Does anyone know what the wholesale cost of one dose of Tysabri is right now? Thanks!

The wholesale cost of Tysabri is just below $ 2400.00 When it was initially released, the cost was just over $ 1800.00. But Biogen had to pass on their extra costs from fixing their hasty release to someone!

The big expense comes from the infusions which range anywhere from about $ 2500.00 to over $ 8000.00!!

Harry

Thanks for the price quote. Although my infusion costs $498 a pop. That's a far cry from thousands of dollars.

Is that what you pay for the infusion or what the insurance company is billed? I haven't heard of infusion costs this low. The highest cost I've seen is from one MS patient in Alaska who was paying about $ 8000.00 per session!!!

Harry

I heard that Rush in Chicago charges more than 10k per infusion.

I get my infusion either in AZ or CO at hospitals-they are paid approx $490 per infusion and $2,000 for med-this is thru Medicare.

I wasn't clear enough. $498 is billed to my insurance each month for the infusion process. This does not include cost of drug which I get through my prescription drug plan through a specialty pharmacy. I have Blue Cross Blue Shield PPO.

Maybe it is less expensive since I get it at my doctor's office and not through a freestanding infusion clinic? (they do call it an infusion clinic though since other people are around me getting it too).

I'm still trying to figure out why one infusion center will charge about $ 500 for the process and we read some charge as much as $ 10,000.!! Doesn't make any sense at all.

Harry

Some infusion centers are run by the very same neuro's that recommend that their patient "needs" Tysabri. Wonder if that makes a difference ...?

Cherie

just a reminder that this dedicated thread is intended for those members who use Tysabri as a treatment, or who are considering using it, but not for other members who may have comments against its use, who do not themselves use it

If you are not someone who is on this treatment and you wish to start separate threads below on your views/comments of this drug, feel free to do so(provided they conform to the guidelines of NT) but please do not post them on this sticky thread unless you are a Tysabri patient.

thanks

You're right, Harry - it doesn't make sense at all.
A large infusion center here in Pittsburgh charges...

Tysabri: $2400 - Insurance pays $2400
Injection: $580 - Insurance pays $202
Compounding? $900 - Insurance pays $300
Total $3880 - Insurance pays $2902

We have good insurance and our 'out of pocket' expense is zero
because the MD/Clinic are "participating" under our insurance plan
and they accept payment in whole.

But what is 'compounding' at $900 per visit?
Is that where they inject the Tysabri into the saline bag?

MY MS MD and I have been talking. My copaxone seems to be causing me quite a bit of trouble. I have failed off of Betaseron due to liver enzyme increase that set a clinic record, and my MD is speaking of offering me a chance to get in TOUCH.

I must say I am more than a bit scared of the thoughts of it, but am a bit more willing to listen than in days gone by. I would need a port put in, as I have horrific access, and simply couldnt tolerate an IV once a month. Since Medicare is my primary now that the DH is retired, I worry about the cost being covered. I also worry about how it would make me feel.

I know this is a thread for those that are currently taking this med, but since I am being asked to consider it, I thought I would wander over and ask for your opinions. Can you tell me how you feel now that you personally have been taking it? Are you afraid of PML? do you have alot of side effects? Does this whole thing consume your day, or do you just forget about it till the next infusion day? What would I be able to expect from the TOUCH team?

Thank you
Dejibo

sorry for me maybe not wording my previous post clearly enough:o....yes, this thread IS also for anyone considering Tysabri treatment as well as for those already on it

what I was trying to convey was that the thread is not to be used by those who are anti-Tysabri yet not on it or considering being on it. It just muddies the water when those kind of posts are made on this thread, although they can be made on separate threads on the forum

Dejibo,
I go for my 5th infusion on Monday. PML doesn't scare me. I know it is a possibility, but this disease scares me more. I was on copaxone for 7 months and continued to have relapses, never fully recovering from a post partum relapse that took away so much from me. My symptoms have not improved (yet!!) with Tysabri, but I have not gotten any worse as I was on Copaxone.

I have had zero side effects with tysabri. I'm sleepy for a few days after, but nothing else.

I think tysabri is our best hope in slowing down progression until something else comes along. I have to believe that. Good luck with your decision. I need to tell you that your advice really helped me with the first few difficult months with copaxone. For me, tysabri is a breeze in comparison!

