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Awaiting MRI scan and newly medicated with Mercaptopurine

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Ulcerative Colitis
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Posted 1/19/2018 1:58 AM (GMT 0)
Hello all,

I was diagnosed over Christmas with Colitis after a flexible sigmoidoscopy revealed a very inflamed colon. Dr has yet to give a definitive diagnosis but is certain I have Ulcerative Colitis. I’ve been on steroids and asacol since Christmas Eve of last year and have just been perscribed my first method of treatment, mercaptopurine. Needless to say I read about the drug and it’s side effects upon the suggestion of my dr but I am still worried. I was told that I’d need an MRI scan to check if the inflammation had spread further through my bowel and to check the small intestine before I begin treatment but because I have had symptoms since as early as August that have not let up, I guess the treatment is being rushed. I’m due for the scan on Valentine’s Day. I guess I’m posting this because I feel some advice would help ease my nerves about it all. Has anyone had any experience with this medication? I have been diagnosed with depression and anxiety disorder as well so this whole situation has been stressing me out especially. Still trying to figure things out in terms of diet and adapting to life with a chronic illness.

Sorry this is so long, thanks for your time
Posted 1/19/2018 2:22 AM (GMT 0)
Merctapurine is also known as 6MP. I was on 100 mg for about 7 years til surgery recently. You'll need frequent blood test to check blood counts til Dr figures proper Mg that works for u. Never noticed any side effects from 6MP
Posted 1/19/2018 2:48 AM (GMT 0)
Hi, it can be very overwhelming dealing with all of this. I am sorry that you now likely have UC. Did your docter do stool tests to rule out anything pathogenic? Asacol plus Prednisone is a method of treatment, too. Have you had any improvement since being on them? How many bm s a day at diagnosis vs now? Feb. 14 doesn't sound terribly rushed to me, but does give some time for them to see if you are responding to your current meds. Then, depending on the severity, they might add the 6mp. Feel free to post as long winded as you want to on here. Having a place to vent where people actually understand helps my anxiety.
Posted 1/19/2018 10:30 AM (GMT 0)

3timechamp said...
Merctapurine is also known as 6MP. I was on 100 mg for about 7 years til surgery recently. You'll need frequent blood test to check blood counts til Dr figures proper Mg that works for u. Never noticed any side effects from 6MP

I’m still trying to wrap my head around all the alternative names for drugs and different treatments. So far I’ve found the crohnsandcolitis org online to be very helpful; I even subscribed to their mailing list and received a radar key and a “can’t wait” card. I actually have my first blood test today, it’s quite alarming at first the amount of blood that needs to be taken anyway for monitoring. I’ve heard from a few people that surgery was the best thing that happened to them because it’s given them control again but my dr has stressed surgery is the very last option. As for now I have been perscribed 50 mg of 6MP and received the drugs yesterday from the local pharmacy, have yet to start taking them.
Posted 1/19/2018 10:33 AM (GMT 0)

Spring said...
Hi, it can be very overwhelming dealing with all of this. I am sorry that you now likely have UC. Did your docter do stool tests to rule out anything pathogenic? Asacol plus Prednisone is a method of treatment, too. Have you had any improvement since being on them? How many bm s a day at diagnosis vs now? Feb. 14 doesn't sound terribly rushed to me, but does give some time for them to see if you are responding to your current meds. Then, depending on the severity, they might add the 6mp. Feel free to post as long winded as you want to on here. Having a place to vent where people actually understand helps my anxiety.

It has been overwhelming: I wasn’t referred to a specialist until what felt like was too late; I’d seen my GP on/off about my symptoms over the course of 2 months but I had to request a stool sample be taken. When I phoned in for the results they said nothing was wrong but the sample itself looked alarming to say the least.When I saw the gastroenteritis specialist he immediately concluded it was likely colitis and scheduled me for a procedure the very next day! 2 very opposite approaches to this...

When I started on the steroids and asacol I was taking 30mg of prednisone + 3 800mg asacol daily. I was supposed to drop the prednisone by 5mg every 10 days but Dr advised I stay on 25mg for as long as 3 weeks. I’ve just gone down to 20mg this week. With the asacol, I was vomiting regularly so stopped taking it for about a week, tried taking 800mg a day for a couple days and currently am taking 2 800mg daily.

