What Mischa said. Hope you are successful in getting tested and any family members who want to be. My husband was tested at no cost through Biogen.

Hello Nomad,

Everyone’s disease process is different. My husband, who had an aggressive form of ALS (18 months from first symptom til death) was advised not to do any strenuous work out. Possibly get an opinion from your neurologist. Some good feedback already here from others.

We were told that since everyone’s progression is individual, it’s nearly impossible to tell if any of the meds help. My husband had an aggressive type. He passed away 18 months after his first symptom. He did the 3 R’s. It took 9 months for him to be diagnosed. We will never know if he had been able to start sooner, if it would’ve made a difference.

My husband had an AVAP and was on Hospice. It was never an issue. He had Medicare and a supplement. It might be your insurance.

My husband heard from the doctor today, she wanted to know if he still wants to try QAlsody. She was not very encouraging, saying there is no actual evidence that it is a benefit and that more studies are needed. My husband said yes, he still wants to try it. She is talking about starting the loading doses on Sept 21. She will let us know…

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Henry, it depends on your insurance and if you qualify for a subsidy.  My husband has Medicare D prescription insurance.  He also qualified for the Healthwell grant of $15,000 to cover the co-pays ($600-$1000 per month) for Radicava and Relyvrio.  Rilutek is a $4 co-pay.

Regarding which treatment is working, as far as I can tell there is no way to know because each persons progression is different.  That’s why every person who is taking any or all should be tracked.

My husband had his first symptom, leg weakness, in July 2022.  He was diagnosed March 3, 2023.  By then he was unable to walk and using a wheelchair.  He started Riluzole in April 2023, added Radicava about 2 weeks later and then Relyvrio.  He had no side effects from any of the meds.  At the end of May, genetic testing showed that he had… Read more

Hi Amanda,

I am having the worst time navigating the discussion thread.  I see your posts and share them with my husband.  Thanks !!!  Sandy

Tofersen/Qalsody.  My husband is SOD1.  He cannot participate in clinical trials because of recurrence of prostate cancer.

My husband started Rilutek in April, added Radicava and then Relyvrio.  He is in the process now of trying to qualify for Qalsody.  His Medicare D has covered most of the hideous expense.  We qualified for a Healthwell grant for the co-pays.  After studying results, he decided to stop taking Relyvrio.

The doctors office did all the… Read more

Amanda,

He doesn’t like the idea of the spinal injection.  Does want to try it though and is in process of getting insurance override and approval.

Sandy

Other than this thread, is there a Zoom support group for SOD1 pALS and caregivers?  My husband is positive for SOD1.  He is the only person in his family as far as we know.  His sons are reluctant to get tested.  We all need more information.

Please start a blog!  My husband is SOD1 and debating about taking Qalsody.