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Thursday, January 8, 2009

New Tysabri Poll (January 8, 2009)

It's been a while since I last created a Tysabri Poll and although this is not official, it will help many, to better understand questions that they might have.

Again, since we have not done this in quite some time, it would be nice to hear from those using Tysabri.
This will allow Tysabri speculators or those trying to make a decision, to know more about this MS Medication.

Answers should be left as comments to this blog posting.
And as Always, I thank and appreciate all of those who leave their comments...

Poll questions originated from various sources, including Lauren in Ca.
No need to answer all questions. Reply to whichever, or all.

  1. For how long have you been using Tysabri ?
  2. How many infusion have you had?
  3. From the start of using Tysabri, how long til you began feeling better and what was it that you felt that made you feel better?
  4. Did you find that you were starting to see improvements in your symptoms (even slight improvements) somewhere between your 4th & 6th infusion?
  5. Do you find that with each infusion of Tysabri there is now hope in your life?
  6. Is your MS now stable since being on Tysabri therapy?
  7. Have the recent cases of PML caused you concern enough to stop Tysabri treatments?
  8. How has Tysabri changed your life? Specifically your day-to-day living?
  9. How has Tysabri changed the way you look at MS?
  10. What would you tell or advise, to an MS peer, contemplating the use of Tysabri?
Again - Please reply by clicking the comments link.

THANK YOU
Regards,
Stuart

11 comments:

Anonymous said...

I started Tysabri infusions on April 24, 2008. I will have my 11th infusion on Jan 28, 2009. I started feeling better after the 3rd infussion and by the 6th the fog around my brain had cleared. Tysabri has given me great hope of someday returning to a normal life. I seem to feel better after every infussion. My brain is telling my body "you can do this", but my body has not caught on yet. I don't really worry about PML, I sympathize with those that have to endure another disabling or fatal illness. MS is cruel enough.I have been stable since starting the infussions. The Tysabri has made me feel a little more comfortable being around others, I can have a decent conversation without struggling to find the words or forgetting what I am talking about. I'm a little dissapointed that I still have foot drop, but overall I am pleased with the results. Tysabri is a great hope for those that do not respond well to the ABCRs and I beleive it is well worth the risk.

Tim Benefield
tben97@yahoo.com

Laurie said...

Hi, I had 2 infusions before the recall. Now I'm going for my 20th infusion depending on my blood work for the JC VIRUS. Yes , I'm very concerned about getting PML. Thank G-d there's a blood test to rule it out. Just had a MRI and everything is good!! I started feeling better right away. I'm happier too. I've got my life back!!!
Hope this helps.

Lauren said...

I have been Tysabri therapy for more than 2 years..., to answer your poll questions:

1. Over 2 years
2. I have had 29 infusions
3. After the first three infusions, I could start moving my feet again a little bit, and my bladder issues were completely resolved, and my balance started improving as well.
4. See #3 above
5. Absolutely, for me, hope grows with each infusion I received.
6. My MS is completely stable and has been since starting Tysabri in October 2006.
7. I am not worried in the least of PML because I am not immune compromised (most MS patients are not immune compromised).
8. Yes
9. I am glad & happy that I no longer have to abuse my body with shots that make me sick with side effects..., I look forward to my infusions every 28 days instead.
10. I would tell a MS patient contemplating Tysabri not to be afraid of the medication, and to discuss Tysabri fully & as questions of their neurologist about the medication..., but remember, do not be afraid of this medication as it is 67% effective at reducing the risk of further relapses, slowing the disease process down, and gives you the opportunity to have improvements in your symptoms, providing prior relapses have not left permanent damage. Time Is Brain!

Anonymous said...

Hi Stu,

I will celebrate my 21st infusion of Tysabri on January 21. I lived life in a wheelchair for four years. After three infusions, my legs showed movement, and I was off to PT. I love my life again!!! If Tysabri was taken away from us in the US, I would swiftly relocate.

Interferons just did not do it. Mono clono anti body, Tysabri, pulled me out of my wheelchair and in to a fabulous new life

Joe Jendusa

Robin said...

