Tysabri as first DMT...?

[Teekybird]

Hi all:
I am 38 yrs old and newly diagnosed with MS. I have just been presented with DMT's by my doctor.
I am JCV negative.

She is in favor of me starting Tysabri as my first DMT.

I am not affected by mobility issues. My presenting symptom was optic neuritis diagnosed late Feb (and starting me on the journey to find out I have MS).

What are your thoughts on starting Tysabri as a first DMT? (insurance, etc. aside)

I have several brain lesions and one lesion in neck around C6/C7. She said that having in both the brain and neck mean that I most likely do not have a mild/non-aggressive form of MS.

Also, since I am relatively 'young' I guess the thinking is to be aggressive about the initial treatment so that the MS does NOT progress, and that over the years I don't develop new lesions or have relapses.

Please comment. I know that what you have to share are just opinions and your own experiences.

[Windwalker]

Wish I had. Based on the lesions...sounds like you have a good Neuro. Based on feedback on these boards over the years, TY is definitely the one with the least awful side effects.
PML risk way overstated IMO. Best of luck.

[ru4cats]

I responded to this in Tecfidera forum.

[lindaincolorado]

If I had had the chance to be on Tysabri (it was in trial and I was with Kaiser, not part of trial) instead of Copaxone I am positive that you would not know I had ms. As it is, my progression halted, my MRIs have shown no new or active lesions (some of the old have gotten smaller or are gone) and some of my sx have abated . 2 1/2 years before Ty (started Copaxone) I was still walking and dancing like I loved, while on Copaxone I needed a cane (in that 2 1/2 yrs) and then a scooter This is where I was when I started Tysabri - Thank G-d and Ty there was NO further progression. Yep, I am so grateful !!!

This is my story; everyone's story is different. No guarantees.

Good luck and my best wishes

[perkylady]

I agree with your doctor; preserve your life the best way possible. But treatment is an individual decision.

[palmtree]

ABSOLUTELY!

[goblue]

I guess I'll be in the minority and say that I would hold off on ty as the last resort. It is considered the "big gun" and it's not a dmt that you can stay on for longer than several years. It's my understanding that sooner or later, your numbers will get to the point where you have to come off. And I've read many people say that after coming off ty, they progress quickly, bring that the ty is the strongest drug, and keeping their Ms at bay.
Why start on the strongest dmt, if others that are more safe, could work well for you? Is all about trial/error.

[Teekybird]

It is hard to know what is best. GoBlue, I understand your reasoning, and initially that is what I would have thought as well. However, I see the flip side of the argument which is what my doctor presented me. Basically it is that you want to prevent new lesions and relapses as much as possible early on... So, going with the most effective treatment at preventing new lesions (at all) and relapses from the get-go is what she is recommending.

The other meds are beneficial, but bring with them a slightly higher likelihood of developing new lesions. As I am learning, a lot of times even though you do not have physical symptoms ore a relapse, there are new lesions forming on the brain. So, the idea is as long as new lesions and relapses can be prevented, the better health I will be in (cognitively, physically, everything). So, it's kind of like, why wait for the 'big gun' and in the meantime be having destructive brain lesions forming. I understand what she is saying, but am just really scared of adverse reactions to it, and also to the JC Virus and the PML. Right now I am showing negative for JC virus though.

I think another hope is that there will be an even better medicine/treatment available at the time that I would be going of of Tysabri. Since I am currently JC virus negative, I think it is hopeful that I might be able to stay on it past the 2 year mark.

The problem really is that I don' think anyone can say with 100% certainty what is the right choice. Including the doctors. I am planning to go see my MS neuro again with questions about the medications before I go on anything.

So, all opinions are really helpful and the different perspectives give me different insights as well as additional questions to address with her.

[goblue]

It is hard to know what is best. GoBlue, I understand your reasoning, and initially that is what I would have thought as well. However, I see the flip side of the argument which is what my doctor presented me. Basically it is that you want to prevent new lesions and relapses as much as possible early on... So, going with the most effective treatment at preventing new lesions (at all) and relapses from the get-go is what she is recommending.

The other meds are beneficial, but bring with them a slightly higher likelihood of developing new lesions. As I am learning, a lot of times even though you do not have physical symptoms ore a relapse, there are new lesions forming on the brain. So, the idea is as long as new lesions and relapses can be prevented, the better health I will be in (cognitively, physically, everything). So, it's kind of like, why wait for the 'big gun' and in the meantime be having destructive brain lesions forming. I understand what she is saying, but am just really scared of adverse reactions to it, and also to the JC Virus and the PML. Right now I am showing negative for JC virus though.

I think another hope is that there will be an even better medicine/treatment available at the time that I would be going of of Tysabri. Since I am currently JC virus negative, I think it is hopeful that I might be able to stay on it past the 2 year mark.

The problem really is that I don' think anyone can say with 100% certainty what is the right choice. Including the doctors. I am planning to go see my MS neuro again with questions about the medications before I go on anything.

