Latest Neuro Appt - Discussing next DMT

[Marco]

I have failed a number of disease modifying therapies. The last one I failed was Tecfidera after I started continuously flushing (24x7). I've been off Tecfidera since July 5th and I am still flushing, but it has gradually decreased over time. Here's the thread about quitting Tecfidera.
http://www.msworld.org/forum/showthr...quit-Tecfidera

So I went to my VA neuro today to discuss medication options. I wanted Tysabri for 2 years, but because I am JCV+ he refused to consider Tysabri or Rituxan. He wants me to go on Gilenya. I told him more Gilenya patients have contracted PML than Tysabri patients during the first 24 months (he was not amused, but mathematically I am correct).

The net result is I now need to decide between Gillenya and Lemtrada. They have never prescribed Lemtrada and he's concerned the treatment may be delayed for months getting approval or outright denied. The VA may approve for me to get locally infused -or- send me to a VA infusion center that is doing Lemtrada (I'm not sure there is one).

• Lemtrada has bigger risks, but potentially a much bigger reward.
• Gilenya is generally considered safter, but it's a lateral move from Tecfidera.

I have between now and Friday morning to decide. <insert Jeopardy music>

[KitOP]

Good luck my friend. You are probably the most educated MS patient that I know.

The right decision will come to you.

[KatieAgain]

I doubt there is a VA certified in any of the States to do the actual Lemtrada Procedure at this time. And if there is...I would be scared.

If it were me, I would ask the VA Neuro for a second opinion. His logic seems flawed in regards to TY unless your titer level was off the charts.

I would absolutely insist on TY for 24 months and then hopefully the VA will have passed proper protocols for Lemtrada.

Are you eligble for the new Veterans Choice Program so that you can see a Civilian MS Specialist? It sure would be nice if you were...you could bypass the VA completely.

[BadAttitude]

Marco:

The statistician in me would consider Gilenya, even though I failed a year's trail on it. My MS took off like somebody fed it Red Bull and I had two of the worst relapses in my life, with residual damage. Plus the whole time I was on Gilenya, I felt like I was being waterboarded...like I had permanent fluid in the lungs, a feeling like low grade drowning. Of course, everyone's experience varies and it might not happen to you or anyone else for that matter. But it happened to me. I hate Gilenya, but it COULD work for you, and Lemtrada is an acknowledged risk.

If I had had the opportunity to go on Lemtrada before Gilenya, I would have, because it shares chemical composition qualities with Tysabri, which I did extremely well on but got pulled off of because of high JCV titer.

Oh well. If you're a gambler, go with the Gilenya and see how you do. That would leave you a stronger option if it doesn't work.

[Marco]

Thanks, Kitty!




Katie,
I went in requesting 2 years of Tysabri, but he would not support the request. He said, "no JCV+ person is getting Tysabri prescribed." Unfortunately, he is the head of neurology and there's little room for compromise.


I agree with you about VA infusion centers. The neuro really doesn't know anything about the VA and the Lemtrada process. He knows of no one in our region that has received Lemtrada. He wants me to get a second opinion about Lemtrada and that is from a doctor that is a leading advocate for Lemtrada treatment. The doctor was quoted as saying Lemtrada is a good choice for all MS patients so I know what he's going to say. It's normally 3-4 months to get in with him so that is a whole other problem. He also does not know if Lemtrada would be approved because of the cost.




I am eligible for the Choice Program, but that program hasn't worked well for me. I had a surgical consult via the Choice Program that took 5 months to schedule. I also have commercial insurance, but I no longer qualify for co-pay assistance programs. So either I come out of pocket or I get the VA to pay ($0 copay for any MS medication).




Right now, I am leaning towards Gilenya. While I would prefer Tysabri that is currently not a choice that I have. While the Lemtrada possibilities are tempting, it doesn't have a long enough track record for me to be comfortable with the risks. Considering how poorly I have done on other MS medications I am concerned how that might impact the Lemtrada side effects. I do not need MORE problems on top of what I already deal with.

