# Tysabri



## LaHarmon (May 16, 2012)

Hello all! After showing little improvement on the TNF Alpha blockers my GI has decided that I might benefit from the MS drug Tysabri. I have already had the blood test that shows I am in fact JCV antibody negative but it makes me worried because I have been on immune inhibitors for the last 7 years. Ive asked to be retested just to make sure we didn't have a false negative. In the meantime I've decided to try the SCD Diet (simple carbohydrate diet). Does anybody have any words of advice regarding the Tysabri? I have severe inflamation in the colon and I'm just kinda at a loss.
Thanks,
Loni
Diagnosed 2/05 
Have tried pentasa, Remicade, Humaria, cimzia, methotrexate all to no real help.
Had a colon resection 7/11 but reoccurrence of diesese 12/11


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## Dietcoke (May 16, 2012)

Hi, I just started tysabri yesterday. It was my first infusion. I, like you, am very scared of the medication but I am out of options as well. Next stop, ileostomy. I will keep you posted on how my treatment goes. Debbie


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## Miss Underestimated (May 16, 2012)

Please do let us know how it goes.


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## LaHarmon (May 16, 2012)

Thanks Debbie, it's good to see that I'm not alone. Please keep us updated about your treatment. Hopefully it'll work wonders for you! My GI doctor keeps saying its an underused drug because people are scared of the risks but because of the new information about the JCV antibody it might be able to be used to its full potential.  The plus side is now that they know not all crohn's sufferers are TNF Alpha based they are working on new treatments for people like us. Maybe in the next couple years a drug that isn't quite so scary will come out. In the meantime I'll be thinking of you!
Loni


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## Manzyb (May 18, 2012)

Hi LaHarmon,

I'm currently on Tysabri as well.  I just had my 3rd infusion this week.  I haven't had any side effects, other than being pretty tired that day of the infusion.  I haven't noticed any changes good or bad so far with my treatment.  Although, they do say that it takes a few infusions for you to be able to tell a difference.  

i've always been on immuno suppressants, for about as long as I can remember, and my doctor didn't seem to be worried about the risk of PML from taking them.  I was also negative on the JC antibodies.

Are you going to start taking it, Loni?  I understand that it is a scary drug, but the chances of actually getting the PML are so low.


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## LaHarmon (May 18, 2012)

I told him I needed a second JCV blood test and if that came back negative as well I would seriously consider it. Ideally we would use it as a bridge drug until something less scary cane out. Thanks for replying. Keep is updated about how you do with your infusions. I have my second blood test today and it'll be at least four weeks till we get that result. 
Loni


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## Curtis123 (May 18, 2012)

LaHarmon,
     Our timelines are quite simialar (my resection was in September 2011 -- reverse ileostomy February 2012 -- Crohns Flare March 2012).  Every course of meds failed...GI refered me to the IBD group within the hospital with the intension of starting Tysabri (my appointment is on 5/23).  JVC blood test reveals I am a canidate for Tysabri.  The GI said if I do not respond to Tysabri I'll have a permanent "bag"... but I've heard about a drug "Stelara" that is FDA approved for psoriasis but has been tested and showed great results for CD and I plan on discussing with the new Doctor Wednesday.  
     So keep faith and know Tysabri is not the last option.  I hope if you elect to go that route it works for you, but if it doesn't know there are other avenues to explore.


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## Manzyb (May 18, 2012)

I know the side effects seem scary, but when you put it in perspective, it's really not that bad.  When taking remicade, humira you're at an increased chance of cancers and things like that.  They have to warn you about what could possibly happen, even if its just a smidgen of a chance of it happening.  My GI said there was only one person who was taking the Tysabri for Crohn's had ended up getting PML.  I honestly worry more about the damage that untreated active disease will do to me, more than the medications.    It sucks that we have to worry about this stuff so much.  It's kind of like you're damned if you do and damned if you don't!


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## Dietcoke (May 21, 2012)

ManzyB, I noticed you've had three infusions of tysabri so far and haven't seen any benefit. That's too bad! I have heard it can actually take up to 6 infusions, but who knows.

I just had my first infusion last week. This is my last option too. I've been on everything and nothing has worked for me, in fact most meds made me significantly worse. Surprisingly the only med that worked for me was cipro and I was on that for four years. I have crohn's colitis in my colon and rectum and I go all day and night too. It's utterly exhausting. My next stop is perm ileostomy with bag.

Anyway, I have a very active six year old which is difficult, and I know what a one-year old is like too. It's hard. This disease sucks. And I'm hoping that tysabri or something else comes along and helps us all! just wanted to let you know you're not alone! Keep strong and positive! Debbie


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## Manzyb (May 22, 2012)

Thank you, Debbie!   I hope you get some much needed relief from it, too!  It's suppose to be a great drug so keeping fingers crossed!  I actually had a better day yesterday.  i didn't have too much stomach pain, and wasn't quite as tired as I have been the last few months.    Keeping fingers crossed for both of us! 


