New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

FrustratedinVA
New Member


Date Joined Nov 2011
Total Posts : 13
   Posted 1/18/2012 7:59 PM (GMT -7)   
I'm down to a few choices for medications with out taking surgery into consideration. I came across this medication and spoke with my doctor about it. I've done some research on it, but I'm still not sure about taking the risk. I understand the chance of getting PML are slim to none, but there is no cure if I do get it. Is anyone currently on it and can share their experience and/or anyone that has been on it and share their experience?
 
Thanks.

dt19&99
Regular Member


Date Joined Apr 2009
Total Posts : 174
   Posted 1/18/2012 8:34 PM (GMT -7)   
I haven't taken that medication but my approach to this disease has been to push back the necessity for surgery as long as possible... Every med carries a risk, and while none of them are pleasant some are worse then others...

Surgery is permanent. I'm gonna try every option I have before they cut me. That's just my opinion. Others have had great success with optional surgery; yet others didn't get the option and needed emergency surgery...

bella3250
Regular Member


Date Joined Aug 2008
Total Posts : 351
   Posted 1/18/2012 9:12 PM (GMT -7)   
Hi frustratedinva.  I know exactly how you feel.  I've been on every crohn's drug there is.  Nothing seems to help and if it does it's very short lived.  I am currently on Remicade (second time)  b/c i've run out of options.  The only drug left is tysabri and my doc is trying to persuade me to try it.  He says there is only one reported case of pml in a crohn's patient and that person also has MS.  It's a very frightening drug.  I have had surgery done.  It was in "08.  I had a foot of my small intestine removed including the terminal ileum.  I was in remission for 7 months before the disease reappeared.  Lucky me.  So here I am 4 years later with active disease and still no remission.  Remicade does help ever so slightly.  Have to have infusions every 6 weeks when in reality I flare at 4 weeks.  I'm in the same boat.  Suffer or try the tysabri and pray to God that I don't get PML. 

FrustratedinVA
New Member


Date Joined Nov 2011
Total Posts : 13
   Posted 1/19/2012 7:45 AM (GMT -7)   
Hi dt19&99 -

That has been my thought process for the past two years, but the doctors are putting me back on prednisone thinking a lower dosage will help me with the side effects. I've very sensitive to steroids regardless of the MGs. They are starting me off at 30MG, rather than the 40MG I had last time and to be honest I'm scared to take it. It made me so sick and I understand it's supposed to be a "quick fix" because it does help with my Crohns but it's such a nasty drug. Then to top it off with the Tysabri and the risks I feel like I'm better off doing the surgery. I understand there are risks with all drugs, but Remicade/Humira/Cimzira, etc. is the small risk for cancer and that has a possibitlity of a cure and I still have my mind fully functioning. Tysabri's small chance of causing something that's irreversible and turn me into a vegetable scares me.

Hi bella3250 -

Remicade was a wonder drug for me, but I had the same issues you are having. It got me through about 5 weeks and then I would go down hill so fast that last week I would barely have the strength to walk to the infusion center. I had a really bad reaction to it on my last infusion, but part of me wonders if that was from the mild concussion I had the week prior from falling. I did extensive research on the drug last night and all of the reports and information provided is primarily when it was re-issued and approved for Crohn's patients. There are 31 known cases of PML, but that's as of 2010. I haven't been able to find any current information on the medication and that good be "no news is good news" or they are intentionally not publishing it publicly.

I just feel a little overwhelmed and when you are not feeling good it makes it difficult to be your own advocate in order to make the best educated decision for yourself.
Severe Crohns Colitis & Anxiety/Panic disorder began in July 2009
Diagnosed in February 2010
Currently being treated with Entocort and Humira
Have yet to go into remission

bella3250
Regular Member


Date Joined Aug 2008
Total Posts : 351
   Posted 1/19/2012 8:54 AM (GMT -7)   
I haven't researched the incidences of PML either even though I know I probably should but as far as I'm concerned I feel it's a not unless I'm dying option lol.  My doc as of two weeks ago told me that I probably need to consider some other options.  Not only did we discuss Tysabri but he also said I should try adding 6mp with the Remicade.  Uggg.  Those two together are not good either.  Always steroids are on the table but I react so badly to them as I'm sure others due as well.  I can't sleep, I gain weight, and my mood swings are horrible.  I friggin hate to be around myself when I'm on them.  I LOATHE prednisone and to be perfectly honest I have to be on such a high dose to even see some improvement like 40 or 50 mg.  Been as high as 60.  (That didn't turn out well).  I don't know what the answer is.  I sure hope someone out there figures out a cure b/c I don't know how much more of this I can take.  I hope you feel better :-)

Alistair
Regular Member


Date Joined Nov 2011
Total Posts : 43
   Posted 1/19/2012 12:38 PM (GMT -7)   
dt19&99 said...
I haven't taken that medication but my approach to this disease has been to push back the necessity for surgery as long as possible... Every med carries a risk, and while none of them are pleasant some are worse then others...

