ON REMICADE AND NOW MY DOCTOR WANTS ME TO GO ON METHOTREXATE ALSO

I have been on remicade since July 2009 and they upped my dose in August 2010 to 7.5 kg.  My scope in January showed it is healing my colon.  Well, since my doctor upped my dose to 7.5 I have been having really bad joint pain.  Also, right before my last infusion, I started going to the bathroom more.  My remicade helped when I had my infusion on Wed. but I'm still going alittle more then usual.  When I went to the doctor today. The PA and her said something about going on 7.5 mgs of methotrexate a week with my remicade also.  I told them both no.  The reason is because my inflammation markers are high.  They are always high.  The PA said to me I know you worry about the cancer risk or infection risk with these drugs but you can't leave all this inflammation in your body either.  You can get cancer from that more then from the drugs combined.  I told her I don't feel comfortable with it and I'm not doing it now. 

I don't know what to do.  I know my inflammation needs to be under control but I don't like being on just the remicade.  I would really freak out with another immunosuppesent added to it.  I have gotten a number of colds since starting remicade and I have also had two strep throats and brohncitis.  I told her I don't need to be more at risk for colds or infections. 

I'm just sick of this. 

On the other hand, my joints hurts so bad and I get heart burn ever since I've been on the remicade and my upper scope always comes back fine.  She said I can still have acid reflux but maybe it is something else.  Yeah, the remicade.  I also have a sore throat alot.  I'm also so exhausted it interfers with my life.

I don't know what to do.  I'm just so sick of dealing with all this and making these choices that I don't know are right.  Surgery is scary and has its own risks also.  I don't like any of my choices and I don't know what to do anymore.  Sorry just need to vent. If I have surgery what if it doesn't work well and I have problems with that. I'm not bad enough yet to want to go that route because if something happens from the surgery I will wish I stayed on the remicade but if I get an infection or cancer I will wish I just had the surgery.  It is a catch 22 I guess.  I'm just sick of feel sick.  I'm also sick of going to the doctor all the time and doing all this stuff.  I just want my health back.

Are you on 5ASAs? I opted to add those in rather than upping my Remicade dose. What does your heartburn pain feel like? I have a weird upper right abdominal pain that I think is being caused by the Remicade...

These are such difficult choices. I had a severe flare that landed me in the hospital and I was given the "try Remicade now or have emergency surgery" option as I was declining very quickly. I never liked the idea of taking Remicade and permanently compromising my immune system. I would rather have an immune system than a colon. The body survives well without a colon; not so much without an immune system. If I would have only had to take Remicade a few times it would have been one thing, but knowing I had to take it every eight weeks for the rest of my life seemed very daunting. Much to the surprise of my GI doctors, I decided I wanted surgery, but not when I was so weak. I ended up trying the Remicade to at least get me out of the hospital to heal up and get stronger. The drug was successful in putting me in remission, but gave me excruciating joint pain after one infusion. At that point, I said enough is enough and scheduled surgery for a permanent ileostomy a month later. It is one of the best decision I have ever made.

You have to ask yourself what gives you the best chance of getting back to the quality of life you long for? I have heard that over 95% of people are happy with the results of their surgeries. I am not sure what the percentage is with Remicade. Maybe the number of satisfied people is similar, but it doesn't sound like you are one of them.

A- you don't like the risks.
B- it has stopped working and now you have to pile another drug on top of it.
C- it is giving you joint pain and other bad side effects.

For me, the joint pain was the clincher and made the choice for me. If I thought UC kept me from living my life to the fullest, Remicade was 100x worse. I could hardly walk while on it because my joints hurt so bad. I couldn't hold a pencil, and drawing is one of my favorite things to do. It made me completely incapable of doing all the things I loved. I never got tested for the antibodies, because the results wouldn't have mattered: I wanted surgery.

Now that I have gone through surgery and see how great life is afterwards, I get sad when people have such a huge fear of it and put up with either horrible UC symptoms or nasty drug side effects. There are risks and you can have complications but most of those things can be worked out. I chose a permanent ileostomy, but a J-pouch is a good option for many people as well. I think a consult with a top colorectal surgeon is in order just to help give you some more information on surgical options. The information may help put some of your fears to rest.

If you do end up getting an ostomy, the three most important things that help one get good results are:
1. go to a top colorectal surgeon
2. get a good stoma placement on your abdomen.
3. get a stoma that is at least an inch tall. Flush ones cause many problems.

These three things lower the risks and problems a lot!

I just created a blog: http://ostomyoutdoors.wordpress.com/ that shows my challenges and successes as I return to all the active outdoor things I love after surgery. None of them would have been possible with the joint pain from Remicade.

Good luck with your decision. Be strong and brave! Sometimes one has to take bold steps to get their health back. I am always thankful that, along with some medical therapies, there is also good surgical option to cure UC. That isn't the case for many diseases.