1. For how long have you been using Tysabri ?
I am going for my 16th infusion tomorrow.

2. How many infusion have you had?
See above

3. From the start of using Tysabri, how long til you began feeling better and what was it that you felt that made you feel better?
By about the 3rd month, I noticed my bladder issue had almost disappeared. Since I have hand/feet neuropathy due to axonal damage, there is a limit to my improvement level.
4. Did you find that you were starting to see improvements in your symptoms (even slight improvements) somewhere between your 4th & 6th infusion?
Before that, as above.
5. Do you find that with each infusion of Tysabri there is now hope in your life?
More than anything, the hope is for no further decline-I do feel that I can 'hold' my position.
6. Is your MS now stable since being on Tysabri therapy?
Yes.
7. Have the recent cases of PML caused you concern enough to stop Tysabri treatments?
I've come close....but until something else comes along; ans I had an MRI that determined no PML...so I'm good to go.

8. How has Tysabri changed your life? Specifically your day-to-day living?
9. How has Tysabri changed the way you look at MS?
10. What would you tell or advise, to an MS peer, contemplating the use of Tysabri?
Review all of your options. I've been on betaseron, and had to stop, due to liver damage; I was oon Copaxone and had to stop due to lipoatrophy...there was no other option.

Mary E. said...

From maryemcl@hotmail.com (Mary):

1. For how long have you been using Tysabri ?

--about 1 & 1/2 years

2. How many infusion have you had?

--17

3. From the start of using Tysabri, how long til you began feeling better and what was it that you felt that made you feel better?

--my hands/fingers became less weak & more coordinated after about the 3rd or 4th infusion

4. Did you find that you were starting to see improvements in your symptoms (even slight improvements) somewhere between your 4th & 6th infusion?

--yes (see above)

5. Do you find that with each infusion of Tysabri there is now hope in your life?

--not any new hope w/ each infusions, but beginning Tysabri treatment gave me much hope

6. Is your MS now stable since being on Tysabri therapy?

--no; it's worsening

7. Have the recent cases of PML caused you concern enough to stop Tysabri treatments?

--no

8. How has Tysabri changed your life? Specifically your day-to-day living?

--it has made it easier to do my work, take care of myself, & and do minor tasks that require hand/finger coordination/strength; also, this doesn't really impact my day-to-day living, but my blood pressure went down (because I got off Copaxone, which had increased my blood pressure dramatically)

9. How has Tysabri changed the way you look at MS?

--no change

10. What would you tell or advise, to an MS peer, contemplating the use of Tysabri?

--get all the relevant info. that you can about Tysabri and other disease modifying therapies before deciding; knowing what I know now, I would still choose Tysabri because of research demonstrating its relative effectiveness, lack of immediate side effects, & low risk

Kim M said...

I am signing up for a Tysabri trial for those with SPMS... I am taking nothing now and hence I qualify-- gotta do something proactive and keep the quality of life up and all. Thanks for the posts-- it is helping me make a decision!

Kim

Anonymous said...

Had my infusion today. Everything was good in my blood. NO JCV
Take Care,
Laurie

Anonymous said...

For how long have you been using Tysabri ?

Took it for 18 months.

How many infusion have you had?

Had 18

From the start of using Tysabri, how long til you began feeling better and what was it that you felt that made you feel better?

Could see a small improvement before the 2nd infusion. Increased strength and reduced muscle cramping were the biggest improvements.

Did you find that you were starting to see improvements in your symptoms (even slight improvements) somewhere between your 4th & 6th infusion?

Improvements kept steadily increasing for about a year - not as fast or as dramatic as Novantrone, but they started sooner.

Do you find that with each infusion of Tysabri there is now hope in your life?

Until it stopped working, yes.

Is your MS now stable since being on Tysabri therapy?

Started a downhill slide after a year. Am now on zenepax which is working even better than the Tysabri.

How has Tysabri changed your life? Specifically your day-to-day living?

Definite improvement for a year, then it stopped working although I took it for another 6 months. I did not have antibodies.

What would you tell or advise, to an MS peer, contemplating the use of Tysabri?

Try it - even though PML is serious, it is very rare. If you start now, there will always be a large cohort of people who have been taking it for years longer than you.

If the risk goes up as time goes on, you will be able to stop before your personal risk escalates by watching what happens to those who have been taking it longer.

I had absolutely no side effects of any kind from taking it.

Anonymous said...

No need to answer all questions. Reply to whichever, or all.

1. For how long have you been using Tysabri ?
ALMOST 2 YEARS

2. How many infusion have you had?
23 INFUSIONS

3. From the start of using Tysabri, how long til you began feeling better and what was it that you felt that made you feel better?

