Just Diagnosed with MS need help deciding on meds

[Angiee]

Hello,
I was diagnosed over this past weekend with MS. I was admited into the hospital because ive been having trouble seeing and my balance is poor. After almost 2 years of jumping from one neuro. to the other, I finialy found a great neuro. that went above and beyond. He sat with me even threw my MRI's and read them right there, called me on the phone and was just amazing, I know god sent him to me.

Now that It is official, I have an apointment to see him to set up my next step, the treatments.
My question is what medication's work best for you, and what are the ones that you do not recomend. I did have 2 prednazone (spelling) IV treatments while in the hospital, and other then having SEVERE dry mouth, I was a little better ( I can touch my nose with my eyes closed )

It is very important to hear what some opinions are as they are comming from you the people taking these drugs personaly. I want to try and make the right decision right away, so I can start feeling better and my quility of life will hopefully start to get back on track.

ANYYYYY information drug related or anything else will be super appriciated, any links or any info on products or anything.... Thank you in advance.

[MrsBones]

Welcome to MSWorld!

My suggestion is to start here:
http://www.nationalmssociety.org/abo...nts/index.aspx

You can get some basic info about treatment options and link through to each drug's site for more information and to call for one on one discussion of any questions you might have.

This is tricky:

My question is what medication's work best for you, and what are the ones that you do not recomend.

It is very important to hear what some opinions are as they are comming from you the people taking these drugs personaly. I want to try and make the right decision right away, so I can start feeling better and my quility of life will hopefully start to get back on track.

You'll get 100 different opinions about the same drug, sometimes from 50 people. For example, I've tried 3 DMDs so far, hated 2, am OK with the 3rd and am shopping for the 4th. The 2 I hated are actually well tolerated and preferred by lots of people, one of them considered a miracle drug by many who take it. The 3rd I'm OK with? I hate it some days and love it others.

You can read the stats and get the personal opinions, but the truth is you won't know if you've made the right decision until you've stayed on a drug long enough for the follow up MRIs. If the side effects are minimal, manageable or non-existent, you can stay compliant and that follow up MRI looks good, then you know you have the right drug for now.

There are a few important points I do want to make. First, no DMD will make you feel better or get your QOL back on track. Your body may do some healing on its own, but that's not a given and no drug at this time can assist that. A DMD may get the MS slowed down enough to give you a better opportunity to heal, but won't make it heal. The idea is to try and prevent future damage. On a more positive note, symptomatic meds, diet and exercise can help manage many symptoms and can help the QOL get back on track to some degree.

Second, there's no real way to tell, even with stats and personal stories handy, what any given drug will do for you as an individual. The most commonly used and oldest drugs, known as the CRABs (Copaxone,Rebif, Avonex and Betseron) all have similar efficacy, so from that standpoint the difference is insignificant. You just have to go for the gusto and pick one whose potential side effects and schedule fit your lifestyle and just try it. It's no big deal and quite common, in fact, to switch drugs if one doesn't work out.

Third, don't let personal stories scare or sway you. There are side effects from every drug. You can't count on getting any of them. When you read the posts here, you'll see lots of horror stories. People who are having a good experience with their DMD aren't usually here posting about it.

Do research on reputable websites, like the NMSS and the individual drug sites. Those will, of course, make their drug look great , but if you just look at the scientific facts, studies and prescribing information, you'll get the knowledge you need to make your decision.

Wish you the best of luck with a very tough decision!

[maximumlite]

I agree with Mrsbones, I just started Rebif a few weeks ago and minimal side effects but that is me. My neuro said to pick one that fit my life style and one I thought I could stick with.

What it really came down to was what my insurance would pay for, I got 2 choices than a few more if those did not work and was told what was not cover'd. I told my neuro what the choices were and we went over the 2 and picked Rebif.

I also notice more people will come here and tell all about the bad experiences with the meds are. How many people do you see that say I love my med. Good luck on picking your Med

[Alicious]

As the others have said, it really comes down to the best drug for you.

Since you asked about personal experiences, I will tell you that I am on Copaxone. I chose it because for me the lower incidence of worrisome side effects is lower than with Rebif, Avonex, or Betaseron, and that is worth more injections to me.

That being said, plenty of people have very mild side effects from the other meds, or even none at all, so some of it is a guessing game as to which will work best. Your own health issues beyond MS factor in, and sometimes the "right" med doesn't work. The best part? You can always choose another if your first choice doesn't work. Your choice isn't set in stone, although I know it is a huuuuuuuge decision!

