Any experiences with tysabri?

[kello82]

it seems like theres a pretty good chance that ill be starting tysabri soon.

anyone else have had experience with this one? i know ive seen the it around the forum at least once, but dont remember who or where!

ive heard about the nasty brain infection side effects and fatalities, but my doc said that the chances of developing it while on tysabri are less than the chances of someone developing TB while on remicade. the media gets all hyped up about the words "brain" and "fatal", hence all the bad press the drug has gotten.

still.....it sounds scary! input would be much appreciated

 

[katiesue1506]

I don't know much about it except that I mentioned it to my doctor a couple weeks ago and he won't even put anyone on it because of the nasty side effects (not just the brain thing).

You should ask Mike or Kim. Mike used it and it wasn't so go for him, I think it caused him to have breathing issues. I think BWS used it too... but I could just be making that up.

Good luck with the information collection!

 

[kello82]

thanks for responding guys!

ugh i know ive met with a doctor who refused to prescribe it either.

and yep, ive already been on remicade. stopped having any impact after awhile, then i switched to humira which didnt seem to have any effect at all

 

[kello82]

thanks Pen

 

[ErinDF]

Hey kello,

Sorry for the delayed response but I'm on Tysabri now. I've had two infusions and get my third in a couple of weeks. So far I haven't had any side effects from the drug at all. I've never really had side effects problems though with any drug (except high dose prednisone, but then who doesn't). I don't really know if its working though because between my first and second dose I had surgery, which is making me feel better but is unclear whether any of that is from the medicine.

In terms of the fatal brain disease, all of the reported cases were in people who were on certain immunosuppresants while on the Tysabri. So your doctor will take you off any of those before you start the drug.

Good luck with it if you do decide to take it. And have fun with the 8,000 calls you will get from your "Tysabri case manager" before you make your first appointment. For serious, they really want to help you out even if you don't really need it.

 

[BWS1982]

This is delayed a bit, but I haven't been on it. Long story short, I'm seeing yet another GI (6 now) who would be willing to put me on it also (2 docs would now)....but what Erin said isn't entirely true about the interactions. The FDA reported 2 more cases, cases of monotherapy usage, ie: they were on nothing but Tysabri. The chances are low for PML, yes, but the chances were low for me to get Crohns, and quite high for Remicade or Cimzia to work, yet in both instances I beat the odds, I have Crohns, and Remicade and Cimzia have done little if anything for me as far as bringing remission.

I now put little stock in "statistics" and have no idea what to think of my options, I'd almost rather have a bag than take a drug that nobody seems to understand. They made confident claims that they knew why people died from Tysabri, then out of the blue more people (2) died from it, defying the claims, and it makes me lose a lot of faith in any such claims. Each time I bring this perspective up to GI's, they have no rebuttle or counterargument. Either they agree, or they are respecting my opinion. I've been on 4 different immunosuppressants over the last year, at one point 3 at once, so I have no idea of what "an all clear" would be for "getting them out of my system". An MS patient who is on Tysabri, and has been on it for a year says it's been a Godsend for her, and that they had her clear out 3 months prior to commencing it with NO other meds that interfere with it. I cannot go 3 months without the other meds unless they can guarantee me "the other meds" are doing nothing to help me. Who knows how much good they are doing, I've been a lab rat for the last 14 months and have no idea what's doing what. Will I bleed out and be in the ER? Will I have no change? That's only the first concern, because like I said, people have died with that drug even with ONLY that drug being taken. The odds ARE low for PML, somewhere in the 1 in several thousand according to reports. But those were the same odds of me living a life without Crohns Disease. No thank you.

Hope I helped, sorry to worry anyone on it, these are just my thoughts, I've lost a lot of faith in the experts, and put more faith in the dice rolling NOT in my favor, again and again. I seem to keep asking for a new hand to be dealt, getting let down, and hoping for a good hand. Maybe the entire game just sucks and it's pointless.

 

[kello82]

agh benson i know what youre saying too. i keep bouncing back and forth with this in my mind, that these drugs are so new and no one knows anyhting about them. honestly at times i have said that i would rather be bagged than be a part of these drugs.
the different thing for me from you though is that i have been off of all immunosuppressants since july anyways, so i wouldnt have to worry about the clear out period.
and i do know what youre saying about constantly asking for a new hand and then getting let down. i have been through this feeling so many times. its like, how long can you keep hoping for something and NEVER getting it and being crushed everytime? so then whats to prevent you from losing faith in everything?? so then it just does seem easier to not even hope or have faith in anyone or anything at all.
my head spins with all the conflicting thoughts i have. i just know that somehow, we keep on. thats all we can do, yeah?

