Decisions Decisions

Talking about medication for ms is always frustrating for me for several reasons.  One being, there is only one approved medication for progressive multiple sclerosis.  This medication was said to be “THE” drug for progressive ms when it first came out over a year ago.  Naturally, everyone’s hopes were high.  When I asked my MS Neurologist about some of the seemingly miraculous results, he said two words:  placebo effect.

I’m not doubting that it has helped people if it has.  As my neurologist says, “that placebo effect is real”.  Coming from someone whose expertise is ms and ms trials, I believe him. I also believe in the placebo effect.

SLOW DOWN progression:  that’s what it’s used for in progressive ms. It doesn’t repair what has already happened.

I hope there are more drugs for progressive ms coming soon.

The ugly stepchild of ms.

The least profitable ms….only 15% of us.  

Secondary progressive multiple sclerosis has two new drugs on the market this year, last month in fact.

The second frustrating reason is cost.  At over $65,000.00 a treatment (every six months indefinitely) it’s costly.  If you have one insurance with a 20% co-pay, that’s a lot of money for a treatment that may or may not work, possibly reduce t2 lesion load by 3% (company #) and possibly slow progression by 24%. (company numbers). Well, I admit 24% slowing down sounds real good to me.  Also, if you have government insurance such as Medicare, (rx part d) you cannot receive help with co-pays aka copay assistance I’ve been told.  None of the big ms organizations provide Rx assistance.

MS is an expensive disease.  

These treatments are not to be taken lightly either with very severe adverse/allergic reactions (anaphylaxis) occurring (during six to eight hour infusions), compromised immune systems, increased risk of potential malignancies, compromised blood counts, compromised organs, and more.  

Another option for me personally would be taking a relapse remitting ms drug, only treating the relapsing part of my progressive relapsing ms.  One of the potential “reactions” is PML (progressive multifocal leukoencephalopathy), a (rare but happens) fatal brain infection among others.  Monitoring my blood counts would prevent this I’m told.

My God, how did I go from deciding what dog to walk to this, I often think.  

Is multiple sclerosis that bad that we take all of these risks to fight it?


*I am not a Doctor or medical professional.  I am just sharing what I’m learning along this journey.


6 thoughts on “Decisions Decisions

  1. Positively Alyssa Reply

    This was a wonderful post with SO much truth! Medications for MS are very frustrating and expensive. Drug companies really do make a lot of money and do not care how much of a struggle it is for us normal people. I am looking forward to reading more of what you share. I hope if you have the time you will check out my site. I do my best to share how I deal with the struggles of MS, but try to be positive!

    • Pug You MS Post authorReply

      Thank you Alyssa. I have checked out your site and love it! I didn’t see a “subscribe”??? Please let me know! Sorry for the delay in replying.

      • Positively Alyssa

        You are welcome! I honestly don’t think I have a subscribe, there is just a follow. If I am not mistaken, once you are on my site, you can click follow. If this doesn’t work, please let me know and I will do what I can to help! No worries about the delay, I am behind often!

      • Positively Alyssa

        Great!! Please let me know if there is anything I can do to help! I do hope you will enjoy what I share. Considering I work Monday-Friday, I am limited to doing the best posts on the weekends! I look forward to learning more about you and hope I am somewhat helpful!

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