New lesions

[Chef7725]

So been on Ty for 12 treatments. Had my 6 month follow up today and was told one lesion had shrunk but had formed two new ones. Has anyone had new lesion form while on Ty. I was wondering if there was any hope out there of controlling this if Ty is the strongest out there. I'm being sent to a ms clinic to see if the treatment is right but wat could be next. Curious and a lil lost any insight will help thanks

[DebbieB]

Chef, I'm so sorry to hear this.

Unfortunately, I don't have any wisdom to share. I'm in a double-blind study for the use of Tysabri in SPMS patients. Since it's double-blind, I'm not certain if I'm receiving the drug, nor am I privy to my MRI results.

Interesting that one lesion reduced in size...don't give up hope!

Just wanted to let you know I'm sorry...

[dyin_myelin]

I'm sorry about the formation of new lesions. : ( I believe that there are stronger drugs out there like Novantrone, but they are highly toxic and usually used in PPMS. Like all DMDs, Tysabri only slows down the disease. I hope that you can share what you learn at the MS clinic. Maybe drugs with lower efficacy are more effective on a case to case basis.

You may also want to be checked for neutralizing antibodies, this can happen pretty quickly and will make the drug way less effective. If so this is actually good news, you can switch DMDs and lose the risk of PML and hopefully get some clean films. Your MS may not be as aggressive as you think.

[MSer102]

I believe that there are stronger drugs out there like Novantrone, but they are highly toxic and usually used in PPMS.

That is incorrect. There are NO drugs that are effective in PPMS. Novantrone is not used for PPMS.

Tysabri is not a cure for MS and not guaranteed to stop progression even if it is the strongest MS DMD out there. Most people remain stable on Tysabri, but some still develop new lesions and still progress. There's hope for everybody, but not everybody will have a good outcome.

Sometimes people become "lost" because they somehow come to believe things that aren't true. Although some medications can be effective in many people, MS is still an incurable disease and not all medicines work for everybody. New lesions don't always mean a loss of function, and lack of new lesions doesn't mean that progression has been stopped. That's just the way it is. The MS clinic will help you determine what medication might work best for you. But it is what it is. Understanding that is the key to not becoming "lost."

[dyin_myelin]

That is incorrect. There are NO drugs that are effective in PPMS. Novantrone is not used for PPMS.

D'oh! Nice catch, thanks. It's the only approved treatment for *SPMS, not PPMS. So much for the memory, it's like I have MS or something.

[Chef7725]

Thanks

I know that tysabri wasn't going to cure me but I was hoping for no new leasions. I went to bloodwork on Friday to see if I have developed amy antibodies to tysabri. I will let u know the results when I have them. I go to the ms clinic April 10 so ill keep yinz posted. Thamks for you insight greatly appreciate

[Chef7725]

Ms. Clinic update

So I went to the ms clinic in pittsburgh and the out was was desirable. Wasn't overly worried about the new lesions but there was some game plans set in place. Just told me I need to be off of tysabri by end of year since I'm jcv+ (which I knew) and the brain activity not being calm.

I am going to ween off of tysabri so there is no or less of a rebound effect from what I'm told. After I go off I'm going to onto gilenya. They are sending me for repeat MRI to see if any new lesionsin May so and will continue with the tysabri unless some big was up.

So I hope this plans slows it down like tysabri and no rebound. Thanks for all listening

[DebbieB]

Hi Chef,

Thanks for the update! So glad to hear you have a plan for the next few months, and happy to hear that they will be monitoring closely.

Good luck!