Hello, I am a caretaker of my friend who has MS. Over the last 12 years he has been on all the ABC drugs. Now he is completing the 2 year mark of using Tysabri. Dr Appointment in 2 weeks assume he will stop infusions. I wonder what is next???? How are others doing after all these treatment and now what do they take???
Hi Kate, He doesn't necessarily have to stop Tysabri at two years, dpeending on what his doctor says and what level of risk he is willing to assume. We have one member here, Cosmobirdy, who just had her 42nd infusion, without a break, and is doing very well. If I were to continue past the two year mark I would be sure that the infusion center is doing a thorough screening each visit. There are interventions that can be done is PML is suspected early enough.
Also, has your friend had the JC Virus test? If he is negative that would be great news - there has not been a single case of PML among patients who are JC Negative.
I'll go check your other post and se ewhat else you want to know.
I read your other post and it is pretty much the same as this one so I'll add on to the answer here. The other NEW drug choice for him would be Gilenya. There may be a Washout period between Tysabri and Gilenya before he begins this new drug. A recent study showed that people who go off Tysabri will most probably experience a serious relapse in their MS. I sure hope that doesn't happen for him,
You don't say what kind of MS your friend has. Mitoxantrone is an aggressive treatment which slows the progression of SPMS, and increases time between relapses in RRMS and PRMS. It can be very effective but also has some serious side effects, most notably cardiotoxicity.
Hi. I'm a Tysabri user who thankfully has a negative JCV status. I'm on my 2nd year of this stuff, and I have no plans to stop anytime soon, because I haven't had a serious relapse since I've been on it (knock wood). I'll get my status tested once a year, and my neuro doesn't plan on more MRIs unless I change DMDs for some reason. I'll also get my antibody to Tysabri status checked once a year, though there is only a 6% incidence of producing Ty antibodies (so far).
My neuro yesterday was just telling about a medicine that is being used though it is not FDA approved for MS treatment. I cannot for the life of me remember the name (it starts with a C I think) but it is an immuno-suppressant that is used for those who have had a kidney transplant. I guess there has been great success with MS patients on it, too, but there are higher side effect risks than the normal DMDs.
Like LuLu stated, you don't necessarily have to stop Tysabri at the 2 year mark. It really does depend on that person's risk tolerance, and what the neuro thinks and recommends. You mentioned that your friend has had his JC virus test - do you know if it was positive or negative?
I just had my 42nd infusion last week. I have had no breaks. I am also JC virus positive. The main 3 risk factors that they have identified so far in relation to PML are: being on Tysabri longer than 24 months, being JC virus postive, and prior immunosuppressant treatment. Even though I have 2 out of the 3 risk factors (I have no prior immunosupressant usage), we are still sticking with Tysabri at this point. He watches me very closely, and I get MRI's every 6 months.
Like LuLu mentioned, Gilenya is the newest alternative treatment to hit the market. It is an oral med, but it also has it's own risks. There are also some drugs in the pipeline that seem to have some good buzz right now. There is BG-12, Lemtrada (Campath) and Laquinimod, but I honestly don't know alot about them - I am in the process of researching them myself. I have also read a few accounts of people being treated with Cytoxin.
Keep us posted on your friend, and feel free to PM me if you have any other questions or if I can help in any way. Your friend is lucky to have someone as concerned and helpful as you in his life...
Thank you everyone! Your openness and words are helpful. It is good to here from real people. The future of MS treatment has really been moving along: hoping it speeds up 50 times faster. The side affects of some of these drugs are very scary, at least there is something.
JC virus test is negative.
Kate, your friend hit the lottery with being JC Virus negative. There has not yet been a single case of PML reported of anyone who is JC Virus negative. This is an important item to discuss with the treating neurologist.
I'm glad Rita came out and offered to talk with you about her experiences. Please consider taking her up on it - she is one of our resident experts on Tysabri, and is always willing to chat privately.
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