Loni, I hope you get your 2nd results back quickly!  After I had my negative blood test, it ended up taking me about a month to get my first infusion since they make you enroll in the TOUCH program, an then have to have insurance approval and all of that junk.


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## Avw (Jul 5, 2012)

Well it appears I will be joining you guys in the Tysabri club! I know this drug is usually a last ditch effort for Crohn's, so I was wondering if any of you have previously had problems with abscesses and/or fistulas and if the Tysabri has helped these types of problems? I've had four procedures in the last month for multiple abscessing fistulas, and I'm fairly certain there are more. Also wondering if anyone is still steroid dependent now with Tysabri treatment. Any insight into the treatments would be very much appreciated!


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## Manzyb (Jul 6, 2012)

hi avw!  Welcome to the forum 

I am getting ready to have my 5th Tysabri infusion on Tuesday.  i have had fistula in the past, but didn't have one while starting the drug.  

They say that it can take up to the 3rd or 4th infusion for you to be able to notice any difference.  However, i've not experienced much change in my condition at all.  The infusion is super easy.  The medication takes about an hour, and then they flush it through the system with saline for another hour.  they give you tylenol as well as IV benadryl, just like if you were taking remicade.  These infusions go WAY faster than Remicade.  

i really hope that it works for you and helps you!  i am having a colonoscopy next week to see if it is doing any good for me.  Typically, if you have not responded to the medication after the 4th infusion, the drug company no longer let you take it.  At that point, because they say the risks do not outweigh the benefits.  

So I am getting a 5th infusion because the doc wants to do a scope first to see if it is actually making a difference in side, but maybe its just taking it's sweet time on letting me feel better.

Good luck to you!  If you have any more questions, i'd be happy to answer them, and if i don't know, I can ask the infusion nurse and let you know!


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## LaHarmon (Jul 6, 2012)

Update for you all: I'm currently receiving my second infusion of Tysabri, thus far I haven't had any poor reactions to the medication and I haven't seen any side effects. After the first infusion I did see a very slight difference so I'm hoping that after this second infusion I'll be able to see for sure if it's making a difference. My second blood test came back negative agian for the JCV antibody and my enrollment was very quick because my doctor is already enrolled in the Touch program. I read in the prescriber pamphlet that Tysabri is thought to work by preventing the white blood cells from entering the gut but they really aren't sure how it works. I have never really felt with fistulas or abscesses so unfortunately I can't answer that question. Manzyb I hope that your scope goes well and that the medication starts to make a noticeable difference for you. Thanks for helping to put my mind at ease regarding Tysabri and like my case manger said my doctor would not be prescribing this med if he did not think it was going to be beneficial. 
Loni


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## LaHarmon (Jul 6, 2012)

And to Avw, according to the prescribing information for Tysabri they require that you are independent of steroids after 6 months of being on Tysabri due to potential health safety issues. Hope that helps a little! 
-Loni


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## Manzyb (Jul 6, 2012)

Hi loni!  glad to hear that you finally got started on it   Hopefully this helps you out big time!   

i was so excited to start it, I was told this would be my drug!  I'm still holding out hope!  i've been under a tremendous amount of stress lately, so I'm hoping that has more to do with things than the medication not helping me.  Will let you know how the scope goes and how it's working for me!  If things are healing up in there, then hopefully I'll start feeling better before too long.

Loni-did they tell you that after the 4th infusion they have to fill out paper work and send it to the TOUCH people in order for you to continue on?


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## DFreeman (Aug 10, 2012)

Just a comment - I just learned about Tysabri this week.  I knew nothing of the drug before that.  I'm on Remicade right now, but am interested in other options if Remicade ever stops working or I build up an immunity to it.  The Mayo GI doc I saw said if I was negative for the JC virus, my chances are about 1:1000 that I would get the fatal PML.  Logically, that is a lower risk than my chances of getting a super infection on TNF blocker Remicade.  I had histoplasmosis two years ago due to Remicade and it took a long time to get over that.  I NEVER want to be that sick again.  Just wondering if anyone had any thoughts on the risks of Tysabri verses the risks of a super infection due to TNF blockers?


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## bmulherin (Sep 26, 2012)

Hi all Chronies, Well it appears I will be joining you guys in the Tysabri club also. I just got our of the hospital for a bad flare still really fatigued and unfunctional. I cannot seem to get going since this last flare. Gi doc want me to stop Cimzia and Mx. I have no other options either. I'm just really scared of the side effects of the Tysabri. I just recieved my last injection of Cimzia last Thursday and he wants me to start in 2-3 weeks still on 10 mg prendisone. I also have Crohns arthritius and am scared that it will not control it also. Have and of you seen improvement on Tysabri.:sign0085:


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## Manzyb (Sep 27, 2012)

DFreeman said:


> Just a comment - I just learned about Tysabri this week.  I knew nothing of the drug before that.  I'm on Remicade right now, but am interested in other options if Remicade ever stops working or I build up an immunity to it.  The Mayo GI doc I saw said if I was negative for the JC virus, my chances are about 1:1000 that I would get the fatal PML.  Logically, that is a lower risk than my chances of getting a super infection on TNF blocker Remicade.  I had histoplasmosis two years ago due to Remicade and it took a long time to get over that.  I NEVER want to be that sick again.  Just wondering if anyone had any thoughts on the risks of Tysabri verses the risks of a super infection due to TNF blockers?


