Tysabri

[DANCER1952]

Recently diagnosed with MS (November) and they are starting me with the drug Tysabri. Trying to find out what to expect and if it is helping others with their symptoms?
All new to this, really have no idea what I need to know or ask? Just looking for someone with some insight on what I will experience.  
Thank you, the person who hasn't told anyone :(
  

[ConfirmedRachel]

Hi there,
I'm coming up to one year end of Feb, started my DMD in Sept. It makes everything that has been surreal much more real starting meds. I did cry when I started if I'm honest, on my own, but I did.
You say you've not told anyone, this group is fantastic to make virtual buddies who understand your questions and emotions probably as well as anyone can aside from yourself. Perhaps make some friends here and they can help guide you through that difficult part of telling others where you need to?

This group was a real life line to me and there are some wonderful, caring and knowledgeable people on here. Take full advantage of that, we're all in it together xx

Ask whatever you want, really anything, there will bound to be someone who has experienced the same at some point - join us all up together and you have a lot of understanding going on.
Nx

[kwarendorf]

I was on Tysabri. For 20 months. During that time I saw no significant advancement on my MS. I also has absolutely no side effects.

I stopped for 2 reasons; I converted to JCV+ and the drug stopped working. It's important to recognize that Tysabri and other DMDs are nt meant to treat sysmptoms. You are not likely to see siginifcant symtom reflief fromTysabri. It is meant to keep your MS from progressing.

Kyle

[immisceo]

Disease modifying drugs do NOT treat symptoms. You will discuss medications for your symptoms (such as fatigue, muscle spasticity, etc) separately with your doctor. DMDs play the long game and aim to reduce the number of relapses experienced over time.

Your doctor or nurse should have given you the drug information packet when presenting this to you as their recommended option. If not, you can go to Tysabri's website or the NIH website to find published papers and statistics on its usage.

I don't take Tysabri myself, but I do take a once-a-month DMD, and for me it's perfect. I don't want to have to think about something more often than that. I have MS, but I like it to have as little an impact on my day-to-day life as possible.

[savvycs]

I was started on Tysabri as my first ms drug. Just got my 7th infusion.

In addition I just had my first follow up MRI since diagnosis 9 months ago and I am happy to report no new lesions and no enhancements. I guess the drug is doing its job. I was very apprehensive at first. My JCV titer is 1.8.

The monthly infusion is 1 hour plus up to an hour of observation to ensure you are tolerating the drug. My observation time is now 20 minutes. I have not experienced any side effects from Tysabri.

Welcome to the group!

Gina

[HVAC]

I have never been on Tysabri. I know a lot of people who were very happy with it. Each person is different. No two people have the same experience. Our bodies are all different. All you can do is give it a try. Have the side effects in mind but know that you will probably not get most of them. By law they have to list them. Some people do not like infusions. I like infusions. I had a situation for cancer when I could take pills instead of infusions. I had to take 16 large pills a day. I was so glad to get back on infusions.

The scary part of starting a disease modifying drug is it makes MS real not theoretical. If you were diagnosed in November this is still really new for you. Especially with the holidays. Your doctors have been busy with the holidays.

Alex