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Posted 6/5/2008 4:10 PM (GMT 0)
Some of these may be more suited for my GI, but since I don't see him until next week and some of you might just know the answers from personal experiance I'll throw them out there and see what happens. 

6MP is use for treating leukimia, what is the comparison of dose size between us UCers and those who use 6mp to treat their leukimia? 

At what does size of dose should I expect to see some of the more agressive side effects? (right now I am on 500mg) Or is that something that each of us experences differently?

For those who have been using 6mp for a long time (greater than a few years) what have been your experences with the drug?  What have your side effects been and how life altering have they been? 

For those on 6mp are you still getting blood drawn weekly or does that eventually stop? 

 

Posted 6/5/2008 6:25 PM (GMT 0)
6mp are used at much much higher doses for Lukemia and organ transplants. So what we take is minimal compared to that. I sincerely hope that was a typo 500mgs? I would think it's more of 50mgs right? I started out at 25mgs, had my blood tests, increased to 50mgs, had my blood tests, increased again to 100mgs on Mon and Thurs with 50mgs on the other days. I was raised because my Prometheus test was showing that I was on the low end of metabolizing the med so my doc increased it.

This September, I will be on this for 2 years. It has given me my life back. Before I was flaring constantly with no reprieve and now my symptoms are minimal to non existent and even if I flare now, it's pretty minor. My initial side effects were fatigue, nausea and headaches. It took about a month for the side effects to lessen. Everytime I had to increase the mg's though I had some side effects again. I wouldn't say that the side effects impacted my life any, just made it a bit miserable for a while.

And yes, the weekly blood tests stop. Right now I go in every 3 months to have my blood tested. The blood tests are to be sure that your liver is handling the med right. They check your WBC and liver function. If any of it is elevated, they either lower your dose or have you stop it.
Posted 6/5/2008 6:47 PM (GMT 0)
 I was about to ask this question myself, but I'm glad someone else did. I'm not worried about the WBC, just the liver. I've been on it for 2yrs also. Fatigue was only side effect I had I believe, but it went away after a month. I have my checkup on monday, so I have a little anxiety until I have the lab work done.

Posted 6/5/2008 7:14 PM (GMT 0)
Hehe opps yes that was definatly a typo, 50mg is what I'm taking. I was right in my siggy not my post.

Sherry as always you provide some excelent insight.

Odd I don't get the fatigue but since they've upped my Pred I've gotten the irritibility and insomnia, I'd love some fatigue at the end of the day to help me sleep hehe.
Posted 6/5/2008 8:19 PM (GMT 0)
I'm going to start a 6MP at 50 mg next week if my bloodwork is okay. I'm glad the side effects weren't too bad. I'm already feeling fatigued and nauseous w/o it, so it can't get much worse. How long was it before you noticed a difference in your flare?
Posted 6/5/2008 8:42 PM (GMT 0)
For me, at 7 weeks in I noticed my symptoms starting to decrease. Then about at 3 months, I woke up and literally had no symptoms whatsoever. That lasted for a little while and then my Uc started to rear again and I had to up my dosing, and then again until I am where I am today.
Posted 6/7/2008 3:08 AM (GMT 0)
Wow, 7 weeks is kind of a long time! My GI told me 4-6 weeks before I start noticing any differences. Oh well, at least I'm not taking steroids.
Posted 6/7/2008 10:52 AM (GMT 0)
ComedyDork - for me, it took 6 months for the 6-MP to kick in. I was on 100mg per day. I have never felt so absolutely exhausted in my life as I did when I first started that regime.

I am now on Allopurinol+6-MP combo. The Allopurinol is used to enhance the effect of the 6-MP while reducing 6-MP metabolites in my blood stream. See my sig for further details.
Posted 6/7/2008 2:50 PM (GMT 0)
I have been on 50mg 6mp for 10 weeks and have not had any results. My GI and I decided at my last appointment that if I had not seen any improvement by my next appointment (will have been on it 12 weeks by then) I should posibly seek a second opinion from a research hospital. My GI was very confident I should be in remission by now. I am very concerned that something else may be going on since my Prometheus tests have never shown the levels to confirm UC. They always come back negative UC. I have had blood work once a month since starting 6mp. I see most people did it a lot more often and my doctor has never mentioned running the Prometheus test again since taking 6mp. I want to ask him about that. Do most of you think I should wait longer for results from the 6mp or go for the second opinion? Of course I keep in the back of my mind that going to a research hospital will be very expensive (have a high deductible!) so I don't want to "jump the gun" if I need to wait longer for this to work. My main concern with 6mp is that my doctor wants me on it a min. of 2 years and I don't want to be pregnant on it, but would love another baby. With my first one at 16 months old already we've started to think she may be the only one. Which is fine if I can get in good health and stay there!
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