Newly Diagnosed

[danflowers47]

Hello Everyone,

I was Diagnosed about 2 weeks ago and I am about to start treatment. I tested positive for JC Virus, and my Dr. still wants me to start on Tysabri. He has given me the option of avonex or TY . The Dr. wants me to do Ty for a year than switch to something else, but I still have to decide what to do Ty or Avonex. I do not really have any symptons yet but there are multiple lesions on my brain and spine and they have multiplied in a months time so I want to be agressive, but I am worried about the side effects of TY. Any suggestions, encourgment, similar experiences would be greatly appreciated.

Thanks,

Dan

[D_HOLLAND]

Dan,

I am some what surprised that your neuro want Tysabri to be your first option - usually they want you to try at least one of the other ones first.

That being said, my son also has multiple lesions on his brain and spine - he DID have a lot of symptoms, he started on Avonex and had 3 replases in 2 months, so his neuro switch him to tysabri.

He is now on #48 and is doing extremely well

[ru4cats]

Dan,
I'll have my 13th infusion (1 year on Ty) on Friday, and I have been so happy with the decision to use this drug. I was diagnosed a year (+2 weeks) ago, and my neurologist also let me make the decision, but after researching the drugs, I choose Ty. I would like to recommend a book Overcoming Multiple Sclerosis by George Jelinek. He is Australian and also has MS. He looks at all the available research and provides his insights. I'm not quite done, but I have learned lots so far. You'll want to read the chapter on Interferons first. It will give good insight to Avonex.
Even testing positive for the JC virus only gives you 1 strike. Using Avonex would give you 2. Good luck!

[Cate Power]

ru4cats is lucky

and gives me hope, as I get ready to start the TOUCH process as soon as I'm clean of Rebif.

I too thought TOUCH required treatment with a CRAB (Copaxone, Rebif, Avonex, Betaserone) prior to Tysabri. I was on the C for 11 years and then went on very stingy Rebif shots in 01-2011. Nearly 12 years post official Dx and 22 years post first sign (optic neuritis), I am "loaded for bear" to get the Rx running through the veins.

One other point, Dan, my neuro, although not the sharpest tool in the drawer, said one cannot go from Gilenya to Tysabri but can go from Tysabri to Gilenya. Might be worth checking it out.

I pray for all you strangers fighting the beast, and I hope you will for me too.

[palmtree]

I'm glad your neuro is giving you the choice. I started Avonex and 2 months later, I had a serious relapse with 3 new lesions.

Since Tysabri, no more flares.

I looked at this mathematically. The chances of pml are less than 1%. The chance of MS progression with Avonex is 70%.

I felt so strongly that we should have the choice as soon as we are diagnosed that I wrote a letter to the FDA. I wonder if the policy has changed.

If one more person was spared new lesions, it would be worth it. I wish you the best whichever decision you make.

[0485c10]

One other point, Dan, my neuro, although not the sharpest tool in the drawer, said one cannot go from Gilenya to Tysabri but can go from Tysabri to Gilenya. Might be worth checking it out.
.

i've thought of this too--but i think it is not yet known what the risk of going from Gilenya to tysabri will be. I recently talked to some one with the choice that using gilenya is still not all safe and using tysabri is not all risk either making the decision between the 2 very difficult.

I wrote 2 her that gilenya is withinin its first year post marketing and they did not know about the serious PML risk of Tysabri until after its first year post marketing.

there are tysabri people who have already switched from tysabri to gilenya. so if she starts with tysabri and then has to switch to gilenya she will be following others who have already done it..the consequences should be better known. but no one has switched from gilenya to tysabri yet and she may become a first group of people learning the consequences of that change--what is already known it using an immune suppresant before tysabri increases the risk of pml by 8x but it is not yet known if gilenya will increase that risk too.

if she has to switch from gilenya to tysabri because gilenya is not effectictive enough for her(50% compared to 60%)- she would be the first group to find out if/how gilenya increases the risk...gilenya is not risk free.

you might want to sit those risks out by starting tysabri first?

then no one has gotten pml in the first year of using Tysabri. & when fully implemented the jcv test should reduce the risk of pml--so tysabri is not all risk either but you will have to wait to see if the jcv test actually does reduces the risk of pml...you could use gilenya until the jcv test is shown to bring down the pml risk then switch to tysabri but then you get into the risks of switching from gilenya to tysabri---

the decision between the 2 is kind of like a circular firing sqaud, i'm glad i didn't have to chose between 2 of them. 1 was enough for me.

of course gilenya could be the last drug you need and going to tysabri will be irrelevant.

[danflowers47]

Thank you

Thank you to everyone who replied to my post it was very helpful. I have chosen to proceed with Tysabri, the risks are far less than the benifits, and I will only be on it for 1 year, than I will most likely switch to gylenia. My neuro wants me to wait to go on gylenia until they have more info on how it effects people. After a year of TY my treatment center will have patients that have been on gylenia for two years and will know more about the negative and positive effects of the drug. I plan to be as aggressive as possible with my new situation, and stay as positve as I possibly can, I am far to stubborn to let something like this stop me from being me. God Bless you all.

[reeskis]

I started with the CRABs , what a mistake. Because of that, I'm way worse. I wish I had known more, but my dr did what most do, copaxone first.

I also didnt know the effectiveness of TY, which far exceeds the others. Also, I havent had any side effects, which are so stressful. I would recommend it to anyone.