So, I am having a flare up right now. I had fresh MRI's done last week and then Monday, I will see my Neuro, Review, Go on Solumedrol and then discuss beginning Tysabri in a Month. I've covered this in the past, however, I'd like to hear from those of you who have been on Ty and what it has and has not done for you. How long you've been on or will be on it, as well as your body status before and after you went on it.
Cathy, You're excluded from this request as I will talk to you soon! :)
So tell me your Tysabri story and please do give me the details of why you chose it as a treatment plan and in what way has it helped you? What can you do now that you could not before? I've read all the research and would now like to hear from those who are on it or recently stopped it. No Tysabri pushers needed.
I appreciate it!
7 comments:
lanette--hi! i'm on my way to starting tysabri! & i'm very excited about it! i'm the first person in this area to get it,so they're still training the iv nurses here, i should get started in abt a wk? see my blog, i just wrote abt this today! anyway, i'm trying it cuz i was on avonex for the first 13 yrs i had ms (had it since 1994...never had one symptom b4 then!). at the end of 2007, i had weird side effects from it, legs couldnt move, i cldnt walk to the bathroom in the night after the shot...not a good thing, since they were telling me to drink a lot of water the night after the shot, to stay hydrated! humph! actually, that was the year that i had my start of a total downhill spiral...my mom & dad both died that year, my husband of 17 yrs left me for his girlfriend who is about the age of our daughter...there's $$ shit to figure out, we're still 'married' so i'm still oh his ins, but..oh hell, you get the picture...anyway,i still live here in our house with my cat, truman, & i'm going to start pt in the next wk, ms dr says she's sending them to my house for the first month or so, then i'll get it at the hospital, by then, i hope i'll be on ty, & it'll help *crossing fingers*
I have been on Tysabri for almost 3 years, just having completed my 34th infusion two weeks ago.
Since I restarted Tysabri in October 2006, I have not had a relapse & my recent MRIs taken in June last year showed no new lesions.
Tysabri has kept my MS stable, thank goodness.
You can read all about my Tysabri experiences by going to my blog which is located at:
http://lauren-livingwithms-aolcomlglbgl2003.blogspot.com/You could also write me at:
LGLBGL2003@aol.com
You might also be interested in reading more current data on Tysabri at the following website:
TYSABRI® Promotes Remyelination & Suggests Improvements In Symptoms
http://www.elan.com/News/full.asp?ID=1281713 ,as well as:
TYSABRI® Provides Greater Treatment Satisfaction As Reported By MS Patients
http://www.medilexicon.com/medicalnews.php?newsid=151815I really don't mean to sound like a cheerleader for Tysabri, but you have to realize that Tysabri is 2/3rds more effective than the ABCRs at preventing further relapses and slowing the disease process down & Tysabri promotes remyelination & improvements in symptoms.
I hope you start to feel better soon and I send you many supportive hugs..., all my best to you - Lauren :)s
My husband started on Tysabri in January 2008. When he started on it he had been in a downward spiral physically, losing more and more strength and function in his legs. Since starting the Tysabri he has not had a single flare. We are hoping for that miraculous reversal of symptoms that has happened for some people around the 24 month mark.
My biggest worry now is that the VA doctors may not want to keep him on Tysabri if we switch to VA healthcare - but will cross that bridge when we get there.
The Tysabri hasn't seemed to help the cognitive issues BUT doctor says they could also be caused by depression so still waiting on a referral to a neuro psychiatrist.
I haven't tried Tysabri. Not sure if I will but I guess I'll wait and see how things go. I'm open to it in the future though.
Good luck finding someone not pushing it. The co. is soliciting and PAYING regular people who are on it to speak b4 groups and tell their success stories. I have yet to see ANY scientific data that shows any drug is better than the others. There is NO CURE. You will progress if you would have, slower? maybe, but NO WAY to verify or see the future. Plan for the worst, hope for the best, have faith in love/laughter/and keep your body healthy and live with MS without constant fears. 75% will never need a wheel chair.
For Diane,
You said: " I have yet to see ANY scientific data that shows any drug is better than the others."
If you and others read the following scientific data that shows that Tysabri is 67% more effective than the ABCRs, you will see that Tysabri is better & superior to the others:
" The relapse reduction rates used were: TYSABRI was 67%, AVONEX (Interferon beta-1a IM) 32%, Betaseron(R) (Interferon beta-1b) 34%, Copaxone(R) (glatiramer acetate) 29%, and Rebif(R) (Interferon beta-1a SC) 32%."
See: http://www.elan.com/News/full.asp?ID=913012
I'm not sure if Diane has read this data, but Tysabri is for sure far superior to the ABCRs.
Lauren
This is for those discussing the effectiveness among the CRAB's and tysabri. There have been some head-to-head studies among the CRAB's and those have shown no real significant difference among them. The claim that tysabri is more effective, is not a result of a head to head study, thus no one can yet say that tysabri is more effective then the CRAB's. Tysabri is, however, 67% more effective then not taking anything, as opposed to the CRAB's which are generally 30% more effective than not doing anything.
I am on my fourth dose of tysabri. I was taking Copaxone, but I was still having residual numbness from my latest flare. In June I went out in the sun for an hour and in five hours I couldn't feel anything below my neck. I was so annoyed that I decided to switch to Ty.
I live in SoCal, where there is sun shine year round, I cant have this happen every time I'm in the sun! Any who, I have had great results with Ty, I can exercise now, I can go out in the sun, I have gone through a very very stressful situation with Blue shield and I have had absolutely no flares.
Before, if I got stressed out, my eye would immediately begin to shake, and in hours my arms and legs would become numb.
The side effects that I have had with Ty are moderate head aches, GI issues...and that is pretty much it. The GI side effects only lasted for the first three infusions, I no longer have them. The head aches only last (for me) four days after an infusion (they just come and go).
I am very happy with Ty, but I am also very vigilant. Because of the possibility of PML, and liver disease, I am in the constant look out for their symptoms. If you cant stand the stress of being at risk of PML, or liver failure, don't take Ty, because you will go crazy.
Take care of your self. I wish you all the luck in the world.
p.s. only take Ty if your doctor knows what PML symptoms look like, don't risk your life with an inexperienced neurologist. After the first year, you should have mri's every six months, and frequent lab work. Ty can be very dangerous and you have to be very vigilant.
Post a Comment