Hi there!  I'm not sure what the exact risks comparatively.  I think it is a very very small chance of getting the PML.  I am told that even though you originally test negative for the JC virus, you should be tested every so often to make sure that you do not become positive while on Tysabri, because the more infusions you have, the higher chances of testing positive are (which is still way small by the way!  Especially for people with Crohn's taking it.  From what I understand the risk is higher for those MS patients taking it).  A nurse at my infusion site told me that, so I am not exactly certain on the validity of that.  I have been checked a 2nd time since starting, and I am still negative.

I have been on Tysabri since March and I have no had any side effects, really.  The only thing is I feel very tired and drained for the first couple of days or so after my infusion, which, was the same way when I was on Remicade.  


@bmull-I can tell you that after I had my resection in January, I started Tysabri.  I still had inflamation and ulcers in my large intestine and rectum.  Most of that has cleared up, and I have been told that I'm in "remission", however I am still going to the bathroom sometimes anywhere between 10-20+ times a day.  I can't say that I feel great on the Tysabri.  I have had my days here and there where I feel good.

I really hope it does some good for you!  But just beware that it will not make you feel great right away.  It took me at least 3 or 4 months to even notice some changes for the better.  So don't get discouraged, it will take a while!


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## Rockdawg (Nov 24, 2012)

I am going to start Tysabri soon even though I tested positive for JVC...am I nuts??

I was on Remicadee for 5 wonderful years, until I developed a condition called Optic Neuritis, which can be an early indicator for MS.  My doc thought that the Remicadee may have caused the Optic Neuritis, so he pulled that from me.  Since then, I have been in a steady decline.  I am looking forward to starting the Tysabri just to get some relief, but so scared of PML.

Our plan is to start the Tysabri, and go with that until Vedulizimab (sp?) is available, hopefully this Spring or Summer, then switch over to that.


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## Manzyb (Nov 24, 2012)

I don't think u are nuts!  Have they tried humira yet though?  Or cimzia?  If they think it is the only thing that would help I thinkk I would have to do it.  But I would make sure that they keep a really close eye on you as far as any neurological issues go.  Thy ask u a standard set of questions before each dose so thy are pretty good about it.  I hope it helps you!!!  Good luck!


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## Rockdawg (Nov 25, 2012)

The doc said that Humira and Cimzia are out because they are pretty much the same as Remicadee...He also said that, since Optic Nueritis is often a precursor to MS, Tysabri may actually do "double duty" if in fact I am slowly developing MS.

I am also considering trying LDN.


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## dmarrs06 (Dec 21, 2012)

I loved reading this blog! I have been on remicade, cimzia and then Humira as well as taking Imuran but those didnt work. I just got back this week from visiting the Mayo Clinic in MN where the Dr advised she wanted me to try Tysabri. Right now we are just waiting for the blood test results. As any medicine I'm a little nervous but I'm ready for something to work as well as being able TTC.


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## Manzyb (Dec 21, 2012)

Are you going t Ty and have a baby while on tysabri?


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## Manzyb (Dec 21, 2012)

Oops... Try to*. Stupid iPhone!


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## dmarrs06 (Dec 21, 2012)

Yes she said that it was safe to take while pregnant. I went into the Mayo Clinic appt wanting something that was going to be safe during pregnancy as well as make me feel better and that was her first option for me.


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## Manzyb (Dec 21, 2012)

I guess they all have their opinions.  My old GI told me not to and so did my new one I just got.  I'm not sure why they can't all be on the same page as each other!  I was on humira during my pregnancy and did really well with that.  I hope the tysabri works really well for you!


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## dmarrs06 (Dec 21, 2012)

Yeah thats crazy! I really hope it works as out as well. Are you still taking tysabri? How is it working out for you?


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## Manzyb (Dec 21, 2012)

I just stopped taking it.  It wasn't making me feel any better.  I took it for about 7 months.


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## dmarrs06 (Dec 21, 2012)

Oh I'm sorry to hear that!  Do you have any plans for a different medicine to try?


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## Manzyb (Dec 21, 2012)

Not just yet.  I have tried everything out there, so we are going to think about trying a trial medication.  I'm having some stupid problems.  They think I possibly have somehing else going on too, something with either my pancreas or liver.  We are trying to figure that out first before we talk about doing a trial drug.


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## Speper (Jan 21, 2013)

I'm new to this forum and so excited because I was looking for something specific to Tysabri.  I have had fibrosing Crohn's since I was 19, almost 30 years now, and am anxious to save the last 6 feet of small intestine I have.  As most on this site, I have tried every drug out and had a myriad of reactions.  For me, as I hope everyone considering Tysabri because of the potential deadly effects, Tysabri is being used only to hold me over until the next new drug is approved (one that does not cross the blood-brain barrier).

