Remicade killing me? Elevated AST, ALT, lymphocytes and other side effects

[Sucane1]

I’m a nervous wreck. For the first 40+ years of my life I never had any major health issues. I don’t drink, I don’t smoke, my biggest vice before being diagnosed with crohns was my love for junk food. A stomach ache here or there, a flu or virus here or there and that’s it!

Then it all changed this last December. I experienced something I had never had before. I had giant bruise like lumps on my legs, I was pooping 8-14 times a day, bleeding, in a lot of pain, losing weight even though I was eating way more than usual.....the dr did tons of tests and a colonoscopy and said I had crohns. She started me on remicade in February.

Since starting remicade, my tummy has gotten better, but I was developing antibodies, so I had to go every four weeks for my infusions. I used to be a marathon runner, now I have blisters, peeling painful itching hands and feet and can barely walk around a store without pain. (Though another poster told me about mother of all cream and it’s given me hope to try a short run tomorrow). The doctor confirmed it was a remicade side effect and she was surprised I got it so quickly.

Before my last infusion they took tons of blood (including checking my antibody levels). Now I have elevated AST, ALT and absolute lymphocytes. These levels were all normal the prior 3 blood tests. They want me to redo all my blood tests and added specialized liver tests in three weeks. I’m a nervous wreck that the remicade is killing my liver.

Is the remicade killing me? Has any one else experienced this with remicade? If this is remicade, is any of the remicade damage reversible or is this permanent?

I’m a nervous wreck! My hubby keeps telling me not to worry. I can’t stop worrying about it. I have three little kids (the youngest is 17 months) and I’m so scared I won’t be there for them as they grow up.

Please, can anyone help me calm my nerves? Has any else experienced these issues?

 

[shamrock15]

It sounds like you are being tracked well by your GI team. It is known that remicade can cause difficulties. It may turn out that it isn't the medication for you. I would expect that if your current situation continues that you will probably have your meds changed. There are now several alternatives to remicade and there are many members of this site for whom the change has worked out well.

As a lifelong crohn's sufferer, I know how you feel about the drop in physical abilities. Here's a potential upside for you though. With the right medications you should be able to live a fairly regular life again. Despite having had 6 surgeries for my crohn's, I have just this summer finished more cycling than I have ever done - 2000 kilometres. Admittedly, the road hasn't always been easy. Almost everything that I have achieved has come about after my crohn's diagnosis, and much of it before I got remicade.

With you being a marathoner, you know about working through pain. Tap into that drive, and combined with eventually the right medication, you will be back in fine form. Crohn's is a huge adjustment, but you already have the mindset you need to get through it.