 

[ErinDF]

Statistics, damn statistics

Hey,

I feel the need to reply as a Tysabri user...though i should say that people should do only what they are comfortable with. I think, though its true that the incidence of the horrible side effects from Tysabri is higher then we currently know, its also possible that its lower (the sample size is still small at this point). In addition, I think that the chance of my dying or getting injured in a car accident is much higher then any incidence so far of what's been seen with Tysabri reactions. In the end, I've been sick for two years, I've had to have a temporary ileostomy, and neither Prednisone nor Remicaide through me into remission (or did much of anything frankly). I'll take the low odds of PMT (is that it?) over the 100% odds of continuing to be miserable if I can't find medicine that helps me.

Okay...that's all I got. As I said, other people obviously have very different approaches to considering side effects then I do.

:tongue:
Erin

 

[BWS1982]

I mean not to put up an argument for the discontinuation or aversion of Tysabri, but just to simply state my view on my consideration of it. My view is that there is too much mystery on the drug, and I'd rather just avoid this mystery. If scientists and MD's cannot pin down and grasp the medication, I won't venture the risk of trying to guess my own fate. I have been on many of the drugs that interact with Tysabri for over a year, and am still to this day, so "an all clear" is also questionable, who decides what is "all clear" as far as a time frame? That is another mystery. The immune system is not fully understood, nor is Crohns....There is no cure for PML, and it is fatal, yet, they "monitor" for occurrences of it? What good is that? I'm sorry to show signs of anger at my situation, but it is more of a frustration with the consistent unknown, and persistent failure. Because odds have lost their value with me, and I have lost a lot of faith and hope like Kello mentions, I do not trust that there is an understanding of what may happen to me. I think we have all been through a lot of suffering, to each their own on the possible resolution to end this suffering. And Erin, best of luck on it for you. You are not making a wrong decision, because it is your decision.

Here is the recent report from the FDA from a couple months ago in case it will help anyone again:

>>> "U.S. Food & Drug Administration (FDA)"
<[email protected]> 8/25/2008 >>>
MedWatch logo MedWatch - The FDA Safety Information and Adverse Event
Reporting Program

FDA informed healthcare professionals of two new cases of progressive
multifocal leukoencephalopathy (PML) in European patients receiving
Tysabri monotherapy for multiple sclerosis for more than one year. PML,
which is usually fatal, is a known risk of Tysabri treatment, but
previous cases in patients with multiple sclerosis were seen in
combination with other immunomodulatory therapies. Approximately 39,000
patients have received treatment with Tysabri worldwide, with
approximately 12,000 patients receiving treatment for a least one year.
No new cases have been seen in the US, where about 7,500 patients have
received the drug for greater than one year and approximately 3,300
patients have received the drug for at least one and one-half years. In
the U.S., Tysabri is available only to patients with relapsing multiple
sclerosis or Crohn's disease who are enrolled in the risk minimization
plan called the TOUCH Prescribing Program. Under this program, every
Tysabri-treated patient is closely monitored and followed for the
occurrence of PML and other serious opportunistic infections. While the
two patients who developed PML were on monotherapy, the FDA still
believes that Tysabri monotherapy may confer a lower risk of PML than
when Tysabri is used together with other immunomodulatory medications.
Prescribing information for Tysabri will be revised to include
information informing prescribers and patients that cases of PML have
occurred in patients taking Tysabri as monotherapy. Healthcare
professionals should continue to monitor patients for sign and symptoms
of PML. Additionally, Tysabri should not be infused if PML is suspected.