Thanks for your feedback.

[Marco]

BadAttitude,
Thanks for your feedback. There's just no perfect answer for those of us who struggle on DMTs. I know several close friends that have not done well on a number of medications. Gilenya remains the safer choice, even though Lemtrada has a much better upside. My wife and I will discuss our options tomorrow and make a decision. Considering my past problems with medications it will probably be Gilenya. My wife tends to be a bit more conservative than I am, and she'll have veto power over Lemtrada. There's no way I would do Lemtrada without her 100% buy in.

Thanks again!
Marco

[KatieAgain]

Well then, G it is.

When I had to go off Copaxone, I decided to wait about 10 months or so to go on Tec. My old neuro wanted me on TY in the short term. I declined thinking I could make it to Tecs release. Worst mistake of my life. Huge Flare...and I mean huge. They put me back on Interferon to await my acceptance into a MS Specialist's practice. I actually still have a box of Tec in my medicine cabinet...unopened.

Bottomline is G is a great "inbetween" drug. It is at least something.

Since you are eligible for Veterans Choice...re-engage now. Try to get into a Civilians Practice. That way if you have drug failure again you are already settled into the MS Specialist's Practice. Veterans Choice has recently caught the eye of Congress again, because Congress allocated a huge amount of money for it. The VA is in the hotseat right now over it. If you don't get it in a timely manner, e-mail your Congressional Representative...they have only 72 hours to respond to Congress. The money is there...go out and get some of it...and don't let go of the issue until the fat lady sings.

Your VA Neuro sucks and needs to be reassigned to Kitchen Duty. When you do go in to him for the G Script processing, give him an autographed copy of your book and tell him to read it. Seriously.

Good Luck with G.

[ru4cats]

Marco, we always come to you for advice, not vice-versa. However, I will relate a conversation I just had with my neurologist a week ago today. She is really a God-send for me and all of Montana. When I had to roll the dice for a neurologist, I got her and am eternally thankful to the powers-that-be. When diagnosed, finally, she really pushed for me to go on Tysabri, not even knowing if I was JC +or -. Due to my age, 58 1/2, she knew the future that lay ahead, and wanted me on the drug with the best efficacy at the time--Ty. I'm doing well, JC-, and everything holding steady. At my last MRI the best part on the results was "normal brain volume" for my age! Yippee!

Although I'm happy on Tysabri, I'm always checking in with her on the new drugs. Last week I asked her about Lemtrada, and this emoticon describes exactly her face. She even shook her head slightly and said, "No, no, no." She went on to say that she would only use this drug as a last, last, last resort when all else fails. I'm sure you're aware, and she relayed to me, that the "medical issues" that continue after the infusion are in the scary range. She also said more keep cropping up as more and more people go on the drug; I guess the thyroid stuff continues. One neurologist in her office was just getting ready to put one of his patients on the drug. I'm sure more will be learned about the side effects in the future.

Too bad about Tysabri. It really has worked so well for me. All the best.

[Marco]

ru4cats,
I think it's great so show others the struggle we all have with medication decisions. It's not simply picking one and forgetting it. There are no easy decisions and no guaranteed best decisions. I knew what I wanted, but the neuro refused to write the script. That left me with different choices that I needed to consider.

I did push back again on the neuro and waiting to hear his final decision on Tysabri. He wanted me to get a 2nd opinion on Lemtrada, but the 2nd opinion doctor is also a nightmare. They want me to submit 5 years of medical history for the doctor to review over the next month or two. Then he will decide if he is willing to see me as new patient and that takes another two to three months. Then if he agrees I should go on Lemtrada the VA neuro has to start the process. It will immediately get denied at the local pharmacy and then go up to the actual hospital. There they will review it and it may or may not get approved. By the time this process completes it will be 2016 and still no guarantees. Gilenya is just a much easier choice for today. If I have problems with it the neuro will then have to decide between Lemtrada and Tysabri.

I want to thank everyone for their feedback and well wishes. I have yet to find anything about MS that was easy (besides falling down). I wish everyone well!