Dejibo,

I just had my 28th infusion. I rarely think about PML. If any new or worsening symptoms crop up, I'm to notify the neuro so that they can rule out PML. I haven't had any new symptoms other than the tiredness I usually feel for a day or two following the infusion.

I previously took Avonex, Rebif and Copaxone and I feel the best by far on Tysabri. I even had an improvement in symptoms which I didn't expect to really happen. The TOUCH process can be a bit difficult in the beginning, especially when dealing with Biogen (at least in my experience). I was on them all the way through the initial process though and if they missed information, I corrected them immediately and got them to fix it and verify with my neuro's office.

Good luck with getting started on Tysabri if you do decide to make that decision. :hug:

Hi Dejibo, I am on Tysabri and Medicare is my primary. Medicare pays 80%-it allows for approx $2400-which leaves about $480-which my secondary pays. Without a 2ndary you'd have to pay the balance-maybe something can be worked out with Biogen-I don't know:confused:

Thurs was my 36th infusion :D I do not think about pml. When I started the odds of pml were 1/1000 they are now better. I am a Ty cheerleader...if it hadn't been for this med I know my QOL would not be as good as it is.

Good luck and best wishes,
Linda

Hi Dejibo,

I've had 13 infusions so far. I am very glad I am on this medication! :) The fact that I only go once a month for an infusion has enabled me to sometimes forget I have MS as opposed to dragging out the copaxone shot every night. Those shots really hurt sometimes and made me feel really sick!! Sometimes not thinking about the MS is a wonderful thing and Tysabri has given me that. The side effects of Ty. are minimal or non-existent. I've had some but they only last 2-3 days after an infusion -- fatigue, headache, a little nausea, low grade fever.

Sometimes I worry about PML but I think that is more a function of my personality than anything. I worry about MS also. I tell myself this disease is about "unknowns" and I'd rather take a PML risk than a risk of the MS progressing quickly to the point of severe disability. I've had 2 MRI's since being on the Tysabri and nothing has changed one bit. Actually, I had more anxiety about going on the drug then I do while actually being on the drug -- only because the process took awhile to get kick started.

Anyhow, good luck with your decisions. Come back here for more questions if you have them.

:hug:
Natalie

Hey everybody!
Hope everyone is doing well! I only have a few minutes but I wanted to update!

Tysabri # 28 on 7/14, went as usual- no problems, no concerns.

I packed up after the infusion and trotted off to parts unknown for a bluegrass festival and guess what? NO SALMONELLA this year! :D

I was able to hike up a giant hill repeatedly throughout the week without collapsing, even in the stifling heat and humidity and sun (something we haven't had much of in Maine yet this summer!) I am sunburned, worn out, should have scheduled better so I wouldn't have to work after driving all night to get home after the festival and have too much on my plate to even give justice to the rest of my life right now!

I noted some good stuff came out of Biogen and Elan the past week or so about re-myelination, PML treatment and other studies. When I get organized I will post further but you all can look them up or google them and read more.

Hey RW, I'm glad you didn't get salmonella this year!! Sounds like you had a great time. When you have the time I'd love to see the links to info on PML treatment that just came out.

Curious as to whether other Tysabri patients have had to recently give blood samples?

Would be interesting relative to comments Elan recently made on their conference call - that they are coordinating information they have learned regarding JC virus and PML with scientific experts to ensure robustness. Talked about potential individual risk factors such as level of JC virus antibodies, JC virus genotype, length of prior immunnosuppressive treatment, and duration of Tysabri treatment.

Hi Natalie!
Sorry so long in responding, lots going on.

The PML news I heard was the same as Komokazi reports, that BIIB and Elan are compiling info that may lead to better treatments for PML. It seems that JCV has more than one genotype, and that only people showing a certain genotype may be developing PML Also said in one of the meetings that only approximately 50% of world population carries JCV, not the 80% previously reported. It's possible that your report about the doc who was doing the blood tests on Ty patients is involved in this so anything you can find out will be helpful.

I don't know anything further yet. I haven't been up to speed on my usual reading since summer has overtaken me (now that it has sort of stopped raining!)

The remyelination study that was reported July 4th was the study that they released the abstract on for AAN conference back in ?April?

I think I've been remyelinated!:D I can't stop! I have to give the credit to Tysabri since nothing else has changed in my life. I'm up, I'm awake, I'm moving and busy trying to catch up on all that stuff you can't do when it's pouring out! There are days when I don't need Baclofen OR Provigil at all, and for me that is saying something! I just haven't needed to take them!

