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Posted 11/11/2012 7:32 PM (GMT 0)
I am new to this website but a pro with Crohn's. Had this disease since 13 years old, now 43. My question is that after spending the last 7 years on Remicade (bought in to every 5 weeks)and Imuran 150mg it is no longer working for me. My Crohn's is active and I have been asked to try Tysabri a relatively new infusion to Crohn's but used for MS. I am nervous although I am a candidate and have had all the screenings except the blood test for JC Virus which i will do this week inbetween Iron Infusions. The side effects concern me especially the PML, brain infection. Has anyone tried this medication or thinking of it as it seems my options are limited.
Posted 11/12/2012 6:59 PM (GMT 0)
I haven't tried it but it is on the short list of options should my current med (Cimzia) quit working. I know I will have to think long and hard about going that route and it will be a very hard conversation to have with my husband and extended family. My GI assures me that the extreme side effects have only been shown in patients WITH JC virus - but with my track record I would be the first patient WITHOUT JC virus to have the brain infection. I'm interested to see if anyone receiving this treatment responds.
Posted 11/13/2012 1:17 AM (GMT 0)
Hi Melissa,
Thank you for your reply, I was surprised that with all the topics talked about on here, and the medications that people are on, that there wasn't much response. I have looked through a lot of info on the internet and am very worried about this course of action. Can I ask you if you had been on Remicade before you were on Cimzia? The reason I ask is because I was interested to see if that would be an option first. At least I could then rule everything out before I turn to drastic meds!
Thanks again
Posted Today 1:46 PM (GMT 0)
My GI wants to give a last medication a try (Tysabri). I have read and read on it but only see cautions and no success stories. I have been on all the meds available and also have had 4 surgeries so far. I want to find something that will help with the flare ups but don't want to cause other severe issues in the process. I don't have the JC virus. Testing was negative. I am 56 years old and recently lost my husband due to MS. I just don't want any more health dramas.
If anyone out there is currently on Tysabri for Crohns... is it helping? What side effects do you experience? Thanks so much.
Posted Today 2:01 PM (GMT 0)
skyla,

I can definitley understand your reticence. I have read a lot about Tysabri and the possibility of me going on it is very scary. There is a lot of good information on this website, thisisms.com that you might could get help from.

http://www.thisisms.com/forum/tysabri-antegren-or-natalizumab-f11/

They do have tracker threads that are enormously depressing that keeps up with the reported deaths from Tysabri also.

Have you thought about or looked into trials of Stelara?

Posted 11/30/2012 2:11 AM (GMT 0)
I took Tysabri over 5 years ago. It was still in clinical trials. The trial ended abruptly when they discovered the PML link. At the time it ended, I had only received a few infusions. The only side effects I had were headaches for a few days after the infusion. For me, it was the best treatment response I've ever had. And I've had them all. Remicade did nothing for me, as most other standard treatments. After the second infusion of Tysabri (called Antegren back then), it was like someone flipped a switch on my Crohns. I wasn't 100% symptom free but diarrhea and urgency was nearly gone and the biggest change was I suddenly had so much energy and just felt good. I think we get used to feeling bad all the time and it starts to be normal, and we forget what normal really is. It only lasted a couple months because they stopped the trial. But I still remember the response. I have not found another treatment since that worked as well, and like I said I've tried them all. Been in another 5 or 6 trials since then and have exhausted all conventional drugs. I've been too scared of the PML to take it again, but I keep it in mind if things get really bad. I don't know that you'll have the same response, we all react differently to treatments. But I wanted to give some positive perspective.
Posted 12/1/2012 1:08 AM (GMT 0)
Guys
Same thing for me here
Humira is not working for me and I have had 2 severe GI bleeds in the past 6 months
Doctor put me on 6MP 2 months ago and is weening me down from Prednisone - But old me the next course of Action would be Tysabri

Also very nervous about PML - apparently, if you do not show the antibody for JC virus you should be fine.  But I agree, I would be the one exception

The thing with Tysabri is that is is ahumanized monoclonal antibody  so it attacks a different pathway of Crohns that the Ani-TNF's including Cimzi and Humira.

A new drug that is in Phase III trials is Vedolizumab - It is the same as Tysabri  Vedolizumab is a humanized monoclonal antibody that specifically binds to the alpha-4 beta-7 integrin protein that helps move leukocytes into the gut. Natalizumab/Tysabri is a less specific integrin antagonist that affects the protein’s actions and immune-cell trafficking to a variety of body sites, including the brain which is why there are no reports of PML in the thousands of tests they are conducting with this new drug.

I came across this article yesterday as I was researching Tysabri

http://www.internalmedicinenews.com/news/conference-news/digestive-disease-week-2012/single-article/vedolizumab-scores-on-safety-efficacy-for-ulcerative-colitis/dc7ee9857e7f6f4b9a47aac0dfe39f36.html

I hope this helps

 

