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Posted 3/18/2009 3:42 PM (GMT 0)
For those who are taking the drug have you been able to continue to work and also is there a worry about germs going to do things where there is crowd of people and possible colds and that sort of thing.  UC has affected my life and taken so much already (and I've been truly lucky) I don't want to add something that is going to limit my life more...today is the day I am supposed to start the drug so more anxious than ever, but all the feedbacks have been great and I know everyones case will vary some...the fight with this stuff is on I guess.  Thanks for the well wishes we will see how it goes.
Posted 3/18/2009 3:51 PM (GMT 0)
My sister is an MD (pediatric nephrologist), so of course I've been talking with her quite a bit about my UC since my diagnosis. Even though she's not a GI, I still value her opinion and insight. Anyway, at my GI appointment on Monday, we were talking about potential next steps if it turns out I'm not able to stay out of flares on the 5ASAs. My doctor will not let me be on prednisone for any longer than 3-4 months at a time nor will he let me continually use prednisone to get out of flares. He said that new information actually suggests it may be better to go ahead and jump to remicade (and it sounded like it could be used temporarily, then go back to just using the 5ASAs) in cases like that rather than use something like 6MP, because remicade can actually heal past damage in the colon. That's neither her nor there, in answering your question, though!

Anyway, when I was talking with my sister about this, and about how remicade has such potentially serious side effects, partially due to immune suppression, she said that it's still a an open book as to whether people are better off having an immune system that's compromised due to a drug or an immune system that's compromised due to a uncontrolled or poorly controlled autoimmune disease. I hope that helps!
Posted 3/18/2009 6:35 PM (GMT 0)
Both my UC kiddos are on immune suppressors and go to school - talk about germs... They seem to stay quite healthy, actually. This whole school year, my son has only missed one day due to a cold and my daughter missed 3 from a nasty respiratory virus that hit the her whole school (there were over 100 kids out sick at that time), but she shook it without any secondary infections. My 2 IBD kids don't seem to be any more prone to bugs than my non IBD kid.

We are obsessive about hand washing, though and I have the kids keep purell/germ-x (alcohol hand gel) in their lockers, lunch boxes, car, etc. I think that is the key for anyone!

Your doctor should be watching your white counts and as long as they don't fall too low, you should have enough of an immune system left to fight things off.
Posted 3/18/2009 6:49 PM (GMT 0)
Thank you.  That is some hopeful news.  I hope they continue to do well.  I too have had UC since age 17.  Have they had much in the way of side effects from immunosupprestents.  It doesn't look by the profile that 6MP is what they are on

keylime said...
Both my UC kiddos are on immune suppressors and go to school - talk about germs... They seem to stay quite healthy, actually. This whole school year, my son has only missed one day due to a cold and my daughter missed 3 from a nasty respiratory virus that hit the her whole school (there were over 100 kids out sick at that time), but she shook it without any secondary infections. My 2 IBD kids don't seem to be any more prone to bugs than my non IBD kid.

We are obsessive about hand washing, though and I have the kids keep purell/germ-x (alcohol hand gel) in their lockers, lunch boxes, car, etc. I think that is the key for anyone!

Your doctor should be watching your white counts and as long as they don't fall too low, you should have enough of an immune system left to fight things off.

Posted 3/18/2009 11:24 PM (GMT 0)
My 10 year old daughter is on the 6mp and my 17 year old son is on Azasan (azathioprine - a related drug to 6mp). Neither have really had side effects. My son took 6mp years ago and he his white counts dropped too low and his liver enzymes went up - he never felt bad, we just learned that from the blood tests. He does fine an the aza though.

I bet you'll do just fine. I was a nervous wreck when the doctors decided to put the kids on these drugs, but almost 2 years later, all is well!!

Keep us posted on how it goes for you! ((((Hugs))))
Posted 3/18/2009 11:35 PM (GMT 0)

I am new at 6MP and 68 but that sort of classifies me as a kid because older people are more prone to get infections.  Doctor told me that if my white blood count stays up not to worry so the blood tests every month.  My husband has lung cancer and COPD so he has to be careful of lnfections also so we wash hands and carry germ stuff.  Our supermarkets have wipes to use on the carts and every clinic and hospital has stuff to use in containers on walls and doors - use it!!

ElaineNY

Posted 3/18/2009 11:37 PM (GMT 0)
Thank you so much.  I'm not doing well emotionally today and needed to hear something positive.  When your son had the low counts how often at the time were they monitoring his blood.  My heart goes out to all of you that you and they have to deal with UC (not fun and especially  when you are young) bless you for your good wishes and hugs really can use them today

keylime said...
My 10 year old daughter is on the 6mp and my 17 year old son is on Azasan (azathioprine - a related drug to 6mp). Neither have really had side effects. My son took 6mp years ago and he his white counts dropped too low and his liver enzymes went up - he never felt bad, we just learned that from the blood tests. He does fine an the aza though.

I bet you'll do just fine. I was a nervous wreck when the doctors decided to put the kids on these drugs, but almost 2 years later, all is well!!

