Thanks RW (I see that's what they call you)! I will definitely keep you guys updated! This is a GREAT board. Thanks everyone!

Yay Victor! Sorry Sheena
 

Yay Victor on getting the cost of your Ty down. What they were charging you is ridiculous! I believe mine is costing me about $520 a month...which is high. Amazing, I have friends who have Kaiser...they pay NOTHING for their tysabri! Craziness.

Sheena - sounds like you're having a rough ride from your infusions. I do hope your doctor will talk to you about all of your options if he does decide to stop the Ty. :( Sad you're having bad reactions. The first 5 days after Ty, I can barely move - so "exhausted" thought it's unlike the other MS fatigue....hard to explain, but I feel like 5000 lbs of lead are on top of me.

Supposed to go for second Ty on May 9 - but am reconsidering as I am now in talks with Johns Hopkins about that treatment...

~k

Another Yay! I get to stay on TY
 

Neuro just called and I told him about the sides. He is keeping me on TY! He said if I had this reaction w/this drug then I prob would with another and much, much more often. Their going to see how I do next mo. I feel so much better; all is out in the open and I feel safe again.

I just checked my ins and the infusion center billed 1000.00 more this mo. They went from 5200 to 6200. A little worried about this. It's still in processing so time will tell.

Red - I looked at your info ref Hopkins. It looks very good. I think I might consider it hard, if I could qualify. But, I can't due to weak lungs. I wish you all the best if you decide to go that way.

I'm silly
 

The posters on this board are wonderful and you are what helped me make my final decision to start Ty! :hug: I've only had one infusion so far, but I am really interested in hearing everyone else's experiences so that I can keep informed and lend an ear (eyes actually). I was diagnosed just over two years ago and I still feel like a newbie.

I am fortunate to work from home because my job allows me to telecommute. I don't have time to post, except in evenings, but I'm eager to meet and help if I can. Could we work as a group to raise money for Ty users struggling to afford high copays or even the full price of the medicine? I am paying 7.8 times as much as I did for Copaxone monthly, but it is still far less than what some people have posted. I was thinking of Cafe' Press t-shirts, charity fundraisers at national chain restaurants, etc...something we can do no matter where we live? Would the NMSS or Biogen Idec support something of this nature or even keep an account for us so that it goes to the patients who can benefit? I definitely don't want to be in charge of the money, or to whom it goes, but I want to help organize raising funds.

Any thoughts?:)

Here is a wonderful resource that will help you in paying for a portion of both Tysabri and your insurance co-pay:
Alternative Funding Group (866) 426-2906

Others that may be able to help include the following:
The Medicine Program (800) 921-0072
NeedyMeds: (978) 865-4115
National Organization of Rare Disorders (NORD): (203) 744-0100
Rx Council (866) 794-3571

Additionally, Biogen has a number to call for more directions regarding Tysabri, costs and possible assistance:
MS Active Source (800) 456-2255

-Vic

Hello,
New at this, wondering how everybody is doing on Tysabri? I am trying to get started but have alot of unknowns about the drug.. Some of your posting are great. I would like to know the best and worst of this drug. Been on other drugs not doing well on them. I hate shots:mad:

The BEST: No MS progression and enhanced functionality.:)

The WORST: Allergic reaction to the medication.:(

I hope that helps.:)

-Vic

It has been 14 days since my last update of the graphs, so here is the update and it all looks good!

-Vic:)

I'm going for Ty #2 tomorrow! My 1st 2 weeks after the first dose I felt great. The last 2 weeks not quite so perky, but felt as good as any time on the interferons.

I still can't believe what some are being charged for their Ty. My total bill was under $2600! I don't know what the insurance is paying yet. They are taking their time processing the claim.

What my infusion center charged was only $120 more than the cost of the med. It just doesn't seem fair that some of you are being charged $5,000!

That is just nuts!

Question for other long term Tysabri users...
 

hello, I am new to Neuro Talk and was hoping there might be many here who have been on Tysabri for a year or more and can help me figure out if this is just me or not.

I have had 14 infusions and Tysabri has been very good at slowing my MS down, but lately I am starting to feel as though the initial effectiveness might be starting to decrease?

Just wondering if anyone else have noticed an increase in their rate of flares, symptoms, or disease activity after having a good long remission on Tysabri?

I think this concern was triggered by my recent flare. It was the first since starting Tysabri, and mild when compared to my previous flares, but makes me worry anyway.

Thanks for any related experiences! I hope I put this in the right spot, was gonna start a thread about it but saw the Tysabri sticky...

Katt,

It seems that my only issues have been associated with UTI's, and that is when my MS symptoms beat me up a bit. But, after a few pounds of Cipro, I am good to go and back on track.

-Vic

Hi Bill and welcome to NeuroTalk!

If you read the whole thread, you will find a LOT of information.

I think that once folks get started and see benefit, they post less frequently and come back when they have problems or questions, or to update as to how it's going for them.

For me, it's been over one year since I had a relapse. I was a serial relapser before Tysabri. The best part of the whole experience for me has been NOT having relapses. In the interim I haven't had any progression either. I have regained my vision ( normal now), balance, no more vertigo or dizziness, no rotating eyeballs, less spasticity and stiffness (although that is still a problem) and less fatigue.

I'm not cured, no one is, but I FEEL a lot better since I started. I will have my 14th infusion this month and I am thankful every day for Tysabri. I love the once a month infusion rather than daily/weekly/etc. shots. I haven't had any adverse reactions or events.

Good Luck with whatever you decide! Come on back and let us know how it goes for you regardless of whether you choose Tysabri or not!:)

Hi Katt and welcome to NeuroTalk!

I haven't had a relapse or flare since I started. I can't give any advice as to that, I still feel good.

I do know that even with Tysabri you still have relapses. They are less frequent and milder for most people. Everyone is different. You should talk to your neuro and if you ARE relapsing, a dose of steroids may help. You CAN have steroids, just not long term steroid therapy, such as pulse therapy.

Please come back and let us know how you are doing, ok? I hope things improve for you!:hug:

Yes, I just finished an oral course of prednisone. I was hoping the whole time the pills would do the trick so I could avoid IVSM.

Luckily they did, or the Tysabri kept the flare short if not sweet, and I did not need IV steroids. I am coming out out of it slowly now.

Before Tysabri I had 4 MAJOR relapses a year and was worried I would be stuck in a wheelchair...those fears stuck with me and even though I knew Tysabri was not a cure and I would still have exacerbations this first one since has been hard for me to deal with. Even though I was only reduced to cane, then walker, and am now ok without assistance for short periods again.

It is mostly me being silly, borrowing problems and not looking at the big picture. Discounting the positive in my worry and fear. :o

Thanks for the responses!

There's never any need to apologize here for worrying!

We all understand the unknowns of MS and how we can be doing so well and look so good one day and then the next be on the floor!:mad:

Glad to hear the steroids helped!:)

I know eventually I will have another relapse and I dread it! Life has been so good lately, I forget sometimes I even have MS and THAT in itself is a miracle!

YES, I was fortunate to have a few days like that over the past year!

I think that is what has me freaked again, not ready to go back to more bad days yet! Did not do enough with my good days...but I suppose we never do in retrospect...

Ah, that is more a discussion for another thread though...

Tysabri while on antibiotics?
 

Well, I've got a killer kidney infection (or so we think that is what it is?!) - and I'm on my second course of antibiotics (did 1 week and that finished on Monday. Today, Wednesday, I'm starting a 5 day course of something else).

Question - my Tysabri infusion is on Friday....will this be a problem??

Thanks!

~Keri


ps/I know I need to call my neuro to ask....but I don't wanna (pronounce: i-donwannu....like a 5 year old!)

I still got my infusion while I had a UTI, bladder AND kidney infection. I think it is left to individual doctor discretion.

Be careful though, the main antibiotic used for this is Cipro, as Victor mentioned earlier, and it has a MAJOR drug interaction with Zanaflex/tizanidine, a common MS symptom med.

My guess is that it will be an issue, and you will have to delay the Tysabri infusion for a while. Like Katt said, talk to your TOUCH Certified neurologist about it.

-Vic

I'm with Vic, my guess is they will put it off till you test clear of infection. Good Luck

I am glad that there are folks on my side regarding Infusion Center billing and Tysabri costs:).

My infusion is being delayed until this issue if resolved, because the infusion center is not yet getting the message. Biogen is dealing with them as I type this note.:)

Here is a copy of the bill that the infusion center just sent me. It is my co-pay, after my insurance company has already paid its part.