I just had my 3rd Tysabri infusion, and aside from decreased immune system response to respiratory illnesses going around I've done quite well with dramatically fewer headaches and nausea that I had experienced on other immune suppressants.  It seems to be giving some relief to my Crohn's.  That said, I am so very concerned for Rockdawg (sp?) who noted that he is considering Tysabri even though he has the PML virus.  It took 5 months of research, paperwork and training by my GI's office to get me on Tysabri and I was told that I would not be allowed the drug if I had a positive PML test.

Although you can contract PML at any time, beginning treatment for Crohn's with a positive PML seems to me to be an absolute last resort unless there is also MS with lesions on the brain (Tysabri is said to be a great drug for this particular symptom of MS).  There is a study going on right now that is basically Tysabri without the ability to cross the blood-brain barrier.  I didn't qualify for the study, but I am hoping that Tysabri will keep me going until 
the next drug is out.  Rockdawg, I am so sorry for all you are going through and understand your frustrations with not just one, but two difficult diseases.  Good luck.


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## Rockdawg (Jan 22, 2013)

Well, it is official...I have MS in addition to Crohns. The good news is, I am feeling great! Two infusions of Tysabri and I can't believe how much better I feel. I won't stay on it more than a year because of the risk, but for right now I am just enjoying feeling great


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## Manzyb (Jan 22, 2013)

rockdawg, sorry to hear that you have MS as well.  I am really happy for you that the Tysabri is doing well for you!  

I kept waiting to wake up one day and feel like a new person on it, and unfortunately that never came for me.  I hope you continue to do well!!


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## Rockdawg (Jan 24, 2013)

Thanks Manzyb  Since I am JV positive, I don't think I will be staying on it for over a year.  Soooooooo, hopefully there will be something new in the next year or so.  My GI doc told me to be on the lookout for Vedulizimab (sp?).  He said it should act a bit like Tysabri but without the risks.  I am also trying to research some stem cell proceedures, have you ever thought about that?


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## Manzyb (Jan 24, 2013)

You know, I have, but now that I have my daughter im just not sure that a stem cell transplant is the way for me to go right now. My husband is in the marines and we are away from family, I just don't know how I would work it out anytime soon!  It would be a good option for me if worse came to worse.  

I have heard of the vedolizumab.  I think there is a thread on here somewhere that people have been in the trials.


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## Crohnie2003 (May 30, 2013)

Hi Rockdawg..
I like you have tested positive for the JC Virus, but my GI said there have not been any cases of PML for people positive with JC Virus that have taken it for less than 1 year. I am still a bit freaked out as I seem to get the side effects to most thinks in the low percentile. I have failed or have become allergic/intolerant to methotrexate, Thalidomide, 6MP, Cimzia, Humira, Remicade. I was released from a study for Stelara on 4/17/13 because it didn't work either. My options right now are: Cyclosporine (2 week hospital stay for injections, then pill form for up to 1 year), Tysabri or surgery again while waiting on a new option. You are the first person I have come in contact with who is JC+ and giving it a try! I was looking for an  new info you might have regarding your treatment. 
Thanks a bunch


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## Rockdawg (Jun 1, 2013)

Hey Chronie...All I can say about the Tysabri right now is that it is working pretty well.  However, Remicadee also worked great for me for 5 years...the only reason I stopped was because of the MS it may have given me (and thank you, Remicadee, for that).  I will say that I feel that it has not been QUITE as effective lately, but I have also been under crazy amounts of stress.  Put it this way...before starting the Tysabri, during Sept - Dec, I missed about 10 days of work, and had another 10-15 where I probably should have stayed home, but forced myself to go in anyway.  Fevers, "d", pain, etc almost daily.  Since I started Tysabri, I have missed only 1 day, and that was so I could stay home and play with my daughter, not because I was sick.  I have had no other side effects from the Tysabri, but remember we are all different, and what works for some may not work for others.  I am really waiting for a drug called Vedulizumab, which is in phase III testing right now.  My gastro said it is like Tysabri, except SAFE.

I am also starting to try some dietary changes as well...


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## Crohnie2003 (Jun 3, 2013)

hi Rockdawg, 
I really appreciate your reply  I am still waiting on the Cyclosporine approval or denial (most likely denial as I have an HMO). I will meet with the Dr.'s after that to discuss further. I am happy it is giving you some relief and less days of missed work. You are the only other person positive for JC that I have found on here and it gives me great hope  I cannot thank you enough for that! Thanks a bunch. Please keep me updated and I will do the same. 
Take care of yourself, 
Teresa


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## jls (Jun 3, 2013)

Hello All! 
I'm sitting in my local infusion center just finishing up my first infusion of Tysabri. I too have Crohns and this is a last resort. I'm scared to death to tell the nurse that I'm dizzy, nauseas and my arm at the injection site is numb. I so bad want this to work because I don't want to have surgery. Every since I was diagnosed 6 years ago, this disease has worn me out. Between the extended stays in the hospital, the countless medicine, the emotional and physical strain on my life and the countless hospital bills, I'm so over it! I feel selfish when I complain because it could be a lot worse but I just really yearn for a suffer free day.


