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Ulcerative Colitis
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Posted 11/21/2008 3:09 AM (GMT 0)
My doctor just put me on 6-mp.  I think he wants to start me on 100mg.

Anyone here take it?  What shoudl I expect.  Side effects that you experienced.   I know what the glossy says.

How long did it take to work?

Is this good to take long term?

What about hair loss... I read that is a side effect but it is with many of the UC drugs. I ahve been on asacol, lyldia, colozza, rowassa adn no hairloss.

I have also been on pred with no hair loss.   Just curious if hair loss does occur will it stop and or grow back once the meds are stopped?

Also do you really get hair loss with it or is it just listed b/c some people get it.

Posted 11/21/2008 1:11 PM (GMT 0)
100mgs is a high dosage to start on. I would double check on that one! Usually they have you start out at 25mgs, take blood to see if you can tolerate it, then up the dose to 50mgs. Very rarely have I heard of a Uc'er being on 100mgs especially right off the get go.

I have been on 6mp for over 2 years now and the intial side effects were headaches, fatigue, slight nausea but that pretty much subsided once I got used to the med and I started taking it at night. I started seeing results around 7 weeks but it can take anywhere from 3 months to a year before any improvement is seen. Not sure about the long term since it has just been approved for use in Uc and I don't think they have studies about long term low dosages of 6mp. I only had mild hairloss in the beginning but eventually it stopped and then started growing back even while still on 6mp.
Posted 11/21/2008 1:24 PM (GMT 0)
I'm on 75 mg., I didn't wean onto it, I started on 75 mgs and am still on it (it's been 2 years). I tried going up to 100 mg. but I had horrible loss of appetite. I don't have any side effects from it. It took about 3 months for it to work. It's a long term medication if it works. The way my GI explained it is it's like a jack in the box, if you stop taking your meds, a flare will pop up and is usually worse than the one before.
Posted 11/21/2008 1:24 PM (GMT 0)
I already had the blood test and everything came back fine.

Should I question the high dose to start?

I currently have been taking Colozzal for hte past 2 months during a flare up.

I am NOT on any sterords. I feel I didn't give colozal a chance to work.

Shoudl I suggest to my doc that I should try to get my flare under control with steriods and then see if Colozal

keeps me in maintenance prior to trying 6-mp?

He also just upped mydosage of VSL#3DS to 4 saches a day.  My insurance covers it.

Posted 11/21/2008 1:42 PM (GMT 0)

I was on Asacol for 4 months 9 pills a day and what seemed like a constant dose of prednisone to try and control a flare. Eventually it seemed that even steriods were not working so I was put on 6mp starting at 50mg and now I am on 100mg after about 3 weeks. So far I have had some nausea, loss of appetite and fatigue. I too did not want to go on this medication, but I needed to get some control back and hopefully this will work.

If you are truley concerned that you did not give the medication a try you should talk about it with your doctor.

Posted 11/21/2008 1:42 PM (GMT 0)
I thought the dose was based on your weight????
Posted 11/21/2008 1:52 PM (GMT 0)
my doc said the dose was based on your weight. He did the math yesterday with me. I weigh 175
Posted 11/21/2008 3:03 PM (GMT 0)
The initial start up is based on your weight and then they tweak it to meet your needs. I only weigh 130lbs and I have a varying dose of 6mp. I take 100mgs Monday and Thursday with 50mg doses in between. How long have you had Uc? And what is the extent of it? There is another option to try if you don't want to start on 6mp such as steroid enemas. Depending on the extent of your Uc, the steroid enemas can get your flare under control more quickly then 6mp. Usually they reserve the 6mp as one of the last resorts before heading to the other heavier duty drugs such as Remicade. Of course, this is your choice whether to start 6mp or not. You can question the 100mg start up dose if you want, it seems sort of high though to be on at the get go. Usually GI's try the least amount of medication to see if it works first then proceed to up the dose if the lower doses don't work.
Posted 11/21/2008 4:51 PM (GMT 0)

Hi,
I have been on 6-MP since September 1st and so far it is not agreeing with me.  I started out on 50mg and then went for my bloodwork after 2 weeks on that dose.  I felt fine and everything came back normal so they up'd it to my 'weight level dose' of 75mg.  I became very ill with fever and nausea but stuck it out for the two weeks.  Went and my liver levels were extremely elevated.  They had me wait another 2 weeks and test again, levels even higher, still feeling very sick so they dropped it back down to 50mg.  no more fever but still nausea during the night (i take it before bed with food, but i still get woken up with it each night).  tested again yesterday and just found out levels still out of whack....appears my body does not like 6-MP so now they are having me think about Remicade. 

I have had a ton of hair loss, but i think its from the pred..i have been on it for a year now.

Posted 11/21/2008 11:22 PM (GMT 0)
     I have lost quite a bit of hair too.  Didn't know whether from the prednisone or 6MP.
Posted 11/23/2008 3:25 PM (GMT 0)
100 mg. sounds high to start with. I'd question it. It takes up to 3 months to get into your system, and I think it is better for maintenance than to manage a flare. You should stay on the Colazal while it builds up. My daughter is still on both, but it helped her to wean from the Pred. Make sure the doc is testing your enzymes on a regular basis. Each body metabolizes the 6mp differently, and there can be wide swings in the number. Test is expensive and takes a week or so to get results, so stay on it. Goal is to stay in the 200-400 range, whatever that means... her dose alternates between 50 and 75 mg on alternate days.
Hair loss is real. Many posters cannot tell from which drug it comes, but our experience points to the 6mp. Not noticeable to most, but the shower drain doesn't lie. Not a big issue for most either, but it may be a sign the levels are too high.
Good luck!
Posted 11/23/2008 9:08 PM (GMT 0)
I had hair loss when I started it but that has totally stopped and it does grow back in.

Give the 6MP 3 months and then request a Prometheus test. That's the matabolite test mentioned before. My last Prometheus test showed I was at high risk for liver problems but my liver enzymes are always fine when they test my blood so they said that is more important than a test that says "I may be at high risk". My GI just did another Prometheus test on me last week becuase I have lost 20 pounds and he wants to make sure everything is still at a good level because dosage is based on weight. I have also been having kidney issues and he wanted to make sure I was handling the 6mp ok. I want to drop down to 50mg but he said to wait until he looks over my results. It is a long-term drug. FYI, my last Prometheus test was $270. Insurance did write off $50 but that was it. They didn't pay anything.
Posted 11/24/2008 3:23 AM (GMT 0)
I am calling him tommorow.

I don't think I am ready for 6mp yet. I was put on Colozal during a flare up with no Pred. Then a week later I had my gallbladder out. That can cause a flare up as well.
Then I have been taking no pred just Colozal and Rowassa(when I can) during this flare. I feel I have not given Colozal a chance to work. I was on Asacol for 14 years prior.
He has been wanting me on 6mp since I was first diganosed 14 years ago. He think he is being too agressive.
He put me on a metro pack of steriods (7 days). That helped a little. But I need something for a few weeks to get rid of the flare.
Him and I will talk tommorow. He has no issues with me making suggestions and he does listen.
I already had all the blood work for 6mp done.
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