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dr.putting me on 6mp next visit-help!

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Posted 3/30/2009 8:11 PM (GMT 0)
My GI called today and wants me to start 6mp-i'm not even sure what it is,but she said it will keep me from having to go back on prednisone.She also said the medicine that I have been on since October isnt really what helps Crohns patients-I am so angry-I have been miserable since October and they call me out of the blue to say Im on the wrong drug! I am just a guinee pig(spelling).I have got to find a Dr.that is willing to try some other types of treatment.She only treats with three types of drugs:Humira,6mp,and something else and pred.as needed.I mentioned to her, several other drugs that I have researched and read about on here and she is not willing to even look into it.I am in South Carolina and need to find a Dr.in the Greenville-Spartanburg area,but would travel further if I had to.Anyone on the forum in my area know of anyone that may be worth looking into PLEASE let me know.Iwas also told that with 6mp-- no more wine! What!!! She said I could absolutly not drink alcohol ever again while on this medication.I am on the SCD diet and can have some wine on that!Please send any info my way.I know i need a second opinion.I have been waiting on new insurance to kick in so I can start looking.I was first diagnosed in 02 with UC and in October 08 changed it to Crohns,but didnt change the meds and now they say this isnt what i need to be on- i need something stronger.Iam on Colazal 4 caps twice a day. cry
Posted 3/30/2009 8:25 PM (GMT 0)
6mp is one of the most widely used and most effective Crohns treatments for patients who cannot achieve remssion on the mesalaimine family of drugs and who wish to be weaned from periodic steroid regimens. It tones down the immune response, usually achieving effectiveness in 3-6 months. Its side effects are fairly rare, and usually involve suppression of the white count, which resolves with stopping the meds. I am not aware of any reason one cannot drink alcohol moderately on 6mp. You will find many, many patients on this forum who have done very well with 6mp over extended periods of time. it is in the mid-range of Crohns treatments, above mesalamine drugs and below the biologics like Humira and Remicade. Just scan the posts and you will find a lot of information about it.

Posted 3/30/2009 8:41 PM (GMT 0)
I'd also like to say a word in favor of 6-MP. Doctors often start by trying the mild anti-inflammatories, but they aren't particularly effective for Crohn's disease. Steroids are meant for temporary use; you shouldn't be on them long-term so the next step after the anti-inflammatories is one of the immunosuppressive drugs: 6-MP, azathiaprine, or methotrexate. Of the three, 6-MP has the best documentation of efficacy. So I really think you have a good doctor there who is giving you good advice. Some doctors are more conservative than others when it comes to the use of alcohol in conjunction with immunosuppressives. They can harm the liver, so it's best to be cautious, but you might be able to negotiate cautious alcohol use (say a glass of wine a couple of times per week as opposed to daily use). Anyway, good luck with your treatment decision.
Posted 3/30/2009 8:53 PM (GMT 0)
I've been on 6MP for over a decade. I believe it has been one of the things that has helped keep me away from a fourth resection. In combination with other meds when things have flared up. But as far as wine goes, my doctor has never told me I couldn't drink while on 6MP. I was told not to drink while on Flagyl, but not 6MP. You might want to go to the drug manufacturers web site and check out what their info has to say. I do think since one of the things they keep track of while you are on 6MP is your liver function and alcohol is processed in your liver, that I would be sparing in my consumption of wine, but maybe just occasionally.
Posted 3/30/2009 9:55 PM (GMT 0)
I was on 6MP for about 12 years.. it worked very well.. I only recently stopped responding to it. I never had any adverse reactions to it.
Posted 3/30/2009 10:05 PM (GMT 0)
Thank you for all of your replies.I am just scared.I think I am in denial or just want to wish this thing away.I feel guilty being on here when so many others are in such bad shape.I thought I could maintain this thing,until the last five months,and now it has gotten the best of me.I have horrible pain,severe D several hours every morning-to the point I cant work at the moment,all the usual symptoms,so I guess I'm not all that different from everyone on here.wishful thinking I guess.I also know that as I get older it will change and usually for the worst-(i am 42).I will go to my next Dr.appt a little more open minded now that i have heard 6mp is not so bad and get started on that.Thanks for everyones input-it means more than you know!

