I am somewhat new in my MS treatment and disease-- diagnosed Oct 09, Copaxone from Nov 09-Jan 12. My wife recently posted about the Copaxone failure and I have resigned that I must switch therapies, which I hesitate to do because I have no side effects with Copaxone.

I have been told my choices are Avonex, Rebif, or Gilenya at this time. What are people's experiences on these (side effects, effectiveness, good vs. bad)?? Is there any resource you can recommend where I can objectively compare these (aside from the drug company websites)? I feel overwhelmed by all the information.

Thank you very much,
Mike

I am sorry that you are having to switch from something that is giving you such little issues, to something that may be harder to take.

After failing off of Beta, and Copaxone, I decided to not jump on any of the DMDs, and changed my diet, exercise, and lifestyle to include loads of rest, prevention and naturalistic care.

I know Beta made me feel ok, but my liver went wild. Copaxone was a nightmare for me to take as I felt horrible on it. I know that I will probably have more attacks, and stronger attacks, but at least in between I am able to live my life.

I second what Dejibo says. After I developed heart and lung lesion on DMD, I stopped drugs in 2004, went on the Swank Diet, which is a very low sat fat diet, began swimming a mile EVERY day, sleep 9 hours night and rest one to two hours daily. I keep my weight normal too.

Am doing well off drugs. Even took up surfing last year. But, My MS may be less aggressive than yours.and one has to have will power to adhere to a wellness plan.

PS Gilenya has killed a handful of patients as has Tysabri. Unless you have aggressive and rapidly deteriorating MS, think twice about taking them.

It really is such a personal choice. What may scare the pee pants off of me, may not make you shake at all. Some folks are terrified of the possibility of depression and will stay away from the interferons. Some folks are terrified of the bigger needle that comes with Avonex and wont choose it. Others like that its only once a week and run to it.

You have to read all that you can read, discuss it with your family, friends, and MD and take your best shot (no pun intended) what may make me horribly ill, may not phase you.

I am on the "makers diet" I eat as if I were back in bible times. Swank advocates extreme low fat, low sugar and other things that I wasnt willing to do. I do eat the occasional sugar product, but I make it from scratch, not from a box. I avoid MSG, high fructose corn syrup, splenda, aspertame, or other chemically manipulated foods such as corn products or white flours. As a matter of fact while I am not gluten free, its rare that I eat gluten. I am not intentional with it, it just works out that way.

I feel dramatically better since stopping my DMD, and have more energy, more ability to think, and be part of my own life. On C I felt mentally crippled, I had bad panic attacks, was covered in psoriasis and itched along with losing hand fulls of hair each day. it was miserable for me, and I felt like my life was spinning out of control. Others take C and dont notice a single side effect.

I wish you luck no matter what you pick.

Welcome Mike to NeuroTalk.

Choosing a DMD is like a crap shoot, if one doesn't work, try another one, except "G"...stay away from that one for awhile. If the others don't help, then you could try Tysabri, but only after you test for the JCVirus, to make sure you are not in danger of getting PML.

In the Meantime try som LDN(lowdosenaltrexone..look it up..)...shouldn't hurt, may help...

Good luck in whatever you choose..

I've tried Gilenya and Rebif. If I had to choose I would choose Gilenya, because I hate needles. I want to try LDN but I have to find doc that will prescribe it. Right now I don't use anything. Gilenya was too expensive even with ins. and co-pay assistance for me.

You have too see which fits into your lifestyle and what your comfortable with. My previous neuro said that Tysbari was if the other DMD's didn't work. I switched to an MS specialist who is non responsive. Now I have to find another neuro. Find a good neuro that can help you through this and help you find treatment that fits you.

I was dianosed October 2010 and started Rebif November 2010. I stayed on Rebif until October 2011. At that point I was having issues giving myself the shot. I also got hit with almost every side effects of the flu and I even became depressed. In addition, I developed a new liason which sparked my nuerologist to change my meds. I was calling out of work at least once every 2 weeks. I requested to try Gilenya. What a big change. I feel 95% myself. I've only missed the days I had to go to my doctors. I haven't changed my eating habits, but I feel great. And my MRI in May revealed I'm stable which is very good. I would definitely recommend Gilenya.

Hello Sny, welcome. I'm so glad that "G" works for you. It's still a relatively new DMD and hasn't been evauated for it's efficacy by too many patients, so thank you for your testament.

We've heard a few negative things about it, such as heart trouble, PML and death, but there has to be some good to it, otherwise, why would it be FDA approved.

Thank you for being one of our pioneers here.

My MD wanted me on Gilena but when I said "didnt that stuff just give several skin cancer, and didnt one just die after getting PML after jumping from TY to G?

He told me that ALL drugs will have side effects and some will make you feel horrible or bring on another disease that was unintended, but we need to control the "silent damage" that is occurring with this disease, and he would rather see me have a melanoma removed than to see me suffer blindness and being crippled by this disease. With careful skin monitoring and other check ups they can avoid most of the fall out that happens on these meds. Like LFTs every 3-6 months.

I dunno, im scared by trading one disease for another. I survived breast cancer, and skin cancers run in my family. PML scares the wits out of me, and while yes, I am having relapses off my meds I feel so much better. am I kidding myself? hmm...probably, but I hear rumors that an amazing drug is going to be released in the very near future. Its just coming out of clinical trials soon and headed to FDA approval. I will try to get the stats and come back.

gahhhh....I am trying to decide if I should try one of the DMD,s or go all natural. I had no idea they can cause other diseases. Puke.

Thank u....

Gina