I thought I'd help get us to 1000 so we can get a new thread!

I had #10 yesterday, and it was my best infusion by far! I've been getting a horrible case of the chills five minutes after the infusion is completed, and it lasts about 1/2 hour.

Premedicating with benadryl didn't make a difference. I've learned that an aleve an hour before helps with any headaches. But after yesterday, I think the chills, and the fact my body tenses during that time were causing the headaches.

It just went really well. I hope they all can be that way!

There were a few different things. One, it had been five weeks since my last infusion because of a toenail fungus that looked like it may have infection, so I had that nail removed and they postponed ty for a week, and two I was still on Keflex from the toenail removal.

I also took some hot chocolate that I sipped during the infusion.

I think next infusion I'll keep the hot chocolate part, still premedicate with the Aleve an hour before, and hopefully I won't be on any antibiotic!

I finally had infusion #10 yesterday. All went fine and I really needed it. My prior infusion was due on 12-3, but I had a neuro problem and had to find a new one. Now I have to drive 2 hrs for the infusion and I hate that. I seems I am back active again. I guess due to late infusion. I'm just praying this one pulls me out. B4 I missed the Dec one i seemed stable. So fingers crossed here. Just wanted to update.

Glad to hear that things went well! It sounds like you have been having a hard time and the whole toenail thing?...OW! OW! OW! I have torn off toenails so many times that I cringe and my toes suck back into my feet every time I hear someone has one removed voluntarily!



Sheena, I hope that it IS just because your infusion schedule got messed up. The whole traveling thing has to be hard on you. I hope things get back to normal for you soon.
Remember that you CAN still have relapses while on Tysabri. It's ok to have a course of steroids too, the usual 3 day IVSM.
Please let us know how it goes for you.

Both of you have had # 10 now!

How does it feel? Are you settling in to having an infusion rather than shots? Do you feel things have improved? Are you happy with Tysabri as a whole when compared to what you did before for DMT?

Hi River - great to see u and all the old gang again. I stayed away, b/c there was nothing anyone could do till I found a new neuro., saw him... I hope all can understand.
I am happy to say that I love him and staff is great... Here everyone is treated the same and none of the suck up... - I found with my last. My new Neuro's name is mentioned in several of the new drug studies. My clinic was also one of hundreds that helped bring Ty on and helped bring it back. . It is hard here to find pro ty Dr. No idea why. Hence, I'll just have to deal w/a 2 hr drive. Small price to pay.
I say this attack is due to lack of meds, but my eye went black for 5-10 sec at the time reg infusion was sch. New sx so I guess an attack while on. Old neuro wanted to pull me off - hence dismissed asap. BTW - not offered roids several times when asked. Dif. with new one.
BTW - I hold private BCBS of my state - cost depends on how they bill. If they bill one way - I pay next to all - another 0. Another reason for drive. I could get Ty here - but would have to pay.

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." 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!

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!