it.

I’d definitely run everything by neurologist before making any changes to your meds.
Posted 1/28/2019 2:22 AM (GMT 0)
How long have you been on the 75mg of 6mp vs the 100mg that you were started on? And what is your body mass (in pounds or kg)?

How severe was your UC when first diagnosed, and what extent was it (ie, how much of your rectum/sigmoid/colon had active UC)?

If it was fairly mild and/or fairly limited when you were diagnosed, that *might* sway your thinking a little and mean it's more likely you could get by on just mesalamines.

But the truth is you just can't know for sure either way. Say you stop the 6mp and flare in 6 months. You'll blame the flare on stopping the 6mp. But there's no way to know for sure that is the reason. You might have flared anyway in 6 months, even if you'd stayed on the 6mp. Say you stay on it and don't flare for the next 3 years. You'd credit the 6mp. But maybe even if you had stopped it, you'd go the next 3 years without a flare.

I'd say if your disease was mild and/or limited at onset, and you've gone this long without flaring lately, and the blood test shows you're below therapeutic levels of 6mp, that it's pretty reasonable to stop it.

If you do flare, you can always restart it and go to a dose that's higher and is therapeutic if necessary.
Posted 1/28/2019 8:36 AM (GMT 0)
Have you ever considered biologics for treatment MS?
Posted 1/28/2019 2:06 PM (GMT 0)
I would taper the 6mp. If you're at 75mgs now, that's 1.5 pills a day (if you have 50-mg tablets, like I do). Take 1 pill a day for 2 months, then go to 1/2 a pill for 2 months. Know that a change in dosage is going to take 6-8 weeks to have an affect on you. I think if you come down gradually, rather than quit cold-turkey then you are safer of avoiding a relapse, and ease your mind too. I see no reason not to get off of the 6mp, if you're in a remission and you're not within therapeutic levels of it anyways.

I'm 72 kilograms (160 pounds) and take 75mgs a day of 6mp. As a weight-based drug dosed 1.0-mgs per kilogram, 72 kilograms and 75mgs is just about perfect as it gets for me. If your weight is similar then the dosing is about right.
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