New to the Forum: Tysabri Out of Pocket Cost

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New to the Forum: Tysabri Out of Pocket Cost

Postby Jenmen0304 » Tue Apr 30, 2013 2:21 pm

I was diagnosed with MS Mothers Day Weekend of 2012. The doctors wanted to put me on Avonex injections. Since I was young and not experiencing too many symptoms, I decided to have a second child before taking the medication. Well, here I am... Just gave birth to a healthy baby girl. Upon returning to my Neurologist today, he told me about Tysabri IV. Gave me a script for blood work and one for new MRI. I came home and called my insurance company(I work for the City of NY as a Teacher) and they informed me It was not covered. If I had Cancer, well then an IV would be covered. So my question is: How much is a monthly IV of Tysabri out of pocket?? AVONEX is covered with a monthly deductible. Anyone out there can help?
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Re: New to the Forum: Tysabri Out of Pocket Cost

Postby NHE » Tue Apr 30, 2013 4:19 pm

Welcome to ThisIsMS. Here is a post that documents some of the reported costs of some of the MS medications. daily-life-f35/topic21322.html#p201655 Biogen has a financial aid program for people with low income or whose insurance won't cover the medications. I suggest that you look into this to see if they'll help. Still, before you start on Tysabri, there are other considerations that you may want to look into such as the PML risk which increases the longer you stay on Tysabri and the risk of stopping the drug after several years which can cause immune reconstitiution inflammatory syndrome also know as IRIS. These are risks your doctor should discuss with you.

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Re: New to the Forum: Tysabri Out of Pocket Cost

Postby want2bike » Wed May 01, 2013 6:02 am

Have you looked at diet as a treatment. Dr. Walhs has done very well with the use of diet and the drugs have severe side effects.

http://articles.mercola.com/sites/artic ... nking.aspx


http://www.youtube.com/watch?v=GJyQTTZr ... _embedded#!
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Re: New to the Forum: Tysabri Out of Pocket Cost

Postby Jenmen0304 » Wed May 01, 2013 7:19 am

Thanks for the advice...as far as the second response- I am all for changing my diet and following this cave man diet and increasing my Vitamin D. Considering I have 2small children under 3, I am scared of not going on a medication to try and stop progression. And then on the other side of the spectrum, I know putting these dangerous drugs in my body really isn't keeping me calm either.
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Re: New to the Forum: Tysabri Out of Pocket Cost

Postby dlynn » Wed May 01, 2013 7:56 am

hi Jenmen0304,
congratulations on the birth of your healthy baby girl!
What scared me was not knowing much about m.s. and also the drugs. I avoided them for 10yrs.
But then I allowed the Dr. talk me into them. I should have done more research on them, as the cause of m.s. is unknown. I quit them after 5yrs. (so glad I did) the side effects were worse than the disease.
The final one,Tysabri, that my Dr. wanted me to use was when I decided that this just isn't the way to
manage my m.s. I'm DMDs' free 5yrs., such a weight was lifted. I know this is a big decision to make,
there's lots of information on this site, no need to rush into anything. I lived many years without the drugs and I'm ok, I can't walk as fast, but I'm ok. Healthy diet, exercise, and a good nights' rest.
God bless!!
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Re: New to the Forum: Tysabri Out of Pocket Cost

Postby want2bike » Thu May 02, 2013 6:47 am

The advice of take your time and study the information is good. Dr. Bergman has an excellent video on autoimmune disease. The doctors will try to scare you into taking the drugs but read what other people who take the drugs have to say.

http://www.youtube.com/watch?v=zGmyUppmt-g


http://www.askapatient.com/viewrating.a ... PerPage=60

http://www.facebook.com/notes/ccsvi-in- ... 1295097210
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Re: New to the Forum: Tysabri Out of Pocket Cost

Postby irboxer » Fri May 03, 2013 1:01 pm

I was taking Tysabri for a year only because I was JVC positive. I also work for NYC, civil service and my treatments were covered, except for the co-pay.

I've had MS for 13 yrs, I was off DMDs for a while until I had a two flare ups a few years ago. You don't know what damage MS may be doing to your body until symptoms appear and sometimes there can be CNS damage and not have any symptoms. That's one of the reason I went back on a DMD. Find one that works for you, if not Tysbari, there are others. I read the research on MS drugs regularly and read up on MS when first diagnosed. It helps to be aware.

I exercise regularly, and try to eat well and get a full nights rest, but I don't have a newborn! I'm very active, I cycle a lot and earned my black belt in karate last fall and I could not have done it without being on medication, eating well and resting.

