Who at Braintalk is on Tysabri?
 

Are any folks here starting Tysabri?

If so, would you be willing to post about how it is going, whether there are any good changes in your MS symptoms, any side effects?

Hey BBS - How are you doing? I am not on T but going off A finally.
Did you ever resume taking anything after A?

Tina

Tina, Hi and welcome home. Nice to see you again. Long time.

Glad to see you too BBS, but I saw you recently at PT.:D

Hi SallyC, fellow PTer, and great to see you again September.

Nope, I am going bare: the only treatments I do are Swank and Swim. No abcr drugs for me. I should say I take daily Valtrex to suppress Herpes, but I think research shows Valtrex does not control MS.

I am so done with Biogen. They refuse to take responsiblity for what happened to my lungs. What I think that really means is that they think they could protect themselves if I were to sue them, so there is no need to compensate me for my lost wages, which is all I wanted.

You know, initially their stance was they were not to blame.

Then, Tysabri caused the 3 deaths and suddenly out of the blue I hear from Biogen's attorney and that they are looking into my case again. So, they got all my records, even my lung biopsy slide, and then, two weeks ago, they let me know they take no responsiblity for what happened to me.

There is a special circle in Dante's Inferno for folks like that...

Are you going off of A because of your breathing problems?

I am gonna give T a try. I have had my MRI, gotten insurance approval, and my doc's OK.

Now I am just waiting for the infusion center to get it's act together and start scheduling infusions.

I've been waiting since the end of August :mad:

I am ready,already! I look forward to sharing my experience, as soon as I start having experiences to share!

Stay tuned!

MSM

I shall be starting on Tysbari in the very near future. We are waiting on the infusion center to get approved by the TOUCH program. I was in the original studies with it several years ago, and when it was opened up, we found out that I had been getting the Tysabri. I did notice a change in my symptomology when I was on it at that time. I felt less fatigue, and had less trouble with leg and neck spasms.

If you'd like more detailed information, you may private message me here. I'll be happy to share my experience with you. Bear in mind that I was also on Avonex at the same time.

I so hope to be started back on it by the end of Oct. As soon as the infusion center becomes certified I will be having my MRI and going in to sign all the gobs of lovely paperwork that is necessary this time around.

I hope both of you are able to get starting soon on your T.

I thought it might be a good idea to have a Ty thread where folks can post about their experiences in a centralized way, so that we have our own little research project going about side effects, improvements, and so forth.

I know I am watching carefully how this Ty goes as a monotherapy.

My DH goes in tomorrow for his final blood test (LFT's and CBC's) and then just waiting for the infusion center, also through TORCH... he should be starting soon, probably within the next month... course, it's not like he doesn't have anything on his plate at the moment... we're moving 100 miles away from where we currently live in the next 2 weeks... so that and starting therapy will be fun... oh, and we take care of our 5 kids with special needs... so, we have nothing but time! ;)

I'll be posting for him more than likely, but he might occasionally come on and say a word or two about how he's doing on the Tysabri.

Dori

Yes..strange thing is that the breathing issues subsided for a while.
New batch..more problems. Doc says go off for 3 months & see if the issues resolve... if so, then I start C.

He asked me about T, I said no way.. the people that died were on A & T.
He said well you would go off A.. I said it would have to be years before I was off A & willing to try T.

Are you still slowly getting better?