Switch tysabri for ampyra?

[palmtree]

It is just horrifying to hear about this kind of stupidity being voiced with authority. I have had more than my share of those kind of experiences. How could we, the lowly patients, actually know anything!

Knock them over the head!

[Seasha]

The neuro is great but he definitely needs a new assistant.
Thank you all for your help.

Definitely! So glad for you the problem was finally resolved and I hope Ampyra helps you.

[mercadies25]

Update

So finally got the answer. Sorry for the confusion! I will remain on Tysabri and begin use of ampyra. I figured problem solved back to business. She sent my order for tysabri to Wal-Mart as a refill. SMH! The ppl at infusion site called her 2xs to try to fix. They ended up working around her.
The neuro is great but he definitely needs a new assistant.
Thank you all for your help.

[palmtree]

That doctor doesn’t know his butt from a hole in the ground. I hope you have some other options.

I have been on Tysabri since 2010. In 2018 I started Ampyra. Still take Tysabri.

I hope you get this straighted out fast! Going off Tysabri can cause terrible rebounds that don’t reverse themselves.

[lindaincolorado]

I agree with the other posts. Sounds like your dr's office is terribly confused
Good luck
ps I've been on Tysabri for 12 years and was in the study for Ampyra (Fampridine) many years ago while on Ty.

[gargantua]

Call Biogen

I’d call Biogen. They know the people at the Doctor’s office and at the insurance companies and are pretty good at sorting stuff like this out. They do NOT want you to go off T. Did they give you a case manager?

Let us know what happened.

[gargantua]

Kick down the door. Can your PCP help back you up? I’m hoping to turn mine into a neurologist.

[pennstater]

Hello,

I sent in your Tizanadine to your pharmacy on 4/5/19 but the Tysabri medication was replaced with Ampyra. If you need refills of the Ampyra I can refill those.

Have a great day,
Summer P., CMA

Wow. Any further update? That is really scary that they would take you off your DMT for Ampyra,which is a symptom management drug. I would be asking the rationale behind that to make a point, and demand to speak to neuro. Someone doesn't have a clue.

[mercadies25]

From neuro's assistant

Hello,

I sent in your Tizanadine to your pharmacy on 4/5/19 but the Tysabri medication was replaced with Ampyra. If you need refills of the Ampyra I can refill those.

Have a great day,
Summer P., CMA

[mercadies25]

Thanks guys! I know they have 2 different purposes but it shocks me that neuros office would get something so wrong.
I just needed to hear other MSers thoughts to clarify for myself.
They did not call me back today so I will call back in the morning.
I've already complained to the office mgr about this nurse so we'll see what happens tomorrow.

[Seasha]

I am be glad to echo Mable's post ! Those 2 drugs are not supposed to do the same thing.

Count me in as well. At first I thought that maybe they were thinking that the 2 drugs had negative interactions while using together but I looked up Drugs.com to verify. https://www.drugs.com/drug-interacti...1693-2430.html

Nada

Hope you get it straightened out and keep us posted!

[JerryD]

I am be glad to echo Mable's post ! Those 2 drugs are not supposed to do the same thing . Don't take my word for it. Call a Tysabri nurse advocate or an Ampyra nurse . They will know the story. If I were you, I would find a Real, Honest to Goodness, MS Specialist ! If that was the story that you heard from your current neuro, something's not right !
Good luck

[Marco]

You are not confused, but it sounds like the doctor's office is. I hope it gets straightened out directly.

[Mable]

My new side hustle: Getting my medical care straight

I'm not on either of those medications, but when I first saw your subject line my first thought was "NOOOOO, Amprya isn't a disease modifying therapy"

Someone's confused. Nonetheless, I am in the midst of hours of back and forth with doctors offices that don't communicate effectively with insurance companies that don't communicate effectively with doctors. And don't get me started on nurses and other staff who are just guessing. All while my brain eats itself.

Getting everyone aligned is like a part-time job for me lately. If I didn't look at it that way, I'd just be angry and sad all the time.

Best of luck!

[mercadies25]

Mrssaged my Doctor's office that I need a new order for tysabri. They messaged back that I will no longer be on tysabri because I started taking ampyra. I thoight they had 2 different purposes. I'm very confused. Already called office waiting for an answer.