Hope all is well with everyone and that you are having some sun too!

River,

I think Biogen's and Elan's efforts are to try and identify risk factors for PML. It would certainly make patients feel more secure with the drug if they knew they didn't have PML risk factors.

We now have the 11th case of PML in a person from the U.S. I didn't see any announcements of this on the forum in earlier listings. I posted this exact post on a separate thread.

This was published a few days ago. The article says that for those on Tysabri for 12 and 18 months the risk is still WELL below one in 1,000. One analyst from Deutsche Bank claims the rate is actually approaching one in 1,000 for those on Tysabri for more than 24 months. 43,000 people are now on the drug.

http://online.wsj.com/article/BT-CO-...24-714686.html

Another article reads "The PML incidence remains below the long-projected risk of one in 1,000 patients developing the infection. After the previous case, a Jefferies & Co. research note last month put the revised PML incidence at one in 2,490 after 12- month Tysabri therapy; one in 1,400 after 18-month therapy; and one in 680 after 24-month therapy." Kinda scary.

http://www.nasdaq.com/aspx/company-n...tysabri-update

This is even more worrisome to me.

"Biogen said on its earnings conference call earlier this month that it would in future communicate new cases by word of mouth to physicians and patient advocacy groups."

http://uk.biz.yahoo.com/24072009/323...tion-case.html

BUT....I will still stay on my Tysabri for now.

question for you Tysabri uses about the infusion
 

I've gotten my past 2 infusions at a new place and I think they may be doing the saline drip after the Tysabri drug itself a little bit differently. After your medicine goes through over 1 hour, how long do you all get the saline drip for?

Mine is anywhere from 10-20 minutes I think, depending on how fast the drip is moving. Then I have to sit and wait for the rest of the hour before they check me for rash and my vitals.

My infusion center runs a bag into me at TKO rate, for an hour.

1:00-2:00 -Q&A, vitals, call pharmacist to mix and deliver, Set up and start IV with normal saline, pharmacist delivers, bag is checked for drug name and mixture to ensure it's mixed with normal saline, Tysabri hung and started.

2:00-3:00- Tysabri runs, vitals checked once or twice, chat with nurses, watch TV, sleep, check time repeatedly to see if it will go faster if I keep checking...

3:00-4:00- Saline drip for an hour, check time every 5 minutes and ponder bribing nurse after 1/2 hour, walk around infusion center, look for candy on counter at nurses station, look for new magazines in piles of old magazines...

4:00- Vitals checked and FREE! :yahoo:

Just had #14 today. Slowing down the infusion to 2 hours followed by 1 hour of saline drip is the TICKET! Just a hint of nausea and mild fatigue which I can handle. Nothing else!!

After some complaining and pushing and cajoling I finally found the perfect combo! :yahoo:

Other than that, not much else to report. Plugging along and waiting for summer to be over. It's 100 degrees today.

OH WAIT! I had to come back and add something I forgot. Last night I ended up in the E.R. with minor abdominal pain. I woke up in the morning with the pain but kept thinking, oh it's probably nothing. I finally decided to go in and get checked just to be safe. At first they thought I might have appendicitis! But it turns out I had a ruputured ovarian cyst. Everything is fine.....But RW, I couldn't help think of you and your appendix awhile back!

Ouch Natalie, I had that happen once and I collapsed on the floor while working out. That was a few months before I had a hysterectomy (another story, lol)

I'm really glad your infusion went better this time. :hug: I hope your ovarian cyst won't be giving you any more pain. It makes me queasy just thinking of that. :o

I only get a hypo of saline before and after Tysabri. This is in the hospitals both CO and AZ.

OUCH on the Ovarian cyst, Natalie! Hope you are done with excitement for awhile!

Do they just leave it alone when it ruptures? I ask because when they did the CT scan and xrays looking for what was ailing me, they noted an ovarian cyst and I wondered if that was causing my problems. Funny how they could see that and NOT the appendix! The tech said OC's are normal in "women my age" *SLAP!* Good thing I was high on morphine!

I tell ya, I cannot wait for menopause! Yesterday I went out on my lawn again and screamed "COME ONNNNNNNNNN MENOPAUSE!!!" I'm 50, had it all since I was 9 and I am just freakin' DONE with it all!

Linda, I wonder why the procedure is so different from one infusion center to another? My infusion center won't let me out until that hour is up and keeps the saline IV running the whole time!

