My story

[Markwayne]

This is my first time using a website like his so be patient. I have a long history of crohns in my family my grandfather had crohns and his daughter and my mother had crohns, I was diagnosed with crohns in 1993 and now my daughter has been diagnosed with uc three years ago.

I have tried all medications including TNF blockers meth,humira, and rhemi and also tried cimzia to no prevail. After failing cimzia they increased my steroids to 60 mg a day and tried to wean me down. The problem was i started having side affects to prednisone but they could not get mo off due to adrenal insufficiency. The symptomfs with ai are terrible and you feel like your body is shutting down. I had been to mayo clinic in minn wind they told me I either had to try tysabri or have another surgery. They were very nice there but I just wanted that second opinion so I went to wash university in st Louis and the crohns dr there agreed. So not wanting to go through another surgery I opted for tysabri and will take my chances with the pml. I hope to soon find out if it is going to help as I dont want to take the medicine any longer than I have to if its not going to work. I'm not sure of how many crohns patients out there have tried tysabri but if there are any I would love to hear from you.

Thank you for listening
Mark

 

[Crohn's 35]

Hi Mark, welcome to the forum. I see the biologics didnt work for you, does that also include Methotrexate? I did that too but none worked for me. My Gi did mention Tysabri and I said no. I am not that bad and will just continue to take the odd Flagyl. Just dont think that drug is for me. We dont have Cimzia here so some day. My family is also cursed with IBD as well. My first resection gave me 8 good years,and wished I knew more about the disease like I do now, I might have saved myself from going to a 2nd resection.

Many people here to give you their insight, not sure how many have been on Tysabri. Good luck.

 

[David]

Hi Mark, man, I'm sorry to hear you're having such a tough time of it. You poor guy I just wanted to chime in and welcome you to the forum and wish you all the best going forward. Many *hugs* to you my friend.

 

[AndiGirl]

Welcome Mark! Your family history sounds a little like mine. I have Crohn's Disease and so does my brother. My grandfather, and possibly my father all had/have it. You are in the right spot to get support.