New to this, need advice

[liznicole]

Hello All!

I have never reached out or asked for advice/told people about my situation. I feel it sure can't hurt and I the way I deal is to not think about/pretend does not exist, which I realize is NOT smart. I was diagnosed literally the end of 2006, Dec 31st when I was 22 years old. The first thing my neurologist said to me was "you look great on the outside, compared to what's going on in your inside". hmm, still not really sure how to take that.

This particular Neuro wanted to be "as aggressive" as possible so I was put on steroids, avonex for a year, and then Tysabri. The Tysabri was working out great, only had to deal with once a month, and I could do homework while I got the infusion! Two years later after I found out I was antibody positive, I unfortunately, because of insurance purposes could not see the same Neurologist and/or go to the same center I had been receiving treatment at.

The first doctor I went to after my insurance changed told me he would "not follow me on Tysabri" and he suggested a women Neuro. The previous clinic I went to really believed in Tysabri and thought the benefits far outweighed the risks of the treatment. So this women Neuro was willing to follow me on Tysabri, but could not tell me what I should do! My mom even straight up asked her, "if this was your daughter what would you do?" She still couldn't answer and basically said it is ultimately 'your choice' which I understand, but I am seeing you for advice, so PLEASE give me some! (she's probably afraid to get sued) This is why I respected my first Neurologist so much, he would tell me straight up, which I appreciated.

Anyway, I have been seeing this lady for about 2 years now and I decided to start on rebif. I did the rebif for about 6 months and I felt it was making me very depressed and I was losing my hair...so I took a drug holiday. I have an appointment coming up this Monday with her and I need to pick a therapy. I know I should be on something, for long term purposes if nothing else. She gave me a print out of all of the choices and basically left it up to me.

I am 27 years old now so I have "my whole life" ahead of me, and want to stay my normal active fast moving self. Do I stick with the older meds that have a known long term effects like the rebifs and/or copaxones or do I try the pills like Gilenya and Aubagio that do not have known long term effects because they are so new?

I apologize for spelling and grammar I just want to get this all out...Would really like to hear from others regarding their experiences with any of these drugs and/or what they think I should do in my situation. Any comments/suggestions/experience to share would be greatly appreciated! Thank you for listening to me rattle on...

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[Milhous]

many of us have tried many different drug therapies. Some of is trying to find a therapy that works for you. I have tried Betasuran(gave me reactions that took weeks to heal up), Avonex, Novontrone(gave me heart problems), Copaxone. I have been on the Copaxone the longest. But we are all different and react differently to the meds.
I can see why she is reluctant to give her opinion but that does not help us in deciding what to do.

[lemstar]

I hate to sound like a recording, but its a personal choice, and you will have to make the decision based on what's best for you. That being said, while Aubagio is a new drug, it is a cousin of an old drug used for arthritis. I think if I was starting out now, looking for medication, I might try Aubagio. My MS doc suggested it last time I saw him, as I am not on any DMT. We both decided not to put me on meds at this time, as I have had MS for over 30 yrs, with mild progression. The worst part of the progression was when I was on Rebif. If I choose to take a DMT, at this point I would probably try Aubagio. JMHO....

[lorib]

Hi! I completely understand what you are dealing with. I was diagnosed in 2004 when I was 23 and had just graduated from college. At the time my neurologist put me on Betaseron (if I remember correctly the other option was Copaxone). He recommended these two drugs because I was young and wanted to have kids. The good news is there is a more information available regarding the older DMDs now than 6 or 8 years ago.

I choose to start Betaseron and did well on it. Roughly 5 years later I developed antibodies and switched to Tysabri. After a year my neuro pulled me off that drug because I wanted another baby and he was worried about my risk of PML. You have to be off Tysabri for 6 months before you get pregnant and all or most of the other dmds it's 3 months. So, I switched to Copaxone and have been on it for almost a year.

Your neuro can't tell you what drug to take because that's not her job. Her job is to give you the information you need to make the best decision. I suggest you sit down before you appointment and plan out your life for the next 10-20 years. Where do you see yourself? Do you want to have kids? Or do you just want to be on the most aggressive drug. Aggressive isn't always good. I would consider Tysabri aggressive. That's why it has a small risk of a side effect that would kill someone. Copaxone I'm pretty sure has no side effects except nasty sight reactions and you have to do a shot everyday.

None of the medications are awesome, in that there are no side effects and they are 100% effective for 100% of people with MS. You just need to weigh the pros and cons of each drug that you are considering and your doctor can help you do this. Also, whose to say if you choose an interferon Monday you can't switch in 5 years to something else once it has a bit of a track record. I think the newer drugs are supposed to be more effective than the older drugs so keep that in mind. Good luck making your decision. Keep things in perspective, if you choose a drug that doesn't work for you, you can switch to something else that will probably work better.

[Cat Mom]

I have had success with Copaxone for the past 5 1/2 years. I wish I started on this drug, not Rebif, which made me feel worse than my MS did. It's a personal decision but the lack of side effects would top my list. Good luck!
Jen

[cosake]

It is a tough decision, but I don't think there is any wrong decision. You need to find what works for you and your MS, and for your lifestyle. Every patient is different, and some of the drugs are not effective for some people. A lot of it is trial and error. It's especially difficult because there are no tests that will show if a drug is actually working and doing anything to help your MS.

In the last three years, I have been on Betaseron, Copaxone, Gilenya, and now Avonex.

I had bad side effects with Betaseron (including heart palpitations), and extreme site reactions with Copaxone. Off Gilenya because it has never been tested in people who have ITP (an autoimmune blood disorder that I have and had my spleen removed, so now I'm considered immuno-compromised).

I am now on Avonex, and I was pleasantly surprised at how painless it was to do the injection compared to the Beta and Copax.

I think of Tysabri as an aggressive end of the line treatment myself, but that is just my opinion.

Aubagio sounds promising. I heard that BG-12 approval has been delayed by the FDA. They are also working on other new therapies down the pipeline, and being young, you will have opportunities to try new things.

Good luck with your decision, and if you try something and you don't like, or it doesn't work well for you, there is no reason you can't try something else - you are not locked into your choice for life.

[lukeduke]

Well I am a little bit older than you, but I was diagnosed at the end of 2006 as well only a little bit earlier(Dec 15th.) I did Rebif from March 2007 until November/December 2012. I am on Tysabri now. I like that the Tysabri is only once a month. I tested negative for the JC virus antibodies. You have found a great place for information. Welcome to the boards.

[CaroleL]

Hello and Welcome Liznicole!