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## Crohnie2003 (Jun 3, 2013)

Hi jls, 
I really think you should tell the nurse about your side effects. You do not want to leave there and have any issues at home. I am sorry you are experiencing these things on your first infusion. It is only my opinion, but I would say something. Good luck!


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## asheroonie (Jun 4, 2013)

Yessss, a Tysabri post! I made one a few months ago but didn't get any replies to it  I realize this was originally posted last year, so I'd be interested in knowing how you guys are doing/how many infusions you're up to/etc.

I had a really bad flare last summer, and started Tysabri in October (I'm JCV negative). A lot of you were saying it took a while to work, or never really worked, but for me it was like a miracle drug. Literally 4 days after my first infusion, I was back to feeling normal and healthy, and had my first solid bowel movement in 5 months, etc. In the past, I had been on Remicade for 10+ years (it stopped working), and Humira for 2 (didn't work well either). So this past flare, when it came down to Cimzia or Tysabri, my doc really pushed for the Tysabri because apparently Cimzia is too similar to Remicade/Humira, and she thought I'd have better success with Tysabri. I'm going for my 9th infusion in two weeks and I feel better than ever! I don't even have to take any other meds. Of course I am always worried about the PML risk. But so far, I haven't had any side effects, except for feeling really tried during/after my infusions.


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## Crohnie2003 (Jun 4, 2013)

Asheroonie...I am so happy you are having some relief with this drug. Are they continuing to test you for the JCV while on the medicine? I am so happy they keep coming up with new drugs to help with Crohn's. I hope you continue to have great luck with this med and glad you are on here to share you stories with us  
Thank you!


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## Speper (Jun 30, 2013)

I realize this is not a reply to the current post, but I have not been able to figure out how to start a new thread and I really need some questions answered......

I have Crohns 25+ years and have burned through all of the available medications.  I have 6 feet of small intestine left, but last summer a camera capsule showed I had lesions throughout ( diagnosis "fibrostenosing" Crohns).  I was able to get on Tysabri, and the lesions healed up - yeah - but a number of my other Crohns related issues remain and I'm on low dose prednisone.  It appears that the Tysabri does not work so great on the inflammation/scarring that causes my blockages.  However, I am thankful that it's keeping me from losing my remaining small bowel and has greatly reduced my pain.

My problem is that I have been on it for 9 months now and am having increasingly suicidal thoughts.  As anyone with a chronic illness knows, depression is part of the story, but I've never felt like this before even on mega doses of steroids.  My marriage is stressful right now, but over 23 years, that kind of thing has come and gone and I've never felt like this before.  Over the last 5 months I have tried several anti-depressants with no effect and I have increasingly overwhelming urges.  The only thing that stops me is forcing myself to think of what that would be like for my 19 year old son.  I've scoured the web and found some studies related to depression/suicidal thoughts and Tysabri, but nothing definitive.  I will bring it up at my next infusion in a week, but I was just wondering if anyone has had this possible side effect, or knows of someone who has?  And, if so, what meds might help.  My docs are great, but I'm one of a handful of Crohn's patients in this area on Tysabri and most of them had never even heard of it before.  Thanks for your help.


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## Crohnie2003 (Jul 1, 2013)

Hi Speper, 
My doctors are thinking of having me try the medication, I am not actually on it so I cannot help, but I do want to wish you well and hope someone on Tysabri may have more info for you. Please take care and keep us updated to your situation.


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## lgpcarter (Jul 2, 2013)

Hi Speper, 

I'm not on Tysabri either, so cannot comment on depression and suicidal thoughts as a side effect, but hope someone who has been on it can. I just wanted to send you my support and encourage you to talk to someone about what you're experiencing. I know there is a mental health crisis line in my city that is open 24 hours a day. 

L


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## Speper (Jul 3, 2013)

Thank you so much for everyone's kind words!  I'm in touch with docs to see if they know of something to help.  It's worrisome to ask though, because I'm afraid the answer is to get off of it, and it is helping with lesions.  Darn side effects!


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## Speper (Jul 7, 2013)

*Tysabri + Prednisone = Depression Revelation*

Hi All, 

It has occurred to me that, although I have been more depressed in the last 4 months on Tysabri (out of 9 so far) the stronger depression has come on since I've been on low dose Prednisone beginning in May.  While Tysabri magically made the lesions in the remaining 6 feet of my small intestine disappear, it has not worked so well on the one area of stricture and inflammation that caused several partial obstructions in April.

I don't know if anyone else has been on Tysabri and Prednisone at the same time, but if so, I'd love to know how it went.  