I KNEW I WAS DOING SOMETHING THAT I COULD FIT INTO MY LIFE TO KEEP THE MS MONSTER AT BAY

4. Did you find that you were starting to see improvements in your symptoms (even slight improvements) somewhere between your 4th & 6th infusion?

MY SYMPTOMS ARE MINIMAL AND NOT TOO LIFE IMPAIRING... THEY ARE STILL WITH ME- BUT NOT WORSE... AND NOTHING NEW IN 2 YEARS

5. Do you find that with each infusion of Tysabri there is now hope in your life?

I JUST FEEL THAT THE MRIS THAT I GET EVERY 6 MONTHS FOR 2 YRS HAVE SHOWN NO NEW LESIONS... THAT IS A GOOD THING- SO IT MUST BE WORKING....

6. Is your MS now stable since being on Tysabri therapy?

YES

7. Have the recent cases of PML caused you concern enough to stop Tysabri treatments?

OF COURSE THEY ARE OF CONCERN BUT I KNOW I AM BEING WATCHED THRU THE TOUCH PROGRAM... AND I EXPERIENCE NO SIDE EFFECTS FROM THE DRUG- I JUST HAVE TO BE SURE TO HAVE PERIODIC BLOOD TESTS FOR MY LIVER- MRIS TO CHECK FOR THE PML AND SEE A DERMATOLOGIST TWICE A YEAR AND ALL WILL BE WELL-

8. How has Tysabri changed your life? Specifically your day-to-day living?

I KNOW I AM DOING THE BEST I CAN TO PREVENT ANY ACCUMULATION OF DISABILITIES CAUSED BY NEW LESIONS

9. How has Tysabri changed the way you look at MS?


THIS DRUG IS SO DIFFERENT FROM ALL THE OTHER OPTIONS-
I FEEL VERY LUCKY NOT TO BE GIVING MYSELF A SHOT EVERYDAY AND I KNOW THAT THERE ARE EVEN BETTER DRUGS HOPEFULLY ON THE HORIZON FOR ALL OF US TO CHOOSE FROM

10. What would you tell or advise, to an MS peer, contemplating the use of Tysabri?

I BELIEVE TYSABRI IS THE BEST CHOICE FOR US OUT THERE AT THIS TIME...
VIRTUALLY NO SIDE EFFECTS- AND YOU ARE OBSERVED EACH MONTH BY HEALTH PROFESSIONALS- YOU ARE NOT HOME ALONE INJECTING YOURSELF AND HAVING NUMEROUS SIDE EFFECTS THAT AFFECT YOUR LIFE-
INSTEAD-
YOU LIVE YOUR LIFE AND ONCE A MONTH GO TO SEE THE DR. AND RECIEVE AN INFUSION FROM A SKILLED NURSE WHO CHECKS YOUR BLOOD PRESSURE AND TEMPERATURE TO MAKE SURE YOU ARE NOT HAVING ANY BAD REACTION AND CARES ABOUT YOU AND YOUR HEALTH

Suzanne said...

For how long have you been using Tysabri ?
I received my first infusion of Tysabri in November 2007.
How many infusion have you had?
14 infusions
From the start of using Tysabri, how long til you began feeling better and what was it that you felt that made you feel better?
I began to feel better around the
second or third infusion.
Did you find that you were starting to see improvements in your symptoms (even slight improvements) somewhere between your 4th & 6th infusion?
Yes, I did see some slight improvements. However, my MS has not immobolized me yet so my problems are mostly cogvitive issues and tiredness. Both these symptoms improved with Tysabri.
Do you find that with each infusion of Tysabri there is now hope in your life?
Tysabri definitely gives me hope that a cure is closer than ever before.
Is your MS now stable since being on Tysabri therapy?
Yes but I'm having a few complications that have required blood work(breaking out in hives during the infusion, increased headaches). I'll see the doctor this week to discuss complications
Have the recent cases of PML caused you concern enough to stop Tysabri treatments?
No, I'll only stop Tysabri on my doctor's orders since it is so much better than interferons.
How has Tysabri changed your life? Specifically your day-to-day living?
My life with Tysabri doesn't have to revolve around shots and yucky side effects. I only have to be concerned with fighting my MS with an infusion once a month, not daily or weekly. This is so liberating!
How has Tysabri changed the way you look at MS?
What would you tell or advise, to an MS peer, contemplating the use of Tysabri?
Ask your doctor and talk to a trusted person who has been on Tysabri. No MS treatment is right for everyone, but Tysabri is so much better than the other options.