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....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.

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

Thurs was my 36th infusion 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.


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!

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.