Questions

[toot2818]

I have been on Copaxone since 2003, use baclofen 80mg daily and have IV methypednsolone very 4 or 5 weeks. I go to a MS clinic and have great support. I saw my doctor yesterday, a six month check up. Had a MRI also just a review since my last one in 2012. Happy results. two lesions appear to have improved there is one new 2.6mm lesion that is active. Doctor has suggested that it is time to chance my treatment. He wants me to go to Tysabri. They did blood work yesterday when I got my IV. I spoke with the nurse, we'll do one more IV in 5 weeks then we will talk about the blood work, contact my insurance and set up my first Tysabri treatment for May. Will be nice to end the shots and the pedsolone

My questions are about: On Copaxone I gained weight, will Tysabri also effect my weight? What kind of problems have people had with insurance? Copaxone has a program that I received a grant to cover my co-pay. Does Biogen offer something like that? Will Tysabri improve my balance & walking?

I'm excited to make the change. Staff at the clinic tell me others on Tysabri are doing great.

Just a side note, I'm in Milwaukee, WI and woke to SNOW! Can't wait for spring.

Toot

[pennstater]

I believe there is some financial support, but not positive. I am fortunate to have low copay thru insurance, so have no personal experience. Hopefully someone will be along who knows more.

I didn't experience any weight gain on Tysabri. While designed to slow progression, some people have experienced an improvement in gait, balance, fatigue, etc..

I hope you can go on it and are approved! Goof luck.

[toot2818]

I believe there is some financial support, but not positive. I am fortunate to have low copay thru insurance, so have no personal experience. Hopefully someone will be along who knows more.

I didn't experience any weight gain on Tysabri. While designed to slow progression, some people have experienced an improvement in gait, balance, fatigue, etc..

I hope you can go on it and are approved! Goof luck.

Thanks for info. I am looking forward to starting it and will post after I do it.

Toot

[22cyclist]

I have been on it for 31 months now. Just converted to JCV+. However, my results with the drug have been so great that I am willing to take my chances for now. We will keep an eye on my index and will know when the chances are too high for me to feel comfortable with, its a personal decision. They offered me Lemtrada, but nobody yet knows its risks for PML.

As far as payment/copayment help, there is some available to you from different locations. 1. is the hospital itself. Most hospitals have some sort of charity care for persons who have insurance but do not make a lot of money and couldn't possibly cover the cost. Go through the billing office and apply. I get it every year.

2. You may be able to get some help from the NMSS, but not usually much, and its usually only one time.

Good luck on the Ty. Drink caffeine on the first day of your first, second and thrid infusions to ward off the Ty headache. After that you won't need the caffeine anymore as the headaches seem to disappear. Sometimes after I get an infusion I get 3 days of chest pain, or 3 days of intense itching, its all an allergic reaction to the Ty. Benadryl seems to help for both.

I think you will like it. I have had no new or enhancing lesions in 31 months that I have been on it. I have had a couple of relapses though, just 2 in 3 years, so not so bad.

Take care
Lisa

[toot2818]

I have been on it for 31 months now. Just converted to JCV+. However, my results with the drug have been so great that I am willing to take my chances for now. We will keep an eye on my index and will know when the chances are too high for me to feel comfortable with, its a personal decision. They offered me Lemtrada, but nobody yet knows its risks for PML.

As far as payment/copayment help, there is some available to you from different locations. 1. is the hospital itself. Most hospitals have some sort of charity care for persons who have insurance but do not make a lot of money and couldn't possibly cover the cost. Go through the billing office and apply. I get it every year.

2. You may be able to get some help from the NMSS, but not usually much, and its usually only one time.

Good luck on the Ty. Drink caffeine on the first day of your first, second and thrid infusions to ward off the Ty headache. After that you won't need the caffeine anymore as the headaches seem to disappear. Sometimes after I get an infusion I get 3 days of chest pain, or 3 days of intense itching, its all an allergic reaction to the Ty. Benadryl seems to help for both.

I think you will like it. I have had no new or enhancing lesions in 31 months that I have been on it. I have had a couple of relapses though, just 2 in 3 years, so not so bad.

Take care
Lisa

thanks for the info--coffee

Toot

[ru4cats]

My 61st infusion is Friday, and I have been very happy with Tysabri. It is nice to have one "stick" once a month; I honestly don't think about my MS for the next 28 days. I take nothing special before or after my infusion, and I have no reaction whatsoever. I consider my infusion my "spa day", a day for me to relax and read a good book.

Improvements vary from person to person. I've had no new symptoms, and my MRI's are stable with no new lesions or enhancing lesions. For me this is success. I'm still dealing with progression from the MS that began before I was diagnosed. Depending on your age and brain reserve, you could very well experience improvement. However, this is not the main goal of Tysabri; stability is.

Best of luck with your 1st infusion. I remember the trepidation I experienced at my 1st one, but for me, they are now 2nd nature. I actually enjoy seeing the friends I've made at my small infusion center.

[hobbit]

No new progression

I have not had any improvements on Ty but I've also had no progression and for me that is a win. Dx in 1993 and on Ty for a year, I have had weight gain and as much as I would like to blame it all on Ty it is most likely due to mobility issues, so now I am exercising when possible.

The day of infusion, I am very sluggish so I plan accordingly. I have had no side effects from Ty, so much easier than Rebif.

Peace,
Anna

[lindaincolorado]

I have had well over 100 infusions Thank G-d and Tysabri progression halted, some sx abated, MRIs no new or active lesions and some old got smaller or disappeared
About 1 yr ago my jcv # went a bit (.24-.27) above negative (.2) I now get infused every 6 weeks instead of 4. The AAN discovered that no one getting infused longer than 4 weeks got pml so, I asked to go every 6 weeks and my neuro agreed.

I drink coffee every infusion now because I discovered it makes getting into my vein easier.

I have been able to lose weight while on Ty so, to answer your question NO weight gain !

[toot2818]

Waiting for approval

I have called my clinic and said I wanted to start TY. Am waiting for final blood work. Then insurance approval and hope to start by end of month.

Thanks for all your responses. Will keep you posted.

Toot

[Tomjadg]

Hi Linda

In have always enjoyed your posts, and how good Ty has been for you.

I finally had to quit Ty after 36 infusions because of my high Titer number(3.5). Although I have been on 8 week infusions, and a brain MRI checked before each infusion, the risk for PML just became too high (1 in 100).

I take shots for 5 days week once a month, and just started taking Aubagio pills every day. I'll see how that goes, although I'm not expecting much.

Keep having good news with Ty.

[toot2818]

Hi Linda

In have always enjoyed your posts, and how good Ty has been for you.

I finally had to quit Ty after 36 infusions because of my high Titer number(3.5). Although I have been on 8 week infusions, and a brain MRI checked before each infusion, the risk for PML just became too high (1 in 100).

I take shots for 5 days week once a month, and just started taking Aubagio pills every day. I'll see how that goes, although I'm not expecting much.

Keep having good news with Ty.

Sorry to hear you have to change treatments. I'm still waiting for clinic to call. And I'm hopeful all works for you.

MS is NO Fun

Toot

[toot2818]

Appointment for first infusion

Got call from clinic on Tuesday, March 17th. Blood work--negative so I'm good to go. My appointment is for Monday, March 30th at 9:30am. She said it would take 2 to 3 hours. I guess they have you stay for a while after just to watch and make sure all is well. She also told me they would do the blood testing every time I get the infusion. The drug company will cover that cost. That is good.

Looking forward--will keep you posted.

Toot

[toot2818]

Got call from clinic on Tuesday, March 17th. Blood work--negative so I'm good to go. My appointment is for Monday, March 30th at 9:30am. She said it would take 2 to 3 hours. I guess they have you stay for a while after just to watch and make sure all is well. She also told me they would do the blood testing every time I get the infusion. The drug company will cover that cost. That is good.

Looking forward--will keep you posted.

Toot

And more good news. I contacted Assistance Fund to let them know I would no longer be getting Copaxone. The fund covered my co-pay. Well they now will cover the co-pay for Tysbri. Happy about that

[lindaincolorado]

Happy for you Toot I wish you great success!

Hi Tomjadg, sorry you had to give up Ty I hope I do not have to give up Ty, unless it's for THE CURE , but if I did I would go to Retuximab . You might want to check into this med. There is a med in trial called Ocrillizimab for ms, it will be more expensive. Retuxin is an Arthritis med, but works for ms. Your Dr has to figure out how to get insurance to pay for it, many have accomplished it.

[jratterman]

Rituximab,Ocrelizumab,Alemtuzumab

Happy for you Toot I wish you great success!

Hi Tomjadg, sorry you had to give up Ty I hope I do not have to give up Ty, unless it's for THE CURE , but if I did I would go to Retuximab . You might want to check into this med. There is a med in trial called Ocrillizimab for ms, it will be more expensive. Retuxin is an Arthritis med, but works for ms. Your Dr has to figure out how to get insurance to pay for it, many have accomplished it.

Rituximab,Ocrelizumab,Alemtuzumab
I am assuming you are talking about Lemtrada when you say THE CURE it is the only FDA approved
therapy that doctors have hinted it might be for some.

Ocrelizumab shows good results but studies show minimal lesion activity at at 144 months is only a B cell depleter.

Dr. Fox, who is involved in clinical trials with a similar drug, alemtuzumab (Lemtrada, Genzyme/Sanofi), a monoclonal antibody that targets CD52, present on T and B cells, noted that B cells replete within 6 months, so B cell–depleting drugs might be expected to have a more temporary effect that drugs targeting both B and T cells. "But the B cell depleters are very exciting too"

I have consulted with 3 MS Neurologist because I have had 112 doses of Tysabri and need to think about what is next.(titter borderline high)

What are the results for people on new meds Post if you have had GREAT results.