medication or not?

[rrnichol]

Hello I'm just curious what kind of medication those with ms are taking? What some feel is best and why and for those that choose to go un medicated why they have decided that? I'm really not sure how to approach this and I've done a lot of researching on the internet but I'd prefer to get feedback from people first hand.

[rrnichol]

Thank you for sharing :)

[doet]

When I first started drug therapy, I was on Avonex.  I appreciated the fact that there was 1 injection/week, so that's the med I went with.  Over time, I discovered that I needed to be careful on injection days be make sure that everything was as optimal as possible:  that I liked my clothes, that I was eating food I really liked, that my meals were warm and that I wasn't trying to be careful about calorie consumption.  I still ended up on a very low dose of antidepressant.  Now I'm on Rebif which is the same med as Avonex, but stronger and is injected more often.  So far so good.

[rrnichol]

Thank you..that's is the same drug that I've been given information about considering from my neurologist. Thank you

[zerodegrees]

HI,
It will really be up to you and your body and your neuro which treatment is best for you, as the others have stated.

I have been on Tecfidera for 4 months now. It's a pill and I get occasional flushing as my only side effect.  

Good luck to you.

[rrnichol]

Thank you all...I appreciate the feed back.....I realize everyone is different as are their experiences so this was very helpful. Thanks again :)

[jujuminx]

I have been on Copaxone since 2010.  For me it was a no brainer.  It has virtually no side effects (if you are not allergic) other than site reactions from the injections and mine have been minimal especially since switching to the 3 times a week injections.

I haven't had a relapse since 2010 but my relapses had been years apart prior to that so I'm not sure if there is a relationship or not.  What the literature tells me is that when I do have a relapse my symptoms may be less than had I not been on it and the time between relapses may be lengthened b/c of the medication.

Everyone needs to do what they feel is right for them and although I know that medical science isn't perfect (far from it), I think these DMD's are a godsend to those of us who take advantage of them and use them as instructed.  That and a lot of luck!

Julie

[TLC_31]

I have used the Avonex prefilled syringe for almost 11 years, and the course of my disease has been very benign. Maybe it would be anyway and I could avoid these needles (I did quit self-injecting a couple of years ago), but I’m not going to take the chance.

Even if everybody that responds to this question tells you that Avonex is the best choice (and they haven’t), you would want to evaluate the other options. I tried Gilenya for a couple of weeks when it first came out, and its side effects were prohibitive for me (although it’s fine for many others). Know that every disease-modifying drug has side effects, the intensity of which will vary from person to person. Use only those drugs that you can adhere to the dosing regimen; otherwise they’re worthless to you. Know that you can always change drugs, although you should not do so cavalierly.

All of the DMDs are discussed from a neutral perspective at the link below. Ask questions here anytime!

http://www.nationalmssociety.org/Treating-MS/Medications

[cimini]

Hi,
I was "lucky" enough to be diagnosed just as the first medications were coming out, in the early 1990's and was lucky enough to get onto Avonex right when it came out. It made me feel like I had been hit by a truck every time I took it, but I kept on it for years, until rebif came out. Smaller needle, higher efficacy -yay, but I spent years longer feeling like hell with every dose. I have now been on Gilenya since it came out, about 5 years. NO SIDE EFFECTS-for me! I have been very, very fortunate and am still mobile, quite possibly because of these drugs. This is only my experience. I hear that you are just looking for people's opinions here, but you must do your research on these drugs and really look at how they will play into your own life.
Best to you,
cimini

[kwarendorf]

Just like MS itself, how you will or won't react to a given medication will be unique to you. This is try of both disease modifying drugs to combat MS itself and any meds you take to treat specific symptoms.

I am fortunate to be very tolerant of most meds. I take a combination of Lyrica and Elavil to address neuropathic foot pain. For DMD, I'm getting Rituxan. I started with Tysabri but it stopped working.

You and your doc will work to find the meds that work for you.