I must stay the hour after but minimal saline-I guess only used to flush the line. I also get different protocol with blood pressure and temperature takings ?? Who knows (I wonder) what really needs to be done, other than us paying really close attention to our own body and sx ??


Wishing us all WELL ;)
Linda

Had my infusion yesterday, #29 I think. :)

It went fine but had a bit of blood gushing when she took out the needle. She always apologizes profusely for that if it happens (maybe 3 times in over two years?) but it doesn't bother me at all. I'm just glad to get the meds and head home in an hour lol.

I had stopped taking Trazodone for a sleep aid but had to add it back in this past week. The Provigil can keep my mind intermittently active so if something wakes me at night, my thoughts start revving up and it can take me an hour or more to get back to sleep. It doesn't happen when I use Trazodone. But it seems to increase my cog fog until mid afternoon so I'm using it every other day to see if that works out ok. It's a very old and cheap drug and good for MS patients to use as a sleep aid, that's why my neuro RX's it.

Hi Wiz--glad your 29th infusion went well! I took trazodone many years ago for sleep problems but I had to stop b/c it just made me such a zombie in the morning when I woke up...it took awhile just to get going and I had drug cog fog pretty badly. Hope you can get some good rest! :)

Thanks for the info Natalie. I might ask the neuro next month for something different, or just use nothing at all. I need my morning energy or else I get nothing much done during the day.

Howdy from Vacationland!

I just waved bubye to the last of my 25+ family members who have been here on vacation for two+ weeks. I have to go back and clean the place up and haul out bags of laundry and trash. Weather is 90 and sunny! :D (big change from the 55 days of rain in June/July!)

Left the island of love for my infusion (yes Wiz, #29!!) on the 13th, as usual, no problems, no concerns, in and out 2.5 hours! They were prepared for me and my infusion started within 15 minutes of entry!

I actually needed that "kick" this month, I think there was so much activity and so many people that I used up my energy stores before my month was over. I feel better today than I have in two weeks as far as energy and spazzing goes! I had to increase my Baclofen during the day for the first time since winter. I was down to one dose late in the day, but I went back to the noon dose cause my legs were on their own vacation, it felt like they ran miles by noon and the spasms were killer! :cool:

All in all a good vacation, but I am looking forward to a few days without diapers and screamers before work starts! ;)

Hope everyone is doing well!:)

Some good news today! Had an MRI this morning & saw my neuro after. He was very happy with how it looked. Told me he'd been worried since my last MRI in Feb looked so "dismal" (glad he didn't use that word when I saw him then!). This scan showed no new lesions, no inflamation, some permanent scarring, but several disappearing ones, too..
Looks like the Tysabri is doing what it's supposed to!

Oh YAY Polar!:hug:

There's nothing like that first MRI that says it's working! I'm soo happy for you!

That's great news Polar!!! I'm very happy for you! :) :hug:

An update about the Trazodone: I'm back to taking 50 mg each night and I get good quality sleep. I'm taking 100mg Provigil twice a day, one in the morning and one at about 1-2pm or so. I'm doing pretty good with this. I am sort of groggy in the morning but I can't expect perfection at 51 years old and having MS, can I? lol :rolleyes:

I have been trying to exercise more to keep my strength up and that helps my energy levels too. Today I'm buying a Nerf football and a regular basketball to get some variety with my exercise. I always feel so much better when I get moving regularly. :)

Polar: Congratulations!!! It's nice to get good news instead of bad news! I am so happy for you. :)

Wiz: Glad you are sleeping better. Wish I could say the same thing about my own exercise plan!

Well, no exercise Sunday through Wednesday. :rolleyes: Today I'm going to do three types to get caught up (at least I think I will, lol.) :o It's easier said than done. I definitely have more strength with the Tysabri though, so when I do exercise, I seem to be stronger and get more benefit out of it.

Update from earlier today:

I bought a new basketball yesterday. I bounced it down to the park, 1 1/2 blocks away, then shot hoops for nearly 20 minutes. What a workout!! :eek: I bounced it back home because it was getting a bit warm out. I worked in the garden pulling weeds and putting rabbit fencing around my moonflowers so I might actually get to see them bloom this year. That took 1 hour and 40 minutes. It was lunchtime then so I was toast.

I thank the good Lord for Tysabri. I deal so much better with the heat and gardening is nirvana for me. :)