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Posted: Fri Jan 19, 2007 7:25 am Post subject: I love Tysabri!!
I had my first Tysabri infusion on December 8. I was EXTREMELY nervous, but I had been on Betaseron for 3 years, and I suffered 2 exacerbations within 5 months, the 2nd of which took me out of work for 4 months! I had developed some spinal cord lesions, which caused some sensory issues in all of my limbs. I had a mild headache the evening of my first infusion, but I took some advil, and I didn't even notice it anymore. About 2 weeks after my first treatment, I started to feel great! I mean not just great relative to MS, but pre-MS great! I had my second treatment on January 4. Again, the only side affect I felt was a slight headache. My next treatment is scheduled for February 2. I LOVE not having to worry about my injections, and not scheduling my life around them! I have been out of work since early October, and my neurologist has cleared me to return to work on February 5. For anyone considering Tysabri, I say go for it! It is worth the risk to remember what you felt like before MS came along. As long as you are vigilant, and listen to your body, nothing can go wrong!
Glad you had such great experience. I have had 4 infusions to date and am slowly getting worse... seemingly by the day! My legs keep getting stiffer and weaker, and my balance is now nill. I now have to use a scooter in the house at all times. Don't even want to risk the walker, in case I lose my balance. So, for me Tysabri has not helped... maybe even sped up my deterioration? There have been NO side effects, good or bad, after the infusions. Just this awful fear that the drug is resulting in this gradual paralysis of my legs???! Should I stop the Tysabri or give it the suggested 4-6 months?
Joined: Feb 02, 2004 Posts: 864 Location: California, USA
Posted: Sun Jan 21, 2007 3:07 am Post subject:
lollipop-- what medications have you tried before Tysabri? What is your MS history? It is very frustrating that Tysabri does not seem to be working for you (yet?!), but perhaps it is helpful to figure out what elements might make it work in some individuals and not others. _________________ Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
Arron,
I used to do Avonex, but had to stop it for the Tysabri 8 months ago. I tried Tysabri the last time it was available, but the weekend it was taken off the market I had a scary situation. Following the infusion on Friday I woke up Sat morning with complete paralysis of both legs. That lasted 3 hours and didn't return until the next morning when I woke up. Lasted 2 hours. Sunday it took 1 hour, and Mon morning my Dr called me to tell me that the drug was taken off the market!!! Can you now understand why I am worried? My neuro said that nothing could be linked to the drug, and my best bet is now to try it again. However, it's been downhill since that first paralysis. That was the first time I had to be carried, and we got a walker to safe. So, tha's my story! Pretty sad, but at least my spirits have not been broken yet!
Joined: May 26, 2004 Posts: 1359 Location: London, ON, Canada
Posted: Mon Jan 22, 2007 8:28 am Post subject:
Lollipop,
Quote:
Following the infusion on Friday I woke up Sat morning with complete paralysis of both legs. That lasted 3 hours and didn't return until the next morning when I woke up. Lasted 2 hours. Sunday it took 1 hour, and Mon morning my Dr called me to tell me that the drug was taken off the market!!! Can you now understand why I am worried? My neuro said that nothing could be linked to the drug, and my best bet is now to try it again.
While it's difficult to relate how the various MS medications affect any one MS patient, the fact that you ended up with complete paralysis in both legs the very next morning is certainly cause for concern. How your neuro could say to you that nothing could be linked to the Tysabri infusion kind of begs the question what else could have possibly caused that severe a symptom within 24 hours?! That kind of result after taking ANY kind of medication would certainly wave a lot of red flags.
Perhaps a second opinion might be in your best interests before trying this drug again.
What ever your choice, I hope it works out well for you.
Posted: Mon Jan 22, 2007 8:41 pm Post subject: tysabri infusion
I too have not had good results from the Tysabri. I have had 3 infusions and have gotten worse with each. I am glad for everyone else's good results, but I am also "very interested" in hearing more about the negative results. I am really afraid to take another infusion.
