I just wanted to mention that I was approved for tysabri through the TOUCH program and insurance in three days. I was kind of shocked at how quickly it went. My tysabri is sent through a speciality drug company. I have only been contacted once by the TOUCH program so they do not seem to follow up very much compared to Shared Solutions and Lifelines. Although I must admit that sometimes the other companies called too much and were a little annoying. Shared Solutions still will occasionally call me to see how I am doing. I did like the fact that the other two companies would hold teleconferences and publicize them. I have never received any literature from the TOUCH program -- just an on line survey.

Thank you again everyone!

River - are you currently taking Tysabri? I went back and read the first few pages of the Tys board...I think I remembered reading it all thru in the beginning - when I found this place...just needing to refresh my overly hole-y brain! How's the tys going for you? what # are you on?

When you said that you went in front of the FDA to testify - it was to have Tys re-released, right?

Av8r - from what I read on another thread - you are in the study for Tovaxin/TERMS? How is that going? I was looking into that - and think I might try it *if* Tysabri doesn't work for me. My big fear with a study is that I'd only get the placebo - and that just seems risky to me. But I figure it is just a 6month period where I wouldn't know for sure...then a year of open-label. Anyhow - how long have you been participating in TERMS? Is it once a month? Does it involve more than a day? Closest center to me isn't so close - but I have a good friend who lives in Berkely - and it's only an hour flight for me - so if this all looks promising - I might strongly consider it. I just requested info about it. Can you share with us your experience so far? How many treatments have you had so far?

Thinking of that post about worms. Would I do it? If the results were promising, yeah, I'd have trouble actually getting it into my mouth (bad gag reflex here)....but...well....I would do it. Have already made the vow that until I know there is no hope (for me in my situation), I will travel the world and try anything. This MS crap isn't going to take me down. nothing I have experienced in my albeit too long yet short life has taken me down - and as of now until I have further proof that it is hopeless for me - I am not letting MS take me down. That doesn't mean I don't often feel like waving a white flag - it just means that the flag is there - it is always an option but one that doesn't need to be activated yet. Worms don't sound do bad. Besides - it isn't even a needle!!

Besides - couldnt we dope ourselves up before chugging them down?
Then throw it in a fruit smoothie and suck it up!

I'm feeling goofy. Should really be prepping myself to deal with infusion centers and neuro tomorrow (re: authorization from BS). fun fun!

~Keri

Wow! I've just spent the afternoon reading this entire thread--all 17 pages--because I've just been approved for TY. I am 99 and three-quarters percent absolutely as gung-ho on it as both of my doctors are---but I just have that nagging concern, which is a good thing, because it's making me read everything I can find about it!

I have Crohn's as well as MS--which was just DX'd last week--and both my doctors are very enthusiastic about my being on TY. I'm not expecting a silver bullet, but if it will just stem the progression, then any alleviation of symptoms would be icing on the cake!

I'm supposed to get that magic phone call this week with all the insurance info...then my neuro wants to do another brain MRI before we start, so we can do a "before-and-after" comparison. My PCP is all ready to order the first infusion, so now it's up to me to make the final decision....and you guys are really helping with all this great information!

I personally did not travel to testify at the FDA hearings when Tysabri was returned to market. My comments were mailed along with hundreds of others from MS patients all over the USA. My personal involvement continues to be behind the scenes. Av8rgirl testified in person at the hearing and she continues to advocate for Tysabri users at the government level. She can fill you in more on her unique situation.

Good luck with Ty...Biogen has been notified of the problems....

thank you - RW and Cheryl....

Well - another day - another piece of crap for me...

I called the infusion place yesterday. Left message for office manager - that was 10am. By 2pm, no response - so I called back - and then I get told that she isn't even in that day. Fine.

I wait to hear from her this morning - and nothing. So I call at 11am and leave another message. Nothing. Call at 2 - was told she was in meeting - and I asked why she hadn't called me back yet - that this just wasn't right, ya know. 4:45 rolls around and still NO word. I call back - trying not to be a pain - but is it me - or is this just absurd?! I'm told she is on another call - I say I will wait - it was 4:50 at this point - and I had a 5pm client coming in (I'm actually a therapist!)....she finally picks up the phone and was sorta rude to me - but okay, fine, maybe I deserve it. She proceeds to tell me that I'm not going to get the tysabri any time soon - that is a long process.

I take a deep breath and ask her to explain that to me.

First she says that she hasn't received my medical records and she needs those before she can even order the meds.