Posted 12/1/2012 3:22 AM (GMT 0)
I am very hopeful for Vedolizumab. I was disqualified from the trial because I had previously taken Tysabri. Hopefully it gets FDA approval one day.
Posted 12/2/2012 3:52 AM (GMT 0)
Skyla - yes I have done Remicade, failed. Surprise. My previous GI was very insistent that I continue meds and try more options even after I had failed Remicade and was failing Humira. I didn't feel like he had my best interest at heart and kicked his ass to the curb - got underneath the wing of my colo-rectal surgeon and off I went to get the colon out! She got me a new GI who is remarkable and I am a happy camper now. Aside from a few bumps along the surgery road all is well. Not to say I dont' still have bad Crohn's days because I do - but they aren't debilitating like they were before.
Posted 12/4/2012 4:21 PM (GMT 0)
Thank you for your input on Tysabri.  It sounds like everyone has been through so much with their intestines that we are all understandably cautious on taking another med that could possibly cause a serious condition.  I see my GI next week and am not sure at this point if I will give it a try.  I am weening from Prednisone due to another flare up.  It is helping calm things down.  Stopped taking Metholtrexate 2 weeks ago.  Wasn't working.  Worked for about 4 months. Thank you again.  Please keep the advice and sharing going.  It really helps.  Sherry
Posted 1/27/2013 9:46 PM (GMT 0)
I was diagnosed with MS in Dec 1999. Recently diagnosed with crohns in November 2010. My GI has treated me with Pentasa, Asacol and Lialda along with prednisone off and on. He wanted me to consult with Neurologist to see if I could take Humira. The Neurologist said absolutely NOT. Based on my MRI in 12/12, I was having an active MS attack even though I was not having any symptoms. He suggested Tysabri. I am fearful of Tysabri due to the PML as well. I went to another GI, in hopes of a different recommendation. Unfortunately, they agree that Tysabri would benefit me. I am still awaiting the results of the blood test in regards to the JCV. I am currently having a Crohns flare up, inflamed, but not excrutiating pain. I think it is from the CT entography (sp?) I had last week. The contrast was like preparing for a colonoscopy and almost had the same effects. shakehead

I am curious as to the decision others will make in regards to the Tysabri or their results using the Tysabri. Thank you in advance. Prayers to all.

Posted 1/28/2013 1:28 AM (GMT 0)
Dear StepInAhalf,

I am sorry you have to deal with Crohns and MS. You are certainly in my prayers.  I still have not tried the Tysabri.  GI wants me to try Stelara but it is still under trials.  He is trying to get around the insurance but it is a waiting game. Kind of think he is just stalling me because there is no other option.  I have had two intestinal ballooning to open my small intestine up this past year and it has delayed another surgery so far.  I have had 4 to remove colon, rectum, and lots of small intestine. Just on Prednisone right now since all else doesn't work for me.  (haved tried Imuran, Cimzia, Humira, etc) I just try and watch my food that I eat.  Low residue and limit dairy. 

I don't know what I would do in your circumstances.  The MS is a huge thing to keep under control (my hubby had MS).  Have no clue why but most treatments for MS helps Crohns, so that is a good thing for you.  You will have to follow your inner voice to see what treatment is good for you. Continue to ask lots of questions to your drs until you find the answers you need. 

Keep us posted.

Sherry

Posted 1/29/2013 12:59 PM (GMT 0)
I finally have my Tysabri infusion date for 8th February 2013and am told it will be every 4 weeks. I will keep you updated as to progress good and bad. I am very nervous about starting this course of treatment especially as I tested positive to to JC virus.

However, I try to stay positive and although I feel like a guinea pig I guess someone has to try these meds otherwise we will never know what works and what doesn't. I am fed up of living half a life due to this horrible disease and have pushed myself to exercise more and eat little and often as that seems to work for me.

I have a wonderful GI consultant here in Kentucky and I even joke with him about when my new intestines are ready for pick up! I know I am in good hands so will keep you posted.

Skylar
Posted 1/29/2013 3:52 PM (GMT 0)
Skylar.  You are extremely brave and very proud of you to try this.  You are right, someone needs to try it but I am so chicken.  Glad you have a great GI.  Mine has been with me for over a decade now from the Cleveland Clinic and I do have a fabulous surgeon too. It is good to have great communication with your GI.  You are very fortunate.  I will add you to my prayer list and please keep us posted on your progress.  Thank you for sharing this with us. Appreciate it more than you know.

Sherry

Posted 8/13/2013 3:27 AM (GMT 0)
I am so glad I checked this web site tonight! I was suppose to start Tysabri soon but my JVC test came
back positive today. I have been on everything over the years and finally had my colon removed in 2007.
I was in remission all that time but had surgery in May to revise my stoma due to scar tissue. The surgery
activated my Crohn's. I also had C-diff. I have been on cimzia the past couple of months and my disease
has spread and gotten worse. My stoma has stopped working and I have a very painful fistula.
I am currently on high doses of steroids and flagyl until we find a new drug. The new drug will probably
be Stelara. Has anyone tried this drug? My doctor talked about Vedolizumab but there is no way to get
right now.
Fruitcake. I just realized this is an old post.
Posted 8/13/2013 10:20 PM (GMT 0)

Fruitcake,

Nothing wrong with resurrecting an old thread. It's done quite often, albeit usually accidently.

I take it you had Crohn's/colitis? Curious to know some of your backround with the disease. Were you diagnosed when the treatment options were more limited?

I too am very hopeful about vedolizumaub. It does sound extremely promising.

Posted 8/15/2013 10:36 PM (GMT 0)
Hi Monte,
I was diagnosed with colitis in 1998. I tried all the different drugs available and nothing seemed to
work. I developed symptoms in my mouth and throat and was told I had both Crohn's and colitis.
I was in clinical trials for Remicade, and humira. Finally in 2007 my colon was so bad it had to be removed.
I was in remission for 6 years after my colon was removed and I developed stoma stenosis and granulomas
on the stoma so the stoma had to be redone and that actived my Crohn's. I don't seem to respond to
TNF type drugs. When my Crohn's actived it went from no symptoms to sever. If we don't find something
that works it will mean surgery to remove some of the small intestine. I have someone in the business
looking in to vedolizumaub and when it might get approved so I hope it will be soon.
What are you currently taking?
Fruitcake
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