Hotfoot,

Glad to hear that you got the third infusion with no problems! My nurse today didn't even ask, she used Lidocaine before the stick and I didn't even feel it.

I am going to ask next time whether it's a new protocol that they automatically use it now or if they think I am a baby...LOL!

How are you feeling?

ROFLMAO !:D

I am going to wear my collar to the next infusion...just in case!:eek::)

Thanks for the laugh...omg!

My body check went good, no suspicious anything so good for another year.

I have decided to keep going with the Copaxone and hope for the best.

Thanks again for all your help.

Hi All :) !!! I've noticed with my last 2 or 3 infusions (I had my 5th on Wednesday) that I am getting what I call a Ty hangover the day after my infusion :(. It is completely debilitating for one day.

Anybody else get this?

I actually feel better the day after my infusion. I think it's because I SLEEP!

I have a hard time figuring out what is me being tired and what is me having aftereffects and what is me having MS and what is me just being lazy!

I'm STILL learning living with MS.

Sorry you have the hangover without the fun of actually drinking to get it!!:p

Ditto to what RW said. I just enjoy the sleep that follows the infusion.

Sleep is good!

Hi all, So today I found out that my insurance company approved the Tysabri for 6 months. Wow. Looks like I am going on Ty. When I called the doc's office they scheduled me for July 8!! (which is almost 3 weeks away). I asked if I could get in earlier...I'm not sure I can sit around waiting and obsessing about it for that long. Any advice on the first infusion? Should I insist on Benadryl? I'm sensitive to meds and was on IV antibiotics for a month--they had to slow the infusion down to 1 hour instead of 30 minutes because my body couldn't take it that fast. Should I insist they slow the Ty. infusion to 90 mins. instead of 60 mins. just to be safe? :confused:

Natalie,

The entire process is a simplistic.

If Benadryl is needed, they will have it for you within moments, so don't be too concerned about that.

The RN will watch you closely to see if the IV needs to be slowed or if you need Benadryl. The RN will be there for you.

The infusion is actually a 120 minute process (60 min for Tysabri and then 60 minutes of Saline solution while they monitor you.

Let us know how it goes.

-Vic

Vic, I do not mean to disagree with you, but not every infusion center is as attentive as yours. My nurse only checked on me about every 15 minutes during the first hour. I was in an exam room by myself the rest of the time. They did not slow the infusion down until my last one, and I had to remind them to do it. I did not receive an iv of saline solution during the second hour. They just told me to wait in the waiting room, and I had to go and tell the receptionist I was having a reaction. During my last reaction, I had to push a panic button, as no one heard me call for help.

I did fill out a survey listing these concerns, but have never heard anything. In my opinion, the entire staff at my neurologist's office needs to retrained or they should not be doing the infusions.

Natalie, I hope your infusion goes well for you. Most people do not experience the problems I had. The only reason I posted is so that you would know that you may have to be proactive. If I were you, I would call (your neuro) and ask about pre medicating.

WOW, Barb !!!!:eek:

Those folks are idiots!

How could they treat you like that?:mad:

I know many people using Tysabri and we all discuss our infusions. None of us has ever had that kind of thing happen to us.

Maybe you should be at a different infusion center. I would have dumped them on the spot.

Their ineptitude could be why you have had such a reaction to Tysabri.

-Vic

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. :hug:

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? :eek: 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. :eek: Good luck with that.

Natalie :hug:

Tysabri Traveler
 

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. :eek: 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!

Tysabri tidbit
 

The price of Tysabri is going up.

As of June 28, 2008:

The new price is $2295.16 per vial for a yearly price of $29,837.08. This is the wholesale price. Previous wholesale price was $2228.31 per vial.

Tysabri in the news
 

Tysabri in the news in Vail, CO.

http://www.vaildaily.com/article/200...rentprofile=-1

Dr. Weiss is my neurologist!!!! And the Vail Daily is the sister paper to the one I write regularly for up here in Summit CO!!!!!

