It's go time, so excited!

[dyin_myelin]

Finally got the enrollment form from my neuro. Went in on Friday, tumbleweeds blowing around and receptionists playing solitare on computer (holday weekend and neuros probably already in Nantucket). Respectfully asked for form and was told it had to be mailed to my home and stonewalled when asked why I couldn't just pick it up then and there.

My friend called (who could have been anybody) and was told that the neuro said not to give the form to me until we had a discussion. So, they basically had no intention of mailing it to me. As the owner of the Y chromosme, he explained that we talked about Ty for a long time and I was able to get the form emailed to me yesterday and mailed today.

-Biogen was extremely helpful on the phone, saying that they would get me in patient assistance if my insurance didn't cover. I said my neuro stated they may want to start me on an inferior treatment for economic reasons. He said this was called "step therapy," but promised that it could be bypassed. They can start a file for you to expidite things even if you are waiting for an appt. and will also deal with your insurance co.

-As I said before, I am JC neg and this is a first line theray, but I suspect I have Gilbert's Syndrome because of my familial history and billirubin levels which are always elevated. I understand they monitor your liver function, so I hope I don't have a hepatoxic reaction and I can continue to take Ty. I also tried to commit suicide in HS but have been a happy and productive adult since. I basically don't want to disclose anything that will jeapordize me getting Ty.

I went to have dinner with a friend and he said I seemed really happy and I told him about Ty and showed him some research and the Ytube vids with people dancing and getting their cognitive function back. He asked why it wasn't called a cure and I said probably the way that insulin for diabetics isn't a cure but a maintenance drug, but it was a good analogy because those people were waiting for a definitive cure (stem cell therapy looks like a good lead) and injecting just like we are. I'll post occasional updates in this thread and I will even make a Ytube vid of my own if my results are dramatic.

[LL60]

dyin_mylen
Congratulations of getting Tysabri started. I wish you only the very very best results.
Please do keep us posted on how it goes on your new journey.

[saywhat]

Woohoo for you!!

[lindaincolorado]

Good luck and I hope you have an excellent Tysabri experience

[dyin_myelin]

Friday was a stressful day. I was awoken by Crystal at U Penn, who informed me that my insurance yanked my Ty approval, whereas they had approved it one month ago. Crystal said that they didn't get pre-approval and I said I had covered my bases there and got both my neuro and my PCP to pre-approve.

I then called Sidney at MS ActiveSource at Biogen Idec. She worked all morning. I called my friend and he said, "you're probably not going to get it today. Some cases of MS are benign." I broke down and cried. I peed in a plastic basin in the back seat of my car because I can't hold it and cursed the people at BCBS whose hearts are made of greed, hate, and formaldehyde and who would rather pay for walkers and hospital visits.

Sidney called me back and said she had gotten a peer to peer emergency phone consult with my neuro and the insruance company. I said that I had arranged for a sub for my class and if I had to do step therapy I would no longer be an ideal canidate for Ty since I would have been on other, inferior meds that only work 1/3 the time. I took the train downtown saying please, please, please don't let me be wasting my time. Another hour later, approved!!

The day after I either got the flu or had flu-like symptoms. I was going to pull through the day but wound up getting sick next to my boss' desk and having to have my landlady drive me and my car home. Today I am still weak but I didn't get late afternoon cog fog. If my hands stop shaking that will be the gold standard and I am so hopeful and grateful for this drug.

[lindaincolorado]

So sorry you had to go thru all that #%&* Glad all those on your side made the infusion happen and then sorry you got sick :thumbs_down hopefully you won't experience that again ..

I hope you do really well on Tysabri

[KatieAgain]

You know, out of all the drugs I have taken, the journey to get the drug has never been an easy one. . But once you finally get all those approvals and drug in hand or an appointment at the infusion center...all those bad memories go away. Sometimes getting a DMD is like climbing Mt. Everest.

But it sounds like you are at the top and let the healing begin!

[dyin_myelin]

# 6

Uneventful infusion today. Woman called yesterday that chilled my blood-remembered her name when she called to say my insurance was pulling the plug, but just wanted PCP number to get referral from.

I had some breakthrough disease activity last month. Trouble swallowing, very scary and had to only drink smoothies. Finally went away two days ago. I mentioned, and this held me up by close to an hour. Made apt. with PCP but saw nurse practitioner instead. He said I was too young to aspirate my food and I went on my way.

I did go back to work today afterward though, with no issues. Last infusion was amazing, felt normal and ran errands all night. I think what's going on is MS is making my PMS worse and that is when I get depressed, angry, tired, etc. If Ty syncs up with ovulation week, it has a noticeable effect.

Overdue for JC test, had tested back in August. Will try to get that resolved this month. And, new fertility clinic on Monday. : }