Rebif not working - Tysabri?

[tasman71]

My recent MRI showed new lesions and my Neurologist wants me to change from Rebif to Tysabri. I have been on Rebif for 2 1/2 years, and although feel OK, she said new lesions appearing means Rebif isn't working for me.

I am scared to go on Tysabri. What do people usually do when lesions are still appearing despite current meds they're on?

[0485c10]

7+8 +?
a. 13
b. 14
c. 15
d. 16

is it a,b,c,or d?

the answer you are pursuing is not an answer with a multiple choice selection.
the question you are asking is a less clear cut essay question where you need to establish your place in history.

before 1993 there was no meds to slow ms down, they accepted all the lesions that were created and treated the symptoms with steroids or symptom meds.
then in 1993 there were meds that came out that slowefd it by 30%, there was only 4 of them. so they tolerated some lesions and switched betwween the 4 meds to get the lowest # of lesions possible.

i was lucky there were pioneer MS people who had already proved these 4 meds were safe before i was diagnosed so i didn't have to go through all the angst in deciding whether to use one.

in 2004 a new med came out that was 60% effective and starting this year there will be a few more that are 50-80% effective--so now there is more choice and less tolerance for the few lesions they tolerated after 1993.

now they have new 2004 lesion tolerance standards and this time we are the MS pioneer's going through the angst that the MS'er did in 1993. Its our time.
There are MS people in the future who will be greatful to US,the MS people of the present, for having proved how safe these meds are over the long range so the decisions for future people with MS will be easier because we existed with MS.

I am scared to go on Tysabri. What do people usually do when lesions are still appearing despite current meds they're on?

Its a new time, we are the poineers of the early 21st century. your posting this on a tysabri support board, so i hope you are expecting answers from people who are grasping at the future with both hands are are willing to play their role in history.

before 2004 the switched between the 4 crab drugs or an inmmunseppresant, after 2004 they switched between the crab drugs, immunresuppressant or tysabri.

after 2010 the established conclusively that using an immune suoppresant b/4 tysabri increased the risk of pml--so when a crab drug stopped working a person could try a different crab drug, use tysabri or never use tysabri & start an inmmune suppressant after the crab drug..

in 2011 the first oral drug came out so that offered more choice. a different crab drug, gilenya, tysabri or an immune suppresant with out using tysabri in the future.

we are MS pioneers of the present. no one knows yet what the best decision is, we are all pursuing what we believe is best.

the future is the one that will tell us if we guessed right..and there are many MS people in the future who will be grateful to us that we didn't sit on a fence but made a decision and acted on it.

Me i had a build up of lesions and symptoms after 3 years of betaseron, doc suggested i go to tysabri, it made sense to me...the future will tell me if it was the right decision. 2.5 years on tysabri so far it is looking like i made the right decision. but i review the status of my decision every year as more information is available with more choices to decide if i am still making the best guess to treat my ms..

[lac4x9]

tasman, I know exactly how you feel. I was on Rebif for almost a year and was doing well, or so I thought. I'd finally gotten used to taking the shots and living my life dependent on a medication. One day, a few days after my regular blood work was done, my neuro called and told me that my white count was dangerously low, and that I had to stop the Rebif immediately and consider a new medication.

I was devastated. It wasn't that I liked Rebif, it was that I was used to it, and finally comfortable with. I didn't want to start the process of finding a drug all over again. So, I stuck my head in the sand, stopped taking the Rebif, and refused to look at a new drug.

This worked well for about 8 months. Then a relapse hit...the biggest I've had so far. In the middle of finals week my second year of law school I lost my eyesight. I'm already partially deaf, so you can imagine how frightening this was. Needless to say, it kicked my butt into high gear and I basically ran to my neuro and begged to be put on a new medication.

After talking to the neuro and doing research, I decided Ty was what I wanted. I figured that one big needle once a month was better than smaller needles more often. I stayed on Ty for a year, then made the decision to try Gilenya. Ty was great for me, and I had no complaints, but I just wanted to be free of needles.

This is a scary time in your diagnosis. I'm sure you feel like you had everything figured out and under control, only to have that feeling of security ripped away from you. This is exactly how I felt. But you can recover. Do NOT do what I did and ignore the problem, because it will not go away on its own, I promise you.

That said, you have some time to do some research and figure out what works best for you and your lifestyle. I wish you luck.

[lindaincolorado]

I am and have been more afraid of what ms could do to me than the rare side effect of pml from Tysabri... this is me!
For the first 2 years of being on Ty the chances of pml are almost non existent. I have been on this med for almost 5 years and am very grateful to it

Good luck

[reeskis]

I was petrified to start TY, everyone could see the fear on my face.
Year and a half later, I'm glad I did it.

This is a big decision, but true, this medicine isn't as scary as taking nothing. Best to you

[lttymi]

On Number 48...

For me Tysabri has been very effective. Following initial relapse and diagnosis I never experienced full abatement of symptoms with intensity flares every 6-8 weeks for a year while on Rebif. (Side effects too). Within 3 months on Tysabri symptoms were largely abated and at 6 nearly gone completely (I now function much as I did before diagnosis). No new lesions in 4 years and most of existing are no longer active. As for PML, with the improvement in quality of life it would have to be a very immediate danger to stop.

Interestingly, the latest numbers I saw showed the instance rate of PML declined after the 3rd year, and was 1/2 the world rate in the US, making it about 1 in 2000 for those in the US.

Its a personal decision that you need to feel comfortable with, but for me:

"It's better to live one day as a lion, than a thousand years as a lamb."

[NickyOz]

Hi Tasman, you are the only Aus I have seen on MS world. I am not responding to your thread but want to know the story re Ty in Aus. I am Aus but live in Ireland. I am starting Ty next week. Here the hospitals fund the program and even though there are apparently long waiting list and little funding. i have not found this cause I had bad relapse and I was put straight on it - no payment required. what is the story in Aus with getting the Ty and paying for it.