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  1. M

    Radicava Coverage

    Premera approved my husband’s prescriptions for Radicava ORS and Relyvrio for either 6 months or a year (I can’t remember right now and I don’t have the letter nearby). He’s stopped the relyvrio due to the trial failure, but is still taking the Radicava. We get it through Accredo. Oh whoops -...
  2. M

    Relyvrio fails phase 3

    My husband has been on Relyvrio since it hit the market and he’s been in a continual decline (I guess ALS always is, but he was diagnosed 18 months ago and it seems to be relatively fast). We spoke to his neurologist and he said they were disappointed with the results and it’s reasonable to...
  3. M

    Dutasteride and ALS

    Smjacobssmd - thank you for the info! We confirmed with my husband’s neurologist and PCP and they see no harm in trying this out. The only issue is that he can’t swallow any medication and it’s a capsule so I put gloves on and was trying to squeeze the liquid out so I could put it in his...
  4. M

    Dutasteride and ALS

    Good luck Vivienne and please update. My husband has had no plateau this whole time of 18 months since diagnosis (in my opinion). He’s on all 3 R’s and is bulbar. I’m still considering trying to get him the dustaeride to try. I feel like we don’t have anything to lose …
  5. M

    Dutasteride and ALS

    Ugh, it can’t be crushed? If it has to be swallowed whole then it’s crossed off the list right now …
  6. M

    Dutasteride and ALS

    Thank you for sharing this! I am going to reach out to my husband’s neurologist and/or primary care provider and ask for this medication.
  7. M

    What to expect with son’s ALS

    I am so sorry to hear of the diagnosis. My husband was diagnosed at age 40 (august 2022) and we’re nearing 18 months after diagnosis. He was initially diagnosed as limb onset, but quickly progressed to bulbar. He might be fast progressing, but at this point his speech is almost totally...
  8. M

    ALS

    After mulling it over and talking with a friend who works in public health, we did file an adverse vaccine report for my husband (for the COVID vaccines and his ALS diagnosis). I know it might not be connected, but I also felt that I wanted to report it and people can research or see if there...
  9. M

    Diarrhea and constipation issues with ensure /kates farm

    Update - I just measured and the amount that I’m adding to each Liquid Hope pouch is 2/3 cups of liquid to thin it enough so it won’t clog the 18 French mic-key size. I open the pouch, add liquid, and stir it thoroughly with a spoon. My PALS isn’t drinking much by mouth so I’m not worried...
  10. M

    Diarrhea and constipation issues with ensure /kates farm

    Hi Lisa, Yes the same thing happened to us because when my husband had a dangler tube it was wider and accommodated the liquid hope easier. He got the mic-key put in last month and his says “18 French” for the size, I almost wonder if I should have requested the widest tubing width but I don’t...
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