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Positive stories on 6mp?

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Ulcerative Colitis
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Posted 5/3/2012 4:50 PM (GMT 0)
I'd like to hear anyone who has had good luck with 6mp.  No elevated liver enzymes or toxicity, it was effective and they are happy they are on it.

Also how often are you blood tested.  In the beginning and now.  My GI said once a month. 

I just have so many other unexplained aches, pains and twitchy things that I'm afraid of taking something that will make anything worse.  And I really fear the nausea or vomitting some people talk about.  You never know until you are on it, but after my horrific experience with every 5ASA I'm a big chicken.

Thanks

 

Posted 5/3/2012 9:37 PM (GMT 0)
Imuran is the only thing keeping me in remission. I was first prescribed it in 2001 following severe pancolitis that almost ended in surgery. Following IV pred, Imuran was introduced and I began the long slow steroid taper. I was in remission from mid 2002 (flared in mid 2001) and decided end 2004 I could manage my disease through diet and natural measures. I stopped the Imuran and did reasonably well until I flared again in 2007. Back in hospital, IV pred, back on Imuran. All went well until we went to Europe in 2010 and I forgot my drugs. Thought I'd be ok as we were only away for 4 weeks. Bad move. Flared badly and flew home from London half dead. Admitted, IV steroids, Imuran. All good up until February this year when I injured my foot training for a half marathon. I started sucking down NSAIDs to manage the inflammation - kicked me into today's flare despite the Imuran. So it's not perfect!

I had blood tests every month to begin. Now I have them every three months because my GI knows I tolerate the treatment well. I do get some nausea but not all the time and it helps to take the drug with food. Anyway, I'd rather vomit than have D but that's just me. I would have lost my bowel years ago without Imuran. Those three little pills keep me going - just so long as I don't mess things up!!!

Good luck with your journey.
Posted 5/3/2012 11:39 PM (GMT 0)
Thanks Foxy.

Hoping all the success stories are out and about and not checking the board :) Haven't had too many responses.
Posted 5/3/2012 11:43 PM (GMT 0)
SO CAN U NOT BE OFF 6MP THEN W/O GOING INTO A FLARE?
Posted 5/4/2012 12:02 AM (GMT 0)
I may not flare immediately if I stop taking the drug BUT I don't flare at all when I am.

Well, apart from this latest glitch, which was my fault for guzzling 4 NSAIDs per day for two weeks straight.

I tend to flare badly or have no symptoms at all. I don't "grumble" like many do. So, on balance, I prefer to take my Imuran and remain symptom free, than not take the drug, have a few months of remission, then kick into a flare.

I feel safe when I'm on Imuran.
Posted 5/4/2012 12:10 AM (GMT 0)
i see thank you
Posted 5/4/2012 4:47 AM (GMT 0)
I have done pretty well with 6mp. I wasn't one of the lucky ones who responded quickly, not only did I take at least 5 months to notice my UC stabilized, I also had a lot of problems with my blood work along the way. I never tolerated 6mp that well and it was causing me more toxicity than theraputic benefit but with patience, it has helped me stay in a year long remission. Not saying a year is a long time either but I was struggling with pred and a flare up the whole previos year and I needed a break from that hell. Of course, since i've been off prednisone I still haven't felt like myself, I need to lose some weight, what a bummer this illness can be. I would give it a try if I were you, if I hadn't gotten off prednisone, I can't imagine what would have become of me.
Posted 5/4/2012 5:56 AM (GMT 0)
Thanks for your input and responses. I wish I could feel better about this huge decision. Maybe if I didn't have all those terrilble reactions and being so sick with the Mesalamine I'd be braver. I probably sound silly to some who just take it without a thought. I'm an over analyzer.

Today was an improvement with sxs but as I taper the Pred I need to have the 6mp take over unless this LDN starts doing something. Skip said it works better at 10 or 5mg. But if that doesn't happen then I know I need something else and it may take a while as you said notsosickly girl.

I cannot wait to get off Prednisone...my fat face is really making me self concious now :( I tapered to 20mg today.
Posted 5/4/2012 11:28 AM (GMT 0)
My Prometheus test showed I was at the absolute bottom of the intermediate metabolizers for liver toxicity in 2009. Now, after five months on it, I seemed to be doing great as far as blood results. I had labs in Jan and Feb and they looked perfect. I had another one at a followup appt yesterday. I seem to be doing OK right now, one month after stopping Entocort which is the most effective drug at helping me. I usually start sliding about 10 days after compelting the Entocort taper. Hopefully it's the 6mp working.
Posted 5/4/2012 1:08 PM (GMT 0)
While 6mp didn't get me into a full remission, overall I would still have to say I am happy with it. I can't get into the full therapeutic range but it still has kept me out of severe flares. I never got liver toxicity or anything like that - there was only one time that I was borderline but that was only because my GI wanted to try a higher dose. My blood work always came out good. In the beginning I went once a week for a month, then every 2 weeks, then once a month and now I go every 3 months.

