Calling all Tysabri Users...

Arron · Last edited by Arron on Wed Mar 29, 2006 11:47 am; edited 1 time in total

Please use this thread to keep the community posted on your experiences with this new therapy. The more detail, the better, as most everyone is very curious about this option and there is no more honest opinion than that of the patient.

Obviously at this early point, the reports will be limited to descriptions of the infusion and any noted side effects in the early going.

Thanks in advance for sharing!
_________________
Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.

TALEX · Posted: Tue Dec 07, 2004 4:23 pm Post subject: tysabri

Hello to all, yesterday I was infused at my Dr.s office. Was in at 9:45am out by 11:45. 1 hour for the infusion, 1 hour stand by to see if there are any reactions. Thank GOD everything went well. Was told by nurse and TYSABRI rep. that I was the first person in California to receive TYSABRI.

Arcee · Posted: Fri Jan 07, 2005 7:52 am Post subject: first Tysabri experience

by request, another Tysabri account that was originally posted on another thread:

Hello -

I've been reading for awhile now and figured it was time to chime in. I was diagnosed last spring, started Betaseron and had to stop because of liver complications, and therefore can not do any interferson based med. Even did Copaxone for awhile, just in case Tysabri wasn't going to come through. But now I am doing Tysabri (and lots of supplements and diet tweaking).

The infusion on Tuesday [this was written two days later] went fine. It takes an hour and then you have to stay for another hour to make sure there are no adverse reactions. I'm doing it at a busy MS clinic in Boston and the nurses there told me that no one has had a problem yet. The thinking is that any potential problems would come later, particularly with possible antibodies. I felt no side effects of any kind during or since.

If anyone has any particular questions that I could answer, just let me know. I've been impressed with the quality of discourse on this site and am glad to be abe to contribute.

Arcee

LindaR · Posted: Fri Jan 07, 2005 3:21 pm Post subject:

Talex, how are you doing? It should be close to your next infusion, isn't it?

MichelleMM · Posted: Fri Jan 14, 2005 3:26 pm Post subject:

Hello.
I would like to give my input to this forum as a newly diagnosed MS patient. I was diagnosed December 28, 2004 with MS and have received my first Tysabri infusion this past Tuesday, January 11th. The infusion went well without any problems, lasting 1 hour. I did develop a headache that afternoon and a low grade fever (only 1 degree temperature elevation) that evening. I felt a little tired also. The next day, I was back to baseline and able to do my usual daily activities. The headache may have been attributed to the stress of the day, but I thought I would mention it. Since I am newly diagnosed, I don't know what my pattern would be, but I'm hoping that I don't have any further symptoms for a long time. What I currently experience is paresthesia on the left back, side and leg. The tingling is tolerable, but the burning sensation is uncomfortable and the Neurontin I've been prescribed hasn't given much relief. Any input on this would be appreciated. Also, my symtoms began November 26th with varying levels of intensity, but seem to be mostly sensory. I do not have weakness. I'm just anxious about when and if they will subside.
I just wanted to share my experience with the Tysabri and thank everyone for all of the helpful information that I've found here. Confused

DenverCO · Family Elder Joined: Nov 25, 2004 Posts: 106

OK, you guys...let me be the first! I'm having nothing short of miraculous results on Tysabri! I did my first infusion on Tuesday, and my walking is 100% better and easier already and it's only Saturday. My physical therapist was amazed yesterday.
Let me add, drugs work FAST on me, so I don't want to set anyone up for disappointment. But there is a pervasive scepticism about drug companies, progress, etc., and it's not serving us. The FDA approved Tysabri early due to it's phenominal results...I don't believe there's a conspiracy here!
I've been diagnosed for 7 years and have had a continual decline in functioning of my right leg. No relapsing-remitting anything, just a steady deminishment of function. In 2004 it got to the point that I couldn't walk 1/2 block without taking a 5 minute rest. My leg dragged when I walked, and I swung it out and around when going up stairs. You know, that heaving maneuver.
I was circling the drain, and now I'm getting my life back.

Arron · Posted: Sat Jan 15, 2005 12:34 pm Post subject:

I want to thank each and every one of you for contributing your stories. This thread has become a critical resource for many of our members considering Tysabri. Please continue to update us regularly on your progress and for anyone else reading this that is on Tysabri, please share! Smile

_________________
Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.

ramairdad · Posted: Sun Jan 16, 2005 1:46 pm Post subject: tysabri

DenverCo,
I'm glad for you! I'm also trying to get approved for tysabri. I'm unable to walk without a walker or hanging on to something. I'm hoping for some improvement also. I've was diagnosed with MS about 17 years ago(started with tingling legs and has progressed to where I am now). Your story gives me some light at the end of the tunnel. I hope my insuance approves it, otherwise I can't afford it.

ramairdad · Posted: Sun Jan 16, 2005 2:01 pm Post subject: changes

Michelle,
Have you noticed any improvement anywhere? I know this is short time frame.

MichelleMM · Posted: Mon Jan 17, 2005 7:41 am Post subject:

I haven't noticed any difference or improvement in my symptoms, but I hadn't actually expected any. It is my understanding that the drug has no effect on current symptoms, only in helping to prevent new lesions/relapses. I am so glad that you are having an improvement DenverCo and am hopeful that others will too after receiving the Tysabri. If anyone else out there has noticed a difference in symptoms, I would like to hear from them also.
A question to those of you who are on Tysabri. Is your neurologist recommending any follow-up MRI's or labs to check progress or changes? Thanks.

ramairdad · Posted: Mon Jan 17, 2005 2:16 pm Post subject:

I'm sure he will. He is a very good doctor and really understands MS. He has a lot of patients with MS. He is the one doctor who ruled I have MS, when others were just shaking their heads not knowing what was wrong with me at the time. Exclamation

AnneSwift · Newbie Joined: Jan 17, 2005 Posts: 2

My husband seems to be at the primary progressive stage, the one he has been in since his diagnosis a few months back, apparently he skipped the relapsing-remitting stage. He took Avonex for 5 weeks, felt awful for 24 hours after each shot and we both wondered what good(?) it was doing. Our neuro said today they will try Tysabri next and maybe prednisone. A couple of you reported Tysabri should NOT be given to PPS. Are we making a mistake?

paulaviza · Newbie Joined: Jan 03, 2005 Posts: 4

Has anyone noticed an improvement/worsening in vision while on Tysabri?

My wife has had 3 bouts of ON in last 9 months and would like any feedback.

Any available test date re: vision?

Thanks

MichelleMM · Posted: Wed Jan 19, 2005 9:07 am Post subject:

AnneSwift,
I am wondering why you think your husband has the progressive course of MS? Since he was recently diagnosed, I would think that it would be difficult to diagnose this. It is my understanding that the excerbation could last several weeks to months and it is way too soon for you to consider or even think that this is progressive. I would try the Tysabri, all of the data seems excellent and the side effects are so much fewer than the Avonex. Good Luck.

AnneSwift · Newbie Joined: Jan 17, 2005 Posts: 2

Thanks Michelle,
It is just one day over a year ago his right leg started dragging and it has not changed since, along with dizziness, fatigue, et al. So his neuro told us it is the "progressive" kind. It is frustrating to me that the whole remitting thing never happened. But we will try Tysabri. From what I have read on this website it seems it is good for the remitting kind, so I was wondering if anyone out there is on Tysabri and in a progressive stage.