Just found out I have MS

[Angelchef80]

Found out a week ago that I have MS. Does anyone take gilenya? Trying to figure out my treatment plan.

[kdali]

Welcome! Sorry that you have joined us. I do not take that drug, but someone who does will chime in soon.

[greaterexp]

I’m sorry about your diagnosis, but I’m glad you’ve found us. I can’t offer any info on Gilenya, but hope you look at all MSAA has to offer.

[Kenu]

Welcome to our crazy 😜 group of MSers. What a great place to vent and find out lots of great information on MS. We are not doctors, but we have lots of experience and options. I was diagnosed twenty three years ago and have been on seven different DMT’s thru the years. I’m in my sixties and still upright and driving. Life goes on and we have to learn how to adjust and move on 👍. Stay positive and don’t be afraid to ask or post something 👍🙏🐾😉. Ken

[RoyceNewton]

Angelchef80, G'day. Are you saying that you can cook? Why have you chosen Gilenya?. I understand that it may have nasty side effects. My understanding is that Tecfidera has less of a side effect profile. I say this because I looked at Gilenya once and went with Tecfidera.

Either way good luck on your choice and welcome to YOUR ms journey.

Royce

[Angelchef80 in reply to RoyceNewton]

I am a chef. I have not chosen a treatment yet, my dr wants me to take gilenya. The side effects are super scary, I am trying to learn as much as possible about all treatments before I decide.

[kdali in reply to Angelchef80]

What makes your MD choose this drug over the others?

[Angelchef80 in reply to kdali]

I see him Friday to discuss, that is one of the questions I have. I did tell him I would prefer a pill over iv/ injections.

[kdali in reply to Angelchef80]

Ah, ok! Let us know what happens.

[ssdw1958]

Hi I’m ssdw1958 I do not used gilenya I was offered to take that drug or Ocrevus I am on Ocrevus but I had been on Tecfidera for awhile but my doctor wanted me to get off of it nothing wrong with it but my age and I had been on it for 5 years. I was diagnosed since 2004. Take it easy.

[LeannEHl]

I have been on Gilenya since the drug trial. As a result, I get it FREE now. Most folks got taken off of it due to liver values, before the trial was over. I was one of the few that lasted!

Honestly, I was SO tired of the needles, that I embraced this drug. I started on the trial when we still lived in Ottawa, Canada, then transferred to Waterloo in southern Ontario, then to California!

I'm supposed to say that I'm still R&R, but I suspect that I'm leaning towards secondary progressive. I'm one of five family members that have (had) MS, and I recognize the signs all too well.

[Bobby59]

Good morning, I'm sorry to hear that you have joined our club. Back in my day there was only three choices. But, if you ask you will find a bunch of very helpful people.

[Fancy1959]

First and foremost Angelchef80 I want to officially welcome you to this awesome chat room. This is Fancy1959 and I want you to know you have found a safe place where we promise to speak to you with respect, talk to you about any concerns you have, point you or give you examples of information that you seek, and simply I'll give you a place to come to speak to people who truly understand what you're going through. I guess you know that your neurologist is the professional that you need to work with. Here in the chat room we are not doctors but we just give you examples of what works for us. We hope you understand some do's and don'ts of being newly diagnosed and offer you insights that we have learned the hard way. There are so many DMTs or is the definition of implies Disease-Modifying Therapies that you can research individual therapies and speak to your neurologist about what's out there and what would work best for you. I have never been on gilenya so I cannot really give you any insights on the drug. A lot of what goes into determining what therapy would work best for you is your age, your level of disability, and the stage of the disease or as we call it this monster has racked your body with. Many people when they are first diagnosed find themselves in relapsing and remitting Ms. A few unlucky ones find them self in primary Progressive MS and like myself I have had Ms for over 20 years and I have moved past relapsing and remitting Ms to secondary progressive MS. So go back to your neurologist and speak to him or her about all the therapy options that he would suggest for your particular profile. I myself am on ocrevus and I'm happy to report that back in April I had my first clear MRI, free of enhanced lesions and free of new lesions that I have had in about 5 years. Yahoo! I look forward to getting to know you better and please let us know how your individual therapy plan and disease progresses. Until we speak again take care and remember that together we are stronger!

[Augie57]

When I was first diagnosed with MS in 2002, I took Avonex and was on it for 11 years (2002-2012). When my doctor thought I might be moving a little more toward secondary progressive MS, he put me on Gilenya. I have been on that for almost 6 years now and have not noticed any side effects. I love the fact that there are no more needles in my life.

[Wrkngwmn]

Yes, I do. I have had MS for over 15 years. I have taken Copaxone and then BefaSeron. On both I would have exasperation’s about once a year and had difficulty walking. I started Gilenya about 7 years ago as soon as it came out. I have not had an exacerbation since. I work full time plus, I travel weekly for my work all over the world. I hike with my kids and work out. Basically I feel great. I have issues with balance and numbness but it is manageable. Good luck to you.

[RoyceNewton]

it IS your choice. I do not know what the side effects are on Tecfidera, but it has not killed anybody to my knowledge and it is very easy to take. Golenya hs killed people. Easy decision, NO to Gilenya YES to Tecfidera. Sorry to confuse you more, but honestly 2 tablets a day is very easy to do.

Royce

[bxrmom]

Angelchef80 I'm sorry to hear you joined our club but glad you are here. I was never on Gilenya but I am on Tecfidera. My neuro at the time tried to offer it to me but I chose Tecfidera. I was on Copaxone since 2006 but was tired of needles and wanted to go on a pill. 2 pills a day is not bad, I set a reminder on my phone to take it after a meal. I took a low dose aspirin when I first started it to help with flushing but that went away in about a month or so and I no longer have to take it.

Look forward to getting to know you,

Jessie

[REDLIPS44]

UGH, WELCOME, to many new people joining, MS is so )_(*&)*& I can't say it. So you will learn what works for others may not work for you. This monster is very unpredictable. But best of luck to you, and again welcome, we are a great group and a lot of good discussions and a great place to vent.

[Jazzyinco]

A very warm welcome to you Angelchef80, you have awesum advice here, &/+it is your choice, but looks like Tecfidera ((pills)) are a good choice here, I may look into them myself, along w/better diet. Keep us posted.🙏😻🐈🐾😍💜Blessings---Jazmine

[positiveness]

Hi! I am so sorry to hear that you have multiple sclerosis. I actually take gilenya along with low dose Naltrexone (LDN) and ampyra. I wrote a book about a lot of m s experiences that I have. I feel it still reading this book will give you more knowledge about multiple sclerosis. The title is FINDING THE GOOD DURING BAD TIMES WITH MULTIPLE SCLEROSIS

[Kellyj44]

Sorry to hear that. Welcome to the club- our community.

I took Gylenia for the 1st 3 years. It did well for me. I'm now on Ocrevus - an infusion.

Gylenia worked for me for awhile.

Good luck with this journey we call MS.

Wish you all the best.

Hang in there and think positive!!!

[6092177588]

Not sure about this drug. I hope you give yourself time to accept this as we all need support physical and spiritual. Research, ask questions and Ms team. Not easy

What type do you have? Thanks

[Angelchef80 in reply to 6092177588]

RRMS. I did a lot of research and asked a lot of questions. I decided to go with gilenya.

[TreySlinger]

Me too keep me up to date