Experiences with Tysabri

A board to discuss the newly-released drug Tysabri, (formerly known as Antegren) as a treatment for Multiple Sclerosis

Re: TYSABRI

Postby seeva » Fri Jan 25, 2008 10:58 pm

seeva wrote:HI LAUREN THANKS FOR YOU INFOMATIONS ABOUT TYSABRI. AFTER YOU TAKING TYSABRI INFUSION DID YOU FIND ANY IMPROMENTS?

REGARDS
SEEVA :oops:
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Postby seeva » Fri Jan 25, 2008 11:09 pm

msladyinca wrote:Hi Seeva,

I am here in the US, and I have had a 17 Tysabri infusions so far.

On an Australian MS website, someone posted that Tysabri is being made available for 20 MS patients, until the PBS starts to fund it in April, 2008.

You/Neurologist need to contact Biogen (the manufacturer of Tysabri.

The Australian MS website is: <shortened url>

Also, below are the links to Biogen's website, and the website of Élan (the company that discovered Tysabri and is the copartner of Biogen for Tysabri). Hope this information helps. All my best, Lauren
:

Biogen: http://www.biogenidec.com/site/contact.html

"contact in Australia:Australia

Suite 2, Level 4
123 Epping Road
NORTH RYDE NSW 2113
AUSTRALIA
Phone: 61 02 8875 3900
Fax: 61 02 9889 1162"

Élan: http://www.elan.com/Products/

"Elan has a Patient Assistance Program to provide TYSABRI and PRIALT to patients who might not otherwise be able to afford them. For more information on Elan's Medical Needs Program, you may contact the following: TYSABRI at 1-888-489-7227 or PRIALT at 1-888-774-2581"

Dear Msladyinca thanks for your details reply about TYSABRI.but i am having progrsiveRRMS. accoring my neur i am not the rigrt candidate for the drug. So i had to wait. I AM TRY TO GET STEMCELL TREATMENT IF ANY LEGAL ONE AVILABLE. AND ALL THE CILINIC DOING STEM CELL THERAPY FOR M.S WANT MINIMUM US$30.000. IT IS VERY HARD FOR MY FAMILY.
I WILL WAIT FOR NEW DRUG. :oops:
WITH BEST REGARDS
SEEVA
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Postby msladyinca » Sat Jan 26, 2008 1:36 pm

Hi Seeva,

I believe that your neurologist is misinformed. In the European Union, Tysabri is approved for severe rapidly evolving relapsing remitting MS (what exactly does your neurologist think Progressive Relapsing r/r is?)

See the following from the Multiple Sclerosis Trust:

http://www.mstrust.org.uk/downloads/tysabri.pdf

"Tysabri approved in the European Union In June 2006, the European Commission approved the marketing of Tysabri as a single disease modifying therapy for relapsing/remitting MS to prevent relapses and
delay progression of disability. However, in practice, treatment with Tysabri has been restricted to the following patient groups:
• people with highly active relapsing/remitting MS who have failed to respond to treatment with beta interferon (sub-optimal therapy group). Patients should have had at least one relapse in the previous year whilst on therapy and have evidence of lesions on their MRI scan; or
• people with rapidly evolving severe relapsing/remitting MS (RES group).
Defined as having two or more disabling relapses in one year and with
evidence of increasing lesions on two consecutive MRI scans."

I suggest that you present your neurologist with this article, and have them read more about Tysabri. Their opinion that you are not a candidate for Tysabri, in my opinion, is absolutely ludicrous. Note however, I am not a doctor.

I wish I could help you further Seeva, but there comes a time when MS patients need to become their own patient advocate, and fight for their own health. I believe you are doing this Seeva, but you really need to educate your neurologist, and not take their word for everything. You are the one that's living with the disease and its disabilities, not them.