Keep us posted on how it goes for you! ((((Hugs))))

Posted 3/18/2009 11:41 PM (GMT 0)
Thank you Elaine for all your information.  I appreciate so much all the feedback.  Today has been a very emotional (not doing well day) and the stress is overtaking about this medication.  I am going to be taking it here shortly, so hopefully everything will be alright.  I have already talked with so many wonderful people on this site, it's amazing.  Thanks to all.

kops2da said...

I am new at 6MP and 68 but that sort of classifies me as a kid because older people are more prone to get infections.  Doctor told me that if my white blood count stays up not to worry so the blood tests every month.  My husband has lung cancer and COPD so he has to be careful of lnfections also so we wash hands and carry germ stuff.  Our supermarkets have wipes to use on the carts and every clinic and hospital has stuff to use in containers on walls and doors - use it!!

ElaineNY


Posted 3/19/2009 12:09 AM (GMT 0)
I understand your fears. I was also very hesitant to let my daughter take 6MP. What I didn't realize was that Prednisone affects your immune system just as much, if not more. I guess it all depends on how your body processes the drug. I've heard a lot of people had good results from 6MP. My daughter developed joint pain so she was only on it for 2 weeks. Thankfully we are almost out of the worst of flu season...
Posted 3/19/2009 1:11 AM (GMT 0)
I was thinking back when I was a teenager with this and it seemed like you just went with the flow and hopefully didn't stress and you just seemed to adjust.

keylime said...
My 10 year old daughter is on the 6mp and my 17 year old son is on Azasan (azathioprine - a related drug to 6mp). Neither have really had side effects. My son took 6mp years ago and he his white counts dropped too low and his liver enzymes went up - he never felt bad, we just learned that from the blood tests. He does fine an the aza though.

I bet you'll do just fine. I was a nervous wreck when the doctors decided to put the kids on these drugs, but almost 2 years later, all is well!!

Keep us posted on how it goes for you! ((((Hugs))))

Posted 3/19/2009 1:34 AM (GMT 0)
Hi. just to add to all the good input above.. I've been on 6MP for about 3 years and I did a lot of research on all my options. I understand your apprehension, but it can be a very good choice if it works for you.

Amazingly, on 6MP, I've barely had any colds. I'm in my 30s and used to get colds all the time in college. But lately, I've barely had any. One per year, I think. Plus, I spend time in cities and I go to work.

The only words of caution would be to be patient. It took at least 7 months before I felt better, although I know that I was on the slowest end of the spectrum. Also, you need to get your blood checked as you go along.
Posted 3/19/2009 1:40 AM (GMT 0)

mollymcbutter said...
Thank you so much. I'm not doing well emotionally today and needed to hear something positive. When your son had the low counts how often at the time were they monitoring his blood. My heart goes out to all of you that you and they have to deal with UC (not fun and especially when you are young) bless you for your good wishes and hugs really can use them today

It was back in 2003 so my memory is fuzzy, but he hadn't been on it too long - maybe two-three weeks. He was also on prednisone at that time which also can play a part in the lowered white counts. He was doing better UC wise so the doctor just had him quit the 6mp altogether. I believe when they first start the immunosuppressors they test weekly and if all looks good, every two weeks, then four and now they are up to tests every 12 weeks. We'll never go longer than that though as it is always wise to monitor regularly on these drugs.

I just have to remind my self that these drugs have been around for quite sometime and the IBD patients take a much lower dosage than organ transplant patients that also take this drug. I also know of some really young ones that take this drug and do very well on it.

A good thing to remember also, is that if by chance you have a bit of trouble with white counts or liver issues - a tweak in dosage usually does the trick and if you have to come off of it, the white counts and liver usually recover very quickly. And like I said, my son never felt bad, we just became aware of the issues because of the blood work!!

Post everyday for the first few days if you would like and we will hold your hand through this time - you can also email me if you would like - my email can be found by clicking on the envelope icon below my member name over on the left. I so understand what you are going through!!! ((((big hugs))))!!!

Here is a neat article about the lady that invented 6mp and Imuran. It was approved in 1953, she eventually won the Nobel Peace prize for this!! Really great story that kind of helps you to "know thy enemy": http://www.nap.edu/html/biomems/gelion.html
Posted 3/19/2009 1:58 AM (GMT 0)
I work in a health care setting and don't seem to get sick any more often than anybody else in my office. And for what it's worth, my environmental allergies seem much less active since being on imuran. I have a kindergartener and a kid in daycare, too, and still haven't really been down & out sick yet this winter. (a couple head colds, and one 12 hour bout of flu, but that's it) I'm now only getting blood tests every 2 months since things were steady and fine for the first year. I was terrified before starting imuran, but am doing great on it now.
Posted 3/19/2009 2:07 AM (GMT 0)

Awwwwwww!  The toothfairy is having a baby - congratulations!  And thanks for the reassurence about immune suppressants!

