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Thursday April 06 2017 11:00 AM

‘This week Helen Farrell examines how the years of living with MS have made an impact on her hopes for the future’

This week a brand new MS medication, Ocrevus (ocrelizumab), was approved by the Federal Drugs Authority (FDA)in the United States for both primary progressive (PPMS) and relapsing (RRMS) forms of MS. It has major effects on both progression and relapses and described as a “real game changer” by the CEO of the US MS Society. Up until now, people with PPMS have been empty-handed in their fight against the progression of their type of MS. It will take a few months at least to be licensed in the EU and Ireland but where the FDA goes, inevitably the EU will follow, and it will follow fast. Simply put, in the face of MS it costs the healthcare system too much to allow progression to run rampant. 

MS has a way of making you focus inwardly on your body and mind in quite a negative way. When you combine dealing with pains and aches, limitations and often crushing fatigue, adaptations and medications, with a future that includes a progressive illness, it can drain your reserves of hope at times. When we feel helpless in the face of something, hope can struggle. 

Friends and family probably sent you articles about Ocrevus during the week, eager to pass on little nuggets of hope to us MS’ers. People like to share hope and optimism and sometimes hopefulness is a difficult thing to hear when we might not feel so hopeful about our future. When I was diagnosed 19 years ago I kept hearing “in 10 years there will be a cure the way things are going”. Ten years came and went and that damned cure is still as elusive as ever, but we certainly have slightly more effective medications available to us now. 

19-year post-disagnosis was another major deadline in my subconscious, although I hardly acknowledged it until I wrote the first draft of this blog last week. In 1998 the neurologist told me that normally 10-15 years after diagnosis most people moved to the progressive form and got worse, so I was sure that 19 years in I would be in a very bad way. After I submitted the draft I felt it wasn’t quite right and it took a week to work out just what was wrong with it. I realised with a shock that I have never  properly allowed myself to hope for the future since I was diagnosed back in 1998. Certainly I have made plenty of plans and set myself challenges and achieved most of them; I went back to college for a post-grad qualification, got married to a wonderful man, had a son, learned music for the first time, appeared on national television despite being extremely self-conscious, learned how to crochet, gave lectures. It wasn’t that I avoided planning but when I examined how I felt about hope for the future, I realised that I never, ever expected to reach 19 years post-diagnosis in this shape; walking, working part-time, having “no evidence of disease activity” on my MRI’s – the very best you can hope for with 19 years of MS under my belt. I’m not saying I’m grand and I know that I can’t write for everyone’s experience. Many years of relapses have left plenty of damage and symptoms but I’m so much better than I thought I would be at this point of my life.

It has been a strange week. Hearing about Ocrevus being approved is momentous enough for most of us with MS and better medications are on their way, bringing a bit of hope to many of us. Suddenly realising that I can maybe allow some longer-term hope creep back into my life feels like I’ve turned some kind of corner in my life. That is about as good as you get with MS and I’m seizing it eagerly with both hands. 

National Multiple Sclerosis Society. 2017. FDA Approves Ocrevus™ (ocrelizumab) for People with Primary Progressive MS or Relapsing MS -- First Disease-Modifying Therapy for Primary Progressive MS. [ONLINE] Available at: http://www.nationalmssociety.org/About-the-Society/News/FDA-Approves-Ocrevus. [Accessed 2 April 2017].

Author: Helen Farrell

Tags: ocrevus, ocrelizumab, primaryprogressivems, ppms, medication, hope

Comments

Declan

Thursday April 06 2017 15:05

Great read Helen. Here's hoping that Ocrevus will be as good as hope it will be

Joan

Thursday April 06 2017 15:43

To seizing the hope Helen Farrell!

Helene

Thursday April 06 2017 17:17

Your post has been uplifting.I was only diagnosed in February 2017...and you are right,friends posted me about this new drug to raise my hopes.
My constant tiredness was finally explained, mistakes in work, mood swings.All explained but unfortunately not the way I wanted. But its up to me now...I can let it beat me or carry on.

Mark

Friday April 07 2017 20:49

Helen,

Superbly written from a fellow PPMS er.

Mark

Catherine

Sunday April 16 2017 16:37

I too was diagnosed 20 years ago I haven't been on any disease modifying medication for the past 15 years although the disease has taken its toll on me. I hope this new drug will be of some use.

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