I'm happy to hear you found a doc you can live with, Sheena. Having a neuro you can rely on and relate to is 95% of the battle with this stupid disease!

Cost IS a factor in the decision for most of us, whether on Ty or any other DMD. I know I wouldn't be able to afford to pay out what others have paid to stay on Tysabri. I'd research every avenue and bully my insurance co. and the med center and anyone else I had to if it came down to staying on or going off at this point.

It is soooo darned nice to NOT have to worry week after week, wondering what's going to go haywire next and being scared of how to cover and deal with relapses when working and living life.

I was ready to travel 200 miles to get Ty back when it was first returned to market. I just got lucky that the new neuro decided he liked sailing better than money at this point in his career! 20 miles is a whole lot better to swallow than 200 miles when it comes to traveling!

I think a LOT of neuros haven't got time to do the continuing ed, to keep up on the data coming out about Ty, to do the research, or they are afraid (first, do no harm...) of what they have heard about Tysabri. It's the docs who ARE keeping up who are prescribing and giving MS patients a chance to have some QOL and reduction of symptoms and progression.

Tysabri isn't the answer for everyone and it isn't a cure, but it IS the answer for me and my MS at this point, and for a whole lot of other folks too.

As far as doing the "roids, my neuro put me on a course before I had my first infusion. I was in a relapse and his feeling was and is that NO relapse is a good relapse, that time IS brain, and that it's an all out no holds barred fight when it comes to retaining brain/CNS function, and I agree.

Let us know how it goes!:)

Had my 4th infusion today.

Iam very pleased with how I feel with it. Today after my infusion I got itchy so they kept me longer to watch me it gotsome better so I asked to leave. I was advisedto get Benadryl and I did on mmy way home.

I took one had to go pickup my husband came back and took a nap. Well he picked up pizza for dinner. Oh well.

How many of you see a Dr each time you get your infusion. I am just curious. I thought somone was suppose to ask if anything was new or something. Not here. I go back to my regular place next month. Nothing was new but it is very diffent here in Fl met dr last time because it was ny first time.

Good luck to all
laurie f

RW -- I absolutely love this -- "Time is brain." :D I think that's what I need to tell myself if I ever get worried about the "risks" of being on Ty. It's so worth it for me. I have QOL which I did not have on Copaxone or the interferons--the side effects were worse than the disease.

I go for #8 in 6 days. Hard to believe it has been that long already. No symptoms or relapses! :)

Thanks Natalie but credit for that phrase goes to Lauren Roberts (MsladyinCA) who said it back when Tysabri was withdrawn from market!

I used both that and the argument that having to "fail" on an interferon is an oxymoron, since MS in itself IS a failure, and "failing" is a given for anyone who has even ONE relapse, to get my point across to the neuros I saw during the interim between withdrawal and return to market.

Silent damage is happening daily, even when we show no symptoms, relapses are a smack in the face dose of evidence that it's happening, and I LIKE all my neural pathways and I will be damned if I am not going to do everything in my power to keep them intact and working correctly!

I still have faith that my brain can correct the damage it has suffered through my course with this disease, and that preventing relapses will give my brain a chance to heal itself. I may not be back where I was before diagnosis but I am a lot closer than I was even a year ago, nevermind when I first started!

IT'S NUMBER 23 THURSDAY FOR ME!! :eek: :D

Yay for #4 Laurie!

I had the itchies too after many of my infusions. It's just a pinpoint itch, but the doc said to do 25 mg. Benadryl and 1000 mg.Tylenol pre-infusion after the first couple of times. The benadryl didn't do a thing for it, so I don't do either anymore (the doc knows this) I went through a period of trying to eliminate every variable to see if I could find the cause. We finally figured out that for me, it seemed to be after about 2/3 of the bag was infused and that it was probably the mix separating, so now we rotate the bag a few times during infusion and that seems to have taken care of it! I also never scratch the itch since it will release histamines and make it worse.

I see my neuro every three months. I don't see him during my infusion, but he's right down the hall at the med center.. My nurses follow the TOUCH protocol to the letter, ask the questions and fill out the papers and the whole thing before they call pharmacist to bring the drug. I see the checklist, watch them check it off as they ask and see them fax it to Biogen Idec while I am being infused.

The protocol states that every one of the questions has to be asked EVERY time. The form needs to be faxed within 4 hours of infusion. When it is not received, Biogen calls my infusion center and asks why! If an infusion is cancelled, the infusion center still faxes the paperwork with the rescheduled date and time on it, and the reason why it was cancelled.

I told the nurses when we first started all this that I wanted them to follow the protocol to the letter, since I was the first patient. I wanted them to be able to do it every time, to have it be a habit for them, and after 22 infusions, it is. There are a lot of patients on Tysabri using this infusion center now and the nurses make sure they treat every one of them the same and follow the protocol.

Glad it all went well!:)

Thanks Riverwild

Thats what I thought someone was suppose to do. The first person called my name and said sit here. She took my temp and bp told me my bp then drew my blood. Did not even look my way says you can leave now. That was it next stop. More friendly but no real questions other than how have you been.

That was it.

Hope everyone has a great day.

I am feeling better today and am very happy to be on Ty.The night after the infusion I continue to feel nauseus and dizzy but its worth it

laurie f

Thanks River for your words of kindness and encouragement as always.

#10 was by far my best infusion. I've even spent this past week at a conference in Boise, not sleeping particularly well in a strange room/bed, but still having plenty of energy to do what needs to be done.

I went and had bloodwork Monday before I left for Boise, and Tuesday my neuro nurse called and said it was perfect! I go and see my neuro next week for my 3 month checkup and I'll tell him how great my last infusion was!

I am going to talk to him about my weight gain also, and see if he has any suggestions. I get up and do a walk fitness dvd that is a great workout, but I don't seem to be able to lose anything. I thought maybe something that would help with fatigue and weight together, which some of them do, but provigil doesn't seem to help in either area for me!

Well, I need to get to bed to prepare for work tomorrow after 4 days of being away! It will be busy.

Sounds as if it's going well for you! One of the first things I noticed was the increase in energy. It wasn't a lot but it was noticeable almost immediately.
If you get an answer for the weight/fatigue combo thang, SHARE! I keep trying to lose the weight I put on after diagnosis, but it keeps finding me!:winky:

#23 down!

Holy Moley, it's almost TWO years!

I actually am having the infusion on my anniversary date in May. I told the nurses we are going to have another party! It was a very slow day at Ye Olde Infusion Bar and Grille today, so a few of the nurses sat around and chatted with me and we reminisced about the first day and the screwups that happened the first few times (wrong mix on the very first infusion, drug didn't come on time for the second one, the itchies, etc.)

The nurses here have been with me from the start. They are a GREAT group, professionals in every sense of the word, and I am lucky to have them! They used to only do oncology and the occasional steroid infusions, but are now doing a LOT of infused drugs for a lot of different diseases. The pace of Tysabri patients has picked up and they will eventually have to open more infusion suites (everyone gets their own little room due to privacy laws)

They still make me sit there until the hour is up after the infusion. I am NOT good at waiting, but I just make myself relax and read or watch TV and remind myself that it's protocol!:cool:

Life is GOOD!:)

Hugs everyone..... just because I wanted to! :grouphug: