I got my infusion center changed finally!! :D Thanks so much RW for the advice! :) I asked to speak with a supervisor at Biogen instead of a case manager. Lo and behold, everything was taken care of within a couple days. I'm set to go to Pittsburgh. Although, I will have to go through all of this carp again when I come back home. Sigh. :)

Thanks for letting us know Joelle! Glad to hear it worked out for you. I hope you saved the supervisor's name for your return trip! It should go a lot easier when you re-establish at home again. :)

Can you tell us what you did (in steps) so if it happens with someone else they will know the drill? Generalize the information if you need to. Is another neuro involved? Did they just transfer your scrip to another infusion center? Any problems with your insurance?

I am sure there are more people both here and to come that might be in the same situation. There's lots of folks who go south for the winter, and a LOT of us who have or will need to provide care for aging parents who can use this information!

How to change infusion sites
 

Hi everyone!!!

Here is what I had to do to change infusion sites:

My first call was to a case manager at Biogen, then another case manager, and another :rolleyes::rolleyes:.

Finally I asked for a supervisor as RW suggested (thanks again!). My advice would be to speak with a case manager once and if you don't get the help you need, ask for a supervisor.

Once you get that far, you will get a list of infusion sites from Biogen that are near the area where you will be staying/living. I had problems with the first infusion site I chose :(. They weren't returning calls. So, Biogen called a different site for me. They gave me that address and phone number (wrong number by the way :mad:), along with the Tysabri nurse's name. I asked her if they accepted my insurance and if they would honor my neuro's scrip. They do, thank goodness.

When I got through to the Ty nurse at the new site she took care of everything else. This particular site would honor my scrip for Ty from my current neuro (I imagine this would not be the case if I were actually moving permanently to the area). Some sites will not honor the scrip from a doctor not at their site. You would have to get a scrip from the neuro associated with the new infusion site.

I had to have my neuro's office fax a few of my records to the new site. My insurance did not cause any problems, yet :rolleyes:. The Ty will be shipped from my regular specialty pharmacy to the new site.

I have an appointment set up at my new site on April 14th for my third infusion. Hopefully, everything will go smoothly. The new Ty nurse assured me that everything was going to be fine. I'll just have to wait and see :rolleyes:.

When I go to Pittsburgh on April 9th, I won't be online hardly at all. My parents do not have a computer, ARGH! I have no idea when I'll be back, I bought a one-way ticket for the time being. I'm going to start another thread about this in the Stumble Inn shortly.

I hope this helps :):) !!

Hi Joelle

I am glad things are working out for you. The last thing you need right now is a hassle getting your infusions. :hug:

I had my first infusion yesterday, and it went really well! Didn't feel any different than with saline in an IV, so I hope that is a good sign. I slept better last night than I have for a few nights also. So I'm feeling good about the change to Ty today!

Glad to hear everything went well for you! Please keep us updated on how you are doing and welcome to the wonderful world of Tysabri!!:)

I go for my first infusion on the 30th, and I was just wondering from everyone. How many patients are in your clinic. For myself I am going to be the twelvth patient.

Glad to hear that you are scheduled for your first infusion!

I can't speak for anyone else. I go to a 25 bed hospital that has an
infusion center. I was the only one for my first 7 infusions.
Now there are two of us!:)

I go to a standard Neuro office. They have 70 on TY. They also give infusions for headaches... 3 large comfy chairs in a very small room. The others came and went as theirs was for 30 min - mine 2hrs. No problem at all. Nice chat or read/sleep time. Very relaxed.

I know my neuro has 16 patients on Ty, and there are other neuros in my town. He said most are going to the infusion center I am going to, not the hospital that is the other place that does them.

They only do Ty three days a week, M-W-F, so I'm limited to those three days. I did Wednesday the first time. Everything going well so far!

Anyone ever had the lower leg, ankle, and foot swelling as a TY side? I've had it my left leg-foot (mod bad) and rt leg-foot (not very bad) since my 2nd day after infusion. It started to go down a little yest, I think b/c I am due for next infusion on 15th. Just hoping it does not get any or much worse with next. Heck, if it does I guess I'll wear bedroom shoes LOL.

BTW-I think my 3rd round of antibiotics is kicking in. I'm very hopeful I can make the 15th infusion date. I've been this ill b4 and for longer then this.

I am remain and will remain very pro TY! This drug works on my MS. As I come closer to my infusion date, I see what it has done for me. I can see exactly where it stoped my sx and exactly where they came back a few days ago (as expected). My sx now are not as bad as b4, but new. It's hit my eyes. mouth... If it were not for TY, I have no doubt these new ones would have hit harder then now weeks ago and remained. I do belive we need it every 3 to 3.5 weeks, but that has yet to be approved.

I want to thank everyone for hanging in with me, giving me their best advise and support. I know I have been hard on you guys. I've just been sick as heck and scard. Please keep your fingers crossed for the 15th - maybe I had better ask you for a double cross. Everything is going to be fine.

:hug:~Sheena~

Why Ty ?
 

Just wondering why many of you ended up on Ty?

Copaxone didn't work for me with side effects, history of depression rules out A and B so I think my specialist will say Ty (that's what my local neuro thinks, but, wants the hopkins okay)

Since stopping copax I had a "honeymoon " period and then went downhill. I'm having a relapse and am doing the best I can.

How long does it take for Ty to "work"

Thanks, Carrie:)

Just thought I would update you all and let you know I have an appointment at the ms center at Barnes Hospital in St. Louis on Friday. They had a cancellation so I snatched it up.

I was wondering if anyone has had hot flashes and periods of freezing as a side effect of tysabri. I thought the hot flashes were just hormones ( I am 51), but every afternoon I get really cold (cold chills) and have to cover up with a blanket. Can ms cause this??? This has been going on for a few months.

No idea, we are both in that who can tell age. But, yes I have had the same and did not have it prior. I really had given it no thought ref ty, until your post. Now I have looked at ty sides again; I do not see it referenced. My guess is we are both in that stage. In the end result - who really cares about such. You , I and thousands of othets are fighting for our life with ty.

Carrie,

I do not know how long it takes for Tysabri to slow progression. I have had many "doses" of Tysabri juice and I am not sure yet if it has done anything. I will draw my final conclusions after my 25th dose (about this time next year) unless I have some adverse reaction to it.

I hope that it works for you.

The reality is that we will never know if it is working because we have nothing for direct compairson (i.e. you on Tysabri vs you not on Tysabri). The best that we can do is look at averages within the Tysabri population and between all other DMD medications.

It is a statistical problem no matter how you look at it.

The good news is that more people are reporting good results than are reporting bad ones.

Do whatever is best for you. Try it for a year and decide if it appears to be helping. Then decide on what to do next.

I have attached my "progress" graphs below to give you an idea of how it is working for me.


-Vic

Hi Carrie!

I started noticing small improvements after my second infusion. I kept my mouth shut in case it was all just subjective hope.

After each infusion I would notice the small things that just kept improving, sometimes just because something that used to bug me would be gone and I would realize that it hadn't bothered me in a few weeks.

At the 6 month mark I did my own assessment, had a neuro appt., MRI and vision screening. At that point I had the clinical proof to go with what I was feeling. I will have my 13th infusion on April 24th. I have another neuro appt and MRI coming up before my one year anniversary in May.

I cannot WAIT to see the results of the upcoming MRI. I expect more improvement!

The 6 month MRI showed no new lesions, no enhancing lesions and the largest lesions( 12-14 cm.) either reduced in size or gone. My vision screen showed no damage to my optic nerve, it was healthy and pink, my eyes were back under MY control and my 2003 prescription for glasses for nearsightedness was back in effect. No nystagmus or oscillopia was noted as was in previous exams. No more vertigo, no more eye getting stuck in position when I looked left. My quality of life has improved. My fatigue has lessened. My stiffness and spasticity continues to be a problem, but nowhere near as bad as it was.

I was scheduled for my first infusion when Tysabri was withdrawn from the market in 2005. I hadn't been on any other MS therapy since diagnosis in 9/2004. I went on Copaxone while waiting for Tysabri to be returned to market. It did nothing for me. I had serial relapses and ongoing problems.

I got on Tysabri as soon as I could after it was returned. So far, so good from that point on! It may not work for everyone but it worked for me!

Thx Victor and riverwild
 

[
I appreciate the info. I'm going downhill and can't wait to start ty. I have a lot of cog, sensory, vision and some balance issues. Everything is bouncing in me-from my toes to my brain...feel like i'm on a bad trip...if you know what i mean.

that was soooo hard for me to type, carrie:eek:

More good stuff on Tysabri
 

Lots of good stuff coming through the wires from the AAN today! :)

Just a taste of what's being reported:


http://www.reuters.com/article/healt...AS778120080415


More will be forthcoming as the confrence partcipants release their abstracts and studies.

Just an update:

I had my Ty infusion on Monday and all went fine at the new infusion center. Thank goodness for small favors :rolleyes:. I haven't had a chance to read anyone's posts, so I hope everyone is doing okay :hug:.

Glad to hear it went smoothly! Hope all is well with you and your family situation. Let us know how you are doing when you can get to a PC.:)

Thanks for the info!
 

River - thanks for the info - that was nice to read. I know a lot of people were freaked out by the CEO (or someone high up) at Biogen Idec saying they expected more reports of PML. I think that was just the company trying to cover their butts in case it did happen. Anyhow - yay for good news!!

Joelle - glad your infusion went smoothly at the new place!

~Keri

A NEW GRAPH SERIES FROM MY TYSABRI ANAYLSIS

The graphs shown below can be interpreted as follows:

Walking Endurance - The amount of time, in hours, when I do not need to use a scooter or cane. On aveage (red line) this has been improving since Tysabri was started.

Fatigue - The number of hours each day before I am physically fatigued. It is the same as "stamina". One average (red line) this has improved dramatically since I started using Tysabri.

Balance - This chart is actually a description of how often vertigo strikes per day. The data points are averages from data accumulated over a 28 day period (between Tysabri infusions). As is indicated in the graph (see red line) the number of vertigo episodes has dropped dramatically since I have been using Tysabri.

Ankle Movement - The intent of this graph is two-fold: (1) to describe ankle agility, and; (2) to show the potential of "foot-drop" accidents as it relates to the inability to lift the toe prior to taking a step (i.e. if the toe does not lift, then the foot rubs against the floor and you can trip). On average (red line) ankle movement (relative to "foot-drop" has improved slightly.


I am looking forward to collecting at least 25 infusion data points so that I can draw some legitimate conclusions about how Tysabri is working for me. Any statistical analyisis with less than 25 data points (infusions) is suspect. As such, I have just drawn some general trend lines in these graphs (actually, they were generated my Microsoft Excel).

The second graph shows the actual "ou-of-pocket" expenses for Tysabri for me with my Blue Cross/Blue Sheild Insurance. If I had no insurance, oddly enough, it would be much lower (about $400/month for the infusion center). However, without insurance I would be risking everything if there was a catastrophic event that required millions to be paid to resolve.

-Vic

Update - My infusion for the 15th was canceled. Infusion center Neuro (not mine) required a clean X-Ray and blood tests. Bottom line - they thought I was lying when I said I was well and had been. I passed both tests and am set to go again on Mon.

I have not posted b/c while I may understand this that does not keep me from being angry. My anger was too high to allow me to post. I would have said some very bad things. I know me and my mood swings. LOL

This may have even been good for me. I have 1 known side; swelling mainly in my left leg from calf to foot. It is down a bit in last few days so that is good. I hear Ty hits one hardest the 1st time then kind of easies off. Does anyone know if true or not? My neuro does know of this and paid no attention to it. Thank You

Sheena,

I am not aware of Tysabri hitting hard the first time that you use it. For me, it seems that the infusions have always been the same: mundane and without side-effects. But that is just me. Others have had reactions to it. If I have one bad reaction to it, then I am stopping for good. Besides, I would love to save the $36,000/year it cost me just to use it. The cost, even with my insurance, is obscene.

-Vic

Wow Vic. Am I understanding this correctly?--that you have paid $36,000 out of pocket with the Tysabri? Yikes!! :eek: What is the retail value of Tysabri a month?

Natalie,

Yes, even with my insurance, Tysabri is costing me $36,000 per year out-of-pocket.

I think the retail value of Tysabri is about $4,500 per dose, and then you have to add on the infusion center costs.

It is disgusting and shameful that people have to pay so much for a medication.

What I have found is that the initial "quote" that you get for the cost of the Tysabri is BS. Similarly, the infusion center costs are BS.

Heck, MS is BS.....but that is just the way it goes.

It is no wonder that my dream of owning a P-51 went up in smoke. But, as I have said in several threads, it could always be worse.

-Vic

FYI - to be sure that our home cannot be attached to pay medical bills, we sold it to a charitable trust. If we had not and then could not pay our medical bills, the home would be sold at auction to pay off both Biogen and the infusion center.

Hence, legally I do not have a dime to my name. Nor does my wife.

There is no other way of protecting hard-earned assets.

The price for MS stability is financial instability,..., even if you have health insurance.

What I did not add to the previous "Tysabri Cost graph" are the other associated bills: actual health insurance cost per month. That is an additional $750/month or $9,000 per year.