I will note on my Tysabri graphs, assuming they continue, where my Tysabri infusion was delayed.

-Vic

Looks like I have to pay the $1,346.58 today.

The "Assistance" will not be made available for a while.

Ugh...

ALSO: I will be on-time with my infusion schedule,...broke,....but on-time. So there is no need to annotate the gaphs!

So sorry, Victor
 

Victor, I'm sorry the cost of your Tysabri remains a problems. Question - why not go to a different infusion center that charges appropriately?

As for their assistance program, through NORD, anyhow, they have a long process. I actually have the paperwork - and I'm still gathering all of the documents for them. Sigh. Like I have the energy for this! But they also told me that it will take time even when they do get it all - and they won't pay retroactively.

When I was on copaxone (for 5 weeks), their financial assistance was available to me immediately and it was seamless. Oh well.

Tomorrow I have my second infusion. I spoke to my neuro today and he said it was okay to have the Ty while on antibiotics. Not going to post more about this...at least until after I have the infusion. I'm already 5.5 weeks since my first one - and I don't want it delayed any more!

Vic - I hope it all works out for you....


~Keri

Keri,

I am in the proces of getting assistance for the costs, but it looks like my bill arrived just before the final approval date so I am stuck with the bill.

It could be worse. At least they will get paid and Biogen is working with my insurance company and the assistance program to help me find a more appropriate infusion center after my next infusion.

I am glad that you are going to get your next infusion. Keep us posted.

-Vic

Vic, this is just WRONG!

We all realize the US healthcare system needs to be revamped and you are living proof!

I am appalled at your costs. It scares me too, because I don't know what I would do if my insurance changed and I had to pay that much. I couldn't do it. I'd have to change therapy and I sure don't want to do that.

I hope your assistance comes through soon! Thanks for letting us in on such a personal battle and please let us know how it goes and keep posting on the process so others will know how to go about fixing this if it happens to them?

I'm glad you're doing it this way Vic. I know the big payment is bad :mad:... but I think it's more important that you keep your infusions on time. When I read your posts the last couple of days, I was concerned that you were going to postpone one. My last one was about five days late, and I felt a bit more fatigued than usual for that last several days. I hope your next one will be on time with the financial assistance in place.

I just received a letter from Anthem Blue Cross (my insurance co.), and it looks like they are tightening the thumbscrews on my existing infusion center because of their insane costs. Now, the insurance company has added two local infusion centers (within 5 miles of my house), and they have quoted a cost that is 30% less than my existing infusion center, and will not charge the unidentifiable costs! Hence, that will actually be a price drop of 45%, which is manageable.

However, only when I see it in writing I will be happy to go to one of them.

I do like the way this is going. :D Good old-fashioned competition between infusion centers!:)

-Vic

EDIT: I just received a call from the infusion center and BIOGEN is sending the Tysabri to them so that the infusion center cannot mark-up the price by 50%. LOL

Hi Vic,

I've been off neurotalk for a few weeks but I came back to check in and discovered your good news. I am so happy to hear that your Tysabri costs are going down!! It made me smile. :) :) :)

Natalie

Changing infusion sites
 

A while back I had to change infusion sites on a temporary basis from Florida to Pennsylvania. It was not an easy process BUT changing back to my old infusion site took only three phone calls :)! One to cancel my appointment at one site, one to make an appointment at the other site, and most important the call to Biogen to make the switch back.

It only took two days:D:D!

LOL Joelle! Maybe someday it will just be a phone call to one place and it's done!

Thanks for posting through the process of switching! I am sure there will be more folks who have to go through this who will find your posts helpful!

I'm glad everything worked out!:) Now...HOW are you feeling?

My quick Tysabri Update:

Maybe this has nothing to do with Tysabri...but it is time to see my neurologist as:
1) my right leg/foot is starting to show signs of foot-drop
2) I am getting much weaker in my core abdominal muscles
3) Wall-walking is a daily event...or should I say, it is routine now.

Limitations to Assessment:
1) It may may nothing to do with Tysabri, as the heat index is soaring here in So. Cal., and we know what that can do to us...
2) Additionally, my exercise routine has been limited by too much desk work (ya' gotsta' make money, no?:D).

