HealingWell
Search Close Search
☰

Questions about 6mp

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 2/20/2012 3:06 PM (GMT 0)
Ok well I'm almost there and I'm scared to death.  I am a very natural type person.  I eat organic and avoid toxins like the plauge.  My kids even have chemical free beds.  So you can imagine how afraid I am to try 6mp, which may not even work.

Well I've been fighting a flare since July and nothing is working.  I can go about my day and not have too many bms.  Mostly 1 or 2 and sometimes 3.  But there is still blood.  First on stool and now its more on tp and next to stool even on hydrocortisone enemas 1x a night.  Prednisone got me to stop bleeding but it came right back 2 wks later.  have never had that happen before.  I've always tapered and been syptom free.

So how long did 6mp take to work for you especially if you had proctitis and bleeding main symtom?

Were many of you able to tolerate this drug without damaging your liver?

If you took that test to determine your liver function is that usually a good indicator that you will be able to process it?  I forget what it's called but I had to go to a special lab for it.

How often do people really get cancer from this crap?  Would they know by blood test?  I don't want to fear everytime I get a fever or something that I have another terrible disease.

I swear I considered the surgery today and started looking into it. I know that would be huge but I want a normal life.  I am obsessing about everything I eat and basically fear eating at this point.  I'm not having a good day.

Thanks

Posted 2/20/2012 3:21 PM (GMT 0)
     I was on 6MP for eight years (2002 - 2010).  It didn't keep me in a long term remission.  Everyone is different.  I suffered with ulcerative proctitis and tried Remicade and then Humira too but became prednisone dependent the two years prior to surgery.  I was diagnosed in 1998 and started on Asacol and Prednisone.  I enjoyed a two year remission but flared in 2000.   My GI doctor switched me from Asacol to Colazal along with the Prednisone.  Flared in 2002 and that is when my doctor added the 6MP.  However, I flared in 03 and it was downhill after that with the flares becoming more and more frequent. 

     My operation was a total colectomy with end ileostomy, June 28,2010.  I was not a candidate for j-pouch for several reasons least of all my age 65, prednisone dependency for so long, uncontrolled high blood pressure and type 2 diabetes from prednisone.  I am happy to say I went from taking 17 - 25 pills daily down to only 1 and that is for my BP.  Surgery is not a walk in the park but I was at the end of my rope.  It did give me my life back.

     I believe it was the Prometheous Test they perform to see if your system will metabolyze the 6MP properly.  My doctor didn't request the test till after I was on the med for 6 months..lol.  I did take 50  mgm in the beginning and had blood tests for liver and pancreatic enzyme functions every three months.  My bilirubin was always twice the normal limits but my doctor did not seem concerned rolleyes .  When he increased my dose to 100 mgm all hell broke loose....I really became sick.  I am just so happy to be off all that crap.

Posted 2/20/2012 3:28 PM (GMT 0)
I also am an organic food girl. I am very picky about what my kids eat and are exposed to. I also have proctitis (although mine goes a past the rectum) I am on Imuran which is very similar to 6mp.

I was in varying states of a flare for 4 years before I tried Imuran. I honestly wish I tired it earlier. Luckily I switched to a wonderful doctor in 2010 who gave me lots or resources to read about Imuran. There is a lot of mis-information out there about these drugs so I relyed on the medical research articles not on word of mouth or the internet. The dose that is given for UC is not considered high risk at all. According to my doctor and the information I read you are at a greater risk for colon cancer from the constant inflammation from UC (or proctitis) then you are from Imuran or 6mp.

So for me there were two determining factors: 1. I felt I had a higher cancer risk from allowing myself to stay in a flare than I did from the medication 2. Quality of life

I began Imuran in October of 2010 and it took 6 weeks at least to make a difference but every week after that I got better and better until I was finally in remission. I have stayed in remission ever since!!!! (knock on wood)

You will have regular labs to make sure your liver and kidneys are functioning properly and also to check your blood count. I had to go in for labs every 2 weeks for a month, then every 4 weeks for a few months, then every 2 months for several months and now I only go in every six months...because my labs have consistently be perfect. The lab work was a hassel at first but the Imuran worked so well and it gave me peace of mind to know my labs were being closely monitored.

