6mp and risk of infection

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skofbengsk
Regular Member


Date Joined Oct 2006
Total Posts : 234
   Posted 5/31/2010 3:35 PM (GMT -7)   
I have been fighting my dr.'s on remicade, imuran and 6mp for over 2 years now, It is just so scary to read all of the literature and the thought of weekly blood tests etc. I think at this time I have no other option but to give in to the 6mp, I just can't imagine being this sick for another 30 years or more and am tired of going back and forth between sick and not so frequently.

My main concern is the increased risk of infection. I do home childcare and one of the boys I watch goes to preschool and is always getting sick with something and generally passing it along. My 2 year old has also been known to pick up things from the church nursery, playground etc. I have never been one to get the flu or colds. Until the past year I only remember having the flu twice in my life (Iam34) and maybe a handful of colds. I am currently taking Lialda without much success and my GI put me on prednisone (started at 40mg) in July and I was off of it by Jan. but have had to do several short bursts and now have been back on for the past few days with no relief yet I have lost 6lbs this week though my appetite is still good and I am still eating I think the same as usual. Any how, I realize prednisone weakens your immune system and since last July I have had the flu 3 times and several colds. My last cold was caught from the kids I watch, theirs lasted about 5 days mine lasted over 3 weeks, it turned into bronchitis and a sinus infection so bad it felt like my teeth were being pushed out of my head.

My Dr said that the kids and risk of infection wouldn't be a problem with the 6mp, but if I have been sick so many times on the pred I am just very concerned about if it would be worse with an immuno suppressant. I have little trust in Dr's and would really love to hear feed back from those who have been on it. I have read older posts and it seems it really has helped alot of people as well as a few that developed problems and I just want to weigh my options, this is a really hard decision for me and I will trust first hand experiences way more than my Dr's blah blah blah's. Please don't be affraid to scare me, I have read all about the drug and it's studies so I am already scared lol, i would just like to hear the reality from patients not Dr's. Especially if anyone has had problems with viral infections while on it.

PS. my degree is in child development and I really love to work at home and be with my son. not working isn't an option, and I can't say I have enough training in anything else to get a reasonably paying job. So atleast for right now I have to be around the germy kids

Thanks in advance, I also posted this on the UC forum

Dx CD Oct '06 mom of 3 boys
Current meds: prednisone, Lialda, probiotics, oregano, green tea, vitamins, Fish oil, Past Meds:Asacol, entocort, flagyl, cipro
Dx CD Oct '06 mom of 3 boys
Current meds: prednisone, Lialda, probiotics, oregano, green tea, vitamins, Fish oil, Past Meds:Asacol, entocort, flagyl, cipro


SaraOnThisSite
Regular Member


Date Joined Feb 2006
Total Posts : 211
   Posted 5/31/2010 5:15 PM (GMT -7)   
I've been on 6-mp for awhile now, I think around 5-6 years (I'm 25 now and pretty sure I started it when I was around 20.)  I think I could have been more responsible but at 20, I didn't really research it that much.  But I'm glad I didn't because you can really scare yourself reading all the literature on things out there!  I mean, I still haven't started Humira yet but I was starting to get freaked out with reading about all the possible side effects
 
I have my masters in art education and have ALWAYS had jobs working with kids (Currently I'm a substitute teaching, and also teach a fashion class to little girls, and I also facepaint so right there is 3 jobs I do where I'm working with sick, germy kids.) 
 
Unfortunately it's not working for me, Crohns wise so I'm looking into other options but I never got super sick with infections because of it.  What it did do to me, however, was effect my liver so my bloodwork was often a mess so I would often have to lower the dosage (which is why I think it doesn't work for me)
 
I do often get sick, sore throughts, coughs that last way longer than they should, etc. but I don't think that's from the 6-mp because I've ALWAYS been that way...I just thought it was something the Crohn's did...makes you sicker because your immune system is compromised and yadah yadah yadah
 
The 6-mp used to really help my Crohns a lot before I started sucking and my liver decided to be annoying.   
 
Don't let all the literature scare you away!  Good luck!
 
25 year old female, diagnosed with Crohn's in 2002 after being misdiagnosed with Lyme Disease for a year.  Have been on Prednisone, Asacol, Entocort, and Remicade in the past.
 
Currently on 100 50 mg of Mercaptopurine and 10 mg of Prednisone.   5 day hospital stay April

Trying to get on Humira but having insurance issues.. :(


NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8546
   Posted 5/31/2010 7:49 PM (GMT -7)   
Long-term Prednisone is far more harmful than long-term 6MP/Imuran; I'd be much more scared of taking prednisone for anything longer than a few months than I would 6MP for years. There are some bad side-effects (pancreatitis, bone marrow suppression) but these affect only a minority, usually occur within the first few weeks, and are reversible upon stopping 6MP.

