Tysabri missing infusion what will happen?

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Tmcbroom
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Tysabri missing infusion what will happen?

Post by Tmcbroom » Sun Jan 14, 2018 10:40 am

Hello
I am a 43 years old women, I was diagnosed with MS 5 years ago (by accident, long story) currently I am on Tysabri , it’s been a year in a half. The 1st 4 mths I fought kicking and screaming to make my insurance company pay for it. I met every criteria they had in writing in order to be approved. Their reason for denial I did not take Copax as a pill , I took it as injection for 2 years!! (No where did it state this in there rule book) i was never given the option to take a pill!! I would not stand for this even though I was able to get it for free from the drug company. I started the drug but I was not going to let my insurance company BCBS of Michigan get way with this, I took my case to the state for their decision. My doctor told me not to waste my time, I was getting the drug, you won’t win. I won and the state made BCBS cover the drug. My doctor uses my case for others who have been denied, to help them win. Fast forward to now, as of the new year BCBS will only pay for the drug if u go through their approved center. I have been working on this since the day I found out 12-18-2017.... BCBS hasn’t even started my paper work, and once they start I have been told they are 3 weeks behind. I call everyday the infusion center to see if there is any progress, and what about my infusion for this mth. They flat out said “BCBS” does not care, and their statement is “they are going with the study that states every 6weeks needed” even though I have been every 28 days. In the last week I have been really tired, more than normal. My arms and legs feel like I have sand bags tied to them. What else is going to happen? Is everything the Tysabri has done for me going to come undone? I am so upset and feel so helpless....

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Scott1
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Re: Tysabri missing infusion what will happen?

Post by Scott1 » Sun Jan 14, 2018 2:27 pm

Hi,

What a brave person you are. It's a disgusting attitude your insurer has taken. They must be all the same as I had a long fight with mine.
This sounds like a case where public opinion needs to be a real option. Would the lawyer you used and the doctor be prepared to help you make a strong statement that the press would pick up on? Do you have a local MS society that can guide you to connect with the right political contacts (or are they useless like many are)?

It does sound like BCBS are not complying with the spirit of the courts decision. I'm sure their board members would not like to see your story on the front page of the paper. Like my situation, it's the swill in the bureaucracy that don't care. You could write to the CEO and cite the courts decision and ask for response by a particular date. Better still ask your lawyer to write the letter.

As to how you feel, I am unsure what happens if you miss an infusion of Tysabri as I don't take it but there is more than one way to skin a cat and I'm sure we can make suggestions if you want to try them.

Regards,
Last edited by Scott1 on Sun Jan 14, 2018 11:02 pm, edited 1 time in total.

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NHE
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Re: Tysabri missing infusion what will happen?

Post by NHE » Sun Jan 14, 2018 10:29 pm

Tmcbroom wrote:The 1st 4 mths I fought kicking and screaming to make my insurance company pay for it. I met every criteria they had in writing in order to be approved. Their reason for denial I did not take Copax as a pill , I took it as injection for 2 years!! (No where did it state this in there rule book) i was never given the option to take a pill!!
This is ludicrous! Copaxone is not available as a pill. Copaxone has been trialed as an oral treatment and was found to be ineffective. It's a polypeptide and gets digested making it ineffective.

From 2006...

http://www.pharmatimes.com/news/oral_co ... ent_995357
Teva said it had been developing oral Copaxone for six years, but that two rounds of Phase II trials had failed to show an acceptable level of efficacy for the drug in MS.
https://www.thestreet.com/story/1027485 ... axone.html
Teva Ends Work on Oral Copaxone
The decision follows discouraging results from clinical trials.

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NHE
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Re: Tysabri missing infusion what will happen?

Post by NHE » Sun Jan 14, 2018 11:02 pm

Tmcbroom wrote:I have been working on this since the day I found out 12-18-2017.... BCBS hasn’t even started my paper work, and once they start I have been told they are 3 weeks behind. I call everyday the infusion center to see if there is any progress, and what about my infusion for this mth. They flat out said “BCBS” does not care, and their statement is “they are going with the study that states every 6weeks needed” even though I have been every 28 days. In the last week I have been really tired, more than normal. My arms and legs feel like I have sand bags tied to them. What else is going to happen? Is everything the Tysabri has done for me going to come undone? I am so upset and feel so helpless....
The FDA approved Prescribing Information document clearly states that Tysabri's dosage schedule is every 4 weeks.

https://www.tysabri.com/content/dam/com ... mation.pdf
The recommended dose of TYSABRI for multiple sclerosis is 300 mg intravenous infusion over one hour every four weeks.

koneall
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Re: Tysabri missing infusion what will happen?

Post by koneall » Mon Jan 15, 2018 10:58 am

I get tysabri infusion once a month. Toward the end of the month I start to get mild symptoms of dizziness and olfactory hallucinations. They go away as soon as the treatment is done.

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