Copaxone isn't utterly without side effects, of course. I was in the tiny group of people who got nauseated from it. It was mild and lasted about 6 weeks, but it was real. I also get the stupid site reactions, but they are worth it to me.

What you need to do is think through your own health issues, and weigh the importance of how often you inject and potential side effects with the meds to come up with the one that sounds the best for you to try first. They all have roughly the same efficacy, so it comes down to comfort level as much as anything else.

Good luck!

[Spydre]

As the others have said, your experience with a med will not the be the same as others. When I was on Avonex, a drug that many people say gives them slight trouble for a few hours after injection, I had a more severe reaction that affected my quality of life overall, and had to be switched. Copaxone was far easier for me, even though it was an every day injection, but I had no reactions, other than injection site reactions. There are people here that both Avonex and Copaxone have worked better than they have for me (maybe I'm just contrary?). But the copaxone worked better for than Avonex - but people have the opposite experience too. Every body reacts differently.

One thing, just because of my experience, if you have epilepsy already, that's another conversation with your doc over meds that you have to have. My neuro at the time discounted an avonex side effect of possible seizures, despite being treated for epilepsy. I've worked very hard at not taking ANY medications that lower the seizure threshold over the last 16 years.

[kikiblue]

copaxone

My neuro said copaxone was the way to go because I already have chronic sinus/allergy problems and he knew I didn't need any "flu like symptoms" to add to my long list of medical issues. It has worked well for me.

[Merridy]

Rebif user here...

I was dx'd in 2002and have been on Rebif ever since with minimal issues. I've had no major relapses in that time and just minimal lingering burning from the one that I had before going on it.

I also agree with MrsJones that you have to find what works for you. I chose Rebif over the others due to their efficacy, and given a choice between 7x a week or 3, I chose the latter.

That being said, I do feel like a pin cushion and have grown to hate the injections. Over my 9 years I've had roughly 1400 and I'm done.

I have recently been going through the labs for Gilenya and just recently got my appt booked for next Thurs to start my first dose. For me, it's my best option and if it doesn't work I will go back to rebif.

I would suggest calling the support programs for the crab's. They may be of help, you could just google drug name and support program. In the end make your choice and come back here for more info on your symptoms and seek help dealing with the emotional side of your diagnosis as well.

You didn't mention where you are from. Many cities have ms chapters that can link you up with a buddy to help you through the beginning.

Good luck

[Bob698]

Talk to your Dr. so you understand what these meds do (and what they don't) and the difference between treating MS and treating its side-effects.
The med that's right for you is the med that's effective at treating your MS that you can also tolerate. I think we're up to 6 main-stream meds now, any or all of them might be effective for your situation. You may (or may not) have some hassles while you build up tolerence and in most cases it can take six months or longer to know if a given med is working. Just stay patient and push the "I believe" button when needed.

[owlnona]

Welcome to "our world".
I've been on Rebif for almost 11yrs. It's worked well for me.
You were so blessed to find a good neuro. I've been very blessed also,we laugh that we are the only family who has a neuro on speed dial. I've been w/ mine after several bad starts. My late husband was w/ him also as he had Parkinson's. My DD has migrans & is w/ him also.
My neuro called my DD after my DH died & told her I was not living alone! She assured him I was w/ her & was staying. Well I do spend a few Mo.'s w/ my son & his family in D.C. every year. I fly there but don't tell my neuro
as he doesn't like me to fly.LOL!
Keep us posted, God Bless Nona Judy

[BigA]

Copaxone is the most MS-Specific and likely to do the least damage and have the least side effects. the only issue is possible skin problems. I would start with that.

But you can't go wrong with any of them. they all have their issues.

Note: Copaxone seems to get stronger with use.

[twisterred]

Welcome,

So sorry about the diagnosis.
Glad you can touch your nose with confidence again.

You might enjoy reading and maybe even sharing this site. It is perfect, IMO.
http://notdoneliving.net/openletter/id

Personally, I have had success with Copaxone. My body did not do well with the flu-like symptoms from Betaseron.

Copaxone isn't perfect. One trick is to not let the medication touch the skin. Benadryl Stop Itching gel has been a life saver for me.

It is wonderful to read that you have a doctor you like.

[mtnwillow]

I've been on Avonex about 2 months. The side effects after the first dose were so bad I almost did not take the second dose. Now the side effects are tolerable. I say this to let you know that when you choose a drug to commit to a 2-3 month trial before quitting. I'm anxious now to have a MRI to see if Avonex is helping.