All in all it has been a God send for me and I don't have to take any other medicine.

Hope this helps.
Posted 2/20/2012 3:36 PM (GMT 0)
Thank you Christine 1946. Sorry you have had to go thru so much, but I'm glad you seem happy with your choices now.

that field

that is what I've been thinking. so afraid of ongoing inflammation and cancer risk. Were you on any meds when you had your kids? I have 2 also and wish I could have one more. I didn't even have pain meds so being on UC drugs sounds very uncomfortable. I took nothing with my kids. I would love to private msg you. Sounds like we have a bit in common and I was looking for another Mom around my age. If now that is ok.

Thank you! Any other responses are totally welcome.
Posted 2/20/2012 3:44 PM (GMT 0)
I think most docs want a TPMT test done through promethius which tells them if you have the enzymes to process the drug property. That will determine how often you'll have blood work done at the beginning etc. Of course, just because you have a good TPMT score doesn't mean you won't get a reaction but it's less likely. Has your doc suggested this?
Posted 2/20/2012 3:51 PM (GMT 0)
killcolitis

Yes I've had the test a few months ago. I agreed but was not ready for the 6mp yet, still not ready....so scared. But I am researching and trying to feel more comfortable if that is possible.

They said I was fine to take it I want to find out the score though to see if I did well or just good enough.

I had horrific reactions to 5ASAs so that makes me scared too.
Posted 2/20/2012 4:41 PM (GMT 0)
My dd could not tolerate the 5 ASA's- they made her symptoms worse.
She has done very well on 6-MP- she has been on it almost 2 years problem free.

i know you don't want anything unnatural in your body...who does???

Can you imagine having to make the choice to put your precious child on this med?
You really know when you have no choice and you do what you have to do.

good luck-
Posted 2/20/2012 5:11 PM (GMT 0)
IBDISTHEPITS

Thank you. I know..honestly the blessing in all this is that my kids don't have this dreaded disease. I pray they never every get it. So as bad as my life seems right now, I am so thankful it is me instead of them.

So glad to see that she is doing well. Do her labs always look good? Do you know what her preometheus test score was? Have no idea how to spell that.

Also does she do anything dietary or supplements? Will you keep her on it indefinately or wean off at some point?

Thanks
Posted 2/21/2012 5:57 AM (GMT 0)
seasons21
My dd's labs have always been good, One time one of her liver function tests was a bit high. GI took her off med for a few days and re-tested and the number came down so she restarted. That was the only time any of her labs were out of whack.

Dr always checks her SED rate and it was normal- it started creeping up for no reason as she was doing perfectly well. I read something about the SED rate not always being accurate while on 6-MP so one time we checked SED rate and CRP. SED was high and CRP normal so now we just check the CRP level- another marker of inflammation in the body.

Her Prometheus levels have actually never been good. She is never in therapeutic range- always lower but she has done great for 2 years so we don't check it anymore.

With kids the most important thing is that they grow and get through puberty without lost of problems. I have always been told we would reevaluate 6-MP after she has been on it for 5 years-

We see GI every 3 mo and get her labs checked. I am just grateful that she is doing well.
It is really hard to think about stopping something that is helping. I don't want to start a flare so I always worry!

Yes she takes VSL#3DS and vitmains, Iron and Vit D

I am sure at some point we will try her off this med and see where we end up- just not sure when!
Posted 2/21/2012 2:27 PM (GMT 0)
I'm not sure if you're looking for opinions on what to eat but I know how you feel being scared to eat.

After many of years of trial and error here's what I've found works for me. When flaring I eat chicken/fish/eggs and steamed vegetables (with plenty of homemade chicken soup).

It sounds a bit boring but it works... I realize we're all different but thought this might be worth sharing.
Posted 2/21/2012 5:41 PM (GMT 0)
Thank you Benji I appreciate you taking the time to share.

