GOT PAPERWORK FOR NEW TRIAL DRUG MLN-0002 WHAT WOULD YOU DO?

what is pml?

I personally prefer to go with the known risks, and wouldn't go for the trial drug. However, everyone's situation is different, and of course I can't tell whats best for you. It sounds as though the risk and reward potential are both higher with this trial drug. If you're comfortable with that then it may be the right decision. There will be risks no matter which treatment option you choose.

I wish I could offer you some solid advice. I do hope things work out well for you regardless of how you decide to proceed.

All I can say is that I am grateful that 6MP was the last drug treatment available for UC when I had UC.

Sue

My wife who works with MS patients says tysabri is amazingly effective. She seems to remember the Docs saying that most of the people who had problems with it had existing heart problems or were mixing it with other drugs like avanex.

If you are in a trial, they will probably monitor you like crazy to make sure you are not having any bad effects from the drug, but I understand your trepidation. Of course surgery comes with it's own risks too.

katie -pml is like mad cow diesiese in 42 patients on tysabri.

There has been no link to pml with the new drug but it is new.

They must be worried about it because it is mentioned alot and they monitor you but what is the point if you get it they can't reverse it. I will be terriffied all the time. i am on remicade.

The paper work says the chances are 1 out of less than 1000 but how do they know.

My husband put it this way if Miller Park(our baseball field here) was full 4 out of all the people there would get pml. My chance of getting cancer on remicade is 1 out of every 1500.

I know it isn't alot but if I get something serious from this drug I would rather have had the surgery but I'm scared of the risks of surgery.

Yes I have three kids and I know they rather me be at there wedding with a bag than not there at all. It is hard to decide.

What else could go wrong on this drug that they don't know about.

I know it says the people that got pml had ms which is inflammation in the brain so is that why?

It said everyone has the jc virus and that when you immune system is suppressed you can't fight off an infection if this is the case how come no one has got it on remicade and humira

WIMOMOFTHREE: My advice...If in doubt, DONT!

Seriously, not worth the stress of the what if's. I would a million times go surgery b4 more toxic drugs that may or may not keep you in remission. Heck, my GI wants me to start Imuran, and I'm resisting!

Hang in there. It's your body and your life. Do what feels right for you. I'm sure if the specialists had to try the drugs themselves they wouldn't be so quick to make you take them!

summerstorm that is what scares me even with the remicade. They don't know. If humira don't work I will be switched from trial drug to trial drug until there aren't any or surgery. I will talk to her but I just get a bad feeling. My mom says I do stress about the what ifs from the remicade and i will with this she said maybe surgery is better for you than.

I guess I am more of a risk taker, I would consider it. Someone did the study for Remicade, and gave me the opportunity for a better life. I did the study for asacol, and it saved my colon. (Although now I wonder if that was the best outcome...) They did monitor me like crazy.

It may be that one single person had that condition develop, so they are covering their asses, big time. I think hearing the actual experience of doctors who prescribe the similar drug is more meaningful than all that paperwork.

No way, it's not worth it. You can have a great life without a colon. No way I'd do Remicade either unless I had RA.

Sue

They said you can go into the open label study after 52 weeks on the trial. If it doesn't get pulled off the market. The people that developed PML on tysabri didn't get it until years later.

Slight-it was 42 people 2 died the rest badly diabled forever. It isn't reversable.

Summerstorm-I just said to my mom I need to listen to my gut more because when I don't good things don't happen, bad things do.

I'm on remicade, I've been on it since july of 2009. I had a scope in March 2010 and it really hasn't healed my colon at all, not to mention I get some side effects from it. The funny thing is it has helped my symptoms. I've had no accidents(knock on wood lol) and I've went from D about 15 times a day with urgency to about 3-6 a day.

My doc says she can't keep me on the remicade if it isn't healing me. I guess it is hard for me because I feel okay(minus the fatigue) and it is hard to wrap my head around surgery because I can kind of have a life.

My remi was upped to 7.5 kg every 8 weeks, she said though I haven't formed antibodies and i have enough drug in my system. I'm going to have a scope and then I will talk to her.

I would still like to give remicade alittle longer. She said I run the risk of colon cancer.

I don't think I'm going to do the drug and if she don't understand than I will find a new doc. I'm kind of open to humira but I hate to go off remicade and the humira not help at all.

I think if I was bad(like i was before remicade) I would be ready for the surgery. I had no life. I'm just praying this scope will show it is healing me.

Pred. has helped me I was on it for a month June 2009 and than I went on it from July 2009- Now 2009. I gained 50 pounds(I've only lost 15) and it was making me crazy. I asked to go off it because I couldn't take the mood swings anymore. lol

Interesting. Have you been using rectal meds? I would definitely give Humira a try before using a trial drug, at least that you can take continuously. I hate the idea of these trials ending and ending up having to stop the medication, especially if it's helping you. That drug does have a lot of nasty possible consequences but I have seen a few people posting here that have tried it or are using it. Are you taking 5ASAs or 6mp? Have you considered methotrexate? Have you tried any antibiotics? I would definitely go through all of these things before taking that trial drug. Where is the inflammation most active? Is it continuous? Have you gotten opinions from other GIs? Maybe your GI is being too conservative about taking you off Remicade, it should be your choice. If you feel like you're doing alright, you shouldn't be forced to consider surgery or trial drugs. Of course, you don't want to risk increasing your chances of developing colon cancer but you also don't want to get some of the possible side effects of that trial drug!!