6mp question.

[dodie74]

Hi, Just a quick question really. My son is 8 years old and currently on mesalazine, 3 half sachets a day and 1.3 ml of 6mp. Will he be on 6mp for life or is it a drug his docs could take him off of? my husband also has crohns and he takes pentasa only and has never been on any other meds at all, well apart from calcium tablets. Also i know it a long way away ( hopefully) but does 6mp affect fertility?

 

[Rebecca85]

6mp I believe has a temporary effect on male fertility (I think there is a higher incidence of foetal problems if the male is on 6mp). But the good news Is the risk is back to normal after 3 months off the drug. So plenty of time!

As for timings, I am taking aza which is the sister drug, and have been told They will review when ai have been on it for 5 years.

 

[uhmayzing]

I was just attending a support seminar which discussed these issues. Though there haven't been studies of use of 6MP for more than 20 years, doctors are using it as a maintenance drug and encouraging those who are helped by it to continue on it long term.

 

[Loriebird]

It's really hard to predict what your treatments are going to look like in the future. I was on remicade and 6mp for a while, but I was recently taken off of 6mp because they decided it was no longer necessary because we elected for surgery, and the remicade was effective on its own. When circumstances change, the medications are bound to change as well.

6mp isn't the worse drug to be on for life if it works for your son. It's relatively cheap, and I never noticed any terrible side effects

In fact, I would have preferred to stay on 6mp and not remicade. It's a lot more convenient. Remicade is expensive and you have to take time off work to get your infusions. But you can't always just go off remicade.. your body can develop an allergy if you are off it too long. I don't believe the same is true for 6mp. Ask your doctor, but I'm sure it's not necessarily a life sentence.

 

[Dutch941]

Hi dodie......my son is 12 and also newly on 6 mp. We have been told that he will likely be on medicine his whole life and 6 mp is long term. He couldn't say forever because like others mentioned things change and may effect the medicine choices. If he had his colon removed he would be cured effectively and therefore no more 6mp. But the impression I got was that if 6 mp worked it would be a part of his life. He explained the difference between a child having severe UC and an adult is that when the disease presents as an adult it is often less severe and when a case is more severe it may present at an earlier age as it did in my son and in yours.
We too are very concerned about side effects but also weigh that against making him healthy during his puberty years. Feels kind of like a rock and a hard place doesn't it? Keep us up to date..I'd love to hear how things go for you and maybe our experiences could help you as well. Best of luck.
Don

 

[Johnnysmom]

6mp is currently working for my son and if it continues to we won't rock the boat and take him off of it anytime soon. I anticipate that if we are lucky enough to have it work long term we will evaluate our options every 3-5 years. There are lots of new meds coming out that are very promising and I truly believe there will more options in the future. Once he is fully grown I would like to revisit the 5asa drugs. We never tried them, our Dr. advised us to go with something stronger. I think trying to get into remission is easier if you hit things hard and fast. My fear was that a drug like Pentasa would mask symptoms while damage was being done. And then remission might be harder to achive later on. Hopefully soon they will develop ways to know the severity of the disease and we have a better idea about what medication is appropriate.

 

[Mehita]

Has anyone's kids experienced side effects with 6mp?

 

[Johnnysmom]

Mehita, My son had elevated liver enzymes with 6mp so they cut the dose in half and added allopurinol. Then he had a lowered white blood cell count so they lowered the dose again. It took a few months but they are back to normal. He had mild nausea at times when his dose was too high but that went away once things were adjusted. Really for us it was just a matter of trial and error until we got the dose right.

 

[Dutch941]

We also had liver enzyme issues at 50 mg...we cut back after stomacain put us in the ER again......ow he takes 50 one day...25 the next...and side effects seem to be gone...although if you read my other posts you'll see we may not be getting the therapeutic effect......dr talking about switching....