Kyle

[Lulu54]

You are asking the million dollar question - what works best and how and why.  We don't know the answers to any of this.  We do know that these drugs - 11 of them now approved in the US - give us the best odds to slow this disease.

They are working furiously to understand the biomarkers we have that will allow the clinicians to recommend the best drug for the individual - right now the choices tend to be according to patient and doctor preferences.  once we better understand, the drug choice can be tailored to the person.  For now, though, we start a drug and if it isn't right for us, we can move on to the next.  About 25  years ago, this was only a dream and now we have options!!

You are doing the smart thing, though and doing your research.  A lot of this choice should involve your preferences.  Injections are not so bad- you pretty much can get used to the shots if you remember they are keeping you healthier.  Pills have advantages and disadvantages - taking them once or twice daily is a hard routine for some of us to follow. Your medical history also plays into the choice - if you have depression then you should avoid the interferons.  If you have heart health concerns, then one of the orals might be wrong choice.

Keep doing your research but don't over think this - get on a therapy, stick with it and see if it is the right one for you.  If not, in a few months move on to the next one.

good luck with this process, Laura

[supermum_ms]

Hi, I honestly don't think you'll ever find guarantees with how/what your individual MS journey is going to be like but 'factually' speaking, in general research has proven the earlier a person starts taking a disease modifying drug (DMD) the lower their level of disability.

Whilst there isn't a cure yet, DMD's are the only thing known at this stage, to effect the course of the disease and reduce the number of relapses, with stem cell research projects still under way but looking very promising. DMD's are now actually recommended for clinical isolated syndrome (CIS), because studies have shown they can significantly make a difference in transitioning to MS.

I suppose anecdotally, you only need to look at the history of MS and see how much better off a person diagnosed today is in comparison, the expected out come today is chalk and cheese to what it was prior to the availability of the DMD's. It is a difficult and individual choice to make but with MS injectable's, unfortunately it can be harder to understand that most of the benefits is going to be in the future......

Food for thought.......JJ  

[rrnichol]

Thank you...I'm just so UN certain what approach to take and how effective the medication is. Is this a proven fact that these medications slow the progression I guess would be my next question. Thank you for replying...

[HVAC]

By the time they found my MS I had had it 46 years. I did copaxone for a year before my MS Specialist and I realized I had primary progressive and it was not progressing that much. I thought about it hard before going off medications.I realized if I did progress I would have to accept responsibilty. I was going to go on Tecfidera when it came out. By then I found I had late stage cancer. Oddly the chemotherapy works on MS so I am technically using chemotherapy for my MS.

If I had Relapsing Remitting I would have stayed on MS medication. I think it is important to slow progression.

Alex

[rrnichol]

Your so right..I'm just curious as to how others have decided what is best and their opinions.. thank you for sharing. :)

[immisceo]

Everyone has different priorities and reactions to different medications. I personally have only ever been on daclizumab-HYP, a drug study drug. I chose to medicate because this is a life-long disease. I need to actively stave off progression from day one. It's not going to wait around, even if I do.

I chose to be a part of a study for three reasons 1. It's a gamble that it works better than what's currently on the market 2. I relish the frequent contact I have with experts. This was very helpful in the early days, especially. 3. I feel immense gratitude towards the people who were in the early studies 20+ years ago, when there were precisely zero treatment options for MS. If they hadn't done it, none of us would have the opportunity to have drugs to choose from. Pay it forward.

Things to consider: Can I finance it? Can I take it religiously? Are the potential side-effects the ones I can theoretically deal with (compared to the others)?

[rrnichol]

Well I appreciate your feedback Paula. Thanks :)

[figuerpa]

I have been through several therapies. Started with Copaxone, went to Gilenya the Avonex, none of which were right for me. In talks now to start Plegridy to see if it works.

We are all different and our body's work differently with medications so it's hard to say what is best.

My sister has MS too and has been on Avonex for 12 years with awesome results. Me and my Neuro are working toward a therapy that is right for me.

Hopefully someone else can give you some input, as for me I am still up in the air as far as what will work.

Good luck!

Paula