Good luck.
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Re: New to the Forum: Tysabri Out of Pocket Cost

Postby Jenmen0304 » Mon May 06, 2013 3:23 pm

Update: today I spoke to a woman from my Neurologists office...we are still waiting for my blood results to find out if I have the JVC virus. (Is tat the name?) I told her that I didn't think Tysabri was an option fir me because my insurance would not cover it (and at $90,000 a year out of pocket I would not be paying out of pocket) and she told me that my insurance has specific codes for the IV and I would e covered by my insurance. Weight off my back? NO not really. I keep researching and driving myself crazy. Began to slowly change diet and am waiting from doc to give ok to begin excercise regimen (just had c section 4 weeks ago). Am usually a very positive upbeat person, but this MS is pissing me off...
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Re: New to the Forum: Tysabri Out of Pocket Cost

Postby lyndacarol » Mon May 06, 2013 5:56 pm

Jenmen0304 wrote:Update: today I spoke to a woman from my Neurologists office...we are still waiting for my blood results to find out if I have the JVC virus. (Is tat the name?)... Began to slowly change diet and am waiting from doc to give ok to begin excercise regimen (just had c section 4 weeks ago).

I think that it's JCV.

There is often a correlation between an MS flareup and giving birth to a child. Did your MS symptoms change or appear during the three months after giving birth? You might want to discuss this with your neurologist.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: New to the Forum: Tysabri Out of Pocket Cost

Postby Jenmen0304 » Tue May 07, 2013 4:18 am

You are right- it is JCV. My second daughter was born 4 1/2 weeks ago, and I am having so many flare ups!!! 9 months being pregnant and I had no symptoms- it was amazing!! I had decided after being diagnosed with MS that I was going to have one last child before I started a drug therapy. I knew this was going to happen, but just hope that it slows down in a couple of weeks when I have to go back to work!!
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Re: New to the Forum: Tysabri Out of Pocket Cost

Postby lyndacarol » Tue May 07, 2013 6:03 pm

I believe that my MS symptoms are mainly caused by the excess insulin that my body produces. I do not know why my pancreas chronically produces this excess insulin.

I know that a pregnant woman produces more insulin than her body needs in order to put weight on the baby she is carrying. (I suspect this is the reason that MS symptoms can improve during pregnancy – excess insulin is used up by the fetus.) After the child is born, some women continue to produce this excess insulin. I think this explains why some women experience an MS flareup after giving birth.

I suggest you request your physician to order a "fasting blood insulin test" – NOT to be confused with a glucose test. I have had several insulin tests (the first result was 12 UU/ML; no later test was lower than 9 UU/ML). The optimal test result is 3 UU/ML or lower. And in the meantime, avoid eating anything that might raise your insulin level even more.

All the best to you.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: New to the Forum: Tysabri Out of Pocket Cost

Postby giddiupgal » Fri Jun 07, 2013 10:13 am

I'm surprised that your doctor suggested Tysabri straight off the bat. Usually it's recommended after other, less risky, drugs have been ineffective. I would suggest you try either Gilenya (oral) or something safer like Copaxone. Injections aren't great, but if they keep you healthier longer, you will be able to take walks with your grand kids. This disease can creep up on you fast. I am on Tysabri after Betaserone and Gilenya were ineffective. I was diagnosed in 2010 and am 51 years old. My specialist thinks I have had MS since my 20's. Go figure.

As far as your tingling during the storm, I feel terrible whenever there is barometric change. I love rainy days but my body doesn't. I am almost normal on days that are cool with low humidity. Now I know why fall has always been my favorite season!

Best to you!

Judi
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Re: New to the Forum: Tysabri Out of Pocket Cost

Postby Jenmen0304 » Mon Jul 08, 2013 3:14 pm

Hi Judy! I'm sorry for the delayed response- I just saw this...

They started me right off the bat with tysabri because I have a lesion on my C2... That's what they told me after I asked as well why they were going so aggressive as a first resort.

I started Tysabri last month. It went pretty well and I feel great. (Well as great as great can be having MS) I have no side effects and hope to see the results in a year. A girl I spoke with had 2 lesions disappear while on Tysabri for 1 year.

Hope you are well...how was your experience with it?

Jennifer
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Re: New to the Forum: Tysabri Out of Pocket Cost

Postby omar1111 » Mon Jul 08, 2013 3:40 pm

hey jen... i am new around here as well... i read your post, and well this is just my 2 cents.. when i was diagnosed while on active duty they started me asap on avonex and it was great.. no new lesions, no flare ups or anything of the sort until i got injection depression about 2 years ago.. my doc also suggested tysabri but i rejected it right off the back due to all the unknowns of it.... now im on gylenia the pill and i havent had any issues... there are plenty of avenues to consider
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