Any Tysabri users want to change my mind?

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

Any Tysabri users want to change my mind?

Postby Jenmen0304 » Mon May 06, 2013 2:38 pm

Just took my blood test to find out if I have the JC virus(hope I spelled right). If I am negative, the neurologist strongly recommends Tysabri. If I am positive, then they want to go with Avonex. Being the positive person that I am at 35, I'm thinking I am gonna be negative. So anyone out there in this MS world want to tell me their experience with Tysabri? Anything I should prepare for? I have a three year old and a 5week old... I am fighting for them. I have began to change my diet slowly and will begin a workout regimen when I am healed from c section. I feel like it is a catch 22: Take meds and get sick from them maybe OR don't and play Russian Roulette. Everyone in my life just says how positive I am and how I will be fine... I keep my symptoms from my husband because I don't want to worry him. Anyways, your experiences with it would help :)
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Re: Any Tysabri users want to change my mind?

Postby DougL » Tue May 07, 2013 8:34 am

Jenmen0304 wrote:... I keep my symptoms from my husband because I don't want to worry him.

speaking as the husband of a lady with MS, i disagree with this. i am very glad my wife shares everything about her condition with me.

the other day she said "this is gross. i need a girlfriend to talk to not my husband"

I asked if she wanted me to wear a wig. :-D

we laughed and then got on with the "gross" details. in some way, i hope i helped by lending her my ear.
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Re: Any Tysabri users want to change my mind?

Postby Jenmen0304 » Tue May 07, 2013 3:24 pm

Maybe I didn't use the right words... I am completely honest with my Hubby, but if I told him every time I had tingling or numbness we would never speak of anything else!! He knows what I have, he holds my hand when I cry, and makes me laugh everyday.. Which I think is the best darn medicine! :) Your wife sounds like a lucky woman!
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Re: Any Tysabri users want to change my mind?

Postby HarryZ » Wed May 08, 2013 4:51 am

Jenmen0304 wrote:Just took my blood test to find out if I have the JC virus(hope I spelled right). If I am negative, the neurologist strongly recommends Tysabri. If I am positive, then they want to go with Avonex. Being the positive person that I am at 35, I'm thinking I am gonna be negative. So anyone out there in this MS world want to tell me their experience with Tysabri? Anything I should prepare for? I have a three year old and a 5week old... I am fighting for them. I have began to change my diet slowly and will begin a workout regimen when I am healed from c section. I feel like it is a catch 22: Take meds and get sick from them maybe OR don't and play Russian Roulette. Everyone in my life just says how positive I am and how I will be fine... I keep my symptoms from my husband because I don't want to worry him. Anyways, your experiences with it would help :)


I'm not a Tysabri user but have certainly followed its introduction.

Can we presume that your level of disease activity at this point is low? Often, during pregnancy, many of the typical MS symptoms go away or are masked. Statistics show that after birth, however, the chances of an exacerbation increase. There have been studies done on this and some think it is due to the hormone changes that a woman goes through with pregnancy.

Tysabri is normally prescribed for those MS patients who have tried other medications and have not obtained any positive results. It is a very powerful immune system altering drug that can cause several problems after using it for a couple of years. I sure hope your neuro has taken the time to explain this to you. If not, insist that he/she does.

I can't stress enough the importance of a healthy lifestyle which includes proper nutritional eating and good exercise. There are some MS patients who have controlled their disease with good diet and exercise.

It sounds like you have great support from your husband and that is VERY important as well.

Whatever choice you eventually make, be well informed before making it.

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Re: Any Tysabri users want to change my mind?

Postby Jenmen0304 » Wed May 08, 2013 8:30 am

Thank you for your post Harry!! I thought I am only having few symptoms (tingling, numbness) but after looking on here, I realized I have been having numerous other symptoms (pain behind left eye, burning sensation in legs, etc). So I am grateful for this forum to help educating newbies like myself!! They are giving me the option of Tysabri, Avonex, or the new one-Tecfidera sp?....I have an MRI tomorrow to see if any new activity since last year and then I go back to neurologist to make decision. After looking up facts of Tysabri, I have to be honest- it scares the heck out of me. Maybe they are just being aggressive from the start? I have begun to take D3 daily and am changing diet. Also plan on full regimens of exercise after doc gives me ok (just had c section)... Any help/ suggestions would be kindly encouraged!!!!
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Re: Any Tysabri users want to change my mind?