Surgery is permanent. I'm gonna try every option I have before they cut me. That's just my opinion. Others have had great success with optional surgery; yet others didn't get the option and needed emergency surgery...

10 years after you were diagnosed with Crohn's disease, it's a good idea to have prophylactic surgery to avoid small bowel cancer. Especially if you're a male or have taken azathioprine/6-mercaptopurine.

dietcoke
Regular Member


Date Joined Jul 2008
Total Posts : 186
   Posted 2/4/2012 8:06 AM (GMT -7)   
FrustratedinVa: there is now a test to see if you cam get PML. I am currently waiting for my test results to come back. You should ask your doctor about it.
41 years old female
Salmonella - 1996
Crohn's Colitis in entire colon - Diagnosed in 2000
Hypersensitive/Allergic to Asacol/Pentasa/Budonside/6MP/Humira/Remicade/Cycloporine, foams, and much more
Also tried SCD, didn't work
Past meds that worked: Cipro, Prednisone

Daily: Folic Acid, Vitamin D3, Multi-Vitamin, Prednisone 40mg, homemade yogurt

mirowpl
Regular Member


Date Joined Nov 2009
Total Posts : 335
   Posted 2/4/2012 5:54 PM (GMT -7)   
My GI says he has never referred anyone to try this drug. He says he just does not feel the risks out weigh the risks. he feels the risks are much greater with this one and that is why the drug is much more controlled in the USA. your Dr cannot just prescribe it. You go to specific places to get it from what I have been told. For me in NC that would mean a 3 1/2 drive to the only place in NC at the UNC Chapel Hill university hospital. Keep that in mind when making you decision.

Chris B.
Regular Member


Date Joined May 2005
Total Posts : 84
   Posted 2/4/2012 8:14 PM (GMT -7)   
Alistair said...
dt19&99 said...
I haven't taken that medication but my approach to this disease has been to push back the necessity for surgery as long as possible... Every med carries a risk, and while none of them are pleasant some are worse then others...

Surgery is permanent. I'm gonna try every option I have before they cut me. That's just my opinion. Others have had great success with optional surgery; yet others didn't get the option and needed emergency surgery...

10 years after you were diagnosed with Crohn's disease, it's a good idea to have prophylactic surgery to avoid small bowel cancer. Especially if you're a male or have taken azathioprine/6-mercaptopurine.
Please elaborate. What is prophylactic surgery and how does it prevent small bowel cancer? Thanks.

Mac_Gyver
Regular Member


Date Joined Aug 2007
Total Posts : 350
   Posted 2/6/2012 4:14 PM (GMT -7)   
I was on tysabri for about two years, and had to stop when my previous employer changed health insurance providers and my new plan would not cover it. I was diagnosed with moderate to severe crohns and tried a multitude of medication, none of which did a thing. My GI basically said it was surgery or tysabri. I choose Tysabri. I was put on steroids prior to going on tysabri with the understanding I had to be completely off of them within three months. Within a month of my first infusion I was 99% back to what I considered normal lol. I was on tysabri for 2 years and while on it I was able to eat anything and had no flares whatsoever. After stopping I was still mostly symptom free until last year, now I have a new job and new insurance which will cover it. I'm trying to get back on it.

It is a difficult choice to make and each person will have their own outcome but I'm my case I wanted to make surgery my absolute last choice. Hope this helps somewhat.

beckam
New Member


Date Joined Feb 2012
Total Posts : 12
   Posted 2/27/2012 6:46 PM (GMT -7)   
Hello,

I am new here, but was looking Tysabri up and found this thread.

I've had Crohn's for 12 years, have tried everything. I even just had surgery about 7 weeks ago, because I failed all meds and had strictures and an obstruction in my small bowel. I still have active crohn's disease in my colon and rectum. Tysabri is my only option now.

They now have a blood test you can take to see if you could possibly get the PML virus or not. I was tested negative, and I am waiting for insurance to approve the Tysabri.

My doctor says it is a miracle drug. I've totally heard that before... but keeping my fingers crossed that I'll finally go into remission after 12 years.

I understand that people are worried about the possible risks with this drug, BUT if it's your only option and you can be tested to see if you could be susceptible to the PML, then why not go for it?

I remember when I was 15 and just started Remicaid. At the time that was a seriously (potentially) scary drug and I came out just fine from that.

I hope all of you can find health and remission!

Linn
Regular Member


Date Joined Jul 2008
Total Posts : 117
   Posted 2/27/2012 10:39 PM (GMT -7)   
If you have a chance at Tysabri--take it.

After three fruitful years, Tysabri began to fail for me in Feb 2011, following my bowel resection. However, it gave me three amazing years of health that were the best years of my life. I was so sad when it stopped working but you'll love those steroid-free years if it works for you. I'm back on the pred, full-strength, along with MTX and Cimzia, and still flaring like theres no tomorrow. I look back at pictures of myself and wonder how on earth i was so healthy--to go running every single day, without a big fat face, eating absolutely everything in sight. it was such a trip. give the tysabri a try, it was the best decision i ever made and i'm just sorry it didn't work for me longer.

now i've reached the end of the biologic line (remicade, humira, tysabri, cimzia) and i have another stricture--i'm seriously not sure what i'll do except stay on the prednisone until Prochymal gets approved, and we've been talking about that for like five years now. Sigh.

beckam
New Member


Date Joined Feb 2012
Total Posts : 12
   Posted 2/28/2012 7:26 AM (GMT -7)   
i am definitely going for the Tysabri! It's just taking forever to get it approved by the insurance and all of that. We're hoping this week it will finally be settled and I can get my appointment set up ffor my first infusion.

I too have tried all biologics. Tysabri is my last and only hope for now! Remicade worked for a while, as did Humira, Cimzia did nothing at all. I'm pretty hopeful about this drug.

Did you have any side effects? I'm not worried about the PML thing. I'm just curious if it made you tired/sickish feeling or anything like that. Remicade made me exhausted for a day or two after infusions, and humira made me a little fluish feeling for a day.



I hadn't heard of Prochymal before. Hopefully you'll be able to get that and get better. Do you have a hard time keeping stuff down? when I had my strictures, I vomited all of the time. Starting to show signs of it again with only being able to eat a little bit every day and extreme nausea. It's been 7 weeks since my surgery and haven't been on any Crohn's meds since then because we've been trying to get the Tysabri approved!!

Mac_Gyver
Regular Member


Date Joined Aug 2007
Total Posts : 350
   Posted 2/28/2012 10:33 AM (GMT -7)   
I was on Tysabri for 2 years and had to stop for insurance reasons. I have a appointment today for a MRI to see the process of my crohns and then a followup with my GI tomorrow where she is going to let me know if I can go back on it. She said she wasnt sure if I could go on it after being off it but I made some calls to Elan and Tysabri a few days back and everyone I spoke to told me it should be no issue as long as she willing to perscribe it. So im going in tomorrow with that knowledge and Im hopeful i'll be starting back up.

beckam
New Member


Date Joined Feb 2012
Total Posts : 12
   Posted 2/28/2012 9:00 PM (GMT -7)   
Good for you! Let me know how you do. Did you have any side effects from it? nausea, fatigue or anything like that?

Linn
Regular Member


Date Joined Jul 2008
Total Posts : 117
   Posted 2/29/2012 8:40 AM (GMT -7)   
Hey manzyb, i actually didn't have any side effects on the tysabri. I know I was technically immunocompromied, but I wasn't taking any other medications, so my immune system did have some fight left in it. I came down with swine flu while living in the UK and had a few sore throats but that was about it. I'm in medical school so I'm exposed to germs and craziness all the time, and I didn't have any lasting issues.

Now i take cimzia, prednisone, MTX, pentasa cipro and flagyl. I have lost so much hair, am constantly nauseated, have lost so much wieght (im 5-3 and in the double digits) and I'm still having d all day and night. Plus I have a stricture, my third. I developed my first two while on the tysabri unfortunately and I was resected December 2010. I have a scope coming up to determine the site of the stricture --- hopefully its at the anastomoses and I can just have it dilated and injected with some cortisone :(

Prochymal is an infused stem cell therapy that is still trapped in phase iii testing, and it sounds like it really helps a lot of people. There are people on this forum who have responded positively. I've been holding out for years for this stuff.
27-year old crohn-y in Med School (3rd Year after I take the boards!)