Have a good weekend, Lauren
Last edited by msladyinca on Sat Jan 26, 2008 9:26 pm, edited 1 time in total.
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TYSABRI

Postby seeva » Sat Jan 26, 2008 8:32 pm

DEAR LAUREN THANK YOU VERY MUCH FOR YOUR KIND REPLY ABOUT TYSARI. IT IS VERY HELPFUL NOT ONLYFOR ME BUT ALSO FOR MY M.S FRIENDS. I WILL DISCUSS THIS IN THE NEXT OUR M.S SUPPORT GROUP MEETING. MY FRIENDS WILL BE VERY GRATFUL TO YOU AND OTHER MEMBERSOF THISISMS WEB SITE. POSSIBLY THEY WILL JOINT AS MEMBERS. MANY THANKS FOR YOU AND YOUR PRIVATE E.MAIL MASSAGE. I WILL GO THROU YOUR WEB BLOG.
REGARDS
SEEVA :roll:
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18th Tysabri Infusion Report...

Postby msladyinca » Thu Feb 21, 2008 11:33 am

Hi everyone,

Yesterday I had my 18th Tysabri infusion, and this is what I posted on my blog last night:

I had 18th Tysabri infusion today (why is it that each of my Tysabri infusions lately have been when it's pouring rain outside? Oh yeah, it's winter- heehee)..

I learned that my small infusion center currently has 10 Tysabri patients that they are infusing, and to the best of the nurses' recollections, none of them have had a relapse since starting Tysabri. My infusion, as usual (thank goodness) was uneventful and my wonderful infusion nurse got me on the first try (Lordy, I love it when I don't have it to endure multiple sticks).

But mainly, what I wanted to pass on was that I had the opportunity to speak with a young MS patient and her mother that had stopped by the infusion center to say hi to everyone as they were on their way for the young girl to have her six-month neuro appointment. When the young girl and her mother found out that I was there having my 18th Tysabri infusion, they asked the infusion nurses if I could possibly speak with them for a while (this is the young girl that I previously told all of you about that had two (I think) previous Tysabri infusions and was feeling kind of depressed as she had not seen any improvements in her condition-that was when I asked my infusion nurse to pass on a message of hope to her when she saw her next).

The young girl (I believe she said that she was only 19) was very shy, but her mother wasn't. Her mother told me that even though her daughter had been diagnosed with MS at age 16, had tried all of the ABCRs, with the exception of Rebif, just continued to get worse and ultimately, wound up in a wheelchair two years ago. Her mother also said that her daughter had various symptoms of MS throughout the years, but none of them had made the connection that it was MS, until she got the final diagnosis (this is very common among MS patients as they look back prior to their diagnosis and can see the various symptoms that they were trying to attribute to other circumstances).

Are you ready for this? Her mother told me that her daughter is now able to take six steps with a walker, and is determined to get her driver's license! Also, her tremors have all but disappeared, and the strength is returning to her hands where she can almost write her name again. Just her balance has not made any improvement, yet. They are both ecstatic about Tysabri, and feel so blessed that they are able to have this medication available to treat her MS.

The young girl told me that she has had no side effects whatsoever from Tysabri, other than a slight headache that lasts the day of her infusion. They told me the name of her neurologist, and I knew who she was (her doctor happens to be my neurologist's partner). And the best part was the mother told me that two of her daughter's legions on her brain have all but disappeared! Her daughter's face lit up like a light bulb, she was so happy!

I mentioned to them both that because she is still young, her body has a fantastic opportunity to heal itself (with the help of Tysabri keeping most of the inflammatory cells from attacking her central nervous system), and with her positive attitude and future Tysabri infusions, anything can happen! But I reminded them that Tysabri is not a cure for MS...it was designed to try and prevent further relapses and their accumulating disabilities, and to slow the disease process down. What the daughter is experiencing is icing on the cake (improvements). And for some patients (like me), Tysabri is able to keep their MS stable (I have not had a relapse in over a year since restarting Tysabri in October 2006).

