My Tysabri Story

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

My Tysabri Story

Postby Kemond » Fri May 04, 2007 10:31 am

I finally got to see a Specialist (only a 4 month wait) and she was great. After viewing my MRI (I had over 25 leisions in my brain area), she was concerned that I was being treated solely with Copaxone (on for approx 6 months), and immediately ordered another MRI.

Good news - some of the leisions went away completely (no scarring), Bad news - but many more appeared (over 30 at her current count).

She suggested I choose one of two courses of action:

Monthly steroid infusions, with combined oral immunosuppressants, and REBIF.

or

Three consecutive days of steroid infusions (one time only) with monthly infusions of Tysabri.

Although I know leisions do not equate to the severity of the disease (I have had only sensory issues - thank goodness), she felt getting the many inflammed leisions under control was important. In her opinion catching MS early without a significant attack was great, but we need to treat it more aggressively.

I chose the Tysabri. I can always go back to the combined Rebif/Steriod/Immunosuppressant course, if it doesn't work.

My first steroid infusion is 5/14 for three consecutive days, and my first Tysabri infusion is June 13th.

I thank you for posting your experiences, it has been very helpful, and I will post my experience after the infusion...
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Postby Kemond » Thu Jun 14, 2007 10:37 am

So - I had my first infusion yesterday. I did not have an adverse reaction to the actual infusion or the medication this time out. I did get a headache of epic proportion about 3 hours after the infusion was complete, but some Tylenol PM cleared that up and let me sleep. We'll see what happens next month.

Unlike many people, currently I only have sensory issues (and luckily none at the moment), but my MRI was pretty scary and they wanted an aggressive treatment regimen, Copaxone wasn't cutting it. So, I can't testify as to whether or not it will clear up any symptoms for me. If I don't have any issues with the med going forward I will do it for 6 months, and then have another MRI to see if any of those "inflammed lesions" clear up.
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Postby robbie » Thu Jun 14, 2007 11:02 am

I will do it for 6 months, and then have another MRI to see if any of those "inflammed lesions" clear up.

Hi Kemond i am not trying to be sceptical if thats even the right word, but how do you know it's even the drug that changes your mri, i saw my neuro yesterday and she said the more we know about ms mri's are proving to be usefull only to detect early diagnoses and the pictures can be different from one day to the next i believe she said it was like taking one still picture frame out off the middle of a motion picture.
Had ms for over 19 years now.
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Postby Kemond » Thu Jun 14, 2007 11:11 am

I don't know that the Drug will change my MRI, but I was diagnosed early, and have luckily not suffered a severe attack. It just seems to me that I should be doing something to try to treat the disease, because I know I have it, and don't have any symptoms at the moment. I guess what I was trying to say, is that because I don't have pain or loss of use of my limbs the only way for me to see a difference - at the moment - will be MRI related.

This disease is such a crap shoot and is different for everyone, I just hope that each person does what works for them, and passes it along so that someone else may be helped. (I don't mean the drug companies, I mean others with MS).

Kristen
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Postby robbie » Thu Jun 14, 2007 11:49 am

but I was diagnosed early, and have luckily not suffered a severe attack.

So was i Kristen and i have never really had a severe attack, i have been lucky in that regard. I saw and read the fancy brochures on Tysabri in her waiting room..I think i have read every brochure and magazine in that room.I know i shouldn't post here but i like to read about the new stuff, for me it was beta interferon. I can still remember my family doctors receptionist calling me to tell me the good news.
Had ms for over 19 years now.
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Postby superman » Thu Jun 14, 2007 11:52 am

Dear Kemond
I do totally agree with you.
Do not believe people who tell you medicine can not help you.
Looking at the results and reports of patients themselves, Tysabri is the most efficient drug at the moment.
All the best for you.
And remember that out of 10000 people under Tysa, just 2 died and still it was in combination with Copaxone. So nothing to worry, compared to the risk of finishing in a wheelchair. :wink:
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Postby robbie » Thu Jun 14, 2007 12:01 pm

So nothing to worry, compared to the risk of finishing in a wheelchair

amen..
Had ms for over 19 years now.
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Postby Kemond » Thu Jun 14, 2007 2:57 pm

I am strangely not all that concerned about PML (which is crazy for me, because I am a worry wart). I hadn't taken anything but Copaxone, and they were more concerned about the interferon/Tysabri mixture.... I am open to all treatment options - conventional or not. I count myself lucky every day that I wake up without a new issue.

I had a baby about 3 years ago and had been waiting for the pregnant brain to go away, but lo and behold I have MS, and that is why my memory is foggy.... small price to pay to still be walking, seeing etc... My husband gets a catalog from this website thinkgeek.com, and they sell a t-shirt that simply says (insufficient memory) - I HAVE to get it.....

Thanks for your responses, the best part of this forum is the real life experiences everyone shares.... I was OK with Tysabri, because I heard MS patients say it worked for them - not the Doctors....
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Re: My Tysabri Story

Postby NHE » Thu Jun 14, 2007 4:21 pm

superman wrote:And remember that out of 10000 people under Tysa, just 2 died and still it was in combination with Copaxone.

Actually, it was Tysabri in combination with Avonex.

NHE
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Second Infusion

Postby Kemond » Sun Jul 15, 2007 6:56 am

Had my second infusion on the 11th. Went off without a hitch. My only side effect is a headache about an hour after the infusion which can be treated with Tylenol. The next day I don't even have a trace of a headache. Of course I am exhausted as well, but I can't decide if it is the drug, MS fatigue, or the fact that I have to drive an hour and a half to get to the infusion center, and then of course home.

Again, I am not sure if it is working for me because luckily I don't have any obvious physical symptoms yet (although my memory loss is driving everyone - including me CRAZY!), and that is what would determine its effectiveness on the surface. I am scheduled for another MRI in Oct I believe and then we'll see if the leisions are easing.

Kristen
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Postby ewizabeth » Fri Jul 27, 2007 8:42 am

Hi All,

I get my third Tysabri infusion on Monday. So far, so good. :) I was extremely skeptical (for at least a year), and I think I may have to eat some of my own past words in regard to Tysabri.

I can feel when it's nearly time for the next infusion. I get more fatigue, increased fogginess, etc... It started yesterday for me, four days before infusion number three. Last time it was a full week before my second infusion.

I can feel some improvements, and this is good. I still have disability in various forms, many of them not glaringly obvious unless you know me. But so far, I'm very happy with Tysabri and feel quite fortunate to be getting it.
Take care, Ewizabeth Previously Avonex, Rebif & Copaxone RRMS ~Tysabri, 31 infusions, ended 9/09. Starting Copaxone 12/09, waiting for Cladribine to be approved in 2010.
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