Barb,

There IS a protocol that is supposed to be followed for Tysabri. PLEASE contact the TOUCH program, ask them for Quality Control and make sure they know about your infusion center, because the infusion center isn't following protocol per the TOUCH training.

This infusion center put you at risk and may have caused the reaction you had. It is important to have the saline IV running, not only for emergency access in case you need medication infused immediately, but to dilute the Tysabri solution, which is concentrated and MUST be mixed with saline. The saline drip needs to run both before and after to ensure that you don't get a concentrated dose of Tysabri. The patient needs to be watched for reaction AFTER the infusion as well as during the infusion.

Every time I get antsy while waiting to get out of the infusion center, I remind myself that the waiting afterwards is part of the protocol to get the infusion. My nurses take this VERY seriously, and I still can't get out in less than three hours, unless everything comes off without a hitch. They give me the "talk" after every infusion about what to do if I have ANY problems afterwards.

I'm sorry this happened to you. I don't want it to happen to anyone else, and your sharing may help prevent it. Thanks for letting us know the details, so others have a heads up before they start.

They did run an iv of saline solution during the infusion, and they kept the iv needle in during the second hour in case they needed access which they did 3 times. But they did not keep the drip running. I am relunctant to report them (beyond what I have already done) as I still go to the same neurologist (at this time) who is located in this office. That is, the infusions were done in the office where he is located.

I can understand your reluctance to make waves. While you may not be on Tysabri anymore because of the reactions you had, being at the same neuro could cause you problems and you don't need any more at this point!


The infusion center I use starts the IV after Q&A. They check every piece of paperwork to make sure it's all in order. They usually finish all this by 1:30 (appt starts at 1:00 pm) They call the pharmacist while in my little room .

The pharmacist hand delivers the small bag of Tysabri mixed with saline. They both check the label and the bag and then I check it ( just for my own assurance)

By 1:45 or so they are infusing Tysabri/saline mix along with the large bag of saline. They use double infusion sets, so each bag has it's own line with an extra port for emergency access. Both bags go into a single line to the catheter.

By 2:45 the Tysabri bag is empty. During this time they are right outside the door or in the room with me checking flow, infusion site, taking BP, pulse, breathing and temp and asking me questions.

I sit right there for another hour with the saline running at 10-15 drops per minute to keep the line open and they watch me. I usually finish the bag by the time I am done being watched. They unhook everything, stick on the bandaid, do another set of vitals, make sure I understand the procedure to take if anything starts to go wrong after I leave and then I can go.

Are there others who have the same or a different experience and if so, can you let us know what happens with you?

I am rural and don't have the large infusion center experience that a lot of you have. I go to a 29 bed med center for mine. They have a lot of outpatient services. They do oncology, dialysis, PT, OT, Radiology, MRI/CT scans right there. They have a small surgery. They have an ED and access for the air ambulance to send to higher level trauma center. They serve a 400 square mile or so area, and provide services to outlying islands, clinics and wellness services.They are lean and mean and provide a LOT of services for a small center, and they are good for what they have available. I can go within 20 miles of home and get what I need. For most of what I need, I can go to the clinic at the end of my dirt road, that they also run!

Wow RW, it sounds like they have a pretty good operation there for being a small rural center!

My experience is similar to yours except it's in the MS neuro's office. They infuse me in a little room with two recliners. We go through the questions and check all the paperwork. They give me the copies of the Tysabri pamphlet to take home with me. They check all of my vitals as well: temperature, pulse and blood pressure. Usually the doctor does a checkup as well.

We go into the infusion room and they start the bag of Tysabri by itself. They make sure I'm comfy and check up on me often. There's always somebody just outside the door, usually within view.

The Tysabri drip takes about an hour or so, then they switch to the saline and let it run for about 20 minutes, still checking up on me periodically. After the saline flush, they remove the IV and check all of my vitals again. Next, they give me the choice of resting in the infusion room or going out into the waiting room for the rest of the hour. Before I leave, they check me for skin rashes and make sure I'm feeling ok. It usually takes 2 1/2 - 3 hours for my appointment.

I'm kind of feeling panicky about starting Ty which is strange because at the neuro's office and after I was completely fine. Delayed reaction? Maybe it's because I have to wait almost 3 weeks before they can start it. So I am sitting here twiddling my thumbs obsessing about it.

I'm not so worried about PML. But a little nervous about possible side effects (since the interferons and copaxone were horrible for me). Also afraid that I'll get all sorts of additional infections (not serious ones) because my immune system will be low.