I also told them about my experiences with Tysabri after my very first infusion ever in early 2005. We talked about other things regarding Tysabri/MS/PML/the ABCRs, etc., and just before they left, her mother asked me how long someone can take Tysabri.... I said, "Well, I am on my 18th infusion, and so far so good, so I don't see any reason why your daughter would ever have to stop Tysabri infusions unless she developed neutralizing antibodies to Tysabri, unless she became highly allergic to it, suffered severe side effects from it, or until a superior MS medication came along and/or a cure for MS was found, but I am not a doctor and you should double check with Dr. X.". They both threw their hands up in the air and yelled "Yes! Thank you God!", and then they hugged each other (you would not believe the smile on my face when that happened).

Well, it's time for pizza and mudslides. I hope everyone has a wonderful evening....All my best,

((((hugs))))
Love, Lauren
:)
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TYSABRI IN AUSTRALIA

Postby seeva » Wed May 28, 2008 7:56 am

HI LAUREN THANKS FOR YOUR REPLY TO MY E.MAIL you have send me some very useful infomation about how to get TYSABRI from my neruo for my progressive M.S. TODAY I have seen my neruroand as you said i have convince to him to give me the drug. because i was very ditermined to go on TYSABRI. MY NEURO SENDING ME TO ONE OF A HIS FRIEANDS. NEUROIMMUNOLGY ALSO MY NEURO AGREAED TO SEND A GOOD REPORT ON MY MEDICAL HISTRY SUCH A WAY THE NEW DR CAN ABLE TO GIVE ME THE TYSABRI. IN AUSTRALIA ALL THE DRS ARE KNOW NOTHING ABOUT TYSABRI. IT IS NEW TO AUSTRALIAN MARKET. WITH THE HELP OY YOU AND THISISMS FORUM INFOMATIONS WE CAN CONVINCE OUR DRS. IN AUSTRALIA. SO MY MS FRIEANDS AND I AM VERY GREATEFUL TO YOU AND OTHER MEMBERS OF THISISMS'S VALUABLE INFOMATIONS.
REGARDS
SEEVA :roll:
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Postby msladyinca » Wed May 28, 2008 12:20 pm

Wonderful Seeva! I'm so proud of you for sticking to your guns and being insistent upon Tysabri therapy! :D

Please keep me (us) posted as to what happens when you see the new neurologist and whether or not they agree to place you on Tysabri therapy.

I'm sending many prayers and hugs of support to both you and all your friends out there... woo hoo, this is turning out to be a great day!

Lauren :)

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Postby mom1532 » Wed Aug 27, 2008 10:10 am

i am about to start tysabri infusions and i was looking for advice on rather or not i should start them or try something else? i dont want to try it if it makes the ms worse because its already bad enough! so if u could my neuro's nurse would not give me any info on this and i was online looking for some so please reply quickly i want to know if this is a good idea or should i look for a different resort!



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Postby HarryZ » Wed Aug 27, 2008 10:37 am

mom1532 wrote:i am about to start tysabri infusions and i was looking for advice on rather or not i should start them or try something else? i dont want to try it if it makes the ms worse because its already bad enough! so if u could my neuro's nurse would not give me any info on this and i was online looking for some so please reply quickly i want to know if this is a good idea or should i look for a different resort!



MoM1532


PMFJI, but the decision as to whether you should start on Tysabri or any other MS medication is something that you and your neuro should discuss after you have been properly informed about all the options.

The key word here is "properly informed" because you will get all kinds of opinions and ideas from the internet...some good and some not so good. If you have spent any time reading about all the options on the internet, you will learn that even the doctors have different views about what medication to use.

Some docs promote the use of Tysabri...others bluntly tell their MS patients not to try it because of the associated risks....not that all the risks are even known at this time. When use of the drug causing PML was associated with using other MS medications such as Avonex and other immuno-suppressive drugs at the same time, Biogen (manufacturer) stated that it was the combination that was the problem. They told us that Tysabri, used as a monotherapy, was safe. Now we learn that two other patients, using only Tysabri, have contracted PML.

Each patient, with the help of their neuro, has to evaluate the risk vs benefit factor before making their decision. Don't get mislead by some Tysabri "cheerleaders" on the internet and ensure you learn about all aspects of the medication before making your decision.