Unless you're on a very high dosage - higher than Crohn's patients are normally on - the increased risk of infection is likely to be small. 6MP turns your immune system down a notch, but does not stop it from doing its job. I was on 6MP for six months last year, most of that time covering the autumn and winter where colds abound, and noticed no increase in the number of colds I picked up or how bad they were. I stopped it for a while (nothing to do with an infection) and am now back on it again. (Only been on it for 3 weeks, so too soon to tell anything at all yet.)

Hope that helps a tad!

mmckenna
Veteran Member


Date Joined Jan 2006
Total Posts : 725
   Posted 5/31/2010 9:50 PM (GMT -7)   
Yeah, you really have to be careful how much you read about side effects of medications. Everything has side effects, even asprin.

I've been on 6mp and Remicade for 8 years now. I work at a university, however I'm not dealing with students. I do have an almost 5 year old son that has been in day care and preschool since he was a few month old. I do get the occasional cold/flu, but nothing bad. I also tend to cut/scrape myself accidentally now and then, and other than some slow healing, no problems.

My 6mp dose started at 100mg/day and later dropped it to 50mg. The only issues I can tie to it was that when on the 100mg/day dose, I had issues with energy levels, and being very tired.

My Remicade dose started at 500mg every 8 weeks, and eventually down to every 6 weeks. Later, I had to go to 1000mg every 8 weeks (considered a double dose), and no issues with it, other than one I'll mention later.

The combination of both medications kept me in remission for many years. There were times when I had no symptoms.

I've been on Prednisone a few times, and I would consider the side effects and risks of that drug WAY worse than 6mp or Remicade. Even though I haven't taken prednisone in many years, I'm still dealing with issues from that. Osteopenia (thinning of the bones) as well as other issues are still an issue. My wife has been on prednisone long term for rheumatoid arthritis, and she has a lot of issues from it, including eye issues.

I'd really would strongly suggest that you consider going on 6mp, I think long term you will have much less issues on it than the prednisone.

I recently was taken off Remicade due to a possible issue. I came down with Guillian-Barre' Syndrome. It is a known risk on this medication, however there have only been 12 known cases tied to Remicade. They are not 100% sure my case was cause by it, but just to be on the safe side, they have taken me off it. As it is, there is a risk of Guillian-Barre' Syndrome without being on any of these medications, and the level of risks is pretty close to the same, if you are on or off them. So, it's difficult to tie the two together. Like I said before, ALL medications carry risks. I looked at the risks, talked to my doctors, and I felt, and still feel, that the dangers of letting Crohn's run unchecked was worse than the dangers of the medications.

Looking back, I'm still happy with the decisions I"ve made. I really try to stay of prednisone if at all possible. That drug really scares me.
Matthew McKenna,
Joey's dad.
Crohn's Disease and Guillian-Barre' Syndrome.
Remicade, 6MP and a few of their friends.

"I'm just along for the ride."


MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 6/1/2010 5:50 AM (GMT -7)   
As others have already posted, the dosage level commonly used in treating Crohns is in the 50-100 mg range, far lower than the dosages used in treating leukemia, which is where the warnings abuot infection susceptability really apply. Yes 6mp does slightly increase your vulnerability to ingections -- that is a tradeoff for perhaps significantly reducing inflammation and Crohns symptoms long term. On balance, if you get two colds a year instead of one on 6mp, and they last 5 instead of 4 days, you are still way ahead if the medication saves you a month or so of serious CD symptoms.

skofbengsk
Regular Member


Date Joined Oct 2006
Total Posts : 234
   Posted 6/1/2010 11:00 AM (GMT -7)   
Thank you all, it has all been reassuring and I think I might just give it a go. I have been resisting for a long time but to my own detriment I think.
Wish me luck!!
Dx CD Oct '06 mom of 3 boys
Current meds: prednisone, Lialda, probiotics, oregano, green tea, vitamins, Fish oil, Past Meds:Asacol, entocort, flagyl, cipro


meshice
Veteran Member


Date Joined Jan 2003
Total Posts : 734
   Posted 6/2/2010 8:49 AM (GMT -7)   

I have been on 6MP for about 7 years now.  I too was worried about the infection part.  I have been blessed to not have had a problem with infections.  Suprisingly I have been way better with the 6MP than before I was taking it.  I too work with kids both at work and at church so it was a concern.  I try the best I can to stay away from sick people, but I cannot tell any more infections have come my way since taking the 6MP.