I am also eating a lot of chicken soup. Always wondering if I should eat the carrots though. Sometimes I do and sometimes I don't. I miss eggs so much but read you should not eat them on auto immune version of paleo. Plus years ago I had an senstitivity test for delayed food allergies and I cam up with a small reaction to egg. I would LOVE to add those back, I'm so sick of meat. Torn on that one. I eat wild salmon and chicken... oh and so it goes.
Posted 2/21/2012 7:59 PM (GMT 0)

seasons21 said...
Thank you Christine 1946. Sorry you have had to go thru so much, but I'm glad you seem happy with your choices now.

that field

that is what I've been thinking. so afraid of ongoing inflammation and cancer risk. Were you on any meds when you had your kids? I have 2 also and wish I could have one more. I didn't even have pain meds so being on UC drugs sounds very uncomfortable. I took nothing with my kids. I would love to private msg you. Sounds like we have a bit in common and I was looking for another Mom around my age. If now that is ok.

Thank you! Any other responses are totally welcome.

I was not on any meds when I had my daughter because was not diagnosed until a few months after she was born.  When I got pregnant with my son I stopped all meds for the first three months which ended up being a bad idea (advice from a not so hot doctor) it caused me to flare really badly which is especially dangerous in the first trimester.  I went back on Lialda and Rowasa enemas from about 14 weeks on.  I was not able to use the enemas during the last few months but I stayed on Lialda.  I was not symptom free during the pregnancy but I did not have any big or major flares.  I started Imuran 2 months after my son was born.

We have decided not to have any more kids but my GI did tell me that the latest updates do now say low doses of Imuran are safe during pregnancy.  I am not sure if I would take it while pregnant though...that would be a really tough decision for me so I can relate.  Yes, please do send me a e-mail.  I would be happy to discuss in more detail.

Posted 2/22/2012 11:51 PM (GMT 0)
Seasons21 -

I totally hear you. I was diagnosed with Colitis in July of 2011. I am now entering my 4th month of 6mp. Things were going great, but I have learned a few new things that are worth sharing. After visiting my Dentist for a toothache I was prescribed Clindamycin. My Dr. didn't know that I was on 6mp (I need to have a bigger mouth!). After 2 days of antibiotics I started having my symptoms return. Via the internet I found out that being on immunosuppressants puts you at a higher risk for tooth abscess' (yipee ), AND clindamycin puts you at a risk for the C Diff infection. After speaking with my GI she suggested that I get tested for C Diff just to make sure and recommends taking probiotics while on antibiotics. I am awaiting the results. When on 6mp (and in general), you should be very wary of taking any antibiotics unless your life depends on it. I have always followed Dr.s orders, but now I know I need to say no more often and give my body a chance to defend itself. Wish I knew this a week ago! Good luck and good health.




UC dxd July 2011
Colozul, 6mp, fish oil, probiotics, multivitamin, Liverhealth vitamin (dandilion, milk thistle)
Posted 2/23/2012 2:02 AM (GMT 0)
I'm on azathioprine (Imuran) and not 6mp, but they use the same mechanism. This drug gave me my life back. I was being treated with prednisone at the same time and the combined therapy took about two weeks to get it controlled. I kept flaring when just on 5-ASA. My labs have been fine thus far so long as I keep up with my multivitamins.
Posted 2/23/2012 2:33 AM (GMT 0)
I so appreciate all your input. I'm not doing well mentally or physically tonight. I'm having such a hard time with this decision.


ThatField

How do I email you? I didn't see your address listed in your profile.

Thank you everyone, I love the feedback
Posted 2/23/2012 2:48 AM (GMT 0)
I tried 6-MP. I was very concerned about it, but figured I'd try it. Had the all the tests to see how I'd metabolize it. Initial liver function test was fine, but after getting to 75 mg (about 2 months) I had bad nausea, cramping, vomiting, total loss of appetite, and lost 10 lbs in a week. All symptoms went away within a week after I stopped it. Tried azathioprine (Imuran) a few months later (same drug just metabolized differently). At 100 mg my liver enzymes (ALT/AST) soared within a month. Had drug induced hepatitis. Liver enzymes went back to normal after stopping the azathioprine. Per my Dr's, I was an exception as neither had seen it cause a problem like I had. If you try it, you'll know fairly quickly if you Dr checks your liver function every 30 days and you can always stop it if it causes you any problems. After my episode with 6mp, my Dr told me the chance of adverse reaction were low, but that nausea, pancreatitis,and elevated liver enzymes were the ones to look out for.

Post Edited (italo) : 2/22/2012 7:57:06 PM (GMT-7)

✚ New Topic ✚ Reply