Tysabri as the first treatment choice?

[JayS]

Hello,

I just got diagnosed with MS (CIS, actually). My symptoms have been limited to tingling in the leg. My brain/spine MRIs showed a few (one in the brain, 3 in the spine) lesions but no active lesions based on lack of gadolinium enhancement.

My neuro is proposing that I use Tysabri. Reading through the threads I sense that Tysabri is mostly a "nothing else has worked" or "this is very aggressive MS" type treatment and not the initial treatment of choice. I may be misinterpreting this, but I almost feel like Tysabri is mostly used as a last line of defense.

Would love to hear what others who may have faced a similar situation think. Is this a good first treatment or should I see how other treatments work on me before going for Tysabri? For those that have tried other medications and are now on Tysabri, do you wish you had started with Tysabri to begin with?

As an aside, I love this forum and thank everyone for their thoughtful reflections regarding this disease.

[Pipes123]

Hi Jay,

Tysabri is statistically one of the most effective ms drugs. It also has some real risks. Some neurologists are more aggressive. That could be right. There is an argument to be made for preventing damage with the strongest tool available. But when I talked to my neurologist about Tysabri he wanted to 'hold it in reserve' and I breathed a sigh of relief.

There are many people here who can tell you how much Tysabri helped them. It is a very effective ms drug.

[Special Kay]

Tysabri is the most effective DMT out there and now that they can verify PML risk, it is being prescribed earlier, even as a first line of therapy.

I wish I had taken Tysabri from the beginning, since I am tolerating it very well (after 20 infusions) and am happy to be able to use the strongest drug available, hopefully to forestall disability. FTR, I have very inactive MS, no flares in 8 years since my first one.

I was personally shocked when my neuro suggested Tysabri ("but that's for the really sick folks, right?!?"), but I did my research, and I have been JCV negative at every test, with a low titer.

Just for reference, I started with Avonex and didn't tolerate it well at all, but I stuck with it for 5 years because I was doing well on it in terms of MRIs and lack of flares. But feeling flu-y and sad all the time got really old...

[tspaulding]

From what I have read here most insurances like you to try a shot or an oral drug before tysabri. I would speak to your neuro and insurance about this.

Tysabri seems to have a high effectiveness for reducing flares, but it has many side effects. I encourage you to read about the meds and speak to your neuro.

Good luck and tc

[dyin_myelin]

I used it as a first line defense. Since I was JC negative, considering its efficacy, it was a no brainer (or brain saver). It is now approved for first line use, so you will have less of an uphill battle that I had to go through to get on it. If your insurance company won't cover it have the neurologist do an appeal. I noticed no side effects, and a clarity of mind and energy the first few months of taking it. L'hermittes and heat intolerance resolved as well. I did have one abnormal period, and liver functions were very, very slightly decreased (.1). I would read about all the meds and get a JC (Quest Diagnostics) test and make the decision that is right for you.

[ru4cats]

Tysabri is my drug of choice

For me, the choice of Tysabri was a no-brainer. Why would you NOT start with the most effective drug currently available? By the sounds of your current physical health, you are the perfect candidate for Tysabri!

I agree with everything dyin_myelin said. I will add that you don't say how old you are. The younger you are, the greater the chance that Tysabri will provide your body with the opportunity to heal. If you search YouTube for "The Future of Multiple Sclerosis treatment" you'll see a presentation by Dr. Vollmer of the RMMS Center in Colorado. He gives an overview of all the drugs and provides wonderful information you might find helpful.

Our bodies have excess reserves that can be used to repair damage. However, as you age, these reserves are depleted, and in my case (diagnosis at 58.5), my reserves were gone. My neurologist felt Tysabri would provide me with the best opportunity to stop progression, not necessarily the ability to heal. This has been the case. The damage done before diagnosis continues to progress, and the normal aging process hasn't helped.

I've had NO side effects from the drug, much different than the CRAB's and the orals. Yes, PML is out there, but almost 10 years after, once again, being offered, much has been learned and monitoring can really lesson the risk if JC positive. Even 18 months of infusions will provide your body with some time to heal.

Tysabri, cost-wise, is pretty much in line with the other DMD's. I did find hospital infusion sites are much more expensive that smaller, private ones, so check around for the best price. Mine are billed at just under $5500.

If I had your current physical health, I would jump at the chance of using Ty. Enough said. Good luck!

[JayS]

Thank you for the great replies. The video that ru4cats mentions in this thread is quite informative--a must see for anyone weighing the various treatment options.

Since the question came up, I'm 38 years old. I have decided to take the more "aggressive" treatment approach despite no physical disability (for now, anyway). So, if I'm JCV negative I will be going with Tysabri and if I'm JCV positive I will go with Tecfidera. I had my blood drawn a few days ago and still have my fingers crossed that I will be JCV negative.

[Marco]

Is Tysabri now available for CIS patients? I realize it was recently indicated for first-line use for RRMS patients, but does that include CIS?

[JayS]

Well, just got my JC Virus results, and I am positive. Curiously, there was no index value in the on-line report I received so I've asked my doctor if I can get this.

Next stop (and my first stop with medication). . .Tecfidera. Just filled out the starter form from Biogen.

As for Marco's question regarding CIS and Tysabri. My neuro explained that her approach to treating either RRMS or CIS is the same. Basically she argued why wait for another attack when there is a 90% chance of it happening based on my current symptoms (tingling in legs, Lhermitte's sign, and 3 lesions: one in brain and 2 in spine). We both were prepared for me to take Tysabri if I had been JC Virus negative.

[Marco]

As for Marco's question regarding CIS and Tysabri. My neuro explained that her approach to treating either RRMS or CIS is the same.

Jay, I understand this is your doctor's perspective. My question is whether Biogen would actually release the medication to a CIS patient or if insurance would reimburse. These things operate in an environment far outside of your doctor's control.

[JayS]

Marco, I don't know the answer since I'm no longer going down that path due to my JC Virus results being positive. All indications from my doctor (an MS specialist) were that doing Tysabri would not have been a problem since she offered it as a real choice for me. I can only presume she was speaking from experience. However, I'm only presuming what the outcome would have been without any first-hand knowledge of what happens in the insurance/Biogen wringer.

[lindaincolorado]

Hi JayS, if I could have been on Tysabri 2 years earlier I think I would I would be going for long walks and dancing like I want. My R leg drags, I walk with a cane and use a scooter for distance-this was all before Ty-since Ty I have had no progression In Sept I start my 9th year

What is your titer ? As Myoak has stated, under .9 is low.

Best wishes