First Infusion will be on May 22, 2015

[Teekybird]

I have a date scheduled for my first infusion. It will be Friday, May 22, 2015.

(pending employer approval and insurance details).

[toot2818]

Teekybird, think positive on your insurance approval. Have you been contacted by Active Source? They can help with co-pay info. 1-800-456.2255.

Where will you get the infusion? Is it a clinic? They should also help with approval and stuff.

Good luck and keep us posted.

Toot

[LL60]

Teekybird -

I just wanted to jump in and wish you well as you start your journey. Tysabri is the best drug out there for some people; nothing comes close. Stay up to date and study all you can about it and the tests you need to stay safe while taking it.

Plan for that fist infusion. Take a book, take some music, take a friend who won't be bored with the 2 or 3 hours it takes. I had my husband come with me because I wasn't sure I could or should drive home. That was the only time I took someone. I no longer take the premeds because benadrly would make me sleepy and have no problem driving home. Remember, pre meds are ordered routinely many places, that doesn't mean that you have to take them. Drink a lot of water the day before to make sure you aren't dehydrated and to plump up your veins. If you work, see if you can take the day off. I got my infusions on a Friday the first few years so I could spend the weekend "recovering." Never needed any recovery time after the first couple, so changed to a Tuesday so I could free up my Fridays.

You do have to plan around the every 4 week schedule, but that it easy. You need to have your doctor order guidelines for you. As an example, I can go 1 day before or 7 days after the set 4 weeks if something comes up, like a planned trip or something. It is a minor inconvenience for what could be an amazing drug for you.

I had a headache after the first one. That has been my only problem. Seems many do. Just be ready and don't let it concern you. I started noticing a difference after about 3 months and by 6 months there was a huge difference that all my doctors took notice of. Many of my symptoms are now gone and haven't been around for the past 5 1/2 years. I will finish up with my 6th years on Tysabri next month. I just had #72 yesterday.

If your insurance doesn't cover the cost, call Biogen. They pay 100% of my costs. Infusion costs too. Not sure what you meant by employer approval. Hope that works out for you too. I just take a sick day or vacation day. Because of HIPPA lows they can't ask you any questions. Between that and the ADA laws there shouldn't be any problems.

Tysabri for me as been like a cure. But, my doctor tells me that I have had an awesome response to it that she hasn't seen in his other patients. So, I can only share what it has done for me. I have been JCV+ probably the whole time. There was no test when I first started. My numbers go up and down. High as 4.1 and as low as 2.4. I just had the new test done that checks on a specific white blood cell and my numbers where very high, which for this one is good, and my doctor feels better about keeping me on. He has spend the last 3 years trying to get me to go off of it. But, why would I give up something that works for me? It works and I have no side effects. I am very aware of what to look for concerning PML and am very aware of what life is like with the horrors of contracting it. For me it is a no brainer staying on Tysabri. It is one of life's hardest decisions though, and not to be taken lightly.

Read. Read. Read. You have to be your own advocate. No way can your doctor stay on top of every little new thing that comes up. The Biogen people will check in often with you at first and always ask if you have questions. Don't waste your time. They will almost always tell you to ask your doctor or give you a vague response. I have had many conversations with them trying to get information. Financial websites are a good place. After all, health care if a big business. The MS Society in Great Britain is a good place for easy to ready articles and also our very own NMSS. These message boards can be a wealth of information. The people here have helped me hugely over the years.

When I was diagnosed years ago, there were not many drugs out there. There is a huge list now. The newer ones are much better ones; but they also come with more side effects. It is a hard trade off. I hope your choice turns out to be a great one for you. I hope that your MS is stopped in its tracks.

Let us know how the first one went. You will learn how to make the most of your infusion day. The first couple of years I would go home and go to bed. They sort of wore me out. I don't even do that anymore.

Sorry if I went long. Just felt like sharing.
Been on the computer all morning reading about the new drug Zinbryta. Which, once again, isn't really a new drug - been around for treating people who have had kidney transplants. And once again, this is a cheap drug that now will cost a fortune, because we MS patients seen to be responsible for the huge huge costs of developing and researching drugs for MS, even when most of the ground work has been done! Such is life.

Have a great day.

[22cyclist]

Good luck on your first infusion, I am on 35 now. I am JCV+. I hope you stay negative for the first couple of years. It has been a great drug for me. No new lesions. I am so happy.

For your first infusion bring a big cup of tea or coffee that will ward off the headache. It happens at 2 and 3 too for me. After that all I get are itching occasionally, and chest pain all helped with Benadryl.

Take care
Lisa

[toot2818]

interesting responses

LL60 & 22cyclist, thanks for your info. Teekybird, I just has second infusion. When I go, nurse gives me 1 Claritin. I didn't need coffee to keep me awake. They have TV to watch. After #1 I did lay low for they day but after #2 I just did my normal stuff. I did not have any headache or itching. My husband drops me off then picks me up. I do not work, have been on disability since 2009.

LL60 I'm looking forward to improvement in my walking, depend on walker all the time. Hope you are right and this drug is like a cure

I believe 100% of my infusion has been coved by a grant.

Again good luck Teekbird and keep us posted

Toot