Posted 3/30/2009 10:15 PM (GMT 0)
Another 6mp fan here. I was in remission within months thanks to this drug and I'm still there years later. My GI allowed the occasional glass of wine, but I think he expected I'd try it anyway. Actually, it was easy to give up the rare drink. Good luck, hope something gets you feeling better.
Posted 3/31/2009 12:38 AM (GMT 0)
Don't ever feel guilty because you think that you're not "sick enough"... there are those out there worse off than you as well as those that are better off, but we all struggle with our own personal hells.... this is here for all of us - bad days, good days, and those in between.... I know it's helped me out on more than one occasion!
Posted 4/4/2009 8:37 PM (GMT 0)

 If your doctor is just starting you on 6MP you should ask about a special lab test called TPMT (thiopurine methyltransferase).  This test can determine if you should be on this medication and what your risk would be if you are on it.  This information is very new to me but just went to a Crohns conference in Sacramento CA. and did some research.  If your level is deficient enough you would not be a canidate for this medication.. Low levels have a higher risk of lowered white cells and possible myleosuppression.  I unfortunately have been on 6 MP for a 1 1/2 years starting on 50mg, then upped to 100mg last August and recently upped to 150mg due to an episode that landed me in the hospital and needed transfusion.  The last 3 lab results showed a decline in the wbc count and lymphocyte ABS level.  My doctor said not to worry unsless my lymphocyte count got below 500 and am now at 480.  I dropped 200 points in 5 weeks.  I just had blood drawn for the TPMT test. It was not offered to me prior to starting the medication.  I am real curious as to that result.  I wish I had the test prior to starting 6MP or just as I started it.  It is a small percentage of people with a low level.  Most are fine but it wouldn't hurt to ask about it.  The 6MP was working for me with very few problems until recently.  Hope this helps. 

Any one out ther that has had to stop the 6MP due to lowered lab levels?

This is my first chat and so glad I found it.  I will probable spend a lot of time on here.  I was diagnosed with Crohns in 1987 and have had 2 small bowel resections. 1999 and 2005

Posted 4/4/2009 11:47 PM (GMT 0)
I took it for a few months and had to stop it--it messed up my red blood cells--it was a horrible feeling!
Posted 4/7/2009 4:03 AM (GMT 0)
I have been on 6mp for just over a month and so far its working well. I did'nt ever really acheive
full remission with Asacol and with 6mp I am in full remission! YAY! The only drawback is the tiredness
that comes along with it but I can deal with that better than I can a flare!! Good luck to you!!
Posted 4/8/2009 12:32 AM (GMT 0)

Since starting 6mp 3 years ago I have not had inflammation in the Ileum. I only noticed side effects when taking it while pregnant. Who knows why and I don't really care. I just stopped it. When starting it again I had mild fatigue and mild headache but after 2 weeks I didn't notice it anymore.

6mp has been wonderful for me and has decreased the frequency of predinsone use. It took me forever though to get into the therapeutic range. I still flare but nothing like before I started the 6mp!! I go in every 3 months for blood work.

Hope you have success with it! We are all different!

Sally

Posted 4/8/2009 1:31 AM (GMT 0)
Belle E Button,

Do you mind my asking how much you weigh?  Dosage of 6-mp is generally weight-based, with a typical dose being 1.5mg/kg of body weight (if you do the math, that comes out to 1.5/2.2 = 0.68 times your weight in pounds).

A dose of 150mgs is fairly high, and appropriate for somebody weighing around 220 pounds, so it's not surprising you're seeing a decrease in white cell counts with that dose.

Given that you did well on 100mgs, I would be very surprised if your TPMT results came back as anything but ordinary.

Your issue is almost certainly due to unusually large dosing of 6-mp and not due to dysfunctional TPMT.

But again, that all depends on how much you weigh.

Posted 4/8/2009 6:30 PM (GMT 0)
With the math, I should be ok on 150mg (226lb). I will be repeating my labs 4/16. My doctor finally called me and said that he was not alarmed but was suprised at how much the wbc and lymphocytes dropped. He did not want me to change doses until we get the next lab and theTPMT result which should be available by then. Thanks for your information. I did not know the weight factor in the dose. I will post new information after my labs.
Posted 4/8/2009 6:42 PM (GMT 0)
I have been on 6MP for about 2 years now. No major issues and so far has been the most successful in keeping me in remission. As far as alcohol, for me, some types work better than others. For example, when I drink wine and/or hard liquor (vodka, mixed drinks, etc), things are not too pleasant the next day. On the other hand, with beer of certain ales, no issues as of yet.

