Countdown to Ty

[BlessedWyoMom]

The time is getting closer for me to board the Ty train. I am somewhat surprised at how quickly the process is moving. I find myself wavering between a sense of calm and an absolute sense of panic. I hate that I am such a worry wart and wish I could approach things with more of a laissez-faire attitude. I have pretty much gotten over my PML fears and am now stuck on fears of having an infusion reaction. Silly since I'm going to be in a medical facility that is right next to a hospital.

I am enrolled in the Touch program and have been approved for the copay assistance program. I just found out about the infusion assistance program (from my neuro's office-the personal I spoke to @ Biogen didn't bother to mention it) so I need to call Biogen back. I had my blood drawn this afternoon for preliminary lab work. I still need to schedule a preliminary MRI because my last one was more than 3 mos ago.

The biggest positive is that my neuro's nurse administers the infusion at my neuro's office so I am comfortable with the surroundings. He has his own MRI machine, as well. My neuro nearly begged me to give Ty a try, though I keep wondering if my MS is "bad enough" to warrant Ty. I tend to downplay things so I can't really go by my own assessment.

I would really like to thank all of you who do tons of research and post your findings here. It is actually helping to allay some of my fears.

[ru4cats]

BlessedWyoMom,

I had my 20th infusion a week ago today, and I can share with you I absolutely LOVE Ty. I was diagnosed 2 years ago this June, and Ty is the only DMD I have been on. Remember, the goal with Ty is to slow the progression, with the ideal being to stop it.

I, also, feel my disability is mild compared to so many other MS'ers: right leg weakness due to spinal lesions that have damaged the nerves that feed my core and right leg. That's it! I'm still quite mobile, walking my dogs daily (if the temp is at least 20 degrees), and my latest MRI showed no new lesions and the others less active.

I'm sure you've read to pre-medicate with Claritin (or something similar) a few hours before the infusion and a couple Advil before the infusion begins. I did this for the first 10 infusions but nothing for the next 10.

I love my infusion center and love my two hours of solitude. I read on my iPad and make my infusion day "mine".

I have no reaction, whatsoever, and only wish the same for you. Best of luck!

[KatieDidNOT]

You are going to rock it! I too have the same fears as you...I wish I had some sage advice to give you, but I don't as I have not taken Ty.....yet....

But I will keep you in my thoughts and prayers.

Katie

[BlessedWyoMom]

I, also, feel my disability is mild compared to so many other MS'ers: right leg weakness due to spinal lesions that have damaged the nerves that feed my core and right leg. That's it! I'm still quite mobile, walking my dogs daily (if the temp is at least 20 degrees), and my latest MRI showed no new lesions and the others less active.

I'm sure you've read to pre-medicate with Claritin (or something similar) a few hours before the infusion and a couple Advil before the infusion begins. I did this for the first 10 infusions but nothing for the next 10.

I am so glad to hear of your positive Ty experience. I was diagnosed at 20 yrs old in 1998. Up until approx. 9 mos ago, my disease course was relatively benign with 100% full recovery when my exacerbations (only 2 major) were treated with IV Solumedrol. I had an exacerbation last May that didn't seem to respond at all to the Solumedrol. I am still ambulatory without assistance now, but cannot drive due to dizziness and my "cement boots." Though most can't tell my gait is off, it's hard to lug around my right leg, which makes it hard to move my food from the brake to the gas pedal and back. My neuro is very fearful that I will soon be in a wheelchair if I don't try Ty. I've taken Avonex and Copaxone in the past.

I have major year-round allergies, so I already take a Zyrtec every day. I hope that helps ward off any reactions.

Thank you for the encouragement.

[0485c10]

Goodness. Frustration on my part. Longer reply than is practical. Compulsive researcher on my part. Want to take this to email? I left an email address in my profile. Identify your log in name in subject and I will do the same in email reply.

On my home page in the first page of the tysabri section there is a link to "Best Practice Recommendations for the selection and management of patients with multiple sclerosis receiving natalizumbab therapy"

on table 1 of page S28:

Recommendations on patient selection for natalizumbab therapy

1. suboptimal response to beta or copaxone as defined as
-two of more relapses within 1 year
-one significant relapse in past year or mild relapse accompanied by significant MRI changes

and 3 more selection criteria are listed..

It sounds like you meet that first criteria of one significant relapse.

In addition recovery and response decrease as a person gets closer to SP. At this time TY is only approved effective in RR. still in trial for effectiveness in SP.

I had MS unknown for 19 years(1985->2004), i thought I must be near that point where Ty isn't approved to be effective. Another thing going through my mind before i started TY...this might be a now or never more situation for me if ty isn't effective in SP. That must be going through your mind also?

send email and we will discuss.

My info on that comes from the transcripts of the advisory committee, which i took detailed notes as i read. There are links to the transcripts on my home page.


Hypersensitivity reactions were most common after the 2nd infusion.They were strongly associated with antibodies against tysabri--meaning tysabri was often ineffective in those that had hypersensitivy reactions. Most frequent hypersensitivity reaction was urticaria(hives). The latest hypersensitivity reaction in trial was after 13 infusions.

Infusion reactions are defined as adverse events starting within 2 hours of the infusion after that they are hypersensitivity reactions.

per protocol those that developed hives or anaphylactoid reactions were required to discontinue Ty.

lynn

[0485c10]

beta--is beta interferon, not betaseron.

Avonex,rebif = beta interferon 1a
betaseron = beta interferon 1 b

[0485c10]

Also one more thing...

On my homepage, underneath 12/17/2011 is a link to an article you might find very helpful in understanding what is happening to you..

the hyperlink to it is labeled
"Risk of Not treating MS Lesions, article called 'Its just the Tip of the ice berg'"


That cement boots feeling is an issue with "proprioception sense" of the legs. The sense that the body automatically has of the position of its limbs in space.

http://www.newworldencyclopedia.org/...Proprioception