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Quick Question
Do I need a neurologist to get Evrysdi? Or I guess a better question would be: HOW do I get Evrysdi?
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13 Replies
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Tbh I’m not certain about needing a neurologist to prescribe. Mine is and I’m thinking it would be easier to get it covered when a neurologist does it. I guess I would start by talking to your primary physician. They should be able to let you know if they can or if they need to refer you to a neurologist. Neurology is usually booked out a ways so I’d get after it as quickly as possible. It’s not a bad idea to get some baseline tests as well like pulmonary function tests and a physical therapy assessment. I don’t think it’s a requirement anymore but is interesting to track progress.
Maybe more voices will chime in with words of wisdom on this topic.
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Thank you!
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I was under the impression that you need a neurologist specializing in neuromuscular disability to get Evrysdi. If you’re not already working with an SMA Clinic, reach out to your primary for a referral. They could also help you with other support like PT and a social worker.
Be patient, there are a series of hoops to navigate like genetic testing, PT & OT evaluations before you get approved. You have to go step by step for ¥%#* insurance
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I’m with Susan. You will absolutely need a neurologist to get this. A PCP cannot prescribe either of our current treatment options. You will need a clinical confirmation of your diagnosis. You will need to have a PT assessment to report your current Hammersmith and RULM scores. Neither test is something any PT can administer and likely isn’t even familiar enough to adequately or accurately assess your situation and condition. These can also be coordinated through the neurologist office. And finally, since you specifically mentioned Evrysdi, you can visit their website for additional information at either evrysdi.com or Genentech.com.
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Check out Mr. Erudite. That was a much more precise answer to the question. I was surprised that the genetic testing could confirm with such specificity. I think they’re moving away from the names like Kugelberg-Welander to a description that genetically defines what’s actually there.
Fun fact: Listening to my Cuban grandmother explain my disability as a child, well, every time she got to the name Kugelberg-Welander it left us both giggling. That’s one way to get the sting out.
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Wait. You have to have genetic testing even if you already know you have SMA?
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A lot of it depends on how and when you were diagnosed and how well it was documented. Like Dennis my diagnosis was so long ago the info wasn’t complete enough for insurance. It’s pretty simple as it’s just a blood test and they’ll let you know at the clinic if it’s even necessary.
It can be an overwhelming process but I just kept at it and eventually all the pieces came together.
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Yes, you still need the genetic testing to qualify. My guess is that when you were diagnosed the doctor did this testing.
The purpose is two fold. Firstly, to “prove” the diagnosis is correct, and secondly to check the number of copies of survival motor neurons SMN2 you have. The more SMN2 copies you have the less severely you are effected. (Generally, individual results may vary).
Why back when I was tested and diagnosed (1975), the doctors did muscle biopsies. I did not follow the expected pattern, so I had the have it done twice. Then later I had the genetic test done as well.
Hang in there and see if you can find an SMA or even a Muscular Dystrophy clinic near you. It is important.
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“just a simple blood test”? I don’t know about y’all but I am a VERY hard stick. Like when I came back to the nursing home after being in the hospital for a week, one of the CNAs looked at my arms and said, “Oh my god! What did they do to you?!” cuz I had so many bruises from them trying to stick me.
But I do really need to get on Evrysdi… SMA has progressed to the point where I am currently bed bound. I’m lucky I can use my Alexa to type – IF I’m positioned just right. 😥😥
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Yeah, you need genetic testing if you haven’t had it already. When I was diagnosed a lifetime ago, they would do a muscle biopsy. Some require a blood test, I just had to do a cheek swab.
I’m a terrible stick, too, but that’s more from old PTSD. If you’re able to be more hydrated, that helps, but fear really does make your veins harder to get. I think it’s a body’s survival instinct, protect major arteries from perceived attack.
Evrysdi isn’t a magic bullet that’s gonna fix everything. I was able to regain a little bit of strength until I got Covid. Since then, it’s pretty stable: no big strides one way or the other so I’ll take it.
The first step is getting connected to your SMA (or MDA) clinic. That will give you access to a lot of resources and support from people who have experience with SMA. They can start the process of applying for meds and figuring out which one is best for you.
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That is another thing: we don’t have a clinic near us
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In the post-Covid era, your distance from a clinic shouldn’t be insurmountable. Contact the clinic closest to you and ask how to proceed. It’s also not on you to organize all of this. This is why we’re telling you to reach out to the SMA or MDA clinic nearest you. They’re already set up.
DNA testing is mandatory. It’s a cheek swab.
OT & PT eval is just about finding someone certified in your area.
If you have trouble finding a clinic, then, like Mike suggested, reach out to Accredo (subsidiary of Genentech) to see what’s the best path for you.
This is a find a treatment center link
https://www.curesma.org/find-a-treatment-center/
curesma.org
Find a Treatment Center - Cure SMA
Make today a breakthrough. Our online location finder is designed to help individuals with spinal muscular atrophy (SMA) locate treatment and medical care in your area. About the Location Finder Sites and providers shown on this map offer care and … Continue reading
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