So, all opinions are really helpful and the different perspectives give me different insights as well as additional questions to address with her.

Yeah, I know what you are saying. I'm currently on Tecfidera and it scars the heck out of me with the recent couple of cases with pml. It makes me want to take a step back and go on something "safer" like Copaxone. But then I see some worst case Ms people in person, and want to do everything possible to not progress to that point. So i don't know. I guess it's an individual decision that you and your doctor have to make after looking at all the facts.

[lindaincolorado]

I have been on Tysabri for 8 1/2 years and Thank G-d my jcv level is in-between .2 and .4 (I wish under .2) and I am now taking my infusions every 8 weeks.
I am SO GRATEFUL for my QOL!

[DexterMorgan]

Please don't do it. I understand your doctor's reasoning but having lesions on both places doesn't mean you definitely have a more severe form of MS. I'd personally look at the amount of relapses you're having first instead of the lesions because it's the relapses that will effect your life.

But why I don't advise T as the first treatment:

1. There is the risk of PML, you will have to get MRI's and bloodchecks regularly so that doctors can check if you have any symptoms.
2. Tysabri causes a lot of infections (not a guarantee with every patient but things like bladder infections are pretty common with T)
3.You'll have to go to the hospital at least 1 day a month => I don't know if you work and if this might be an issue?
4. If you stop with Tysabri because you're JC positive or have to many side effects, ALL the relapses that the Tysabri has held off will come back in 1 big wave.
5. Perhaps stupid, but I'm young so to me this was something I didn't really think about and it sucks to me. But, I literally have to plan everything around Tysabri. I can't go on a holiday for longer then 3 weeks and it's super annoying. If you take Avonex or Copaxone, you just take the syringes with you and that's it.

To put this in perspective, I'm 24 and I'm on T since I was 19 after trying Avonex for 5 months. It did literally nothing for me, my brain scan was full with lesions so that's when my doctor decided to get the big guns out aka Tysabri. It was however, the right way of my doctor to give Avonex first because it was something I could do in the comfort of my house, didn't have to miss classes or other things for and has a lot less health risks. It was just easier. I also don't really have the option to stop with T anymore because every doctor has told me that every relapse that the Tysabri has stopped will take it's revenge when I stop with the Tysabri. So I'm literally stuck with this.

I understand taking out the big guns right away to hold off your disease as much as possible, but perhaps something like Avonex or Copaxone is more then enough to stop the MS for you. Try that for 6 months first, see how the MS reacts to it and go from there.

[ksl]

I was on T for 46 months, and I have no regrets. I was older when diagnosed- almost 50. I also have lesions in my neck, a few in my brain. I stated on Copaxone after my diagnosis and was fine for about two years. Then I had a relapse that affected me like the initial attack did. To this day, I still have about a 20% more weakness in my right side. After 2 plus years of daily injections I was ready to stop sticking myself.

After seeing a Dr. in CO., we decided that based on the lesions in my neck T was a good choice. Had I not converted to JCV+ I would still be on T. I liked the idea of only having one day a month that I needed to have treatment. The infusion and wait time afterwards was only a few hours. Early on in my treatment with T I shared a room with a woman at one infusion, and we decided to meet every month thereafter. We usually have lunch, and do something fun, like a foot massage or manicure after our infusions. So for me, I always looked forward to the day.

For me T was easy, and I felt great, had no further progression. Please know that not everyone's experience coming off T is difficult or bad or ends in a relapse. I came off T in Sept. and started Rituxan the next month. Just had my second Rituxan infusion last week. I had no issues coming off T, my MRI at three months and six month look unchanged.

It's a personal decision, and whatever you decide I wish you the best.

[Teekybird]

Thank you for your responses. I did speak with my doctor more about Tysabri today, and it is what I am going to be starting (hopefully within the month).

I talked to the doctor specifically about going off of Tysabri. She said that it is not a good idea to just "go off of Tysabri" (cold turkey) without doing either a tapering dosage or using steroids at the time when going off of it. What she said made sense.

I also did find out about an earlier statement that someone posted. There is no reason that you cannot get chemotherapy medication later in life should you need it because you took Tysabri.

[Alpharetta]

Been through 5 DMTs

The UK is now offering Lemtrada as a first line treatment, i think the views are starting to change. Many like me are started on the low side effect drugs and our neuro's said time to switch when the lesions get worse and the disability increases. If i had to do it over again, hit it hard and hit it early.

[Deela]

Sounds like you have a great neuro. I agree that going for the big gun early is the best way to go. Started out on Avonex, had a exacerbation then had a brief stint with Tec. After dumping my neuro and finding another, I am on Ty and wish it would have been my first DMT.

It's one day a month for a few hours. I look at it as "me" time...a nice quiet time to read a book, watch tv or just chill out. Day one is the same as day 28.

I think you will be happy with your decision.