Tysabri

[Phil413]

I have used Tysabri for 3 years and I’m really happy with it. Tysabri can be a first DMT. Some insurance companies will only cover Tysabri if a patient has tried one of the less expensive drugs first and didn’t have good enough results. If your insurance will allow it I would start it first. I’ve had no relapses or side effects since being on this drug. I was not driving and just barely walking when I was first diagnosed in 2010 and I’m now walking without a cane and driving.

[greaterexp]

I'm so glad that it has worked well for you!

[Fancy1959]

Good morning Phil413, it is Fancy. I too went onto Tysabri and wonderful results on it. At about 8 months in, my symptoms were dramatically receding! I couldn't have happier with the results. I did however have one very negative side effect in that was that I was JC virus positive so I was truly concerned about staying on tysabri long-term. The day tecfidera became approve the national MS Society and my doctor's office both called me and said they thought I was an extremely good candidate to get on this DMT. So I did and tried it for about a year-and-a-half but my disability started to increase rather dramatically about 1 year in and when we ran tests on me check my disability level, we discovered I've gone from RRMS to SPMS while I was on Tecfedera. So I went back on Tysabri it all went merrily well for about another year. However after my approximate three to three and a half year anniversary on it we started to see an increase in my JC virus count. Then the side effects started to hit shortly thereafter. I got done with one infusion and one across the hall to my doctor's office and all but passed out. The next infusion I got finished and I was so confused and had such a hard time focusing that I drove next door and sit down and ate lunch again and tried to bring my world back into Focus. It worked and I got home without any incidents. Then finally on the third months in a row I got finished with the infusion and I felt awful. I was again having a hard time focusing and I was just shaky as could be. Needless to say the scare the tar out of me and I had a family member come pick me up. With three months in a row of negative responses to the infusion and with the in response is seeming to increase in severity I got so scared I refuse to take another infusion of the Tysabri. Long story short my neurologist was able to get me onto ocrevus some 4 to 5 months later and I have never look back. I just recently had my anniversary of having had my one year anniversary and fusion and I am noticing a slight Improvement disability especially on the balance end. So be careful and make sure that you are not JC virus positive and monitor it regardless because sometimes 1st and Status can change and become positive if you've become exposed to the virus while taking the drug. As always it is a personal choice what DMT you take and make sure you stay informed because you are the best advocate for your health and never forget that!

[anaishunter]

It's great to hear about positive results against MS! Keep sharing.

[Kenu]

Great to hear it is working for you 👍. I was on Tysabri for seven years and did great 😊. But then Cancer ♋️ came and I had to change as my white t-cells went crazy. 👍🙏Ken 🐾

[Phil413 in reply to Kenu]

I’m so sorry about the cancer. Stay strong. I’m praying for wisdom for you doctors.

[Raingrrl]

I was on Tysabri for 5 years and it kept my MS stable. But, like Fancy1959 , I’m JVC+ so despite it working for me, my risks kept increasing the longer I was on it. We waited for an appropriate replacement which turned out to be Ocrevus and now I’m on that.

Yes Tysabri can be a first DMT depending on the person’s medical history and their insurance, and it’s great that it’s working for you, but there are many factors that need to be weighed in making DMT decisions especially with the more powerful immunocompromising drugs. Those decisions are best made between the patient and their medical team.