For those of you on Ty, were the side effects tolerable and how long did they last for? Did you find yourself getting sicker than usual (with colds, UTI's, that sort of thing?)

Thanks.

Hmm, well, I only went for two Ty infusions before I decided to stop. However, my experience wasn't like that of anyone else I've read about.

I had my infusions at an oncology center (attached to the hospital).

The first time, the oncologist met with me for about two minutes before giving me "clearance" to begin! They led me to the infusion room - which had 12-15 of those comfy recliner-type infusion-center chairs. There were a handful of nurses in the room.

One nurse came over and handed me a sheet to fill out - it was the sheet with the 4 questions. I'm pretty sure she was supposed to actually ask me these questions, but she didn't. She came back with the IV and started the drip. I gave her the filled out form.

The second time, I went right into the infusion room and the nurse started the drip. Didn't even bother giving me the four questions, verbal or written.

There were others receiving infusions - mostly chemo, though both times, there was at least one other person getting Tysabri.

Both times I took liquid benadryl while in the waiting room and then an ativan for my nerves before the drip began. I can't tell you if they ran a saline drop post-Ty, as both times I fell asleep shortly into the drip! (benadryl + ativan + early morning appointments = some of the best sleepytime!)

I think the first infusion I was at the office for a total of 2 hours, the second time a little less than that.

Anyhow, neither time did they check my vitals. Nor did they tell me what to do if I had a reaction post-infusion. (I never did.)

I suppose if I didn't know the "rules" and what to expect, this would all be VERY bad....but since I knew from my own prior research (from many of you guys!)....it wasn't a problem for me.

This center sees about 50 people per month for Tysabri infusions.

Oh - and the room was absolutely freezing. I'm in Southern California - and both times I wore multiple layers of clothing and used a few blankets. (The second time I brought my own down throw - and had them give me some more blankets.)

Anyhow, for now - no more Tysabri. Revimmune/HiCy coming soon! (going to balti on June 29th)

~Keri

Natalie -

I remember having all of my nerves acting up because I had to wait soooo long for my first appointment. Waiting is always the worst!

Anyhow, the infusion was cake - no problems. I was actually shocked. I had no reactions and actually questioned if they just gave me a saline drip and no Ty. However, I was pretty weak and beat up for a few days after the Tysabri infusion. After that, it was okay.

As for infections and colds, I had no problems - and I work with children (often sniveling and snotty and booger-y ones). LOL. The only thing I noticed was that I had one pretty bad UTI and a more mild one - both bladder/kidney infections (so no burning or anything like that - mostly pain in my kidneys). And although I've never had UTIs as an adult, I can not say if it was the Ty or the MS that caused it.

Other than that, like I said, no problems. Even the feeling beat-up and weak and the UTIs still made Ty worth it to me. Some others have had bad reactions during the infusion or after - but just like with all the other meds - everyone reacts differently. I guess we all just hope that we will respond well to whatever med we choose to be on!

I wish you the best of luck - and hang in there - I know how anxious, nutty, angry, frustrated, annoyed, and SCARED I was while having to wait. But hopefully when the three weeks are up - the infusion will have happened and been a breeze!

~Keri

Hi Keri,

Thanks so much for the kind encouraging words. Sometimes I think sitting around waiting for doctor's appts., MRI's, or treatments to start may be even worse than actually going through it. I think I just thought that once I got approved I'd be in the infusion room in a couple of days. Guess it doesn't always work like that. If it is not one thing, it's another. A few weeks ago I was sitting around waiting for my first time visit with the big MS clinic in my city and it was driving me batty. Then I was worrying about an upcoming MRI in a new facility and what the results would be. Now it's the Ty infusion hanging over me. I'm trying to be calm and breathe. It makes it hard to concentrate on work and life. I'm still struggling with the whole "you've got MS thing" (I'm sure you are too). You must be feeling anxious waiting for the HiCy treatment. Good luck with that.

Natalie

Well, everything is set in stone now. They finally gave me a date for the infusion, got the medication, and cleared it all with insurance. I'm on for July 7. Whoohoo! (still slightly nervous though). I was told they have a big flat screen TV for movies in the infusion room. Fancy schmancy. The infusion nurse is Jay. I get pre-medicated with benadryl and can bring my own blanket and pillow.

Good luck with everything Natalie8. You sound like you are preparing well!