Actually, I also write sometimes for the Vail Daily too...

And yes, if all goes well with my new insurance I'm to start Tysabri with Dr. Weiss this summer. He and my PCP up here are both big advocates of the drug and both offices give the infusions, which is very helpful to those of us up here in the Colorado High Country who have MS.

Dr. Weiss is a wonderful, wonderful doctor. I truly believe he saved my life when he diagnosed me back in March, after I had had 20 years of illness with Lupus and Crohn's--and then, increased and worsening central nervous system involvement...

Great article about a great doc. don't know how I missed this one, seeing that it's from our sister paper. I'll have to mention this "cog fog" to my editor when I call in!

Thanks for sharing! :hug:

I am sure that it will go well for you!

Keep us posted.

-Vic

Hi Vic, Thanks for remembering my upcoming date with Tysabri! I will let you know how it goes after the infusion tomorrow. Surprisingly, I'm not too nervous. We shall see how I feel, though, once I am sitting in the waiting room tomorrow at 2:30 pm. :wink:

Good luck, Natalie...:hug:

Natalie,

Hope all went well today! Looking forward to your report!:)

oh darn! I wrote something and it got erased. So let me try again.

I made it through the infusion with very few problems. Whoohoo! :yahoo:
I celebrated with some Texas barbecue.

The nurse was rough and made the IV hurt. A young girl sitting next to me getting Tysabri gave him a lecture on not forgetting to let the alcohol dry before he stuck me (she says it hurts) and not helping the "new patient" to relax. :)

I'm feeling tired, a bit dizzy, and spacey like I'm on heavy drugs (not sure if this is the Tysbabri or the benadryl??) But other than that no obvious side effects.

I will be going to bed early...glad the day is almost over.

Just wanted to share some information I discovered for anyone who is nervous about starting Ty and worrying about PML. (I posted this on another thread on Stumble Inn). I had my first infusion a few days ago. I am still worrying about the risk of being on this drug but what I have come to discover is that for those who cannot tolerate interferons or copaxone a lot of the alternatives have risks too. For example, I just found out that 17 people have gotten PML on the drug Cellcept. That drug is being prescribed off label for MS. It is being used in a drug study at my MS clinic too!! So Ty. isn't looking so bad compared to Cellcept. :) Rituxan (a chemo drug) that is prescribed for MS off label has had a few cases of PML too (people who had lupus). So the fear mongering about Ty. could easily be directed at these other drugs too. My sense is that because the PML reports came out when Ty. was SO new that it got a lot of press. And the best thing about Ty. is that the side effects are WAY more tolerable than something like Cellcept or Rituxan. In fact, a lot of people don't even have any side effects. I am super sensitive to meds. and I noticed nothing during or after the first infusion except for some mild fatigue.

About cellcept see http://www.medscape.com/viewarticle/576907

Tysabri Progress So Far:

TYSABRI PROGRESS SO FAR:

Here are my updated graphs regarding some of my Tysabri data.
(1) Walking Endurnace: Improved slightly since the start of Tysabri.
(2) Vertigo: Reduced markedly.
(3) Hours Before Fatigue: Vast improvement.
(4) Ankle Movement: Improved slightly since the start of Tysabri.

Limiting Data Factors:
(a) Excessive heat in So Cal.
(b) Limited exercise
(c) Periodic UTI's

Conclusion:
(1) No exacerbations while using Tysabri.
(2) Periodic UTI's
(3) Has not stopped overall MS progression, but rather delayed it.

Clinical Observations:
While the data thus far indicate that I am stable, and I do feel great, the reality is that I have progressed to SPMS based on over two decades of medical observation by my medical team. That is not as bad as it may sound since I have had MS for a long time.

HERE IS THE "KICKER":
Although I have progressed to SPMS, I do not notice it per se as I have habituated to it and feel (and function) much as I did when I had RRMS.

Would Tysabri have prevented this if I could have used it ten years ago? Probably not. This is just the natural, biological course of human entropy.

