In a tight spot and looking for some other thoughts

[Waydwnsouth1]

I guess I should start of by saying my MS is progressing at a fairly rapid state. I have been taking Tecfidera for about 11/2 years. my last MRI, taken about 2 months ago, showed one of the largest lesions had shrunk but it also showed numerous new lesions in my frontal lobes. So it is painfully obvious Tecfidera is not working.

Since things were progressing we decided to switch to Tysabri. However, my JC antibodies test came back "Low Level" positive. But there were no Titer levels listed. So for now that has ruled out Tysabri.

I saw my Neuro yesterday to discuss our options since my MS is steadily progressing. I also took my son so I would have an extra set ears. My Neuro said he talked the the Tysabri reps and they read my test results. They told him I was ok to take Tysabri. But, my Neuro, myself and my son all expressed a concern in taking Tysabri because I tested positive.

The end result was. my Neuro was going to get my Titer level, and speak with a colleague in Lafayette who has experience with patients on Tysabri with positive JC antibodies. I am gong to research Gilenya and Monday we will make a decision.

After saying all that my question is what are the experiences of MS'ers on Gilyena? Have you noticed and improvement in your MS? If any what side effects have bothered you the most? And finally is there anything I should be concerned about in taking Gilenya?

MS is scary but the treatments are equally as scary. Any input would greatly appreciated!!

Thank you for putting up with such a long post! But I am at the bottom of the barrel and I am growing more concerned.

[comnsense20]

hi wayd

I started Gilenya in August of 2013, dx Halloween of 2012. Up until Aug of last year I did not do any MS treatment because of what I saw my mom go through in the 90s with Rebiff and Tysabri. Basically any injectable treatments she would take were accompanied by flu-like symptoms. She was bed-ridden a lot during that time. I have really only had one terrible flare-up, the first initial one 2 years ago that led to my dx. Since taking Gilenya, no debilitating flare-ups or terrible side effects from the medication. If anything, some cognitive fog and memory issues, but nothing I can't adjust to. I think it's a great drug and so does my mom. Highly recommend it, if you can get a prior authorization to go through your insurance. They will try like hell to push the cheaper, less effective drugs on you of course. They sent me Rebiff for 8 month while I claimed it was ineffective and made me feel sick, until they finally said yes. Of course I never put one ounce of it in my body and instead took Advil, vitamins and moderate exercise. It tided me over until Gilenya finally came. My neuro tells me it has right around a 70% success rate with respect to stopping progression. That should be encouragement enough for you to at least try it. Hope this helped.

[Waydwnsouth1]

Thank you!!!

Commonsense20 thank you for the reply. It's hard to believe out of 149 reads I only received one reply. It was very helpful. As with starting any new DMD there is a bit of apprehension and I am more than apprehensive about this one. You helped ease my mind. When I started Tecfidera I had the choice of Gilenya also but something my Neuro said made me chose Tec. Now I have no choice. Thanks once again!! You definitely made me feel better about starting this DMD. Best of luck to you in the future!! We all need a little luck every now and then.

[kim-mastro]

Hi Way...South. is there any reason why Tec and Gilenya are the only dmds that were suggested? There are so many different options! Just asking!!!

[JennacydeL]

Gilenya has put me on track again

Gilenya has turned out to be a great medication for me. When I was first dx'd in '08 my neuro put me on Rebif, and I was fine for 4 years. Then my liver enzymes spiked so he put me on Copaxone and everything went to you know where in a handbasket. I was having multiple flares and one that was extremely bad.

Come to find out it wasn't the Rebif that caused the liver issue, it was the Tylenol I was taking for it. My neuro put me back on Rebif but after the 7 months on Copaxone, my body had built up an immunity to Rebif. I went into a huge, long lasting flare.

My other neuro suggested Tsybari but I flunked the JCV test and was deemed unqualified to be on it. Then he suggested Gilenya or Tecfidera. I chose Gilenya and so far so good. I think I've been on it 6-7 months now. I have not had one flare. The flare I was in the middle of when I started disappated and hasn't returned as of yet.

It was a bad flare, and everything came back except my walking. Now I have been using a cane for assistance outside of the house. However, I've been on Ampyra a month now and I can walk without assistance for a period of time, it's been great.

Gilenya works on me very well, I take it at the same time every day like clockwork. I went from walking, to cane, to walker, to wheelchair. Took Gilenya, went from wheelchair to walker to cane and now thanks to Ampyra I don't have to rely on that as much either. It's been wonderful.

I finally found a system that so far seems to be working. It's nice not having to take the shots. Just one pill a day as opposed to Tec's 2 a day and also, I didn't have any side effects from the Gilenya. My 6 hour observation went super smooth and I'm a fan now

I hope the Tec works for you the way Gilenya has been working for me! Good luck and keep fighting the good fight!!

~Jenna

[Waydwnsouth1]

Hey Kim-Mastro

I am currently on Tec and it is not working at all I have developed multiple new lesions in my frontal lobes on my last MRI 3 months ago. I tested positive for the JC Antibodies so that ruled out Tysabri. And I have already been on Avonex and Copaxone. So that leaves me with Gilenya for now. If this doesn't work we may consider Rituxan. "Consider" being the operative word.

Thanks for asking though.

[poppydarling]

I was on Rituxan but because of a recent MRI and a new spinal cord lesion, my doc now wants me to try Gilenya ( hence my visit here :-)).

I really liked Rituxan – the infusions were quick, I had very few side effects, and I could really tell that it was calming down my immune system because I was not nearly as exhausted in the month(s) after the treatment.

I was on Tysabri for eight months until I developed an allergic reaction. Which was a shame because I really felt that drug did something amazing. This is before the JC virus testing protocol, so I don't know if I would've eventually had to come off it anyway I feel like the Princess and the Pea when it comes to these drugs.

[kim-mastro]

Hey Way...South

Big bummer! I hope you find something that works for you with few or no side effects. I went 36 years without meds. Copaxone seems to be working (I've only been on it since June) but who knows. Good luck!