Harry
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Postby 10yearsandstillkicken » Wed Aug 27, 2008 12:51 pm

Harry is right about making an informed decision. Only you and your doctor can make the right choice for you. That does not mean you should not research the drug, in this case Tysabri, and rely on your doctors opinion alone. I started Tysabri 3 months ago Monday. It has not made my ms worse or better for that matter. As in all the ms drugs, each person responds differently. Some good and some not so good. I have failed betaseron and rebif. So we are trying this. I like not having the shots. I have had no side effects that I can identify. But the old drugs didn't have PML associated with them. Not that they were helping any longer anyway.
Chuck
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Postby msladyinca » Wed Aug 27, 2008 5:29 pm


Hi mom,

No one can give you advice as to what you should do..., if you are interested in Tysabri, you should definitely discuss Tysabri with your neurologist. If you are looking for information regarding Tysabri, here are a few links for you to research this proven data:

TYSABRI® Demonstrate Significant Improvements in QoL http://www.elan.com/News/full.asp?ID=840112

TYSABRI® Demonstrate Significant Reduction in Steroid Use and Hospitalizations
http://www.elan.com/News/full.asp?ID=913012

TYSABRI® Has Sustained Effect on Relapse Rate for up to Three Years
http://www.elan.com/News/full.asp?ID=910437

TYSABRI® Shows Reduction in Steroid Use/Hospitalizations & ABCR Comparison
http://www.elan.com/News/full.asp?ID=913012

TYSABRI® Reduces Vision Loss in MS
http://www.medpagetoday.com/Ophthalmology/GeneralOphthalmology/tb/5453

TYSABRI® Demonstrates Improvement in Cognitive Function
http://www.elan.com/News/full.asp?ID=910099

TYSABRI (Natalizumab)
http://www.tysabri.com/tysbProject/tysb.portal

The NATALIZUMAB Story
http://homepage.mac.com/vincentmacaluso/Dr.Macaluso%27sSite/FileSharing7.html

I hope that some of the above information is of help to you, and you can also find great Tysabri information on this site as well. Good luck to you mom! All my very best to you, Lauren :)

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Postby ladystewart » Sat Sep 27, 2008 10:22 am

I had a Tysabri infusion 9/22/2008 and pray for positive results. :)

I have been on Rebif, Novantrone (two months), Copaxone. I was on Tysabri May and June/2007 but moved from Md to CA and the Neuro in CA did not start me back on Tysabri soon enough in July 2007.

I am on Tysabri now--again--thank God.

I am using a walker now and progressing!! I hope my time away from Tysabri has not made me worse! I don't even drive any longer. :?:

I used to program and work IT now it takes me forever to type.

Great to see this site. Pray ALL are well.
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Wife's 4th Infusion Progress

Postby dreddk » Sun Dec 21, 2008 12:28 pm

My wife has had 4 infusions, 5th next week. So far all good. No side effects at all. Has been given prednisone for the first 4 to help reduce chances of an allergic reaction. Only thing she gets is a slightly weird look from the pharamacist at the hospital when she puts $3,000 on her credit card for the drug!

The infusions are painless and if anything a bit boring as she needs to wait around for an hour after to see that she's all okay.

It could be a placebo effect but we have both noticed she has a more energy than before she started. She was napping every day in the afternoon and crashing at night. Now she no longer needs to take a sleep during the day and has started doing Pilates again.

All in all very happy with the progress so far.

FYI Wife diagnosed with MS in 2006 - Optic Neuritis. Second relapse May 08 sensory. Fuzzy feeling in left hand ongoing.
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Postby Loobie » Sun Dec 21, 2008 5:51 pm

I really hope my situation is similar because it sounds simlar in that the change is so subtle you hardly notice. I really "won't say for sure" that good things are happening, and it's not like you feel it working. However, I have also noticed more energy and others usually point out when I do something I haven't for a while. I'm still not going on record as touting it's benefits until after some significant time has passed, but I am, also, pleased so far.
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Postby Loobie » Sun Dec 21, 2008 5:52 pm

Oops!,

I suppose it's significant to mention I've had two infusions and the next one due first thing in the New Year.
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