In terms as bowel movements I was going as many as 9 times a day with urgency and spent hours on the toilet. Lately, it lessened to up to 4 times a day. Because I’d been bleeding for so long I needed to get an iron infusion the other week, I believe it was called ferinject.

I feel as though it’s been rushed because the last appointment I had with my dr we were just discussing possible treatments and he said himself we are not there yet, we need to continue with the base of IBD treatment to get the inflammation down so that we can have a better look at the digestive system and know for sure what would be suitable, hence the MRI but now I have my first round of drugs before the MRI screening. I am in a panic of sorts because I am not sure if I should start the 6MP now, before my next appointment with my dr and before the MRI scan. I’ve also been floored with a cold, I truly did not believe this auto immune disease could really take so much out of you!

Post Edited (edem2813) : 1/19/2018 7:08:26 AM (GMT-7)

Posted 1/19/2018 11:48 AM (GMT 0)
It's difficult when we're first diagnosed, we tend to fear the worstcase scenario and that there's new worries around every corner. You'll be fine, this gets easier the longer you've had an UC. Many of us here have had UC for many years and we live mostly normal lives with success in our careers, pursue our hopes and dreams, have our own familys. Remission is the treatment goal and it makes us essentially normal.

Right now there's a lot of trial-and-error in controlling your Uc. Why? Your doctor starts with the very weakest meds, waits a while and if it's not enough adds stronger meds to it. It's not uncommon to not get it right the 1st, 2nd, or even 3rd time. We all go through this and it takes a series of months to get it right. The treatment goal is to get us into a remission or a total absence of UC symptoms and when you're in it there's no reason to worry about uc.

I've been on mercaptopurine/6mp since 2012 and haven't had any side effects from it. Few experience serious side effects from it. about 20% initially experience nausea from it which clears up in a few weeks. To reduce the odds, take 6mp just before bed with a snack.

First, they try anti-inflammatory medications to treat uc. When those aren't enough then they slightly weaken the immune system through immunomodulators like 6mp/imuran or biologics like humira/remicade.

When we flare our white blood fells (wbc) skyrockets and wbcs directly cause inflammation, resulting in uc symptoms. 6mp will reduce the amount of wbc you have and the blood monitoring makes sure those wbc levels stay in an acceptible range.
Posted 1/19/2018 2:28 PM (GMT 0)

iPoop said...
It's difficult when we're first diagnosed, we tend to fear the worstcase scenario and that there's new worries around every corner. You'll be fine, this gets easier the longer you've had an UC. Many of us here have had UC for many years and we live mostly normal lives with success in our careers, pursue our hopes and dreams, have our own familys. Remission is the treatment goal and it makes us essentially normal.

Right now there's a lot of trial-and-error in controlling your Uc. Why? Your doctor starts with the very weakest meds, waits a while and if it's not enough adds stronger meds to it. It's not uncommon to not get it right the 1st, 2nd, or even 3rd time. We all go through this and it takes a series of months to get it right. The treatment goal is to get us into a remission or a total absence of UC symptoms and when you're in it there's no reason to worry about uc.

I've been on mercaptopurine/6mp since 2012 and haven't had any side effects from it. Few experience serious side effects from it. about 20% initially experience nausea from it which clears up in a few weeks. To reduce the odds, take 6mp just before bed with a snack.

First, they try anti-inflammatory medications to treat uc. When those aren't enough then they slightly weaken the immune system through immunomodulators like 6mp/imuran or biologics like humira/remicade.

When we flare our white blood fells (wbc) skyrockets and wbcs directly cause inflammation, resulting in uc symptoms. 6mp will reduce the amount of wbc you have and the blood monitoring makes sure those wbc levels stay in an acceptible range.

Yes, exactly that! Moments after my initial procedure when I was wheeled back into the ward I told my mum (who was accompanying me) about the biopsies they’d taken and the rundown of the examination and what they’d found and she was already googling things and telling me I can no longer eat this and that. I understand it’s a case of trial and error with diet in terms of what can cause a flare up or worsen it. Still cautious about what I eat.

