Tysabri infusions

[ponygirlmurry]

Hi All, Can anyone give me any info on Tysabri? I have gone thru Remicade, HUmira, Cimzia and now the new doc wants me to try Tysabri. I have had Crohns for over 20 years and I'm so tired of feeling crappy all the time. I have had 13 surgeries on my butt alone for abscesses and they don't want to do an ostomy since I can still get the abscesses and I have the CD in my colon, illium and everywhere and where do they stop taking out my guts?

I'm scared as I have been off biologics for 1 1/2 years (lost insurance) now I have insurance again and mostly just medicate myself with vicodin & marijuana. Since off biologics I developed posterior scleritis in my right eye and KNEW it was from the Crohn's and thankfully a doctor figured it out & wanted me tested for lupus, MS & RA. The eye doc seemed to think going back on biologics would help my eyes & it's all connected to the auto-immune disease crap running thru my body.

I'm almost 55 years old, trying to get on disability & have not worked in 1 1/2 years. I lost my job of 18 yrs b/c of the CD as I ran out of FMLA and my employers knew about my health & trying to get disability but just let me go. Thank goodness 18 years with the State of AZ has helped me get disability w/ the AZ State Retirement system but I have had to move back home to live with my parents in CT. Lost my condo in Tucson to foreclosure, sold most of my belongings and living at home at 55 yrs old. Thank goodness I never had children as I can hardly care for myself.

There is not much out there on Tysabri and I'm willing to try it, even if it kills me or makes me brain dead. If anyone has experience with Tysabri, please let me know. Doc has no literature to give me and has made me feel this is my only option. I hate being pushed around by doctors and I am at the end of my rope. Thanks in advance for any info or advice you may have out there!
:depressed:

 

[Clash]

Welcome to the forum, ponygirlmurry. So sorry to hear of all the troubles you are having at the moment.

Here(<--click here) is a link to our wiki forum that has details about Tysabri and at the bottom it lists threads relevant to Tysabri. I am also tagging Manzyb as I think she has utilized Tysabri at one point. Hopefully, she will see the tag and drop by with her experience.

I do believe you have to be tested for the JC virus before starting Tysabri, has your doc set up this test for you yet?

 

[Jack2013]

I am in a similar situation as you. I am 20 and have had crohn's for over 10 years now. I have had around 15 surgeries the past 2 years for reoccurring abscesses and a complex fistula tract, I went through remicade, cimzia, humira, you name it. I had a bag 2 years ago when my colon was removed. When I reconnected, everything spread to the rectum. I currently have a temporary ileostomy (2nd one) but my rectum is still really messed up.

I have now done 2 infusions of tysabri. So far my energy has improved a little bit but I still am in pain when I sit and need to take around 3 painkillers throughout the day. I actually had an appointment with my surgeon yesterday because I felt a hard lump around my drain in my butt, so I automatically assumed it was another abscess. When he examined the site he said that the area looked a lot better than it did 6 weeks ago, and that the area that hurt was just developing and didn't require surgery. He put me back on cipro because I ran out a week ago and the pain had gotten worse in the last week.

Tysabri is an hour infusion every 4 weeks, and the people who respond see the biggest difference after 3 or 4 infusions, so hopefully I see a lot more improvement after these next 2 doses. The fact that my bottom is looking better could be due to this large malecot catheter/drain that my surgeon put in after my last drainage or even the cipro I have taken 2x a day for a month now. But I have had numerous setons and taken flagyl and antibiotics all the time and they didn't help, so I am thinking I am already seeing some of the benefits of Tysabri.

Also, there is a sister drug of Tysabri that is coming out in 2013 that does not cross the blood barrier in the brain, so there is no chance of PML. I will switch to that (taking it off label) if all goes well on Tysabri.

I have been journaling my progress for people like you as well, because I know not many people have experience with this med. Good luck to you and I hope this information helped you.

Journal: http://www.crohnsforum.com/showthread.php?t=45934

 

[ponygirlmurry]

Thanks for all of your imput. I tested negative for the JC virus already. I am trying to stay positive but easier said than3 done sometimes. Thanks for your support

 

[Manzyb]

I am sorry, I just now saw this post.

ponygirlmurry- I wish you all the best of luck with Tysabri. There really isn't much out there to read up on it with people with Crohn's. I talked to the infusion nurse at my doctors office before I started taking it just to get an idea of how it would go.

Chances are, if you test negative for the JC virus that you will not develop PML. From what my doctor told me, people who have come down with PML all had MS and that was because the brain was already affected in those cases. Now, that was about a year ago when he told me that, but I took his word for it.

I was on Tysabri from March 2011 until September 2011. I had no side effects whatsoever from it. The inufsions were much like remicade, you go and get premedicated and they start the infusion. Only this one only takes about 2 hours start to finish

They will ask you a series of questions before each infusion as well to check on your mental status before they administer the dose.

Please let me know if you have any other questions!