Postby HarryZ » Wed May 08, 2013 6:19 pm

Jenmen0304 wrote:Thank you for your post Harry!! I thought I am only having few symptoms (tingling, numbness) but after looking on here, I realized I have been having numerous other symptoms (pain behind left eye, burning sensation in legs, etc). So I am grateful for this forum to help educating newbies like myself!! They are giving me the option of Tysabri, Avonex, or the new one-Tecfidera sp?....I have an MRI tomorrow to see if any new activity since last year and then I go back to neurologist to make decision. After looking up facts of Tysabri, I have to be honest- it scares the heck out of me. Maybe they are just being aggressive from the start? I have begun to take D3 daily and am changing diet. Also plan on full regimens of exercise after doc gives me ok (just had c section)... Any help/ suggestions would be kindly encouraged!!!!


Being aggressive with a disease that has no known cause with powerful immune system altering drugs...hmmm, not a good combination!

If you look at all of Tysabri's trial information it all has to do with number of lesion reductions and reduced relapses but not in slowing down the progression of the disease.

As for the exercise regiment....make sure that your program is set up by someone who has experience with exercise and MS. There is a very fine line with MS patients between doing the proper exercises and not tiring out your muscles which is something you really don't want to do with this disease.

Good luck.

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Re: Any Tysabri users want to change my mind?

Postby Jenmen0304 » Mon May 13, 2013 1:08 pm

Just got the call that I am JCV negative. Want me on Tysabri ASAP. Have a doctors appointment on Friday to discuss further. What questions does anyone suggest I ask?? When I sit down with he doctors I am at a loss for words.
Also, Harryz upon research for Tysabri it does state it does in fact slow progression of disease.
I have started my own daily supplement regimen from helpful people here on this forum. Yes I will tell my doctor Friday. Yes I will get blood tests to see what my levels are.


I wish I had all the answers or someone to tell me which meds to go on.... Guess in this game of life I have to make moves on my own huh?
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Re: Any Tysabri users want to change my mind?

Postby HarryZ » Mon May 13, 2013 2:00 pm

Also Harryz upon research for Tysabri it does state it does in fact slow progression of disease.


From what I read, there has never been a trial with Tysabri to measure end points for disease progression. Would appreciate if you could point me in the right direction to the article which shows what you discovered. Thanks.

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Re: Any Tysabri users want to change my mind?

Postby Jenmen0304 » Mon May 13, 2013 4:25 pm

"2. Slows down the progression of physical disability.

People who were treated with TYSABRI were 42% less likely to develop worsening physical disability — 29% of people who received a placebo had their physical disability worsen, versus only 17% of people who were treated with TYSABRI.



Of the 627 people who took TYSABRI in the 2-year study, more than 8 out of 10 had no physical disability progression."

From Tysabri.com

Harryz am I wrong or just clueless? I'm new to this MS research and can use all the help I can get :)
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Re: Any Tysabri users want to change my mind?

Postby HarryZ » Mon May 13, 2013 6:21 pm

Jenmen0304 wrote:"2. Slows down the progression of physical disability.

People who were treated with TYSABRI were 42% less likely to develop worsening physical disability — 29% of people who received a placebo had their physical disability worsen, versus only 17% of people who were treated with TYSABRI.
Of the 627 people who took TYSABRI in the 2-year study, more than 8 out of 10 had no physical disability progression."

From Tysabri.com

Harryz am I wrong or just clueless? I'm new to this MS research and can use all the help I can get :)


I guess a lot depends on how you interpret this kind of information.

The numbers they quote are compared to placebo patients. 29% of these patients had disability progression which means 71% of the placebo patients did not have any progression. The very nature of MS, being remitting and relapsing in most cases, makes it very difficult to determine just how well any kind of medication is working.

They quoted that 8 out of 10 patients who used Tysabri did not have progression for 2 years. But using their numbers, one could state that 7 of 10 placebo patients did not suffer progression either. And for MS, two years of data is a very short period of time.

After my wife suffered her first attack at age 21, she went 20 years without disease progression. She took nothing...there was nothing to take. Had she used any kind of mediciation, the manufacturer could claim that their drug delayed progression for 20 years.

The CRAB drug makers all claimed that their drugs reduced attacks by about 30% and that MS patients should take them. Huge cost, very minimal benefit and a lot of side effects. They brought out their fancy charts at conferences and "showed" everyone that the drugs really worked. We now know that they really didn't.

Tysabri shakes a MS patient's immune system up hugely. It's no wonder the patient has some kind of reaction. But like most MS patients, some Tysabri users benefit a fair amount, some stay about the same and others become worse with the severe side effects. Are the numbers better than the CRAB drugs...yep..but those numbers were lousy to begin with.

