Decisions

[Lostalias]

The guy I care for has ms and recently tested positive for jc virus, after 7 yrs of being on tysabri his doc wants him to go off of tysabri and try aubagio to avoid the risk of pml, his concern is that if he goes off Ty that his ms will progress further, so he is thinking of staying on tysabri and taking the risk of getting pml (in hopes of it not turning to pml) has anyone else done a switch like this? If so did the other med work as well as tysabri? I'm so scared that if he stays on tysabri that he will get pml, I don't know what to do or say, and I don't really understand the risk charts I've read.

[REG53]

Hello Lostalias,

I stopped Ty. after 6yrs. because of JCV+. I went on Tecfidera and I have been pleased so far, it has been 1 yr.

You may get more response if you post on the Ty. forum or the aubagio forum.

I hope he does well whatever he chooses.

[Myoak]

There are so many things to consider when contemplating treatment changes. It is no easy task. Treatment goal, individual risk profile, family considerations… all those and more.

If the primary treatment goal is prevention of disability then Tysabri offers the best chance among the currently approved treatments.

Risk of PML is stratified using criteria widely available on many websites including this one. Possibly the category most misunderstood is the one about prior use of an immunosuppressant. This category does not include those who have used steroids temporarily during a flare-up.

Rather, it means those taking an immunosuppressant as a DMT over a long period of time. If it included all those taking steroids temporarily, virtually no MSer would be excluded because most have had short courses of steroids for an exacerbation.

98% of those on Tysabri will never get PML. That statistic is true for the entire population of MSers on Tysabri. Those 98% expose themselves to risk needlessly by stopping Tysabri. The risk of disease progression, the risk of relapse, the risk of inflammation as seen on MRI all increase upon cessation of Tysabri.

People feel as though they are damned if they do and damned if they don’t in switching from Tysabri. Everyone on Tysabri who is JCV+ should know and understand what their risk of PML is. That risk can be found on different threads at this site and elsewhere.

Yes, there is risk of PML and that risk is charted. Lostalias, if you have a question about the risk charts please ask and I will try to answer.

Other treatments don’t have the risk of PML but they do have the risk of not working as well as Tysabri; some people do well on them but statistically, MS is not treated as well on other DMTs. Tysabri is the most effective MS med.

Beyond the risk charts currently used to stratify risk is the recent study presented at this year’s AAN meeting which showed no patients (586) got PML when time between doses was extended to 6,7,or 8 weeks. One theory has it that extending dose increases immune surveillance and JCV is kept at bay. We know that JCV is not a problem for the general population although a majority of the population has the JC virus in them.

Future stats are sure to reveal more detail because it appears many, many doctors and JCV+ patients are choosing dose extension expecting to mitigate risk. A good number just at MSWorld have said they are extending dose so doubtless more stats will be coming.

Also, two biomarkers have shown to be predictive in getting or not getting PML. One study showed JCV+ on Tysabri NOT getting PML if they had IgM bands in their CSF. Another study involved CD64 as a marker.

Also, JCV antibody has been isolated. Researchers hope to develop a neutralizing antibody to the JC virus. This could take time. But hopefully, the two biomarkers mentioned above will be available to clinicians within a year or two.

[Myoak]

Lostalias, You may find the following link helpful with treatment decisions. Of course, you can always Google the title if you have problems with the link:

First-line natalizumab in multiple sclerosis: rationale, patient selection, benefits and risks

http://www.ncbi.nlm.nih.gov/pmc/arti...2313514790.pdf

Best to ya

[Lostalias]

Decisions

Thanks myoak, I will look at the link, if you don't mind me asking, do you have ms? You really know your stuff and I'm new to this and don't understand some stuff, it's confusing when one site says the odds are one number and another site says a different number, my friend I take care of decided to stay on tysabri and now I'm terrified he's gonna get pml, we try to talk about it and I end up crying, I get so emotional that I can't talk about it, do you know how common it is to get pml and how soon after a jcv+ prognosis? He wants to enjoy our time together now each day and not be sad, but I'm so scared, I know when I cry around him it makes him feel bad and I try to be strong for him, but the unknown scares me.

[Myoak]

Lostalias, sorry it has taken a couple days to get back to you. I check the site most days but not every day.

No, I don’t have MS. My wife does. She is JCV+ and has been on Ty since early 2002 because of participation in the Phase 3 trial. The medicine was approved then taken off the market in 2005 for about a year due to PML concerns.

Lostalias, allow me to say your empathy is remarkable; you feel so deeply in concern for your friend. But be sure to give him room to make the decisions he wants to make.

Someone has said that life isn’t the number of days we live, rather how much life was lived in those days. We are all going to die. About 1 in 3 gets cancer.

I have a dear friend who stopped TY even though she was JCV-. It was very, very unlikely she would ever get PML but the PML issue scared her so much. Fear is a great robber of peace, contentment and the joy of life so I understand why she would want to get away from the fear of PML.

But what happened? Her MS got significantly worse on a different med. She went back to Ty and is now trying to regain the level of health she had before. Probably won’t get there because once you lose neurological function it is difficult to regain. Not impossible, but very difficult.

In her case, unreasonable fear robbed her of fairly good health. JCV+ or JCV-, the question facing everyone contemplating stopping TY… is what I am giving up worth what I am getting? No one can know in advance. Lostalias, maybe your friend would be fine, but maybe not.

Caregivers have responsibility to be well-informed, think soberly, analytically. We have responsibility to be supportive, encouraging. If a spouse or loved one wants us to advise or even make a decision for them then we want to make the best possible one, as much as we are able.

We study and talk to each other, sharing information and ideas, learning from one another. I am driven to keep abreast of everything I can relative to MS. It is a wicked, consuming disease. I do not want to miss something which could be a benefit for my wife. Our basement walls have huge white boards on which MS research is plotted; dozens of studies organized in a way I can learn from.

You asked about how common or soon someone JCV+ might get PML. If your friend has been on Ty for 7 years, his JCV index is over 1.5, and he was not on a prior immunosuppressant (remember, short courses of steroids for flare-ups are OK) then his risk of PML is 1 in 118. 1 in 4 women die of heart disease, if that helps give perspective.

Risk tolerance is individual, everyone is unique. I thought my friend was taking a huge risk by stopping TY; she thought she was taking a huge risk by continuing. She has the right to choose; my part is to support her no matter the choice.

Lostalias, you friend is fortunate to have someone care so much. But first be strong for you; then you will be strong for him. Someone has said that courage is fear that has said its prayers. Your days will be fuller, more meaningful and richer because you understand how brief life can be. It is brief for all of us, MS or not.

Life is composed of a myriad of day to day experiences which we have the opportunity to turn into something positive. Small things… a kind word, a pleasant smile, an encouraging hug… are so, so important. Those small things have changed numerous lives and been helpful beyond description.

The unknown scares us, that is a common feeling. But refusing to be paralyzed by fear or distraught by it is a choice. We can overcome. John Osteen used to say that we create the atmosphere in which we live by thoughts we entertain for constant meditation. Make it a goal to create happiness in others and we receive more back.

Thank you for posting, lostalias. Don’t let fear of the future rob you of today’s joy.

Don’t be afraid to ask any question. I will try to answer.

Blessings to you and your friend.

[Lostalias]

Myoak, Thank you so much, I appreciate you talking to me, it really helps. I'm looking up as much info as I can about ms, so I can help my friend, we are even planning on trying to go to panama for stem cell treatments, we know there's no guarantee, but maybe something good will come of it.

Bless you