Treatment Options

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bogo_baby
bogo_baby Posts: 82 Member
Hello,

I was diagnosed with MS today. It was a lot to take in, but I guess after all of the testing over the past couple of months, I expected it.

My doctor gave me a TON of information about different treatment options that he wants me to review over the next week. I started reviewing some of it tonight, but I figured I'd ask for your personal experiences with treatment. I have textbook-sized brochure information on Betaseron, Rebif, Avonex, and Copaxone.

I can read until I'm blue in the face, but still won't know exactly what to expect. What are your experiences with treatments? Have you had to change treatments at all over time? What do you like/dislike about any treatments?

Do you plan on finding out more about the new upcoming oral drug (BG12 is it called?)?

Any help and information will be greatly appreciated!

Thank you!

Replies

  • Sinisi2012
    Sinisi2012 Posts: 333 Member
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    Hi there, sorry about your diagnosis. It is a lot to take in, just take it one day at a time and remember that although MS is serious and I wouldn't wish it on anyone else, there are a lot worse things out there! I was dx 10yrs ago and went through all the emotions anger, denial, depression etc. Then I dediced I needed to take control (as best as MS lets you) I educated myself by reading everything the doc gave me and I connected myself with the National MS Society (best thing I ever did!) They have reading materials, support groups, online support, financial assistance programs etc. I met a lot of people with MS, some you would never know and some who had it bad, but what I learned from them is that the saying "I have MS, MS doesn't have me" is so true.
    I started on Copaxone for the 1st yr. I had a lot of injection site reactions and taking a shot everyday really s**cked! I hated my neurologist too (cold and uncaring, not what a newly dx person needs!) so it was a rough year. I managed to get myself into an awesome neurologist one who took the time to talk to me and care about my feelings we decided to switch to Rebif. The 1st month was rough with flu like symptoms but then they went away for the most part and shots were only 3x week! Did that up until last year when I started getting terrible headaches. My neuro said that tends to happen to some with long term use. He told me to hang in there because there were some new oral drugs on the horizon. I am happy to say that in January of this year I switched to the oral drug Gilenya. Was the best thing I ever did! No side effects, no shots, no relapses!
    As far as my MS for the most part I am stable. I deal with a lot of weakness, pins and needles and numbness, but nothing debilitating. Over the course of 10 yrs I have had 3 major attacks which cause me to miss work and need Solu-Medrol IVs, I recovered from each attack with only a little residual side effects.
    Please feel free to ask me anything. I actually was a Support Group Leader for the NMSS for a few years. Best advice I can give is to educate yourself and find a neurologist that you truly like and trust!

    Take care,
    Sheila
  • Yellerie
    Yellerie Posts: 221 Member
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    Im sorry that you have to go thru with all this I hope you find something that works well for you. This was one of the most overwhelming things for me when I was first diagnosed. They throw all this reading material at you & want you to choose. I started with the copaxone because it had the lowest side effects & the subcutaneous shot daily really wasnt a big deal for me when that wasn't working I changed to avonex (an intermuscular injection) I did well on that for about a yr it was only once a week but I had to load up on tylenol & motrin with that I would take it friday night before bed with the meds to try & sleep through the aweful flu like symtoms. After complaining to my dr about how much I hated the side effects I switched to rebif very similar to avonex but because it is 3 subcutaneous shots a week vs 1 big dose the side effects weren't as bad unfortunately I kept relapsing & getting more lesions so I then made one of my hardest decisions ever & switch to Tysabri(every 4 wks by infusion) I was on that for 3 wonderful yrs but unfortunately I have developed the jc virus & had to come off Tysabri which really stunk cuz it was working so well for me. My doctor & I discussed a new plan I did what he asked & looked into Gilenya but with my health issues & its side effects I wasn't comfortable going on that (they say many people have breathing issues on it & I a pretty bad asthmatic) so I chose back to rebif for the time being in 6 months they are due to release a new MS pill BG12 which looks to have very few side effects (it has been on the market in Germany & to treat psoriosis(sp) for yrs) so when that comes out I will try that. I know its alot to take in at first good luck. If you have anymore questions about what I experienced on these feel free to message me.
  • goncountry
    goncountry Posts: 75 Member
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    I liked going on the msworld chat and asking questions in the early stages. Those guys know their stuff! I had no idea what was going on and they answered a lot of my questions about what different terms meant, etc. when I got tired of reading. I decided on Avonex which is once a week injection. I do the shot myself now without any problems. I can tell by the end of the week when it is time for my shot again because my left leg gets numb. I probably will not opt for the oral treatment until its been around for a good while, just my nature to be cautious and skeptical. I like Avonex for now and I seem to be doing quite well on it. Best wishes to you!
  • CheeksAJB
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    My regrets on your diagnosis. The good news is you now know what you're dealing with, so you can begin to make strides in your health. You can do it! I assure you, once "the dust settles" you will go back to feeling normal and living your life. :) I'll be sure to say a prayer for you, too!!!

    When I was diagnosed I wasn't given any options as to which disease modifying treatment I would take. Three different neuros told me my MS was so severe that I would need to start on Betaseron ASAP. I wasn't pleased about this at all....I threw a tantrum, screamed, cried, the whole nine yards. But, in hindsight I can offer a few positives about Betaseron (at least as I saw them..."saw" you ask? I haven't taken any MS meds since December 2011....but that's a whole other post!).

    Betaseron is taken every other day, and that may seem like a big pain in the patoot. BUT, there are pluses!

    1) the injections are subcutaneous (just underneath the skin), and in my book, the shots really did seem less painful. I was so glad to not have to deal with shots in muscular tissue!
    2) it doesn't have to be refrigerated. This was a HUGE plus in my book. I'm an active person who loves the outdoors. My meds could go with me anywhere and everywhere. Once you get the routine down, you can pretty much be done injecting in 3 minutes.
    3) Betaseron (I can't vouch for the other manufacturers) has a really great hotline for getting answers and info when you need it...24/7/365. I really appreciated my Betanurse, and I'm glad that I had the experience with them.

    All in all, it's going to come down to what suits your lifestyle the best, as there are advantages and disadvantages to all of the therapies. I'll be thinking of you as you grapple with these decisions; all the best to you!!!
  • Sinisi2012
    Sinisi2012 Posts: 333 Member
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    All in all, it's going to come down to what suits your lifestyle the best, as there are advantages and disadvantages to all of the therapies. I'll be thinking of you as you grapple with these decisions; all the best to you!!!

    That is the best advice, it is a personal decision on what you feel comfortable with and what works for your lifestyle. Because everyone's body and everyone's MS is different, you can ask 10 people for their reccommendations and get 10 different answers. You may even have to try several before finding the "right" one for you. Just be sure that you get informed and decide what you want. Good luck and keep in touch.
  • bogo_baby
    bogo_baby Posts: 82 Member
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    Thank you all for your help! In so many ways I feel so lost and overwhelmed with information. There's so much out there to learn, I don't even know where to start! But I'm trying.

    Thanks again for your input :)