Just saw my neuro last Thursday and of course he would like to see me on a DMD. He was actually amazed at how well I was doing since I haven't been on any DMD's since 2004. He recommended Tysabri or Gilenya, which are both viable options for those of us who cannot take interferons.

I went home and did some research. I personally can't see myself taking either one in the near future. Gilenya sounds wonderful but you should've heard my neuro rattle off the side effects: heart, lung, eye toxicity, elevated liver enzymes, melanoma, macular edema, shortness of breath, bronchitis, bradycardia, etc. Think I'm going to take my chances a bit longer and wait to see the long term studies on Gilenya.

I too am off all DMDs and simply cannot see myself jumping on any of the choices left to me. Scary to be on them, Scary to not be on them.

Next week i'll ask my neuro about G. I'm just worried about urine infections since i constantly get them as it is & antibiotics/septics make me itch.

Anyone know the effect (WBC?) difference between G and Novantrone?

I saw my neuro today to talk about Gilenya. He has been following the data of the 300 or so people who have been on the drug for 6 years and the couple of thousand who have been on it for 3 years. He said it doesn't look like UTI's are a big problem. But people get lots of respiratory infections. Also herpes infections are a problem but he is not worried because as he said "we have treatments for that but not for PML which you get on Tysabri". He said more people seem to be getting viral infections rather than bacterial infections. It has a different mechanism of immunosuppression than Tysabri.

He said only people with asthma or other chronic respiratory issues should avoid the drug. For those with healthy lungs he saw no evidence of damaging pulmonary effect during or after going off the drug. He also told me the data did NOT show any cardiotoxicity (that's different than the initial slowed heartrate). That doesn't mean it can't happen 10 years out...but we at least have some people 6 years out.
There were 6 cases of macular edema. In 5 it went away after the drug was stopped. One person was left with vision problems afterward but that patient was on the higher dose that is not being prescribed anymore. He said that most eye problems developed in the first 4 months.
He recommended dermatology checks regularly.
He likes what he has seen so far. Apparently my clinic is setting up 5-6 people to wait out the 6 hour first dose together--I guess it's similar to the infusion clinic when you get Tysabri. So you better hope you like the people you are stuck with for 6 hours!!! The funny thing is he is really a Tysabri and Avonex guy--not a shill for Novartis at all. He left it up to me to decide.
If I remember anything else he said I will let you know.
By the way he does not like cladribine because of high cancer risks and everyone in the clinic has a pool going about whether the FDA will ultimately reject it. Everyone says yes.

Thanks for the insightful information on Gilenya. I was dx'd in October and have opted for Gilenya over Tysabri. I have been trying to find any information on long-term users such as those in the clinical trials that have continued use so your post has been very helpful. Once I start Gilenya (early January) I will post my experience.

Thanks again.

Al

Good luck Al! If I was newly diagnosed I would choose Gilenya over Tysabri. Yes, please come back and tell us how you do. I'm on Tysabri now but will likely be switching to Gilenya in the spring. I love Tysabri but I'm almost at the 25 infusion mark (next week) and can't deal with the PML anxieties anymore.

Quite important info, I have asthma, as I'm sure many others have at varying degrees.

Thanks Natalie. When I did my research on Tysabri vs. Gilenya (read all the clinical trial data). It was a tough call because T has a better proven effectiveness track record & G appears very effective as well, albeit with less of a history. The slight PML risk of T vs. the G side effects swayed me away from T. Good luck on your future switch from T to G!

Al

Started Gilenya 2 weeks ago. Sat in the dr's office for 6 hours to have my heart rate monitored. Apparently it dropped a few beats in the first hour. I honestly didn't even notice. Make sure to take something to do and some food!

I love taking the pill instead of the shots. The only problem is that I have been having problems walking for the past week!!! Makes me nervous. I'm so confused....is it my MS (from being off any meds for a month before starting G) or is it a side effect of the pill? I have an appt to see my neuro next week.

My co-pay is going to be the same as it was for Rebif. I was told that Novartis would be paying my co-pay for the first year I am on Gilenya. I have good insurance so this is good news for me.

I hope I don't have to go off of this because of my new symptoms. Time will tell

Lisa

I hope you don't have to go off of it either and that it works for you. It would be so nice to take a pill for MS, have it work with no horrible side effects.

I hope this is it for you.

Let us know how it goes.