Now I am more or less still on it so my body doesn't reject the Remicade.
Posted 5/4/2012 1:11 PM (GMT 0)
Levi

Thank you Levi for taking the time to respond. Was there a reason your doc chose 6mp over Imuran? Looks like you are at 50mg, are you going to go up? Will they test you for therapudic range? It seems some people do ok on the 50 but have some trouble when they bump it up. I also see you are taking Milk Thistle....do you see a naturopath? Do you take that for liver cleansing? I was going to consider that if I started 6mp.
Posted 5/4/2012 10:27 PM (GMT 0)
I've been on Imuran for about 3 months now and is keeping me in remission.
I have to deal with a little nausea but not to bad.

I wish my GI would have put me on Imuran right from my first flare.
I had to deal with 2 bouts of prednisone, the first wasn't to bad when I first found out I had UC and needed it to tamp down the flare, but the second flare was much worse and the prednisone lasted for 4 months and did a lot of damage to my body. I don't think I'll go on prednisone again unless I'll die without it, it's that bad.

Currently the UC seems to be under control, but feel very tired all the time and the joint pain is becoming an issue, don't know if it's from the prednisone or Imuran or UC that goes for the hair loss I'm having now as well, can't tell if it's from stopping the pred or it's the Imuran.

Seems everyone I know that has UC ends up on Imuran or 6MP at some point or another, I wish my GI would have put me on it right away and spared me the prednisone damage.
Posted 5/4/2012 10:45 PM (GMT 0)
JHarvey

What dose are you on. I pray I don't get the nausea. Anyone know if that is temporary? I hate hate hate nausea.
Posted 5/4/2012 11:28 PM (GMT 0)
Season21, for me the initial nausea subsided after a week or two. Now I only get it if I don't take my Imuran with food. My dose is 150mg per day. Therapeutic dose is 1mg per 2kgs of body weight (I think) so mine's a little high.
Posted 5/4/2012 11:33 PM (GMT 0)
Does Imuran or 6mp cause the same nausea? One beter than another? Also is there a good time to take it? MOrning or night? Sorry for all my questions. Thanks for all your input. I think my dose will be 80mg. Does anyone ever start on 25mg? It seems it's always 50. Thought you might see how your body reacts at a lower dose....
Posted 5/5/2012 2:59 AM (GMT 0)
I take mine at night but I've never really had nausea. I have been dealing with fatigue, pretty much my entire life, that's why I take it before bed, to avoid more fatigue.
Posted 5/5/2012 3:15 AM (GMT 0)
I am debating on starting it at night but I don't want to wake up vomiting. One of my worst nightmares. Yes I'm overthinking it, but this medicine causes me anxiety. I really think because I was so sick with Mesalamine it's just made me neurotic about Rxs now. That and the acute dystonic reaction I had to compazine. Both meds were severe adverse reactions. Ugg.. hopefully I'll get the courage soon...

notsosicklygirl
hope I'm like you and don't get the nausea :) How are you feeling on it? Looks like you only take 25mg which is a small dose. I may break the pill in half and start with 25 just to see
Posted 5/5/2012 3:35 AM (GMT 0)
Hi Seasons -

I have been on Imuran for about 19 months and it is the only thing that ever put me in remission. I have no side effects - never did. My blood work is perfect. You would never know I have a chronic disease based off my blood work.

I can take Imuran with or without food and it causes no problems. I was often tired when I was flaring but since I have been on Imuran my energy has actually returned. For me it has given me my pre-UC life back.

I wish you the best.
Posted 5/5/2012 3:48 AM (GMT 0)
JHarvey - just wanted to say that I bet your hair loss is from tapering the Prednisone. I have that too and my dermatologist told me to expect it. I'm not taking Imuran yet but will start next week. If you are susceptible to hair shedding from illness or stress (I am) its not uncommon to have a shed when your taper Prednisone/get over a flare.

GI told me today that the joint pains are actually from the UC inflamation (and a sign of a flare-up).  Interesting I thought it was from the Prednisone taper but I've been off of it for a month. Learn something new about this illness even after almost 20 years!

Posted 5/5/2012 4:01 AM (GMT 0)
MNBeachgal

I feel like a newbie too, because the disease is so different now than it has been since 99. Oh and thankfullly I have super thick hair..hoping not to lose too much!
Posted 5/5/2012 4:27 AM (GMT 0)
I don't think it's a bad idea to split the pill to see if you have any negative reactions. Though, I bet if you were going to react, you probably would on any dose, no matter how small :(

I hope it works well for you. I have always struggled with my blood counts while on 6mp but it's pretty rare that people react the way I have. I think most people do pretty well on it so try to stay calm and take it for what it is. In reality, it's a low dose of a drug that has been around for a very long time. If it helps you, it's one pill a day, it's pretty easy. I hate the idea of being on it too but I can't let that stop me from living my life. It's better than living with UC symptoms imo.
Posted 5/5/2012 3:18 PM (GMT 0)
seasons21

I'm taking 100mg in the morning, the nausea is ever so slight, enough that I notice it but not like I'm going to throw up, and it kinda comes and goes.
I'm hoping it will go away the more my body gets used to the drug.
Taking the Imuran is much more preferred than doing all the meslamine drugs and diets and suppliments, just pop 2 tiny pills in the morning and off I go, whatever you do try to stay away from the prednisone if you can.

I've been off prednisone for about 2 months and on Imuran For a little more than 2 months and started noticing the hair loss about a month ago,
Hopefully it's from coming off the pred and as it gets out of my system the hair loss will subside.

The joint pain is another matter, not sure what to do about that, another drug???
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