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Tysabri

Tysabri

After my last MRI, I was told the disease is very active and progressing. Due to this my Dr wants to put me on Tysabri.
Anyone on this or know of someone on Tysabri?
Is this a good treatment to try, good and bad? HELP

A MyMSTeam Member said:

I have been on Tysabri for 5 yrs. It's been good for me. No relapse but at times have, what I call, an infusion hangover(headache) the next day.
Stay strong

edited, originally posted about 6 years ago
A MyMSTeam Member said:

I have a port @Robin65.
Chance of infection is very tiny if accessed and cared for properly in usually a chemo infusion clinic.
Mine is just for blood work because all by veins are not reliable and that is where my fight to get one started - someone has to put their name down to authorize the procedure and be responsible to ensure you get the necessary care afterwards - Your doctor is full of it, PICC lines are where the nightmares are.

Minimum every 4 weeks has to be flushed with saline, chest is swab bed twice to be disinfectant and nurse is in sterile gloves. Everything required comes in sterile packages and is opened on to sterile disposable work surface. (occassionally tiny clots may form in the end of the catheter which get treated with what I like to refer to as Drain-O which they put enough in to fill chamber and catheter).
Not a comfortable feeling to have it accessed, but it is the aftercare that affects chances of infection.
Keep site covered for minimum of 24 hours (no removing bandaid even to bathe till after that time. Next few days till skin puncture is completely healed - stay out of any type of water (pools, tubs, lake, river...) and mindful of the activities you are performing such as - picking up after pets, changing diapers, use hand sanitizer if in public and touching items.

I refused all blood tests for over a calender year because I got tired of being stuck with seperate requests for "mandatory" blood from my: Neurologist, Rheumatologist, Urologist, Dermatologist and family doctor. So important that the get my blood but all not so willing to accept the responsibility of fulfillment of my wishes to as to how to it is collected. Personal worst blood collection experience was 33 butterflies, over 3 hours, too many nurses to count, and still ended up blowing my "good vein" on my right foot.

posted about 6 years ago
A MyMSTeam Member said:

Hello. I did Tysabri after Techfidera failed. Lucky me, Tysabri also did not work for me. I had asked my nuero to let me know what the most aggressive med out there was & Tysabri was mentioned. Stopped all meds on February 2nd & went to do HSCT. Haven't done any DMD since them & feel great. My new neuro recommend as his 2nd choice Lemtrada. This would be my order
1- HSCT
2- Lemtrada
3- Rituximab
They are the only meds that attract the B & T Cells. Good luck on your choice.

posted about 6 years ago
A MyMSTeam Member said:

After being diagnosed in 2005, I was on Avonex then on copaxone and now I've been on tysabri for over 2+ years. Dr is very pleased with the results based on my MRI's. At first I had fatigue and headaches right after and required assistance getting to the hospital's infusion center since it does take a few hrs out of your day but well worth it. My only issue now is that my veins are shot and the nurses are trying to talk me into a port but my dr would like me to hold off due to increase chance of infection, like anything else we need right! I wish you much success if you choose to use this therapy.

posted about 6 years ago
A MyMSTeam Member said:

I've Ben on tysabri fr 18 months. The first year it worked great. Now it des not seem to be wrong for me at this point. Doc. Is going to try some kind of chemo in December I think. Just Ike anything else, it works for some and for some it doesn't. I'd give it a shot if I were you. I know many people who have been on it for years and it works. I'm just not one of them. Good luck, God bless

posted about 6 years ago
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