I’m trying not to be so doom and gloom about my current state because chronic conditions are not always debilitating to the point your life is put on hold and the world ceases to spin. We’re still people, we still function as regularly as the next person.

Thanks so much for this, I feel as though I have a better understanding in general now. I was actually most concerned about the nausea above all else and was still debating how to take the 6MP- with or without food but that is a helpful tip and I will likely do as suggested! Many thanks


An update on the blood tests/6MP:
I’ve had my first blood tests taken but I have not started the 6MP. I am planning on taking my first dose tomorrow night, as suggested. I’d questioned the nurse how soon the 6MP could affect my liver for it to show immediately in the results as I only got the drugs yesterday so was doubtful anything acutely worrying would occur so soon. She said it wasn’t likely and because I must have weekly tests it would not make a difference if I started the 6MP that day or the next. I have scheduled blood tests for the next 4 weeks and from there it will be a case of finding out whether or not weekly monitoring is still necessary or if it can be bumped to fortnightly.


Thank you all for your responses !
Posted 1/19/2018 3:19 PM (GMT 0)
You had a baseline blood test, which tells them what your bloodwork looks like before starting the medication. Now they can watch how your numbers change.

6MP is a very, very slow acting drug. The pill you take today will not have a healing affect on you for at minimum 6-weeks. Overall it takes about 3-months to reach ideal therapeutic (healing) affect. Why?
They intentionally start you on a low dose, you said 50mgs and that would be a low dose. They watch your first couple blood test results and then increase your dosage, and then it takes another 6-weeks for that to affect you. We talked about intentionally lowering the amount of WBCs in your body, that's what 6MP does. 6MP cannot affect the WBCs that are currently cruising around in your circulatory system. What 6MP does is slow the rate in which new WBC are created. Our bodies naturally clear WBC from our circulatory system on a regular basis. After about 6-weeks, all of the old WBCs are gone and filled with new reinforcements that are diminished in numbers thanks to 6MP. Again, the less WBC you have the less inflammation can be caused in your large intestine. You heal.

So, your WBC will not change quickly in your blood test results, minimum of 6-weeks to see it.

However, your Hepatic Function Panel blood test would spike fairly quickly if you are having a bad reaction to the medication. It's fairly rare but can happen. Likely your first or second test after taking the medication would show increased numbers of liver enzymes. No worries, that test result is an early warning sign, no damage is done at that point, and in that eventuality, they either reduce the dosage or discontinue the medication entirely and try something else.

More details:

Immunomodulators
Standard blood tests for monitoring of 6mp/Imuran/azathioprine are:
  • CBC with Differential. This test is a Complete Bloodcell Count (CBC). These drugs intentionally lower your white blood cell count, and this test monitors to make sure it doesn't get too low.
  • Hepatic function panel (LFT). This test looks for elevated liver enzymes a warning sign for adverse reactions to these drugs.
Your lab should enter your tests as a "standing order" within their system. When you arrive tell them you have one, and paperwork won't be necessary with every visit, as you're already in the system. Test intervals are often weekly, then biweekly, then monthly, and then remain at trimonthly while you're on these drugs. After multiple good results, your doctor will likely decrease their frequency.

After a while they might want to run this diagnostic to make sure you are at ideal levels:

Thiopurine Metabolites is a diagnostic test for immunomodulators that determines if you have the proper concentration of that medication in your system for optimum therapeutic (healing) effect, and it is helpful in establishing proper dosing for individuals.
Posted 1/20/2018 2:55 AM (GMT 0)
This disease really can knock the wind out of our sails. When I was first diagnosed and home from a hospital stay, I was too weak to do anything but get to the bathroom. Be gentle with your self, especially as you have a lot to adjust to. I am sorry your GP didn't take it very seriously. My GP was (unfortunately my insurance doesn't cover her anymore) a NP whose husband has UC. She called in my referral as urgent. have read what seems like quite a number of stories of it taking quite a while to be diagnosed. Glad you are on a path of treatment now, though.
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