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Re: Any Tysabri users want to change my mind?

Postby cheerleader » Tue May 14, 2013 3:02 pm

Hi Jen--

I hope you'll read this and bring it up with your neuro. Because the inventor of Tysabri believes it is too dangerous to be used as a first line treatment. He warned the FDA not to approve it in 2006.

In fact, the inventor and co-author warned about Tysabri returning to the market in 2006. They questioned the wisdom of the FDA's approval of this drug.

But Steinman and Langer-Gould expressed reservations about the drug returning to the market. They noted that its effects, while impressive, are in general not much better than what is seen with other available drugs: The risk of relapse dropped from an average of two relapses every three years using other approved multiple sclerosis drugs to one every three years with Tysabri.

“Do you want to expose someone to the risk of death for eliminating one relapse every three years?” said Steinman. “I say no.

http://med.stanford.edu/news_releases/2 ... inman.html

I wrote the note linked below for my hubby to take to his neuro when she suggested Tysabri. It has all of the sources linked. She was using scare tactics to get him to take Tysabri---warning him he would progress quickly without it. He brought the note to her, and told her he wasn't interested in Tysabri. Copaxone, diet, exercise, lifestyle and venoplasty have kept him well and active. He's now 6 years past diagnosis, with no MS progression. And now his neuro says he made the right decision.

I know it's scary, and everyone wants the most beneficial treatment.....but that doesn't always mean the strongest immune modulating drug. Look into your other options, and take care.

https://www.facebook.com/notes/ccsvi-in ... 1616067211

cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: Any Tysabri users want to change my mind?

Postby patientx » Tue May 14, 2013 5:29 pm

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Last edited by patientx on Wed May 15, 2013 6:36 am, edited 1 time in total.
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Re: Any Tysabri users want to change my mind?

Postby cheerleader » Tue May 14, 2013 6:04 pm

Jeff is on Copaxone--I mention that above, patientx. I've mentioned it for 6 years now.
I am not anti-pharma. I am anti- overprescribing serious immune ablating drugs as a first line treatment, without understanding the disease mechanism behind MS.
So is Dr. Steinman, the inventor of Tysabri. Tysabri is being prescribed for patients who have not tried the first line DMDs, like you and Jeff did. And that's concerning. Dr. Steinman is now working on developing less toxic drugs, like lisinopril for MS.

And if anyone cares about why I believe Copaxone is the one DMD for MS which makes any sense, they can read Dr. Michal Schwartz's years of publications on protective autoimmunity thru her work at the Weizmann Institute of Science in Israel.
http://www.weizmann.ac.il/neurobiology/ ... z/research

Jen--patientx gives some good advice. I just felt the need to clarify, because he mischaracterized me.
What's most important is that you feel good about your decision, and you have the tools to discuss this with your neuro on Friday.
If you have more questions, please do PM patient or me, or whoever you think might help.
be well,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: Any Tysabri users want to change my mind?

Postby HarryZ » Tue May 14, 2013 6:41 pm

Jen,

If you follow what patientx suggested, then I guess his advice to you should be taken "with a grain of salt!"

He is correct though in saying that I'm not a supporter of the approved MS drugs. Notice I did say "approved" MS drugs because there are other drugs out there that MS patients have used to relieve their symptoms as well as those who have used other means to assist in the treatment of their disease.

In my opinion, the approved MS drugs are terribly over-priced, have minimal effect on the overal well being of MS patients and the companies who sell them spend much more on the marketing and sales of these drugs than what they do on research.

I've particiapted in many MS related sites over the years and ThisIsMs, again in my opinion, is one of the best out there. For the most part, people here respect the opinions of others even though they may not agree with them. There are some, however, who feel that those who disagree with their opinion, have agendas to run and are trouble makers. Nothing can be further from the truth but on any public forum you will always get that kind of person. And he/she will usually make the comment that they participate minimally and don't think this is a good site.

Read the posts, make your own judgement and believe what you choose to. But whatever decision you make regarding your medications, make sure that you are as well informed as possible.

Harry
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Re: Any Tysabri users want to change my mind?

Postby Jenmen0304 » Thu May 16, 2013 6:27 am

"Jeff is on Copaxone--I mention that above, patientx. I've mentioned it for 6 years now.
I am not anti-pharma. I am anti- overprescribing serious immune ablating drugs as a first line treatment, without understanding the disease mechanism behind MS."

Cheerleader I couldn't agree more. It's a scary predicament I find myself. I think I should go on something to stop progression but am unsure of which one. And all this research is giving me a headache- and I usually have them anyway!
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