Feel free to vent, I do too. It helps alot. I read somewhere that having a strong support group (friends, family, web discussions, etc) is by far the most effective form of treatment. Especially for a disease without a known cure.
Posted 4/8/2009 7:26 PM (GMT 0)

Belle,

Ask your doctor about performing the Prometheus Labs thiopurine metabolites (6-TGN) test.  It probably gives better info for your situation than their TPMT test does.

Posted 4/9/2009 5:01 PM (GMT 0)
I was also very reluctant to go one 6MP.  However, after researching and researching, I decided to try.  After reading several posts on this site, I also felt that the severity of my symtoms did not warrent the use of 6MP.  However, the Doctor said that even if you don't show as many signs, the Crohn's is doing damage to your system.  I did have the prometheuis (sp.) done.  It showed I shouldn't have problems.  Once the 6MP truly started working, it was great.  I was in the bathroom once/twice a day.  There were no side affects...until recently.  Apparently, my liver didn't like the 6MP as much as my stomach did.  I did have to stop.  I truly wish I still could tolerate it.  After stopping, I have had more colds, etc. then when I was on it.  I know I have to call the doctor to address my current issues....I'm just not ready for the next step...injectables.  The doctor put it simly to me...even if you have mild symtoms, damage is being done that you can't see.  Everyone is different but for me it worked wonders.  Best wishes! 

Posted 4/29/2009 5:41 PM (GMT 0)

Hi All,

This is my first post here and I am really happy I found this forum.

My story:

I am 49 yr old woman and all my life I have never had a gastro issue.  Never had Pepto Bismal in the house or anything like that.  Next, last Jan. 30, my friend and I were at the Mall and decided to share a subway sandwich.  She ordered a tuna sub and I remember I looked at her choice and thought how could she order that for us when she knows I never eat tuna salad? Anyhow, to be nice, I didn't tell her to change it.  Well...soon after I ate the sub, I got D and have not been the same since. 

It's 4/29 and I have been in the hospital on two occasions. I'm here now actually. I went to the ER on March 5 through March 15 lost 15 lbs and living on pain medication...and now I am here since April 17. It is all a shock to me because, again, I have never had any problems.  I had to return b/c I was having too many bowel movements. It has reached 14 times in 24 hours so you can imagine..

The diagnosis at this point from a "food born illness" is UC. 

To add, in my case, the first gastro Dr dropped the ball when I saw him Feb. 9 as things should have never progressed as it did.  This second time around I have another group of Drs and things seem better but I've gone through some major scares at the hospital b/c they are more aggressive in their treatment.  This group had me on a "continuous drip" steroid for a week which dropped my potassium level dramatically.  To give you an idea, one night they put 12 potassium IV packs in me and it dropped to 1.8 (normal is 3.6).  It was chaos and they then added a second IV on me to double up the dose. The Drs also had to remove me for the continuous drip which I could not handle.

At this point, the plan is to give me oral prednisone 40 mg and taper it down while they give me 6MP at the same time since it takes awhile to kick in.

From the posts here, it seems it might be a good option and I hope it works for me.

Thank you for support and guidance.  I can so empathize with all of you.

Vivita

P.S. My friend got sick from the sandwich too but she was taking Cypro for something else and maybe it helped her.

Posted 4/29/2009 8:38 PM (GMT 0)
Hi Vivita,

And welcome to Healingwell. It sounds like the food poisoning triggered your IBD. I hope the Prednisone and 6mp get you feeling better soon. Look forward to hearing more from you.

Hugs
Gail *Nanners*
Posted 4/29/2009 9:07 PM (GMT 0)
I have been on both 6mp, methotrexate and azathiaprine, they both worked for a period of time and the I developed an immunity to the drugs....like I have every other drug! Give them a try, they really were awesome when they worked. I am acutally back on azathiaprine mixed with Cimzia now. Best of luck!
Posted 4/29/2009 10:47 PM (GMT 0)

Well, say my GI today and told him about LDN and his reply was that he new nothing about this drug so he could not prescribe it to me.

His choice of maintenance med was Methotrexate or Imuran.

What should I do? Which is the lesser of two evils?

Wolfie

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