I have scheduled the appointment for the end of the month, when the temperature is supposed to be down by 20F and my workload will decrease. Those two factors may change the story entirely and I may find that the foot-drop issue, wall-walking and core strength will have increased.

This is actually kind of neat in an odd way. It is like waiting for an on-coming train...will it switch tracks or ...:eek::)

Time will tell.

At least I am not in Burma...;)

-Vic

Infusion #2 Today
 

I had my second infusion this morning. Again, I did not take any allergy or pain medicine before or afterwards.

I felt a litle spaced out during the procedure. I was also walking more awkward than usual, but this went away after about four hours. (It seemed like my left knee forgot it was attached to the rest of my leg.)

I have a little more energy and am feeling more optimistic than I was yesterday. Does anyone else feel depressed the week before your infusion?

Good luck to everyone and thank you for sharing your stories! Keep moving!
:winky:

Infusion #3 5-20-08
 

Infusion #3 yesterday - I'm scared - all went ok in ref to infusion. I predosed with tyenonl and ben. I've stayed on ben. since infusion. So far no sides as in past. But, I am in a major relapse with sx over 24hr. Walking, room going around... I have emergency work in at nero at 11:45 am Thurs. This one will not be fun.

I saw my neurologist this morning and we discussed these issues again.

Our conclusion is that it is the normal progression of MS and we both agree that it could be worse. Is Tysabri helping? Probably, but because of the nature of the disease and the medications, nobody really knows for sure.

The good news is that I am still kicking and that my biologists are have a great time working on our desert project (even the guy who got stuck because his 4-wheel drive transmission ate the dust on-site).

I think that additional exercise is a must.

-Vic

I had infusion # 14 yesterday. The usual - no problems, no concerns. The nursing staff all came in and cheered!

My neuro gave permission for me to have my July infusion two days early because I have an annual trip in July and I am not going to be late like I was last year! He refused to let me have it early last year because I had just started in May and he didn't want to rock the boat. He's more comfortable now, I guess.

The bummer news is that the other Tysabri patient isn't having good results. While the staff can't give me the details, they did say I may not be seeing him now, so he must have had some problems. I don't have any way to get in touch with him to check, and I am sad not to be able to talk to him about what is happening and comparing notes. :( I may be back to being the only one...


I am still recovering from the most excellent trip to the Midwest GTG, sleeping a lot. I went right back to work for two days, had the infusion on only 4 hours sleep, and slept like the dead last night for 15 hours.

Soooo...year 2 begins...:)

Hope everyone's doing well!

I had infusion number 1 yesterday morning. No problem........No effects what so ever. My second one is scheduled for June 19th.........Onward and upward, hope it all stays this easy!! Barb

2 infusions so far...and an exacerbation
 

Well, I had my second infusion on May 9th. No problems with it.

I think I started an exacerbation on Monday....called my neuro Wed night - and after leaving numerous messages, he just called me back (4:45pm - Friday- on the eve of a holiday weekend!). He does want to start me on IVSM...and thinks he can get it arranged to start tomorrow. I sure hope so - b/c the double vision and vertigo are kicking in big time. Of course, I would've preferred to start today or to have heard from him sooner. Oh well.

In the meantime, I'm planning on getting myself HiCy at Johns Hopkins. I think I will post about it on the main MS board here...

~Keri

ps/I hate flare-ups. This is technically my second one? First one started end of December - dx Jan - had first IVSM in Jan, second IVSM in Feb. It was like the flare-up that just kept going! Now it's back!! Uggg.

Please do post about it. The process, the procedure, and the drug. It's not regular Cytoxan, is it?

OMG what a great thread on Ty! Thank you all for posting and being a valuable resource. I am so happy for those of you for whom this drug has obviously made some great improvements in your QOL and outlook.

I am sorry for Barb having such a hard time being able to tolerate anything, at the moment. I hope the remylination research leads to something that will help nonresponders.

Vic you have sacrificed so much to fight the good fight!

My doc is working me up for Ty. You all have given me much food for thought.

I told you I would be thinking of you on that day and I was!

Of course I was asleep when you got your infusion after working all night but when I sat in my infusion chair and thought about the last year I suddenly remembered that you were having your first infusion on the same day! Glad to hear it all went well!

Let us know how it goes and how you feel!:)

It's June 19 for me too! I'll be thinking of you again!!:p