Read the entire 2008 MedWatch Safety Summary, including a link to the
FDA Information for Healthcare Professionals Sheet regarding this issue
at: http://www.fda.gov/medwatch/safety/2...8.htm#Tysabri2

 

[Zman]

I am 47 have had CD since 16 been on every med imaginable . I was on Remicade and 6mp that was a Godsend for me . worked for 13 years of no problems . Before Remicade I had a small bowel resection and then my Colon removed. I grew immune to the Remicade avoided surgery when they switched me to Humira . That worked for a year then a flare up hit me overnight. Ended up in surgery again for 4 hours. Grew immune to the Humira .
I cant have any more removed so my choices , double the Humira which my insurance wouldnot pay for , itwasnt working any way . Roll the dice ad take Tysabri . Do nothing and wait. I am symptom free due to the surgery after the last two surgeries its usually around 5 years before I have any problems. So I decided on the tysabri I have had 4 months on this drug now . I am symptom free had joint pain for thefirst two months but now all is ok . I eat well putting on wieght but I do not know if its because the surgery removed all the disease or if the drug is working. In my DRS office 5 of us started the drug I'm the only one left on it now. So My choice is what do I die from PML or CD , who knows I do know this if I hae another flare up I can kiss it good bye my brother died from the same ting at 42 . SO for now it the tysabri for me and I'm doinf great. Also Biogen is paying for what my insurance will not.

 

[kello82]

hey Z
thanks for your response. its good to hear that youre doing pretty well, but gotta be frusterating that you dont know if it was the surgery or the drug. just curious do you have a bag? or have all your surgeries been resections? you mentioned that you had your colon removed so i wasnt sure. that is whats next for me if the tysabri doesnt work, probably will end up with a permanent ileostomy. so im really hoping that this drug works out for a while at least.
right now just waiting on insurance to cover me for the drug. my GI even sent a letter of emergency need to the company and they still are not answering.
sorry to hear about your brother too. did he pass away from having crohns too?
i hope you continue to feel well, and welcome to the forums Z!

 

[Zman]

Hi Kello
Yes I have an illeostomy. ( the bag) My colon went bad in about two weeks the pain was unbearable. It was something I feared from the time I was diagnosed . I was 34 when I had it done .They removed all the colon and rectum. ( I say a joke from it because I also went through a divorce right after the surgery. I say I lost two A@#holes at once lol I know its not nice ) I was a little depressed form it but the quality of life is so much better now. I have very little pain now . The only difference now is if I have a flare up its very quick not gradual. It takes a little to get use to it but once you do for me it was worth the trade off.
And yes my older brother did die from crohns it made his body so weak and he actually died from pneumonia.
Hey my insurance would not cover everything but the company Biogen is paying for the rest , they have a great assistance program.
I am disease free and symptom free eating well back in the gym and putting on the size I lost so maybe its the drug .
Its a hard choice to make but in my case its all I had left to try. If you have more ostomy questions just shoot .I'll answer what I know.

 

[komokazi]

Suggest calling the contact info on the Tysabri Web Site

Kello,

Suggest you call the Tysabri case managers (Contact number is on the Tysabri.com website) to help you and your doctor in navigating the insurance approval waters.

Chris

 

[Zman]

You can try this number also its the customer service touch program
1-800-456-2255

 

[kello82]

thanks for the contact numbers everyone. i think its resolved now though. im honestly not sure what the exact problem was, my dad handled most of it. and i know that my GI office has been in contact with the touch reps about it too.

Z- lol your joke made me laugh a little mean? maybe, but who cares haha. yes yes i am starting to feel that a bag would give me better quality of life. my GI even just echoed that. gonna give tysabri a go first and well see where it goes from there. but my mind is way more open to surgery than it was a year ago.

 

[Zman]

Yes it was kind of mean but hey she left because she couldnt deal with it all. So therefore the Joke :ycool: Next time you go in for a scope have a friend write on your butt " Hey Doc we have to stop meeting like this " You have to make the best of it right !:eek2:

 

[Zman]

Oh there are a lot of litte tricks you need to know about an ostomy I learned the hard way .

 

[danman]

What sort of tricks?
I only got my ostomy 2 months ago. It's going well so far.

Kello, It's not as bad as I first thought. Although I'm a bit like Zane, I've had CD for 20 years, so it was always in my mind.

So far the quality of life is much better. I've got no pain and no other symptom so far.

Zane, when you start to get symptoms now with the bag, how does it start? Normally with me, diarrhea would be more intense and I'd have severe cramps. But with the bag now, I won't know if I have diarrhea.

 

[Zman]

I decided the best way to answer this is start a thread I'm sure everyones input will help.