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Will you be trying apitegromab?
With apitegromab creating buzz in the SMA community lately, it’s doubtless that we’ve all entertained thoughts about it. While it is still waiting for FDA-approval, doctors may offer it to patients as an option, and we’ll have to make a decision.
I wondered: how many of us are keen to receive it? And what are the reasons that we might or might not? Does anyone have reservations?
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1 Reply
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Yes!!
Obviously, insurance issues may be presented, but I will try my best to try this treatment that supplements Evrysdi and Spinraza. As mentioned in the aging tips and tricks response, the areas with the most concentration of viable motor neurons are the areas least affected by SMA. In those areas, apitegromab will remove the limitations by the myostatin our bodies produce, allowing more muscle to be built there. This means that the areas less affected can build muscle better than areas more severely affected. That still will quite possibly allow better compensation in body mechanics if we are able to strengthen these areas. As mentioned in other comments I’ve made, motor neuron regeneration or creation will be the ultimate game changer for SMA folks.
So, we have Zolgensma, Ivitsma, Evrysdi, Spinraza (regular and newly approved higher dosing) treatment options. Ivitsma will not work for anyone who has the antibodies in their system. It’s the same reason why some patients treated with Zolgensma now require maintenance dosing with Evrysdi or Spinraza. In other words, since it is a one-time AAV dose, if the body develops antibodies, it compromises the effectiveness of the treatment. Patients wanting Itvisma will be required to be tested for the presence of these antibodies and disqualified from this treatment option of they are found as the drug will not work. At 63 years old, and symptomatic for almost 50 years, I’m also not likely a great candidate for Itvisma and its $2.7M price. And since Itvisma does NOT repair areas damaged previously by SMA (none of the treatment options do), its effectiveness would better serve those younger than me and with fewer years of muscle weakness progression caused by SMA. So, for me, a combination of Evrysdi or Spinraza along with apitegromab are appealing. If and when scientific research solves the motor neuron issue, we will all be benefited, so I want to be in the best possible position to take advantage of any new treatments that come our way in the future. This is my decision and approach, but as always, YAMMV.
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