Friday, 8 September 2017

#ClinicSpeak #SelfMonitoring: a picture is worth a thousand words

Could you use your golf handicap to monitor the impact of MS on your life? #ClinicSpeak #SelfMonitoring

Summary: One person's story of using his golf handicap to monitor the impact of MS on his physical functioning. 

In clinic yesterday one of my patients who had rapidly evolving severe MS sent me the picture below. I added his DMTs. He said it was his way of self-monitoring the impact of MS on his physical functioning. For the uninitiated, it represents his golf handicap over time. His best handicap in golf was two, which he achieved when he was younger and playing competitively.   

Does any one want write the narrative to go along with the picture? One clue you need is that he was JCV seropositive, with a high titre, on natalizumab, which is why we decided to switch his treatment. 



Please note that this person gave me permission to publish this picture on the blog. 

CoI: multiple

20 comments:

  1. Is the one of your patients bridging on fingolimod?

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    1. Yes and no. When we switched him to fingolimod we did not have alemtuzumab available as a treatment. But we did so knowing that other treatment option were on the cards.

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  2. Did he have a relapse on fingolimod, or was this just gradual worsening? How did he feel on fingolimod?

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    1. He had a relapse on fingolimod and if I recall correctly MRI activity. He felt awful on fingolimod, brain fog and fatigue. Inflammation in the brain is not good for you; it results in sickness behaviour due to the cytokines that are released from inflammation.

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  3. Replies
    1. Not sure about that. When he was on fingolimod he was still able to get around a golf course with a reasonable handicap. He just didn't feel that well. I have other patients who do very well on fingolimod and are NEDA. It is horses for courses. Because this patient did not do that well on fingolimod does not mean other patients won't do well.

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    2. It certainly appears like it gave him the quality of life he was experiencing on natalizumab back

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  4. Fingolimod would appear to be not very effective. The graph might suggest that a patient with active RRMS goes straight on Alemtuzumab.

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    1. Going straight onto alemtuzumab is one option now available on the NHS if you have active relapsing MS. Unfortunately, natalizumab is only an option if you have rapidly evolving severe MS.

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    2. But if you are JC positive and have rapidly evolving serve MS what DMT would be suggested?

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  5. Did this patient have rebound activity? In addition, how high was his antibody index? Can you give us more details please.

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    1. Yes, he had a relapse on fingolimod. He had been NEDA on natalizumab.

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    2. His anti-JCV antibody index was higher than 2.0 and was rising. The latter would indicate that the virus was active and boosting the antibody response.

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  6. I have asked this patient to answer some of these questions himself using a pseudonym. He may, or may not, accept the invitation.

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  7. This is quite amazing and supports your 'hit hard and early' approach. Why would anyone want a lower efficacy DMT when they can have a high efficacy drug?

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    1. Can I suggest not using the adjective 'hard'; it brings up thoughts of demons in peoples heads. The concept early effective treatment to a target is the lighter version of the same thing. You can get their in many ways and not only be flipping the pyramid.

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  8. Thanks for sharing this. I really like seeing real world experiences shared on this blog. Please keep them coming.

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  9. One patient one story
    Anecdotal evidence

    Is evidence from anecdotes, i.e., evidence collected in a casual or informal manner and relying heavily or entirely on personal testimony...

    https://en.wikipedia.org/wiki/Anecdotal_evidence

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  10. Wow! Talk about a visual explanation of different strokes for different folks. Or in this case, different DMTs works differently for each of us. The visual of this person's experience is stunning. It also illustrates how PROs are a necessary part of treatment - how a person responds to a treatment isn't always reflected on a neuro exam. Thank you for sharing.

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  11. And I want to add I just shared this with my husband and even though he doesn't have MS, he would like this drug if it would improve his handicap this dramatically.

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