I take 75mg a day.  At first I had my bloodwork done weekly for about a month, then I went to monthly for a few months, now I have it done every three months.  My doc will not refill my RX without my bloodwork being done.

6MP was by far the best drug for me.  Remiciade did not work for me and 6MP got me to remission.  Good Luck!


"We can't beat this disease, YET, but we can't let it beat us!"
Mandy

"Do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." Matthew 6:34


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 6/2/2010 7:31 PM (GMT -7)   
My husband has been on remicade now for about 2 years. He hasn't been on 6mp or imuran, so I can't speak to those. My husband works full time in an office environment, and has remained pretty healthy overall. In the past 2 years, he's had a stomach infection, and really no other colds or respiratory infections (knock on wood).

The worst side effect that my husband has had with the remicade is just post infusion fever, muscle aches and pains that lasts about 24 hours. So to deal with that, he gets his infusion on friday afternoons, and takes the weekend to recover from it.

Also, he's had surgery for a sebaceous cyst (with required 20 stitches), and recently 7 stitches when he sliced his hand open in a glass related accident, and recovered from it with no infections. He does seem to heal a little slower than normal, but with proper care, he hasn't had any problems with infections.

He had one unexplained case of swelling in various joints in his body, but we don't believe it is because of the remicade - we think it was either reactive arthritis due to the c-diff infection he was dealing with, or reactive arthritis to the flu shot he got, or just crohn's related inflammatory arthritis.

Also, my husband has some skin issues - recently has had allergy issues which he hasn't had in the past, and also he has some spots of dermatitis on his hands, but nothing serious. We don't know if it is because of the remicade - he has had problems with his skin even when he wasn't on remicade.

On the whole, remicade saved my husband from certain surgery and has given us our life back. I dread the day it stops working for him. I sure hope that's a long way away. Oh, also my husband's doc just does blood tests every 3-4 months. Remicade has not affected my husband's blood work at all. Everything normal.

Good luck to you. I hope you get to remission soon.

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Crohn's in Remission since June 2008
C-diff recurrence Sep 2009
Reactive Arthritis Nov 2009
Currently c-diff free
Osteopenia of spine (Mar 2010)
Canasa (1gm), Lialda (4.8 gms), Remicade (8 weeks)
Currently In Remission


mmckenna
Veteran Member


Date Joined Jan 2006
Total Posts : 725
   Posted 6/2/2010 7:48 PM (GMT -7)   
That's good to hear about your husband, PV. I experienced the same wonderful remission from Remicade and 6mp, all without any side affects. Glad to hears it's working for someone else.
Matthew McKenna,
Joey's dad.
Crohn's Disease and Guillian-Barre' Syndrome.
Remicade, 6MP and a few of their friends.

"I'm just along for the ride."


misspriss82
Regular Member


Date Joined Mar 2008
Total Posts : 221
   Posted 6/3/2010 5:29 PM (GMT -7)   
I have been on 6mp for three months now and I totally know how you feel! My dr. really wanted me to go on Remicade first, but the thought of needles scared me and then I read all of the side effects and got freaked out.  So we're trying the 6mp first.  It actually hasn't been that bad. I feel 70 percent better than I did before, granted, I still have upset tummy, but I am not having pain or vomiting like I was before I went on it. 
 
   During the three months, I HAVE gotten a bad stomach virus that was going around.  It was really bad, but everyone in town got it, so I feel like it was just a matter of time before I got it too.  Also, I am an esthetician and am in people's faces all day long.  Just wash your hands a lot and be extra careful. The only thing that sucks is that I have to go once a month and get my bloodwork done. ugh ugh ugh!  haha And of course, my white blood count is low. 
 
  Good luck and keep us posted!

Aimee =)
Veteran Member


Date Joined Jun 2004
Total Posts : 1020
   Posted 6/3/2010 5:51 PM (GMT -7)   
I've been on 6mp on and off for years and haven't seen an increase in illness. Even when on Humira/Remicade/Cimzia, I never saw anything.

For what it's worth, I work with children, families, and the homeless population on a daily basis. Never had an issue.

The drug facts on the side of a bottle of Tylenol can scare you and these drugs can be scary, too, but reality is that there are risks we all have to weigh in order to live a normal life. I'm happy to run a slight risk of some side effects if it means I have most of my colon in tack, can work FT doing what I love, travel, enjoy eating out with friends, and have a generally happy life. I can't imagine where I would be without some of these scary drugs.
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