FYI, in the past 28 years I have burned through, or had horrendous allergic reactions to every medication available.  I have the genetic marker for Crohn's and am in a subset of Crohn's patients who do not show an elevated CRP, which keeps me out of clinical trials.  Four surgeries have left me with less than 6 feet of small bowel and Tysabri is my only option to keep from losing it all and going TPN.  My GI is fabulous, but not one of my other docs has ever even heard of Tysabri, so they don't know how to deal with my side effects, not that they're not trying.  Since everyone is used to me using my sense of humor and positive attitude to deal with everything over these past 28 years, I think my current state is blowing their minds.  And while I respect my docs and the years of training and passion they've put into their careers, I believe that you can't put a $$ value on the wisdom of someone who's been through it, so I appreciate the info.


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## vitapro (Jul 8, 2013)

I had a great experience the first time i took Tysabri for a year symptom wise.  I stopped taking it b/c I felt so good for two months.  Unfortunately I started to see my symptoms coming back so I just restarted it and I'm miserable with diarrheaha.  I've only had one infusion since restarting and I can't wait for it to start working again so I can get my life back.  Anyone experiencing memory loss?  I've noticed I've started having memory problems.  I don't know anyone else taking tysabri so I would love some feed back.  I've taken every drug possible with no real strong results.  Tysabri was a last resort.


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## Speper (Jul 11, 2013)

Hi Vitapro,

 I only know what my Tysabri infusion nurse has told me, which comes with the disclaimer that I am their only Crohn's patient, the rest are MS.  But I thought I caught a stomach bug and missed my regularly scheduled infusion (which had been pushed out 3 days anyway because of the holiday), but continued to go downhill after the normal run of a 24 hour virus.  I was encouraged to come in for the infusion ASAP because, in their experience -with MS patients- running late or missing infusions can cause an exacerbation of symptoms.  

When I started Tysabri I don't remember any reference to tapering off, or of problems coming off of it, but it's my only option right now so I just didn't think of that.  Frankly, I don't think there have been enough Crohn's patients on Tysabri long enough for doctors to have a really solid understanding of all the ins and outs of this drug.  Nearly 24 hours after my last infusion and I'm still not feeling better, but it was worth a shot, and if it keeps me from feeling even worse, then that's a bonus too.  Best of luck!


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## Rockdawg (Jul 12, 2013)

I am not sure if this is true with Crohn's, but I read some disturbing news about Tysabri as it relates to MS (I am fortunate enough to have both). Doctors are noticing, in MS, something they are calling a Tysabri rebound effect. Essentially, people go on Tysabri, and for the most part, do well. Then, when they go off of Tysabri, the MS comes roaring back with a vengeance.

As of now, I am doing great on the Tysabri, both with the Crohn's and MS, but I am JC positive, so I plan on going off of it soon, and this rebound effect is really worrying me.

I MIGHT give the SCD a try...what the heck, why not right?


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## Crohnie2003 (Jul 12, 2013)

Hi Rockdawg, 
Thanks for the update! I hope you do not experience any issues after finishing up w/ Tysabri. I really appreciate your updates. Good luck with SCD if you do decide to try it. To me it looks very time consuming. I will be checking into the hospital next Friday for 14 days for IV treatments of Cyclosporine. Like you I have exhausted all of my resources and I am positive for the JC Virus. My choices were Cyclosporine, Tysabri and surgery. If this doesnt work out, maybe I will give Tysabri a try. To be honest, you are the only person I have see on here positive w/ JC that has tried it. You give me hope! Thanks! take care of yourself.


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## Rockdawg (Jul 12, 2013)

Crohnie, what is Cyclo...that thingy you ar going to take?


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## Crohnie2003 (Jul 12, 2013)

Rockdawg, 
I believe it is still considered slightly experimental for CD, it is more for UC. It is what they give transplant patients to lower their immune system so they do not reject the organ. Basically, we are trying to buy time for a new med to come out and prolong surgery. There are a couple threads on here about it, but not much info. If you scroll up to the search area at the top of page, type in Cyclosporine and see if you are able to check out anyone's comments on it. I will definitely keep you updated on my progress as I appreciate everyone's input on here! Especially yours since we have JC Virus in common. I was not given any paperwork on this. What I have read has been internet searches. See the below links that I have read. 
Thanks, 

http://www.ncbi.nlm.nih.gov/pubmed/15846602

http://www.webmd.com/ibd-crohns-disease/cyclosporine-for-inflammatory-bowel-disease


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## Crohnie2003 (Jul 12, 2013)

If I could figure out how to post the links to the Cyclosporine threads, I would ...sorry!


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## Speper (Jul 14, 2013)

Rockdawg and Crohnie2003,  

I'm so impressed with your courage, but so very worried for you being on Tysabri while PML positive.  I'm being tested every 3 months now because my GI had his first patient turn up with a positive result and is now more concerned.  It always seems like it can't happen until it does.  But have you tried to get into the study for the version of Tysabri that doesn't cross the blood brain barrier (which is probably useless to you Rockdawg, since I'm only guessing that's the reason Tysabri is an option for you regardless of the positive PML)?  I tried really hard to get into that program, but am within the 30% of Crohn's who don't present with an elevated CRP, which is how the studies measure results, so it looks like all studies are out of reach for me right now.

In the meantime, I do wonder what the long term repercussions might be ... is the access to the brain the reason for the increased depression and suicidal ideation I've experienced and read about?  And perhaps the memory problems that another member mentioned?  I definitely feel like my memory is going, but there are so many other issues that could be related to memory I wouldn't even know where to start.  Hopefully, it won't be too long before more therapies are offered, in the meantime we take what we can get and hope for the best.


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## Rockdawg (Jul 15, 2013)

I am going off of it in December. Not sure exactly what I will do, but I refuse to be on this stuff for over a year. They won't let me into the Vedolizumab studies, because of my MS, but Takeda, the company that makes it, submitted paperwork for FDA approval a couple of weeks ago, so I have my fings crossed!


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## Crohnie2003 (Jul 15, 2013)

I hope it gets approved in time for you to give it a go! Good luck Rockdawg!


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## Tiger09 (Jul 17, 2013)

Dude my doc said I have to read a giant binder and watch videos and train for this med.  is it an infusion or the SATS? I had to sit after my appt and contemplate my life and all I could think
was that I was thirsty and want a hot tub.


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## Tiger09 (Jul 25, 2013)

Just talked to the woman- I'm not sure I want to do this medicine.


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## Manzyb (Jul 26, 2013)

Tiger09-its a hard decision to make.  All the information they give you can sound really scary.  Have you been tested for the JC antivirus?  

I had no side effects at all from the Tysabri.  I took it for about 8 months.  I stopped taking it because it made no change in my Crohn's, and at that point the potential side effects didn't outweigh the change in Crohn's.


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## Tiger09 (Jul 26, 2013)

I got tested on wed.


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## Speper (Jul 26, 2013)

To Tiger09, 

I absolutely understand where you're coming from - it's a scary step to take, especially after completing the extensive paperwork.  And it's expensive too.  On the positive side though, I've had surprisingly few side effects compared to the other medication I've been on - which is ALL of them.  Everyone has unique sensitivities, so there's no guarantee, but the infusion nurses who give me my Tysabri have told me that it is mostly very well tolerated in relation to headaches, fatigue, etc.  

The risk of contracting and activating PML is very real and very scary.  I am now being tested every 3 months just to be safe.  In addition, my GI visit last week turned up some information I was not aware of - he went to a website for physicians called uptodate.com that provides current clinical support information for prescribers.  On the site was a warning that Crohn's patients who have or have had depression should be monitored closely.  First of all - isn't that almost everyone with a chronic illness?  Anyway, I had been diagnosed with mild depression years ago but it was not discussed, and I don't remember anything in the paperwork, prior to my beginning Tysabri.  I have been on it for nearly one year and for the past 4-5 months have been experiencing crushing depression and suicidal thoughts.  It has been very difficult for me to admit it to anyone, but because I have a child to think of I forced myself to open up about it.  However, it turns out that this admission to my doctor requires that an "incident report" be submitted - apparently a lot more paperwork.  I don't know where this will lead, whether I will be removed from the Tysabri program, or if it is just gathering information.  I am beginning treatment for the depression, and continuing Tysabri for now as well as having tests performed to help determine if I am benefitting enough to warrant the risks.

In conclusion, I would say that knowledge is power, and that while it can be overwhelming, it is necessary to fully understand the risks.  I accepted the risks because I've got less than 6 feet of small intestine left, and it was Tysabri or nothing.  I do wish that I had more fully understood the risk of depression and could have been proactive (as I have been with testing for PML) - it would have made a huge difference in my quality of life these past months.  I have heard that the uptodate.com website is the best, most current information for physicians, so ask that your doctor share this information with you before you go any further, just so that you have peace of mind that you have full disclosure to make the best decision for you.   Good Luck!


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## iots028 (Aug 2, 2013)

I had a problem with depression just after stopping Tysabri. I have had problems with depression in the past, but nothing like this. I developed a sensitivity to Tysabri which is why I stopped. The rash I had from Tysabri went away about the same time the depression did. It's kind of hard to say which caused the problem, but i was crying at the drop of a hat and then the depression went away as quickly as it started. I'm assuming that the rash went away at about the time the tysabri was gone from my system.


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## Speper (Aug 2, 2013)

Thanks so much for sharing your experience coming off of Tysabri.  It's just been recent that I've heard there can be withdrawal symptoms, but nothing specific.  I imagine it's different for everyone, but you're description of your depression is very similar to what I've been going through, which is very unusual for me.  One of the reasons that I've failed so many medications is that my acclimates to them, for lack of a better word, and they become useless to me.  Makes me wonder if that's what's happening with Tysabri.  Food for thought - thanks for sharing.


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## Tiger09 (Aug 17, 2013)

Thanks for your kind words guys.  And your info.  Heard from the infusion Ctr I'm going to- finally lol.  Turns out I have to see a dr there to get established.  Then we can get the ball rolling with the tysabri.  I'm just ready to start feeling better.  I had my methotrexate injection today and it made me so tired.  I was like ugh.  I slept for a while and now it's almost 5 and I'm awake lol.  So Monday the infusion Ctr should be calling me to set this up and I guess lets roll.  Anythings better than constant flares.  I'm also going down on my prednisone tomorrow so maybe I'll feel better.  I did make sure to get a little sunshine because that always lifts my mood.  I have to say that the tysabri welcome kit ruled lol.


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## njgirlinnola (Aug 24, 2013)

Greetings, everyone,

I was diagnosed with MS a few months ago and my neurologist is considering Tysabri as one of my options.  I haven't gotten my JC virus test results back, and if it's positive, Tysabri's off the table.  What worries me is that my CD is pretty much in remission and it seems it is too aggressive a drug for my CD.  I know most of you have very severe CD but I'd appreciate any advice you can give about the drug.  Thanks!


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## Rockdawg (Aug 25, 2013)

If you are doing well with Crohn's, you can ask your Neuro about Copaxone. It is very "tummy friendly".


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## Jenlarubia (Sep 27, 2013)

Hi! I have had Crohn's for 18 years and I am 34. I am considering starting Tysabri. I have tried Remicade, Cimzia, Humira, Methotrexate, 6MP, Pentasa, Prednisone, etc etc etc!! I have had 3 resections, and 3 fistulas. Just wanted to say Hi and see if anyone had any input for me or any questions a long-timer may be able to help YOU with! Please ask me or give me some advice too. I have never joined any forums and am eager to chat about it. Thanks!!


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## Speper (Sep 28, 2013)

Hi Jenlarubia, It sounds as if we've been down very similar routes with our Crohn's.  I have had Crohn's for 30 years now (since I was 19), 4 bowel resections - no fistulas - and have been on every medication as it comes available.  For some of us, one dr. described it as being in a subset within a subset of people with Crohn's for whom the biologics either don't work or don't work for long.

It takes awhile to get into the Touch program for Tysabri, and there is a lot to consider.  I've been on it almost exactly one year, and recently had a camera capsule endoscopy to determine if the Tysabri has had any effect on the lesions that were throughout my remaining 6 ft of small intestine, and I found out last week that things are looking much better!  I was both elated and bummed, because I want the healing but dread the risk of PML and just plain get fatigued from it.  But the side effects aren't as bad as some of the other drugs.  Best of luck!


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## Jenlarubia (Sep 28, 2013)

Wow. You are right. We do have similar histories. Kind of scary. Yes, I am feeling about the same as you as far as the continued treatment with Tysabri. I was thinking, why bother to start something, when after a year or 2, I am going to be too afraid to continue it? I know there is another treatment on the way, similar to Tysabri, that supposedly doesn't cross the blood-brain barrier, and it should be coming out next year(?) so I may opt to wait for that instead. I am not too sure what else I may be able to get by with in the meantime but I need to be sure I will be around for my kids so I don't want uneccessary risks. Hope you are doing ok, nice talking to you!


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## Speper (Sep 28, 2013)

I was right where you are - my son is now 19 and in his 2nd year of college, but when he was 8 years old, after my 3rd surgery, I was warned that I needed to go full boar on any drug I could find or I might not be around to see him graduate from high school.  (My issue was short bowel syndrome and that tpn is/was hard on the liver).  

It absolutely panicked me and gave me anxiety attacks, and of course I took everything they threw at me no matter how it made me feel.  But, and it's a huge but, after my 4th surgery, that surgeon apologized to me for being wrong.  Everyone's body is different, and mine adjusted to short bowel syndrome just fine.  In addition, tpn (something, something nutrition  has been greatly improved over the last 10 years and patients are having much more success with it.  I still don't want to have to be there, but I'm not as worried any more.

The drug you mentioned is out for trial right now.  I was not accepted into the program because I don't have any changes in my CRP counts with inflammation, and that's the key to measuring the success of the drug for the study.  (I've heard the stats are that 30% of Crohn's patients with small intestinal Crohn's don't present with an elevated CRP).  I do have some Crohn's in my large intestine, which is also a requirement.  So, since I am not PML positive, I decided to go the Tysabri route.  My GI has me test every 3 months for PML rather than every 6 months for added reassurance.  I am determined to be here for my grandchildren!  I do have say, that other than PML, and that's huge, Tysabri is the easiest drug I've been on as per side effects.  With small children I can see that being very beneficial.  I've also done lots of research on PML, I'm sure you don't have a whole lot of time to sit and research at the computer, but look into how people contract the PML virus to begin with - it's pretty interesting.

If your insurance will cover it, you might consider going to the Mayo Clinic in Rochester.  My doctor is no longer there (Dr. William Sanborn - he is now at the University of California in San Diego - if you could ever get in to see him, do it!), but when I didn't qualify for the Humira trials, way back when, he called my insurance company and got me on it before it even hit the market.  Then they tracked me with their trials and I really believe that it was really beneficial.  You might be able to get into a trial that you are more comfortable with that way.  

Best of luck!


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