Um - doesn't TOUCH do this? She told me that my doctor should have known - and I was like what the heck are you talking about?! She tells me I have to have an appt/consult with the doctor there....that is when I realize this isn't an infusion center, but a doctor's office - and this doctor thinks I'm becoming his patient or something?! I don't get this at all. I do know that some people have their infusions at a doc's office and I'm fine with that....but why does it seem like everything is wonky in my case and no one is on the same page - or even in the same book - as each other?!

Then she says she can first order the meds AFTER that - AND that is takes 2-3 weeks for the meds to arrive!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! She also tells me that in the past - she'd have appts set up with people but would have to cancel b/c the meds didn't arrive or whatever.

At this point, I'm trying to breathe - but I'm becoming more and more upset by the millisecond. I say - okay - fine (thinking in my head that I will check in with you guys to see if that is a reasonable thing - or is it absurd - and if it is unusual for it to take that long - I can get on the phone with the pharmacy and get the meds there sooner. So I agree to make appt for consult - she offers me a Monday or Tuesday - and I say it has to be a Friday...then she tells me - but btw, we only do Tysabri on Monday and Tuesdays. By now - I can barely breathe - am looking at clock - thinking there is no way that I can see a client in this position and I'm about to break into tears - all the oxygen has been sucked out of my office. I ended up telling the woman I'd have to call her back - I think I'm going to have to go to another center.

BTW - the center near my house said if I needed to go there, I wouldn't be able to get an appt for several weeks....they are pretty busy. That I understand - so I get the "full" thing a little better now.

Is this normal? TOUCH people knew I needed to have my infusion on Fridays. They said no problem - and they knew I was expecting to start the end of this week - and they told me a few weeks ago when all the crap was happening that it wouldn't be a problem - once they had the info from the doc it would be easy once I had infusion center, etc. etc.

does anyone know what is going on?

I don't know if I want to scream or cry or slit my wrists or what.... but the stress this is causing me is just putting me over the top when I already feel so awful. No amount of anti-depressants is going to make this okay for me. Here I am - practically fighting and begging to get on a med that may kill me or make me yellow or who-even-knows-what.....don't these people get that I'm SICK - and that is why I want treatment?! It's not like I'm dying to be hooked up to an i/v....it's not like I am looking forward to my horrid 20% copay....it's not like I want to be sick with side effects.....This isn't a choice for me....do they not get that???

Because it was already 5pm, I didn't have the chance to call TOUCH - which is probably for the better - b/c in the place I was at - well - it wouldn't have been pretty. Maybe tomorrow morning I will be calmer - but doubtful - I do terrible at nights - between the physical pain and headaches...I get little sleep - and now with this stress and upset.....I know I'm in for a long night....and I just don't know what to do. At a certain point - tears don't do anything, do they?


I feel like typing, "Please, someone help" But there really isn't anything anyone can do.

I'm sorry - I don't mean to be asking for pity or wanting to be in a pity party...I don't think that is what it is and I don't mean to babble and yap . Please forgive.




~keri

I am sorry you are having such a tough time getting everything set up. I do think you need to take a deep breath. It sounds to me as if your neuro's office who first ordered the tysabri is really disorganized or in other words screwed up. They should have scheduled the first appointment for you at an infusion center and followed up on everything. It sounds to me as if they have not dealt with prescribing tysabri very much. I imagaine it probably does take 2 to 3 weeks after you are approved for the first infusion to be set up. I know I was approved very quickly, but there was a 4 week period between my last copaxone injection and the first infusion. During that time, the nurse had to contact the speciality drug company a few times, etc.

I know that my infusion nurse still has to call my speciality drug company every month to remind them to send the ty and she insists they deliver it on the Friday before my Wednesday infusion. I don't have a whole lot of choice on my infusion days or times. So far I have had an infusion every 28 days exactly. My neuro now says he must be in the office (due to my problems) when I have my infusions so I may be limited even more if he is on vacation. Plus he only seems to be in the office on Tuesdays and Wednesdays. I am a professor so I esentially miss my classes and meetings on the days of my infusions and take a sick day. I don't really have a problem with that but I understand others may not have the same benefits or flexibility in their schedules. But I do think you need to understand that they are going to have to schedule you around everyone else who is already receiving tysabri and that many centers may only offer tysabri on specific days.

You are getting the royal run around Keri. I just sent you a PM with some information.

Let me know if there is anything else that I can do to assist you.

i was approved for TY a while ago just had to get my "before" MRI.. done with that now.. getting my first infusion on the 31st of this month.. id be lying if i said i wasn't just a little worried about the 1st infusion.. guess its just the "unknown" and all that stuff.. oh well.

Don't be worried. It is a simple process! As a matter of fact, I look forward to the two or three hours I get to spend getting the infusion. It is a chance to relax, sleep or read.

You will find it very simplistic.

-Vic