Ty 2 year anniversary

[22cyclist]

Just passed my 2 year anniversary with Tysabri! Ty has been very good to me. I am still JCV- so I happily keep going with the flow. My port-a-cath which is also 2 years old is still working fine so I am blessed. It seems like the itchy bugs have gone away finally after 15 months-those were hard to deal with. They run my Ty over 2 hours and saline over 1 hour.
I hope that everyone else is doing well too!

Take care
Lisa

[KatieAgain]

Congrats Lisa!

Yesterday was my 1-year mark...with 12 infusions. With the exception of Anemia, which is being caused by the TY...and of course a break through flare, I am doing pretty well...and still JCV- ...which is a bonus.

I certainly can not complain. Best drug I have been on so far! It gave me back some quality to my life.

I too hope everyone is doing well.

[22cyclist]

Katie: I have anemia too. I think thats pretty common. Also my platelets are low. No big deal though. When I was on Rebif I went into bone marrow failure and had to be taken off of all interferons never to use the again.

Glad you are still going strong!

Lisa

[Myoak]

Glad you both are having success with Ty.

As you may know from previous posts, my wife has been on Ty continuously (except for when the FDA temporarily pulled it in 2005) since 2002 when she participated in Phase 3 trial. The trial ended and treatment began the very next month w/o missing a beat.

She tested JCV+ the very first time after the test came out. Those like you guys who are JCV- sometimes remain negative for many, many years. But it is not unusual for people to become JCV+ over time.

And, it makes perfect logical sense… one would expect more possible exposures to anything as one ages, including JCV. One would expect a higher percentage of JCV in an older population, as people age, and that is what JCV studies have demonstrated. Turning JCV shouldn’t seem unusual or unnatural.

My goal is to present that thought so you won’t be overly anxious or unprepared if someday you do turn positive; but hopefully you won’t. Remember too, having a titer under .9 is little different than testing negative.

Another thought is that as long as the JCV is confined to serum, my wife is fine; no PML is possible unless the JCV crosses through and gets into CSF.

What protects some people from JCV mutating into the type which can cross over and cause PML is unknown. Clearly, most people who are JCV+ are not getting PML. But some do. What protects those who don’t is unknown, so far.

Knowledge is always growing. Ways to mitigate PML risk will continue to advance. Many other monoclonal antibodies are in development, too. We see the outstanding effectiveness of mabs like Ty. More are coming; likely w/o the same PML risk. Otherwise, there would be no point in developing them.

Best to you both. Know that I always think of you in prayer when writing. MS is not easy for you or your loved ones. Preserve your health the best ways you can ‘til we get the answers we need to overcome this disease. Those answers are coming; they are definitely coming.

Congrats on your milestones with Ty.

[pennstater]

Katie and Lisa,

Passed my 2 year mark in July as well, so congrats. Also still JCV- and counting my blessings. Aside from early flare and respiratory infections, doing wel too. No improvement in MRIs, but no worsening either. Wish everyone the same success.

[lindaincolorado]

Lisa, Katie and Myoak

Congrats Lisa and Katie, I hope you both continue to do well

Myoak, when you said your wife is jcv+ and as long as it is in the serum and has not crossed into the CSF she is fine. How would they know if it crosses into the CSF ?? May I ask what is your wife's titer ?

[ru4cats]

I am just beginning my 5th year on Ty, and I believe I will have my 54th infusion on Thursday (I've kind of lost count, ). When I read all the problems others have with their DMD, I am very thankful for the drug I chose. Day 1 is just like day 28. I continue to be JC-, and my last MRI two weeks ago shows no active lesions and no new lesions. My negative progression continues in regards to walking, but this damage is what led to the diagnosis, and normal aging hasn't helped. I'm still able to walk with the assistance of my HFAD and a rollator, but with the continued progression and the evils of gravity, my husband and I are installing a WaterWell for physical therapy at home. Water is the only place where I feel normal, and I hope with the powered underwater treadmill, I'll be able to get the exercise I really need.

[lindaincolorado]

congrats to you pennstater-sorry I missed you-hope you continue to do well

ru4cats, you go girl I hope you continue walking and that your waterwell helps you. I do water aerobics and other exercise I am capable of and believe the exercise has absolutely helped me !!

[Myoak]

It is my understanding that if JCV is found in CSF then PML would be diagnosed and plasma exchange (PLEX) would begin immediately to get rid of remaining Tysabri and allow reconstitution of the immune system to combat the JCV.

Though still to be proven conclusively, the idea behind dose extension is allowing greater immune surveillance which hopefully will prove sufficient to deal with JCV in MSers on Tysabri. JCV is not a problem in 99%+ of the population who are JCV positive.

PML appears in immune compromised individuals. Normally, the immune system has no problem keeping JCV in check. Hopefully, dose extension will provide that opportunity. Time will tell.

Before switching from Tysabri to a different DMT some doctors insist on doing a LP (lumbar puncture) to test for JCV in CSF to make certain the MSer does not have asymptomatic PML. Or, they wait a few months until Tysabri is washed out and they believe danger of PML is past and before starting the new med.

Studies have demonstrated waiting is the wrong approach. People who switch from Tysabri experience less MS rebound by keeping time between Tysabri and the next DMT to a minimum.

Tysabri continues to provide protection for several weeks after infused. So if the new med is begun (and the new med may take several weeks to reach effectiveness) while you still have coverage from Tysabri then the chance of MS rebounding is decreased.

The following study is an example of shorter is better for the washout period: http://www.ncbi.nlm.nih.gov/pubmed/24566807

Linda, you asked about my wife… her JCV index varies from test to test but the last one was over 4.

Her risk of PML is 1 in 118. Her risk of heart disease is 1 in 4. Her risk of cancer is 1 in 3. Her PML risk is 1/30th of heart disease and 1/40th of cancer. She has experienced very, very little MS activity on Tysabri versus frequent exacerbations prior. So it's understandable Ty remains her treatment of choice.

Hate that added risk; hate MS, too.

[lindaincolorado]

Thank you Myoak

I understand the odds, but I still need to give kudos to your wife (and I think LL60) for being a brave, tough cookie I do not know what I would do with those odds even understanding heart disease and cancer odds.

Blessings to all us msers and their significant others

[pennstater]

Thanks Linda.

Myoak- Thanks for the info. I agree with Linda - both you and your wife are incredibly strong. I can understand your wife's decision. I just pray I have your strength should I need it.

[lisanatali]

22cyclist

hello
I just have a few questions for you, I am on Tysabri as well have bee for almost a year now, but they always tell me I am a hard stick and I just tell them that they don't know how to find veins very well. Anyways why did you need to get a Port put in if you don't mind me asking?

Lisanatali

[lindaincolorado]

Hi Lisa, I just wanted to put my 2 cents in
I was told for years that I was a hard stick and most of the "they" who told me had a rough time and I got stuck multiple times Then a fill in nurse in AZ told me I had deep and rolling veins. This helped as I told the nurses this at each infusion. Then I had a small cup of coffee in the morning-I had been going without my caffeine because "they" told me it was a no-no - and found this helped the rest of the way.

I hope you can figure out what might help you-we really to be our own advocates, but I was lucky with that fill in nurse

by the way.. next month I will start my 9th year on Ty