Joined: May 26, 2004 Posts: 1359 Location: London, ON, Canada
Posted: Tue Jan 23, 2007 8:16 am Post subject:
CureOrBust wrote:
Has there been any explanations from previous trials as to theorys as to why tysabri fails for some? so badly?
I would think that the only people who have any kind of detail as to similar failures with Tysabri are Biogen/Elan....and as with most drug companies, you won't find them going out of their way to publish this failure data. That doesn't do much for potential sales!
If you look at the history of almost every drug that has been used to treat MS, what do you see....some patients benefit, others get nothing one way or the other and some actually get worse. About the only information the public receives is about the patients who benefit.
And with monoclonal antibodies (Tysabri) the very researchers who developed this class of drug warn us about the dangers of using them to treat humans. They alter how the immune system operates and the minute you do that you open the gates to a whole array of potential problems.
So at this moment I doubt if anyone really knows just why some patients do so poorly on Tysabri while others report benefits....and this just adds to the mystery of this frustrating and mystifying disease.
Joined: Jul 28, 2005 Posts: 1279 Location: Sydney, Australia
Posted: Wed Jan 24, 2007 4:18 am Post subject:
HarryZ wrote:
If you look at the history of almost every drug that has been used to treat MS, what do you see....some patients benefit, others get nothing one way or the other and some actually get worse. About the only information the public receives is about the patients who benefit.
I dont know the history of crabs (only diagnose 2 years ago, symptoms for 10+), however, from memory, all know its those that develop antibodies to the interferons that dont do well at all. Its this sort of info (which IS currently public) I was asking about
Joined: May 26, 2004 Posts: 1359 Location: London, ON, Canada
Posted: Wed Jan 24, 2007 10:14 am Post subject:
Quote:
I dont know the history of crabs (only diagnose 2 years ago, symptoms for 10+), however, from memory, all know its those that develop antibodies to the interferons that dont do well at all. Its this sort of info (which IS currently public) I was asking about
Those who develop persistent antibodies with the CRAB drugs must stop them for life because of the potential damage to the liver. But that isn't the only reason that they may do poorly on them. Some patients suffer very severe side-effects and can't continue to use them. And some become much worse after taking them. Yet others have few if any side effects and gain some benefit. Go figure!
As far as Tysabri goes, there isn't too much public info out there that has been published by Biogen/Elan. I have heard about some unconfirmed problems with patients in the trials but that's about it. If you asked a neuro today as to why his/her patient may have done very poorly with Tysabri I'm betting the neuro wouldn't be able to answer you because he/she simply wouldn't know.
All very frustrating for the MS patient who may want to try Tysabri but can't be given too many answers at this point in time.
It is very frustrating. I have tried all the CRAB drugs and have had disability progression with each, but my MRI's have changed very little since day one. My only problem is with a spinal cord lesion. I had hoped Tysabri was the answer (although, a specialist that I saw in Atlanta felt that Rituxan would be a better choice since it kills B cells and that is what is in the spinal cord lesion, but no FDA approval for MS and that means no insurance coverage). I plan to discuss with my neurologist about continuing Tysabri...will update.
Joined: Feb 10, 2005 Posts: 309 Location: grenada, ms
Posted: Thu Feb 15, 2007 1:57 pm Post subject:
Is there anyone whom Tysabri is not working for, even getting worse, that has an "unusual" type of MS. One that has not responded to much of anything? Look into Devic's Disease; NMO. Search it on the internet and see if you meet its criteria. MANY people dxed with MS for years and years have had the new blood test for this and have tested positive. B4 2005, there was roughly 150 cases in the US. That has doubled since the blood test came out in 2005. Even though Devic's was once considered a "form" of MS, and still is by some, it does NOT respond well or at all with MS medicines. Devic's is mainly in the spine, usually the upper neck area, and in the optic nerves. BUT there have been cases in the brain. If you are not responding to MS therapies, it is worth doing a little research on.
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