ElaineNY

Posted 3/19/2009 3:34 AM (GMT 0)
Hi Julee, thanks for the information.  I'm glad to hear you have had success with this.  I just took the drug tonight for first time, but am feeling really anxious.  Hope the anxiousness will pass...take care...MollyMcB

julee70 said...
Hi. just to add to all the good input above.. I've been on 6MP for about 3 years and I did a lot of research on all my options. I understand your apprehension, but it can be a very good choice if it works for you.

Amazingly, on 6MP, I've barely had any colds. I'm in my 30s and used to get colds all the time in college. But lately, I've barely had any. One per year, I think. Plus, I spend time in cities and I go to work.

The only words of caution would be to be patient. It took at least 7 months before I felt better, although I know that I was on the slowest end of the spectrum. Also, you need to get your blood checked as you go along.

Posted 3/19/2009 5:16 AM (GMT 0)
hi there. i've been on 6-mp for a month and a half...i have a 3.5 yr old daughter and my wife teaches at her school...so i'm always freaked out about germs.
my first problem actually is occruring right now. i have an infection on my finger- one of those annoying ones that start by your fingernail.
it's not getting better after 2 days- so i called my doc tonight and just picked up an antibiotic.
doc said to monitor carefully and call asap if it doesn't get better or gets worse.
i'm a little freaked out, but hopefully the antibiotoc kicks it.
other than that i have not had any colds while my daughter has had a runny nose and cough on and off for a while from the petri dish, sorry school she goes to...
Posted 3/19/2009 5:38 AM (GMT 0)
Hi, sorry to hear about your finger, I hope the antibiotics kick in and things will get much better.  I'm also glad to hear that you haven't picked up any of those nasty school bugs either.  Keep posted about your finger and feel confident this antibiotic will kick it.

mtgman said...
hi there. i've been on 6-mp for a month and a half...i have a 3.5 yr old daughter and my wife teaches at her school...so i'm always freaked out about germs.
my first problem actually is occruring right now. i have an infection on my finger- one of those annoying ones that start by your fingernail.
it's not getting better after 2 days- so i called my doc tonight and just picked up an antibiotic.
doc said to monitor carefully and call asap if it doesn't get better or gets worse.
i'm a little freaked out, but hopefully the antibiotoc kicks it.
other than that i have not had any colds while my daughter has had a runny nose and cough on and off for a while from the petri dish, sorry school she goes to...

Posted 3/19/2009 5:48 AM (GMT 0)
HI there, first of all congratulations on being pregnant, what exciting news.  I too work in the healthcare setting directly with patients, those that are going to be having surgery.  So I will just have to be really cautious and hopefully things will go well.  It gives me hope when I hear others have done so well...again congrats, hopefully you will post again and let us know how you are coming along...MollyMcButter

tooth fairy said...
I work in a health care setting and don't seem to get sick any more often than anybody else in my office. And for what it's worth, my environmental allergies seem much less active since being on imuran. I have a kindergartener and a kid in daycare, too, and still haven't really been down & out sick yet this winter. (a couple head colds, and one 12 hour bout of flu, but that's it) I'm now only getting blood tests every 2 months since things were steady and fine for the first year. I was terrified before starting imuran, but am doing great on it now.

Posted 3/19/2009 5:53 AM (GMT 0)
Julie, thanks for everything.  I may have to take you up on that e mail and definetely taking the hugs.  I will check out the article...good thoughts sent out to you as well...MollyMcB

keylime said...

mollymcbutter said...
Thank you so much. I'm not doing well emotionally today and needed to hear something positive. When your son had the low counts how often at the time were they monitoring his blood. My heart goes out to all of you that you and they have to deal with UC (not fun and especially when you are young) bless you for your good wishes and hugs really can use them today

It was back in 2003 so my memory is fuzzy, but he hadn't been on it too long - maybe two-three weeks. He was also on prednisone at that time which also can play a part in the lowered white counts. He was doing better UC wise so the doctor just had him quit the 6mp altogether. I believe when they first start the immunosuppressors they test weekly and if all looks good, every two weeks, then four and now they are up to tests every 12 weeks. We'll never go longer than that though as it is always wise to monitor regularly on these drugs.

I just have to remind my self that these drugs have been around for quite sometime and the IBD patients take a much lower dosage than organ transplant patients that also take this drug. I also know of some really young ones that take this drug and do very well on it.

A good thing to remember also, is that if by chance you have a bit of trouble with white counts or liver issues - a tweak in dosage usually does the trick and if you have to come off of it, the white counts and liver usually recover very quickly. And like I said, my son never felt bad, we just became aware of the issues because of the blood work!!

Post everyday for the first few days if you would like and we will hold your hand through this time - you can also email me if you would like - my email can be found by clicking on the envelope icon below my member name over on the left. I so understand what you are going through!!! ((((big hugs))))!!!

Here is a neat article about the lady that invented 6mp and Imuran. It was approved in 1953, she eventually won the Nobel Peace prize for this!! Really great story that kind of helps you to "know thy enemy": http://www.nap.edu/html/biomems/gelion.html

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