What has medication done for me? I think that other than draining my wallet (six figures soon), it may have made the progression much less of an issue, as I am fully functional and productive. It is like having a chronic cold, with just a few coughing episodes...wherein you know it will eventually lead to pneumonia but there is a delay in the time that you get there...and you know it.

Thus far, I have concluded a few things about my MS:
A - My MS is a tolerable condition.:)
B - MS just IS, like so many other things in life...
C - MS has made me appreciate the most simplistic of things!:)

-Vic

Has anyone had the drowsies on Ty.? Ever since the first infusion a week ago I can barely stay awake during the day and constantly feel the urge to nap. I'm hoping it may go away after being on it for awhile. I can't complain too much, though, because other than that...no side effects. I just need to keep my eyes open for work!!

Natalie -

After each of the 2 Ty infusions I had, I was "down" for about a week with exhaustion and feeling blah. I have to say - I felt worse after each Ty than I did after 4 days of high dose chemotherapy that I just underwent. The neuros at Johns Hopkins told me that my experience with Ty seemed to indicate that it was some sort of allergic reaction to it in some ways - not in the usual ways that have caused people to stop treatment with it....as long as it didn't cause a tremendous problem. I've been told that it might have gotten better with each treatment.

Good luck - and I hope Ty works for you and that your future infusions don't leave you so drained!!

~Keri

Hi Natalie,

For the first several months, I'd be tired for about a week after, and then again a week before the next infusion. It started to level off though around the 5th infusion or so.

I still have the good old MS fatigue (not!) but I only have about a day of tiredness following the infusion now.

16 down!
 

Had infusion # 16 this morning, on three hours sleep!

Everything went well.

I did have some pinpoint itching that had no other cause that I could tell. Spoke with the neuro afterwards and we are going with 25 mg benadryl and 1000 mg tylenol 1 hour pre-infusion next month just in case!

What the he!! is the tylenol for??? LOL!
(I didn't have a whole lot of time and forgot to ask!) :p

1 1/4 years without a relapse!! :yahoo::Dancing-Chilli::Thanx:

I just got home from infusion number 3............No problems at all.
Already my balance is better and I have noticed a marked improvement in bladder function. Looking forward to number 4.........onward and upward!!!:)Barb

Infusion #5 down 7-15-08
 

She got me on the 1st stick - good thing since I had blood taked 1 arm, and die put in another the day before for a scan. Both non-MS or TY related. Anyway - no probs so far w/infusion.

So far so good. A bit sleepy when I got home but I fought it and all fine w/in an hour. No sleep this this time Yea!!!!! Best reaction yet.

I'm still not out of 1st relapse of 1-31. It is 90+ better, but u known me. I want out. Better even since the infusion but not out. I( understand some turn to much better after 5-6.) I hope this is me. It does look like it may be going that way, Time tells all.

Lookin forward to #6. I'll update if a prob.

Keri - I would like to know how things are going and a 1st number to call just to get the process started. I am with you 100% They think I may be able to get in. But, I have to move fast - I still have to active. Pls advise

Just finished Infusion #1 yesterday!!! :trampoline:

I'm so relieved---and it went so well! No reactions, no problems, and they even found a vein in my hand right away, which is remarkable, since my veins are notoriously small and "roly."

Both yesterday and today I've had no fatigue, no side effects--nuthin'! So far so good.

My wonderful PCP and his staff say that I'll probably have to have a port put in my shoulder, because of my non-cooperative veins--but they want to wait a couple of months to see how I continue to react to the infusions. If the TY is helping, then we'll go for it.

Just wanted to let everyone here know that you've been a terrific source of information! During the last several months, while I had to make decisions concerning treatment, all of you who participate on this board gave me so much information, support, and encouragement--without my even having to write in and ask for it!

Whenever I've had concerns or questions about TY, I've come here and found a wealth of answers. I really appreciate it--you've all made this so much easier.

I'll keep posting in as I continue on my new TY journey. Thanks again, everyone! :hug: