Experiences with Tysabri

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

Post by leetz » Fri Aug 02, 2013 9:58 pm

oh sorry forgot! tested JC Negative..
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...

Keleia
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Tysabri

Post by Keleia » Sat Mar 29, 2014 6:09 pm

Looking into treatment with Tysabri. I'm 54, diagnosed in 2011. Probably had RRMS for at least 15 years...Started Copaxone in November of 2011, but now doesn't seem to be working for me. I'm JC Virus POSITIVE, and my neurologist wants to try me out on Tysabri. I was feeling better about it yesterday, but today...not so much. I'm very concerned of the high rate of contracting PML with a positive JC virus test...I need more information than I seem to be finding, but I want REAL numbers, REAL people to "talk" with about this. Please, if you are in the same situation, but have made your decision, I would like to know what your decision is and why you chose the decision that you have. Thank you so very much!
“Success is never final and failure is never fatal. It’s courage that counts.”

~Jules Ellinger~

keshina90
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Re: Experiences with Tysabri

Post by keshina90 » Wed Apr 16, 2014 5:23 pm

Hi All :)

Below is my experience with Tysarbri so far. I was diagnosed with MS on the 1st of February 2013

I started on Tysabri on the 25th of September 2013 and have not looked back.
I diagnosed on the 1st of February 2013 and my first treatment was Rebief. Unfortunately it was not the treatment for me as it was not working and I was getting some bad side effects even after 6months. On my 6month check-up I was told it was time to give it up and try something new. I found this to be scary as hell after everything I had just gone through and was worried it would be the same on a new drug.
I decided to go with Tysabri and haven’t looked back. I go to the hospital for my appointment every 4th Thursday to get my infusion and it only takes 2 hours, 1 hour for the infusion and 1 hour to be watched. The only side effect I get from it is a headache after the infusion for the day but I am all good the next day. I try to return to work after my infusion and most days I can, the only time a find it hard is if I was feeling a little under the weather before the infusion.
I love my new treatment as I find it so much nice not to have to infect myself 3times a week. This was instead of having 12 needles in 4 weeks it is only 1.
Every 6-12 months I am having my JC virus check and so far it has been coming back negative.
I have just had the results back from my MRI and they have confirmed that Tysabri is working for me.

koneall
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Re: Experiences with Tysabri

Post by koneall » Tue Aug 29, 2017 2:10 pm

This is an old thread. I was Dx'd with MS three months ago after having an attack of vertigo. Then arm pain from blood clots raining emboli into my chest. All of that has stopped. I still take blood thinners. JC virus negative. I start tysabri next week. The neurologist arranged with the local hospital to have it on hand. Otherwise it's a three-hour drive to get to the next hospital. So everything tells me it's fate, I'm lucky it was caught before suffering severe complications. I'm 60 yrs old and never had a serious disease. Except MS. Right now I feel normal. No signs, no symptoms, no problems. The medication makes me tired and I have less interest in exercising. I was a marathon runner until this happened. I've read here that the tysabri gives patients a bit of a lift. I'm hoping to get back to running races eventually.

kaypeeoh

koneall
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Re: Experiences with Tysabri

Post by koneall » Wed Aug 30, 2017 1:18 pm

No problems from the infusion. The infusion center is a converted home with leather reclining chairs and a big TV on the wall. The nurse didn't wear a smock or greens, just normal clothes. Maybe that's why I didn't have white coat syndrome; My pulse was 50 and BP was 100 over 62. She couldn't get a catheter into my right antecubital vein and blamed it on scar tissue; I've donated blood 3 or 4 times a year to the Red Cross for over 30 years. But she found a vein near my wrist. She said patients tell her the tysabri treatment is like a fog lifting from their minds. Personally, no sense of a fog lifting. Also no side effects like a rash or headache. So basically no problems from the infusion. The infusion started at 10 AM and I was back home by noon. Now, at 3PM still no reactions noted as I sit at work waiting for afternoon appointments to begin.

kaypeeoh

koneall
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Re: Experiences with Tysabri

Post by koneall » Fri Sep 22, 2017 7:16 am

I go for the second tysabri infusion on Friday. No problems from the first treatment so I'm not expecting any problems now. I had ultrasound of my left arm and shoulder last week and still waiting for the doc to let me know the results. I've had pain in that area since before the MS diagnosis. I'd like to know whether the pain is from the MS or from blood clots in the muscles. That's what the neurologist thought might be the cause.

kaypeeoh

koneall
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Re: Experiences with Tysabri

Post by koneall » Sat Oct 07, 2017 7:39 am

Ultrasound shows no clots in the arm or shoulder or rib cage. But still painful. The doctor says it might be phlebitis. Which means I have to live with it for the next 3-6 months.

kaypeeoh

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