Vic have you thought about IViG or Cytoxan if Tysbari fails to be an alternative? Revimmune seems to be a much more toxic alternative with no proven track record for treating MS...at least not from what I've read.

Lucky # 13
 

Just a quickie!

I had lucky infusion # 13 yesterday. No problems, no concerns, nothing but gravy here!

On my way north to drop off the DSS. Back in about 7 hours and I will post more then!!

When I had my appt last week at Barnes Hospital, they also seemed to be the most excited about the potential for fingolomoid. Said IVIG was too expensive with not that good of results; would only recommend it in case of a flare if one can not tolerate steriods. And that they thought cytoxin would be the next approved FDA drug. But they did not recommend it for me based on my experiences with tysabri and other dmd's.

There are two MAJOR obstacles for me in dealing with Tysabri: Tysabri cost and infusion cost.

TYSABRI COSTS:
About ten minutes ago my neurologist, Gail Hartley, called me and set-up a call with the Biogen representative. Gail is amazing! :):):)

Moments after my call from her, I received a call directly from Biogen and they are working out a plan to help me deal with Tysabri costs! I should hear from them on the final cost after their financial assitance in ten days.

Woooo Hoooo !!!:)


INFUSION CENTER COSTS:
I have been contacted by my insurance company and they too are amazed at how my infusion costs have gone from unbearably high to unrealistic. They are investigating the costs and are negotiating with the infusion center now. They may have me change infusion centers to a lower cost one that was just opened here in Riverside, CA. That, in terms of a potential business loss to my existing infusion center, should drop the price significantly!

Another Woooo Hoooo !:)

-Vic

OK now...back...good grief! What a drive...400 miles, mostly at 85 mph...LOL...in a mouse sized car with a ten year old and a cranky 6'6 man...:p

As I posted before, infusion # 13 yesterday. A whole year down on Tysabri. No problems, no concerns, just gravy.

While sitting there for three hours I decided to take apart the tissue thin patient leaflet in the new box and compare it to the old one. Big changes were made to the whole thing. Right off the bat I noted the large 4x3
inch black outlined box at the very top of the page had changed to a light lined 1x3 inch box and it's not all PMLPMLPMLDEATH anymore. The new patient leaflet contains information for both Crohn's patients and MS patients. It includes studies for both. It's a much more positive, much less scary leaflet now.

I'm not going to post the whole leaflet, but for those of you who are on Tysabri, ask for your box and check out the new stuff.

I haven't had a relapse for one year now, the longest I have been relapse free since I was diagnosed. I see my neuro in a week or so and sign for the next six months. I cannot wait. I also cannot believe it's been a year of infusions. I feel like I remember every shot I ever took and now I actually feel like the whole infusion process is just a rest stop in my busy month!

The ONLY complaint I still have ongoing is the spasticity and stiffness. I can live with it, but I don't like it!:cool: I'm still trying different things to try to overcome it, I think the swimming and exercise is doing some good, but the cold water pool still bites!:p I haven't figured out how to get my insurance co. to pay for the warm water saline pool, but the therapists there are working with me on it and I may yet see results from that end.

I've been thinking about the past year and how much has changed for me personally since I started this drug. Life has become something to look forward to again, instead of something to be afraid of. Now I still save for what ifs, but think maybe the what ifs might be GOOD what ifs!

I wish everyone luck with this drug. It's worked for me just as I had hoped it would.

Even if I never get back to where I was before, at least I am not where I could have been if it wasn't for Tysabri.

Thanks for the support from everyone here. You all make it bearable when things are bad and my attitude starts to flop! You ROCK! :)

Hey Gravy Train
 

Riverwild:

You are an inspiration and a great source of information. Glad to hear that you've made lucky 13 with good results. Keep doing what you're doing.

Love of my Life (LL) just had infusion number 6. We see no significant improvement yet - but we also note no further progression. We'll take DMD for now - the cure is out there somewhere.

Thanks for your continued contributions to this forum.
JJ

RW, you have made a lot of progress over the last year. I will attest to that, FWIW! ;):hug:

As for the spasticity and stiffness girl...you are 6' tall and crammed into that mouse car too much! Well...it's a thought...maybe you are still having growing pains! Ha ha...yeah I know...reaching here! Blame it on the steroids. I am still looking for a good med for that symptom too. Not sure what the answer is, but if we come up with one, maybe we can form our own drug company and make a buck or two! :D

Thanks for the good post and keep up the good work! :hug:

I received a letter from my insurance company regarding my Infusion Center costs.

Looks like BC/BS is not taking this high infusion center cost lightly.

The infusion center cost was $2,100 per month, of which I was responsible for $931:eek:. One of the errors made by the infusion center was not just the high cost, the the way which they varied the cost, seemingly at random.

My new out of pocket expenses for infusions has dropped to about $179 !!!!:D

Woooo Hoooo !!!

Now I just have to see waht Biogen can do for me regarding the cost of the Tysabri.

That's one down and one to go !

-Vic

That's great Vic! Perserverance pays off! ;)

It is looking good, Cheryl !:)

-Vic