Currently take:
MTX 25mg/wk IM
Cimzia 400mg/month SC
Cipro 500 mg bid
Flagyl 500 mg bid
Prednisone 15 mg/taper
Culturelle bid
Pentasa 1 g tid
feraheme

Gummy Vites (helps you remember to take your vitamins when they're candy :) )

Mac_Gyver
Regular Member


Date Joined Aug 2007
Total Posts : 350
   Posted 2/29/2012 1:59 PM (GMT -7)   
    Well, I did all the preliminary paper work today for Tysabri and had the JVC antibodie test ordered. Doctor has no problem putting me back on it but said she is going to take special percaution on my frirst infusion to make sure I have no reaction since I stoped previoulsy. Now all I have to do is wait for the test to come back and the inurance approval to finalize.
    I never did have any reaction from it while I was on it. Doctor said I was in complete remission and I was able to go about me life as though I didn't have crohn's. I had a scope done a year after starting and there was not activity showing.

Post Edited (Mac_Gyver) : 2/29/2012 1:03:47 PM (GMT-7)


dietcoke
Regular Member


Date Joined Jul 2008
Total Posts : 186
   Posted 3/2/2012 7:37 PM (GMT -7)   
Mac-gyver: Good luck! My PML test came out negative too. I am going in for my first infusion soon.
41 years old female
Salmonella - 1996
Crohn's Colitis in entire colon - Diagnosed in 2000
Hypersensitive/Allergic to Asacol/Pentasa/Budonside/6MP/Humira/Remicade/Cycloporine, foams, and much more
Also tried SCD, didn't work
Past meds that worked: Cipro, Prednisone

Daily: Folic Acid, Vitamin D3, Multi-Vitamin, Prednisone 40mg, homemade yogurt

beckam
New Member


Date Joined Feb 2012
Total Posts : 12
   Posted 3/8/2012 7:27 PM (GMT -7)   
That is awesome dietcoke!! I've been freaking waiting for over a month now to get Tysabri approved by the insurance and all of the other stuff. I am hoping to hear tomorrow that it's been approved and ordered for me. I'm not on any crohn's meds right now since my resection in January, and I am starting to feel really lowsy again.

Dave123
Regular Member


Date Joined Feb 2005
Total Posts : 208
   Posted 3/8/2012 9:22 PM (GMT -7)   
How does the PML test work? How do they determine risk for PML? I haven't heard of it before. I'm very interested because I took Tysabri several years ago when it was in clinical trials, when the PML risk was discovered. I only had a few treatments with Tysabri before the study was halted, but it was the best I've felt in the last 10 years. I had full energy and symptoms almost stopped. The only side effect was headaches for a few days after infusions. I've been scared to go back on it and have tried every other biologic and several more clinical trials.

I also did a trial for Prochymal, which was also mentioned in this thread, about a year ago. I had a good response and have been doing well since, but the effect of Prochymal was much more gradual and less dramatic than Tysabri. But it does seem to be sustaining me so I hope it gets approved.

Good luck with Tysabri and let us know how it goes.

Mac_Gyver
Regular Member


Date Joined Aug 2007
Total Posts : 350
   Posted 3/9/2012 6:26 AM (GMT -7)   
The PML test is just used to show any potential risk prior to taking tysabri. It's used to check for antibodies of the JVC virus in your system which will let you know if you have any risk for PML at the time of starting.
Jason- 27yo
Diagnose in 2006: Moderate Stricturing Small Bowel Crohn's
Tysabri from 2008 to 2010 (restarting 03/2012)
New Topic Post Reply Printable Version
Forum Information
Currently it is Thursday, November 27, 2014 8:10 AM (GMT -7)
There are a total of 2,279,211 posts in 253,322 threads.
View Active Threads


Who's Online
This forum has 158725 registered members. Please welcome our newest member, tkdans3612.
263 Guest(s), 11 Registered Member(s) are currently online.  Details
Chapelle, CheleL, pennie, Judy2, LiamsGram, silly sheep, Disabled1, eat2bwell, Red_34, CT 2014, 1039smooth


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest  Follow HealingWell.com on YouTube
Advertisement
Advertisement

©1996-2014 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer