NeuroTalk Support Groups - Tysabri Information & Check In

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Keri

These are the kinds of situations that I brought up at the recent RiskMAP review of the TOUCH program. This is exactly what is NOT supposed to be happening anymore...I am furious for YOU...

I am going to copy your post and forward it to Biogen. To the person who is in charge of this program. You are NOT an isolated case.

You bet you should call the hospital. They cannot possibly be full. Call the infusion center, they also cannot possibly be full. The TOUCH people are not helping you, they are getting in YOUR way.

This is a system that is supposed to run smoothly and in your case it is obviously NOT...they - all of the - are adding stress to YOU and that is not what needs to be happening. The comment from your docs office was totally uncalled for. He's busy and sees a lot of patients? Geez, she needs a little course in how to talk to patients.

I am so sorry for what you have gone through. It is totally unnecessary.

The washout period as defined by Biogen/Elan is 2 weeks, not a month. Sounds like your neuro is being overly cautious, but maybe that's because he has so many patients.

Take care Keri and keep us posted. :hug:

I just received the results of my bloodwork for liver in the mail (only took 2 days -- had test on Thursday) and everything was within normal ranges. Yay! Now I have to be patient and wait for the results from the antibodies test.

Thanks for jumping in here Cheryl! Your help is appreciated yet again!:hug:

I had hoped that MSActivesource had ironed out the wrinkles since I started. I remember what I went through with them when I first started, and after three weeks they hadn't done a damned thing. The garbage about the paperwork that was sitting right in front of them, their little cheerful welcome call when I made the girl cry, the "oh yeah, didn't anyone call you yet about that?" etc.

This whole program doesn't seem to have improved. Too many people are getting the run around. Incorrect information gets passed out as fact. No investigation is done on coverage and co-pay. Faxes are lost. Med doesn't come. There's a different answer every time a new person signs up.

I am willing to do whatever I have to, to get this crap straightened out. If phone calls, letters or standing out front with a sign will work, please give me some input.

I'm putting together a timeline on what I have been through, between no information being available, different person every time I call, etc. My side of the ballgame is on top of everything. Infusion center faxes the stuff in front of me, Dr. signs and faxes in front of me, I get a copy with the time of the fax right on it, yet Biogen says again...we didn't get the fax...my pharmacist at the hospital keeps an extra vial on hand now because they can't get their thumb out of their backside long enough to fax the specialty pharmacy on time!!

It's gone on too long! :mad:

Quote:

Originally Posted by RedPenguins (Post 232052)

Well - the "story" is this -

My neuro's office used to offer infusions there - but their practice is so large - and they have over 80 patients on Tysabri - that they don't do it there, but use centers instead. I do have a hard time believing the local place is full - but it is possible I guess....I might try to call on Monday and see for myself. Of course, the local center is across the street from the neuro's office...which is also across the street from a major hospital. There is a chance it is full - but I guess that just seems hard to believe.

The rest of this email is kind of an angry rant b/c I'm so upset and feel so broken-spirited and defeated.... just needed to write it I guess....and hope that maybe someone can relate a little.

Today I finally think I made SOME progress on this whole Tysabri journey....I've been trying hard NOT to call and bug my neuro's office or the TOUCH people - but now I am seeing that if I don't follow up on everything - nothing happens. First my neuro's office sent in all of the TOUCH paperwork w/o the doc's signature. :eek: TOUCH told me they had contacted the doctor and were waiting. Well, for some unknown reason it took 2 weeks to get the neuro's signature on it. :mad: I saw neuro today actually - and was informed that the person who was handling all of that stuff is no longer with them (aka: she was fired for not doing her job correctly).

Called TOUCH today to see where we were with insurance - as they finally received the doc's signature last Friday. So the woman rattles off my benefits to me. I knew my benefits - I could recite them to anyone by heart now. She then told me that the ins co requires prior authorization. I was dumbfounded - and was just like - um - isn't that what you guys were supposed to be doing for the last week?! :confused: She told me that the doctor's office does it. Ugg. So I called the doctor's office (mind you - I was going in for my appt an hour later)....and they tell me - no, TOUCH does that. I said I just got off the phone with TOUCH - and they said it's medical stuff - the dr has to tell the ins co my medical stuff. She said no and to talk to my case manager - as this guy handles all of the neuro's patients. I called back TOUCH. I try to get my case manager - but that never seems to happen. I tell the person who was unfortunate enough to be on the phone with me (I was very upset at this point) - that my neuro's office said they were supposed to do it. TOUCH was very nice - and again explained the same thing about the medical stuff - which made sense to me! I call back neuro's office - and to be honest - I'm about 4 steps beyond upset and moving into angry - which I really didn't want - but it's just SO emotional at this point. Talk to neuro's office - repeat what TOUCH said - and the woman is like oh yeah - you mean authorization for the medicine? If I could have....well, it doesn't matter - but suffice it to say - I wanted to scream at her. I was like DUH - I just called and said that to you!! Grrrr. So she says she doesn't think they received the request from TOUCH to do that yet for me. To which I informed her that TOUCH faxed the info to them on Monday - everything all filled out - dr just needs to sign. She puts me on hold and pulls my chart - and said, "oh yeah - it's here" - Again - trying to remain calm...I ask if they planned on signing the form and sending it to Blue Shield or was it just gonna sit there forever unless I had called. She then told me, "Well the doctors have lots of patients." That was the lamest excuse I have ever heard - I'm sorry. I know the doctor has a lot of patients - but he must sign off on things daily! This was ridiculous.

I hung up the phone and just cried for 20 minutes. I didn't even think I'd be able to make it to the appt...I was so upset and just feel so defeated. And it's all "stupid" - b/c I cant start the infusions until next Friday (b/c neuro wants me clean from copaxone for a month)....but this process has been going on for 3 weeks. I guess my nerves are just beat - I know it isn't a big deal that I'm not on meds right now for the last 3 weeks - but it freaks me out. That - plus the fact that as I get closer to actually doing the Tysabri - I am nervous. Add to that that I've been in this exacerbation (which I don't know how they call it an exacerbation or flare-up if it's the first time it's happening!) - anyhow - been in this for 10 weeks. I was dx 9 weeks ago today and that is also upsetting to me. I have had 2 courses of week-long IVSM....and the symptoms get better for a week - and then they return and sometimes newer ones come, too. For me - it is a daily struggle not to feel hopeless all the time. Fortunately, there is a large part of me that is a fighter (which came out when dealing with TOUCH and my neuro's office about this whole thing)....but then there are times that I want to wave a white flag b/c I'm just SO tired already. I had my little breakdown for 20 minutes or so (and I'm NOT someone who cries - but for the last 9 weeks - I have cried)....and all I thought was "I can't do this...I don't have this in me." I hate feeling defeated like this.

Did make it to neuro's office. He asked how I was and I told him I was upset with him and his office. Then I went on to tell him how sick I've been for the last two weeks and am seemingly getting worse. He did full exam and agreed that I'm definitely declining. :( Not so happy about that. He filled out the form for the insurance company and I watched as they sent it over to them! yippy. He thinks Ty is gonna help and may be my best bet now. I know it isn't a cure - and it won't fix everything - but I really have to keep functioning by believing that it is going to help me fight this awful disease.

Sorry I ranted so much....I just feel so awful...and I wonder if this "flare-up" is ever going to end and if I'll ever be able to function again even close to how I used to be.

~Keri

Keri,

I am sorry you are dealing with the incompetence of all parties involved.
You shouldn't have to go through this. I wish it could be as simple for you as possible. I was under the impression that things had improved. I know when I started, I had to do some major screaming to get things rolling, but that was a year ago! I'd forgotten what it was like to get the people at MSActivesource going. Your post reminded me and it makes me very angry that this is still happening.:hug:

Quote:

Originally Posted by barb02 (Post 232347)

Barb!

I am so glad that your liver is looking lovely!:) This means a celebratory glass of your favorite beverage is in order!

Please let us know how the antibody test turns out! :hug:

RW --

You and I both KNOW who we need to talk to at Biogen. I think it's time we did some politiking...I am game if you are...

Plus the fact that I am headed to DC in May for some political stuff to do with MS and I am sure Biogen is going to be there....shall we?

They are already know me by sight. ;)

Quote:

Originally Posted by Av8rgirl (Post 232508)

I'll call when I am done with this #$%^&*( Lexsquawk printer download that is supposed to already have a driver. I am 2 1/2 hours and 84% into the download on my wonderfast dialup....grrrr!

Ya give me heart woman! When more than one voice joins in to correct injustice and all that...I'm in.

Thanks RW, Barb, and AV8r...

I feel a validated a lot - which I didn't even know I wanted, or maybe, rather needed. If I may: :grouphug: Thank you.

I thought when the woman at neuro's office told me that he had many patients, etc. that I was being unreasonable for thinking that he shouldve signed the paper requestion authorization the same day he got it. Really, though, that his office even sent over the original TOUCH paperwork without his signatures really baffles me!

I tend to be VERY aggressive - I'm a New Yorker, afterall - and I can come on strong. I guess at this point in my life (being completely humbled by the MS right now) - I was taking it easy and just going with the flow (I live in Los Angeles now - so go with the flow is the mode here).... I just figured I'd sit back and let everyone do their work....and not be my usually pain in the ***** self.... Well - that's not gonna happen again.

Yeah, TOUCH really ****** me off in the first place - not sure I explained how they sat on stuff w/o the signature....so here is more of the time line - as they received my paperwork on a Friday - I called on Tuesday to make sure they received it - they said they had but it was missing signatures....the next day, according to them, they called the Dr. to get those signed. Well - when I called back a week later - they hadn't heard from the neuro - now - okay - so we can "assign blame" on the neuro - but why the heck didnt TOUCH keep calling my doctor?? How long would they have let it go on? When I called the doc, they said they didn't hear a thing from TOUCH re: no signatures. So, one week down there. Then you know the rest.

Now, I'm VERY new to all of this - being sick, the MS, etc....but the thing is - when i was growing up, my mother struggled with cancer - she went all over the country - tried every treatment - experimental or otherwise (we were actually shocked that by the time she died she hadn't started glowing in the dark or that she never grew a tail!)....anyhow - I'm pretty aggressive about medical stuff - I push my friends when they need tx, etc. I guess I will just return to being my old NYer self and get the job done.

I know the washout is usually 2 weeks - no idea why doc wanted 30 days - which is very interesting since I was only on Copaxone for 4 weeks to start with. But I must say - I filled out the paperwork for copaxone/shared solutions - and I was at my sickest - in fact - you could barely read my information as I was seeing double, etc. After that - I didn't do a thing to get the copax....I was home, sick, receiving my IVSM....Within 5 days everything was taken care of - they got approval from blue shield, they got me the meds...all I did was supply the credit card number one day. They made it SO easy....they sent the nurse out the day I received the meds. No problems whatsoever. in fact, my biggest complaint was the SS called SO many times to check in on me...it was getting annoying. LOL - actually, they called absurdly early in the morning until I asked them to mark my file not to call before 10am CA time (they were calling at 8am).

I am going to call the infusion center near my house. I know many people travel far to get the Ty....and I know that I would travel wherever I needed to - no matter how far away - but it's just crazymaking that there is a center a few blocks from my house and I can't go to it. It may very well be full....we shall see. Maybe I can sweet-talk them into it. My thought wasn't that the center was too busy - I wondered if TOUCH or whoever put a cap on how many can be given Ty at one place....and I imagine that many people are getting Ty at this location as it is across the street from the neuro's office - and this neuro is in a group that has the largest private MS practice in southern California, outside of the teaching hospitals.

So just another day...I will be calling my neuro's office on Tuesday to check on the insurance. actually maybe monday afternoon! I have always had good luck with Blue Shield approving my stuff very quickly. This time I will not sit around and wait to hear from someone!

Meanwhile - I hate that the IVSM gave me a false sense that I was improving from the flare up....It tends to help for a week and then I'm nearly as bad as I was in the first place...altho at least right now I can drive during the day because I can see most of the time.

Still not sure how everyone manages to live with it. I know it gets easier, supposedly, as time passes. I just don't know what to do to get the time to pass while being in so much pain or what to do in the meantime while the time passes. Does that make sense?

I hate being sick. I hate MS. Right now it does have control over me...it dictates what I can and can't do at any moment...and usually it's more of the "can't do" then can. :mad: (Well, I guess it's about time that I started to get angry.)

I'm glad this forum is here....it has helped me tremendously the last 8 weeks - not sure how I would've gotten thru a lot of this without being able to read what others have gone thru and experienced - and being able to share my story here.

Oh yeah, neuro gave me paperwork to get a baseline on all of my bloodwork, including liver panel.

~Keri

Hang in there Keri. You are NOT alone. RW and I do know people and this is just absurd what you are going through. I am going to make a couple of phone calls first thing Monday morning...and at least one or two emails to some of the top people at Biogen...this is totally NOT acceptable.

As RW, and some others know, I spent a lot of time putting together a very vocal presentation for the FDA last June that Biogen was less than happy to hear...about how their wonderful streamlined program did not work...I did get their attention. But obviously they have not followed thru with a lot of their promises to patients.

Well...I am the squeaky wheel, right RW???!!! LOL!

Psssst!

Keri?

If you go back to post # 2, you will understand that there are people who have BEEN through this whole thing from the very beginning to where we are now. You are not alone and there are people who can help. Hang in there, ok?:hug: