Barb,

I am so sorry to hear this. You gave it your best shot.

I would rather have heard that the staff at the infusion center were right there, though. You'd think after what you have been through prior to this infusion that they would have been much more watchful and careful with you and your life and health!

Please let us know what happens from here for you. We care and your input is valued here!

I think all of us should take a heads up from Barb's post about her infusion center staff not hearing her when she had her infusion and had a reaction.

Please ASK your infusion center staff what the procedure is for someone who has a reaction. Make sure they have a plan in place that ALL the staff know and follow in case of emergency and what YOUR part in getting them to YOU is.

A reaction can happen at anytime, not just at the beginning.

While my infusion has become a normal part of my life, I've never dismissed the fact that there can be a problem at some point and I made sure that I knew what I had to do if something went wrong, both during infusion and after I leave there and go home.

I'm so sorry things didn't work out with the Ty, Barb. I believe and hope that soon there may be a new med for you and many others in the same situation. I haven't been on Ty long enough to know if it will be the drug for me. RW is so right about the infusion center! You should never have had to deal with the nurse not being right there with you, especially with your prior history! I hope things get better for you soon.

Wow, Barb . . . I am so sorry that Tysabri didn't pan out, and very disturbed about what happened to you with no one around to watch over you. That is just not on, and I would be doin' some major complaining about their procedures there. I wouldn't want to see something like this happen again.

I visited my doc yesterday and he is very excited about our future prospects. He reiterated that we couldn't have picked a better time in history to be faced with this challenge, and I found that very encouraging. I hope your silver bullet is just around the corner too.

Congratulations, Keri! I'm glad everything went so well for you.

Cherie

Thanks everyone for your support. I have an appointment in a little while with my neuro. I receive my infusions at a neurologcal clinic. They put you in a exam room by yourself and you have the option of sitting on a hard chair or laying on a padded procedure table. The nurses station is located outside of the room/across the hallway, but it is really busy there and rather loud. Luckily they did show me where the panic button was during my second infusion. I do think they need to retrained in the tysabri protocol. My nurse usually forgets to ask the 4 questions and I had to remind her yesterday that they were supposed to slow down my infusion. I think they only have a handful of patients on tysabri and they said I am the first to have any problems. That figures! I always have enjoyed being the first in the class. I sort of feel like I have been run over by a semi truck today.

I have suggested to them that they need a better and more comfortable set up, and I also listed these problems on a survey I received about my neuro and the clinic.

Just got back from my appointment and my neuro admitted he does not know what to with me. He wants me to on some type of treatment but is not thrilled with the idea of the chemo drugs. He has a patient that is going into heart failure after being on cytoxin. I am not willing to go that route at this point either. He is requesting through my insurance (HMO) a referrral to a ms center/specialists at Barnes Hospital in St. Louis. He already talked to them and they said that I absolutely had to stop tysabri; that my reactions would just get worse. He does not forsee any problems with getting the referral. So I am just going to try to destress for a few weeks and then see what the specialists think. I imagine it may take awhile to get an appointment.

Barb,

I hope that you can find a medication that helps. It may be worth your time to see if there are any MS Medication trials whithin which you can participate. Alternatively, maybe you can go back on one of your pre-Tysabri medications which seemed to work.

I am crossing my fingers for you.

-Vic

Hi Barb - I'm so sorry you experienced bad reactions and that Ty isn't a good tx option for you. How lousy. I do hope that the HMO will allow you to see some specialists.

And thanks everyone...I am glad that my infusion went well. I was sore yesterday - felt like the Tin Man when I woke up and needed to be oiled or something...but I fought through it and worked. Today I went to work but had to leave early (and cancel on two clients). Just feel wiped out - on top of the 'usual' fatigue I've had.

On another note, my neuro called to tell me that I'm anemic. My iron has usually been low the last few years, but not to that point. I need to call my PCP tomorrow and talk to her about it (I guess first call the lab b/c I forgot to tell them to send a copy to her, too).

I also kinda got 'called out' by my neuro - I guess his office or other docs from there read these boards. While I may have complained about the process of going on Tysabri, I'm pretty sure I've always said nice things about their openness and cooperation - in regards to everything except getting the tysabri stuff taken care of. Also, I've never mentioned names. I felt really lousy about hearing this - b/c I do like him and his staff....just some icky SNAFUs happened and I paid the price of having high stress and anxiety from it. I've actually recommended him and his office to several people now!

So, on top of being sick and already depressed, now I feel even worse. Sigh.

Well, I'm scheduled for my first Ty infusion next Wed. at 4:00. I've read of some of the problems some of you have had getting up and going with Ty, and I can say it has been a breeze for me. Maybe that is the benefit of living in a town of 60,000. Good doctors and care, but not overly large!

My neuro sent in the paperwork on a Monday. By Friday the IV center was working on my insurance, and by the next Wednesday I was scheduled for an infusion!

They have 16-20 patients on it already, so I won't be a newbie!

I'll update as I get closer, or more nervous, but right now I'm feeling good!

Glad to hear things went so smoothly for you! Let us know how it goes!