Hence, our actual medical bills total $45,000.....each year while on Tysabri.
Before I was insured, my medical bills were $37 per month on average (including office visits and Avonex). But, if I got hit by a truck...and the hospital bills were massive...then we would have been nailed to the wall for life.

What a medical system....

LOL

-Vic

Going To Start Tysabri 4/21
 

Hi! :)

I just read through all of the posts in this thread so far. Thank you everyone for the information--all of the good news and some not so good things to watch out for...

I will have Ty infusion #1 on Monday. I've been dealing with my nervousness by reading everything I can.

A little about me:

• DX'd 2/2006.
• Daily Copaxone for ~2 years (except for some months to try other choices). Last inj 3/21.
• 3/2008 MRI showed 7 NEW lesions.
• Overall, my worst symptom is FATIGUE, coordination / numbness issues, and leg pain.
• Used to have awful burning sensations in my feet and wore ice packs frequently. This happens very rarely now, but I still like the name.
• I am pretty positive, silly, and grateful.

Vic,

You do what you have to do. And you are right that it could be worse. Congrats on all of the improvement! :) I'm glad your fatigue and endurance have gone up and the vertigo is waning. I love the graphs. I can tell you are a scientist at heart.

But honestly, this health care system we have is just crazy. I'm still speechless from Tysabri sticker shock (plus those insurance costs). I didn't know one could sell a house to a charitable trust. It sounds like you have been financially savvy in protecting yourself. I know in general there are people not getting treated for MS because they cannot handle the costs, even with insurance. It's tragic.

By the way, I see you are in Riverside. How is the weather in So. Cal. these days? I lived in San Diego for 8 years and miss it terribly.

Natalie

Hotfoot, welcome to the community!

:welcome_sign:

I hope you will keep us posted about your experience. I think you will find there are a lot of great people around here.

Good luck with that first infusion! :)

Natalie,

The weather here in Riveriside is a comfortable 72F, with a mild breeze and clear skies. I bet that San Diego is similar, although one of my friends at PB told me that the breeze is picking up.

Our house is listed/owned by a charitable trust for these medical reasons specifically.

I too am happy so far with the Tysabri stability/improvement. So far, so good. :)

-Vic

(P.S. Technically, I am a scientist:rolleyes:...but I never really think of myself in that light. I prefer outdoor biological/natural history work over the cell-squishing & molecular work.)



Hotfoot,

Welcome to the Tysabri train and NeuroTalk! You will find a ton of great advice and information here.

Don't be nervous about Tysabri. It is a simple infusion that lasts a couple of hours. You will get to sit/recline in a comfy chair during the infusion and that will give you time to read, sleep or listen to music. It is very simple.:)

Enjoy!

-Vic

Victor - on this one I know what I am talking about. Cost of TY is 2500. per dose. That is what the Drs Pay and I can prove it! Final cost is up to where you have the infission at. I have 1 DR office local that does infusions and 1 hosp. I go to the Dr/neuro office - my choice with no regard to cost. I'm told the hosp cost is much more - I am a germ phobic - hence my choice.

I'm sending u a pm w/name .... excluded ... I hope this will help you ... bottom line is my ins is contacted to pay 3000 approx. per infusion. I took this ins b4 I knew about the MS. Maybe u did not - I don't know. I had no idea I had this S------.

I received a letter yest trying to deny converge - I did the wrong thing - I yelled - screamed ... at them. Then I called my ex and he calmed me down. For me I am 100% non - preexisting per my ins. lines. If I get denied. I'm putting every da-- cent on the line and going against them. I did not know when I applied!!!! H----- I would have been in treatment. I'm not a fool.

Sheena,

Thanks for the PM.

My insurance plan was purchase after my diagnosis. Hence, BC/BS has always know about my MS.

The Huge Tysabri cost that I pay is because of my high deductable. BC/BS does pay $2,050 for each bag of Tysabri, and I have to cover the remaining cost, the infusion center cost and the insurance premium. Hence, my annual bill is $45,000...and that is ater long-term negotiations with all of them.

You see, when they know that you have some money the will take every drop of blood that they can. When the well has dried (and it is close right now), they will renegotiate the costs so that they are similar to yours.

I do not yet have that luxury. But I may just stop the entire process becuase of the insane cost. I think about that every day.

My family can use the money to put their kids through college. I am willing to be a lab rat so that I don't continue to waste so much money...and it is a waste, regardless of the efficacy of Tysabri. The cost is so out of line with what people can afford that it is just insane.

Again, thanks for the PM. Just add 2K to those numbers and they will look like mine.

-Vic

Sheena,

I am sorry to hear that your infusion was cancelled. I think perhaps the infusion staff was just making sure that you were good to go after you have been so
sick lately, and that is not a bad thing. It means they are being very careful, as they should be with every patient.

As far as the swelling in your leg, that would be your primary care doctor's domain, not the neurologist's. You should see your primary care doctor and find out what is going on as it could be something entirely unrelated to your Tysabri treatment. There are many things that can cause swelling and circulatory problems and you should get it checked since it's lasted as long as it has!

Let us know how it goes!! :hug:

Hotfoot! :Wave-Hello:

Welcome to Neurotalk, and especially to the Tysabri thread! You'll find a lot of support here. I find the whole infusion process very easy and hope it's the same for you.

Let us know how it goes for you!!


The wholesale cost of Tysabri per vial is $2184.62 . That comes out to 28,400.00 per year (13 infusions)

http://www.elan.com/Products/united_states/tysabri_pricing.asp


That is the WHOLESALE price to the pharmacy. What the pharmacy charges to the infusion center or doctor and what the infusion center or doctor charges to the patient is a whole different ballgame! Everyone takes their profit and in most cases, it's a LOT.

I received an EOB from my insurance company last month for January
(the first time two infusions have fallen in the same month) and the total bill was $10,000.00 +. I got another a day later and the insurance had paid over $9400.00 of that bill. The hospital ate the rest. I called and asked patient accounting to send me a breakdown of the bill listed by charge for every item. I haven't received it yet, but when I do I will post it here.

I'd heard that there was a price hike in the wholesale cost but the website doesn't reflect what I heard or the figure I have in hand. If I can verify the price hike that supposedly went into effect I will post that too.

Hope everyone's doing well out there!!:)

Edit:See end of post.

I just got the new statement from the insurance company.

Good timing indeed...

1) BC/BS is being billed $3,600 for the Tysabri per infusion (I have to pay $2,000 on top of that), which means that the cost is $5,600 per dose. The infusion center is really jacking up the prices.

2) The Infusion Center has also billed me and additional monthly amount of $957

3) My BC/BS premium just went to $1,050/mo

Therefore, the total monthly cost for everything is $4,007

The annual cost at this rate will now be $48,084

In one month the cost went up by $3,084

I guess this bill came at the appropriate time to add to this discussion.
Tysabri may be ended soon...and that really does not bother me, as the well-being of my neices and nephews outweighs my MS. Heck, each year of Tysabri is equal to the cost of a four-year degree in a California State University. It makes the decision even easier now that I just typed that last sentence.

...And oddly enough, I am not even bitter about all of this.

-Vic

Hi again Vic,

Even though you are not bitter it makes me sad that in this country you would have to choose between healthcare for yourself and education for your family members. It is shocking to realize that one year of Tysabri = the cost of a degree from the Cal. State system. I would add too that your cost of one year of Tysabri = one year of salary for a starting assistant professor in my field. And I consider myself lucky to have a job with excellent insurance. How anyone can afford medical costs these days is beyond me. I admire and respect your concern for your nieces' and nephews' education. An education is priceless -- and so is your health. Wish you didn't have to choose.

Take care and enjoy that perfect Calif. weather!

Natalie

Thanks, Natalie.

I will find a way to resolve this issue.

Maybe I will become a lab rat for Revimmune or get involved with an MS trial that looks good.

Either way, I think that there are still choices in dealing with my MS and there is no sane reason to keep spending so much on a medication. Maybe I will claim poverty and get it for free.:winky:

-Vic

I've never heard of Revimmune until now. I just found this article from a year ago.

http://www.medicalnewstoday.com/articles/64250.php

They describe it as a drug that "reboots the immune system."

Very trippy!

Natalie,

Here is an article on that medication:

http://www.hopkinsmedicine.org/hmn/W08/feature1.cfm

-Vic

The wholesale price for Tysabri of $28,400.00 is correct.

1 year / 13 infusions / 1 every 28 days / $2184.61 per vial / set in 2006 when Tysabri was returned to market.

I was associating the price increase with the approval for Crohn's disease.

My bad and my apologies. I've been in this fight a long time and the facts run together sometimes! ;) Please don't ask me if I can remember the price prior to return!! :p

(P.S. NICE GRAPHS AGAIN VIC!!!) :)