Just diagnosed

[Corriel]

My LP results came back after only a week, showing multiple o-bands. I guess that changed my neuro's mind about treatment. After he gave me the MS dx he asked me which drug I wanted since I am opting not to wait to see if there is progression over the next 6 months. My DMD options are Avonex, Betaseron, Copaxone or Rebif.

If anyone would like to share their experiences, I would be grateful. My symptoms so far are mild. The big ones sem to be fatigue, cognitive issues and vision field deficits in addition to one restless leg (not sure if that one is MS related though).

Thank you,
Corrie

[cjldb]

I opted for Copaxone and my symptoms were similar to yours. I work full time and have two boys 11 and 9 and I didn't have time to deal with the flu-like effects of the others. I really was NOT excited about giving myself a shot everyday and Copaxone is the one that you have to do daily. However, I have found it very manageable and my MS has been fairly stable since starting it.  

Just do your research and I'm sure you will choose the one that's best for you. And the good thing is...you can always change if necessary. It's not a one time decision, you get re-dos on this one :)  Hope that helps!!

[sllowe]

Hi Corrie,

We have alot of discussion on our forum regarding varied experiences with the DMDs. I always suggest looking at your lifestyle and seeing what is a good fit for you. For example, look at the scheduling of dosing (Rebif 3x's weekly, Avonex 1x weekly, betaseron 4x's weekly and copax, once daily).

Also, there are three orals - I would have to look up the dosing, but believe them to all be daily.

My experience is with Rebif. Very tolerable, with a super thin needle. If you are needle shy, Avonex is once a week intramuscular with a new injector. I've contemplated switching to this myself.

If you go to our search feature, type in quotes words like treatment, therapy, DMD, how to choose, etc. If I have time, I'll dig and post you a few links.

I'm glad you are moving toward treating MS! Thanks for joining us!
-Shell

[JaneK1975]

I have been on Copaxone for a little over a year. I have been quite lucky with it, and have very minimal injection site reactions. Also, I just had an MRI which showed no new lesions from the previous six months, so I am hopeful that Copaxone is slowing the progression for me.

I think any of the drug options could work for a person, and it's really a matter of finding the one you feel you can be most compliant with. Once you start one, you'll probably want to stay on it for as long as it works/as long as you can. That link Lulu shared should help you decide. Please know that there is no wrong decision, as long as you're committed to being successful.

I wish you all the best. Welcome to our corner of the web.

- Jane

[Mummy76]

Hi Corriel

I am also in Canada.  I am in the process of switching to Gilenya but had to try an injectable first before my insurance would approve Gilenya.

[Corriel]

Thanks very much for sharing. I need to know the good and bad of each. As you said they all affect people differently.

[Corriel]

Hi there! Thank you for posting. He mentioned BG12 but its still not available in Canada. When it becomes availalable here it will definitely be an option. He didn't mention the other pills and I assumed it was because my symptoms are mild but I can't be sure.

[SarahL2491]

oops, me bad
I misready her  wording, gotta go clean my glasses.........sorry Corrie!!

[Lulu54]

One site I have recommended often is http://www.msdecisions.org.uk/ -
they walk you through the options of the injectable drugs in a logical manner that helps you understand dosing and side effects, too.

I'm wondering if there was a reason why your doctor didn't offer you one of the oral (pills) drugs that are now available?  Gilenya and Aubagio have both been available for some time and Tecfidera (BG-12) was just approved and they are shipping it now to pharmacies.

Whether you take a pill or a shot - congratulations on making the decision to be proactive.  The best thing you can do is start treatment early and stay on treatment - don't wait for another flair to  cause more damage.  

best, Laura

[johnthesider]

i was taken avonex for 3 yrs and i am only speeking on and about my story of taken avonex all pll are diffrent,, my exsperiance with avonex and im sorry to say SUKS literally 3 hours after injecting it into my musscle i was done with ackes cramps chills somtimes fever and definatly fatigue and it lasted 2 days feeling like crap was forcing myself to due it    today  i have not been doing my shoy now for 2 months now and not taking any medicine to treat my ms...im sure thats not good but yet today im able to function better and its not cause the shot is working its cause i stopped it..
im able to go into the sun again go to the beach n live again..
i have been exsperiancing pain again in my eye  just trying to deal with it anyhow i sweer to god i wish all of us the best and i dont wanna discourage u from doing avonex like i said it was my personal exspierance i heard alot of gd with it though from other ppl

[Corriel]

Thank you! So far Copaxone is at the top of my list but I still have a lot of research to do. Lol.

[Corriel]

My MRI showed multiple white matter lesions around the lateral ventricles but they are small ones around 1-2 mm. I have a 5 mm lesiin on the back of the left frontal lobe that's responsible for my cognitive issues and an 18 mm on my occipital lobe causing my vision field issues. My first attack was Sept 2012 which resulted in cognitive issues with over a quarter of visiin in each eye being gone for over 6 weeks. The vision got bad again but only in one eye. That started in Feb 2013 and lasted about 5 weeks.

[Mummy76]

Sarah, I think that's what Corriel said - she's choosing not to wit and see.

Corriel, I was on Copaxone and found it to be a good voice.  I had no side effects so it was an easy drug to take in that regard.  

Good luck with your choice, I know is a difficult decision to make.

[SarahL2491]

please think long and hard before waiting to start a DMD drug.  Early start is the best way to help slow down the progression.  If you have multiple (you didn't say how many) then you would not want to wait 6 months and find out you had been having relapses.  You can't undo what is already done, so best course of action is to start now.

Hope this helps!  My neuro started me immediately, said he didn't want me to get any worse.

[ghost39]

Have you had a MRI,what did it show?