Living with ms at 30

[Adriannamommy07]

We'll here goes my journey everyone. A year and half ago I went in to my physician because of weakness! fatigue, migraines, and at times numbness. She immediately wanted a MRI and all done. Within 2 days I was being called back and referred to a neurologist because they found lesions on my brain. Then my neurologist sent me for the spinal tap to confirm that yes indeed it is ms. He immediately started me on copaxone however after several relapses and iv solumedrol I am told it isn't working. I am now in a major flare up and have had 10 days of iv solumedrol however the severe spasms are continuing. I take baclophen 3 times a day however that does not help and now I'm coming down from all the solumedrol in me so that is very hard. I am looking for support and input. They want me to try aubagio however I am very scared of it. How do y'all treat the severe spasticity? It is unbearable in my back and my legs.

[heliotrope]

Baclofen doses can be much higher. It might be worth another conversation with your doc.

[Kimba22]

Hi Adriannamommy,

Sorry to hear of your increase in spasticity. I do hope it calms down for you. It would be a good idea to contact your neurologist about increasing your Baclofen dosage (as heliotrope suggested) and/or possibly adding/ switching to another medication (like Tizanidine) to help with it. Some people do better on a different med or need a combination of anti-spasticity meds for effective relief. Stretching and physical therapy also helps.

There's also an intrathecal Baclofen pump (something I have) that delivers a liquid form of Baclofen directly into the spinal fluid. It's an option for those with severe spasticity that cannot be controlled with oral medications or when someone just can't tolerate the side effects from them. (It does require a surgery, though, and commitment for regular refills of the medication in the pump). Here's a link to the NMSS that explains spasticity and how it's treated:
http://www.nationalmssociety.org/abo...ity/index.aspx

Besides Aubagio, there are several other DMTs (Disease Modifying Therapies). Every one of them can have side effects, but that doesn't mean you will get them. You may prefer an older drug, like Betaseron, Avonex, or Rebif in which side effects are better known & documented. You can post a question about Aubagio in the medications forum and will get more responses there from those who are on it. Also, here's a link to the NMSS and a thread to help you learn about the various DMTs:
http://www.nationalmssociety.org/abo...nts/index.aspx

http://www.msworld.org/forum/showthread.php?t=129748

Good luck to you in recovering from your flare, the IV Steroids, and, of course, choosing your next DMT. It is overwheming and a bit scary trying a new one. Please keep us informed on how you are doing.

[Mable]

Is your neurologist an MS specialist? If not, you might find one. If it were me, I'd be asking for something stronger than Aubagio at this point.

[Adriannamommy07]

My doctor is a regular neuro as I have been unable to find a ms specialist. What would be a stronger treatment option? As I have done the copaxone with no help. Any information is helpful as I am lost and these spasms are horrible. Thank you

[Kimba22]

Hi Adriannamommy,

If you haven't already done so, you can contact the National MS Society to find an MS Specialist @ 1-800-344-4867. http://www.nationalmssociety.org/contactus.aspx

Baclofen & Zanaflex (Tizanidine) are the most common drugs used to treat spasticity. You should call your neuro and let him/ her know about your increased spasticity so he/ she can prescribe either a higher dose of Baclofen or add/ change drugs for you. Others include Valium (Diazapam), Dantrium (Dantrolene), & Botox injections. Sometimes, Klonopin (Clonazepam) is also used. Pain from spasticity can be reduced by Neurontin (Gabapentin).

Here is some information about current FDA DMTs (Disease Modifying Therapies). They are:

Aubagio (teriflunomide)
Avonex (interferon beta-1a)
Betaseron (interferon beta-1b)
Copaxone (glatiramer acetate)
Extavia (interferon beta-1b)
Gilenya (fingolimod)
Novantrone (mitoxantrone)
Rebif (interferon beta-1a)
Tecfidera (dimethyl fumarate)
Tysabri (natalizumab)

Each DMT has its own efficacy in terms of effectiveness for preventing new lesions and stopping or preventing new exacerbations from happening. For some people, a drug with 30% efficacy serves them well, although others do much better with one of a higher efficacy. As the efficacy increases, though, so does the potential for serious side effects.

The CRAB (Copaxone, Rebif, Avonex, Betaseron/Extavia) drugs & Aubagio have a 30% efficacy in decreasing new exacerbations and preventing new lesions.

Tecfidera & Gilenya have a 50% efficacy in decreasing new exacerbations and preventing new lesions.

Tysabri has an 80% efficacy in decreasing new exacerbations and preventing new lesions.

Novantrone is reserved for worsening RRMS/ Secondary Progressive MS

You can learn more about each drug from the NMSS: http://www.nationalmssociety.org/abo...nts/index.aspx
http://www.nationalmssociety.org/mul...nts/index.aspx

The good news is that there are now more treatment options, but it can also be overwhelming trying to decide which one to try next. Do as much research as you can about each drug before you decide, and discuss your options with your neurologist. I hope this info has been helpful and you can find a MS Specialist in your area.

Best wishes,

[Mable]

What Kimba said is right on.

Keep this in mind too: When you look at a drug that's 30%, 50%, or 80% effective, it doesn't mean that YOU get 30%, 50%, or 80% fewer lesions and attacks. It means that if you take a big pool of MSers on that drug and compare them to a big pool of MSers on nothing, you see 30, 50, or 80% fewer lesions and attacks in the treated group.

So, as a "responder" to Copaxone, I so far have no new lesions or attacks. You, as a "nonresponder" to Copaxone get plenty of disease activity. It averages out to 30%. See what I mean?

That's important, because as more drugs are available, MS specialists are aiming for NO new disease activity in all of us. And they're achieving it in more people than they used to. They just have to find the drug you'll respond to.

Unfortunately, none of the DMTs will necessarily help your spasticity. They just stop awful new things from happening. Yay MS.

[Thinkimjob]

Oooh, dunno 'bout that, Mable.

I have taken DMTs since the days when they were DMDs. Beta, Copaxone, and now Aubagio. I think maybe the one-third better claim they made about B and C was about right.

When I was diagnosed 16 years ago, I was told ten years before things went pear-shaped. I got 13.

It was worth it, but only in retrospect.