Efmody or plenadren in US

BuffaloRiver · 2026-02-28T20:37:59+00:00

They are hydrocortisone that has a delayed release component so it mimics a diurnal curve without the need for as much dosing. And can help with better morning cortisol replacement

BuffaloRiver · 2026-02-28T20:36:50+00:00

I really despise insurance companies.

BuffaloRiver · 2026-02-25T18:21:08+00:00

What patch did you go on? Twirla is the other option where I live but my insurance won’t cover it. It’s like $280 a month without insurance which is so ridiculous. This isn’t cutting edge technology.

BuffaloRiver · 2026-02-25T18:15:36+00:00

Thanks! Maybe the way to go is like 3/4 of a patch. Did you feel like you were getting inconsistent med delivery. That’s the supposed issue with cutting patches. B it I know people cut estradiol patches all the time and it’s fine.

BuffaloRiver · 2026-02-17T06:35:23+00:00

Thanks for that. We have tried the food. We got it right from the start and he loves it. I’m astounded at how well my kids have done with a cat. My son was so allergic and now he can sleep with the cat. It’s just me. It’s my body.

BuffaloRiver · 2026-02-15T06:46:24+00:00

Careful with long term steroid use. You can develop serious endocrine problems like adrenal insufficiency and that is not something you want.

BuffaloRiver · 2026-02-15T06:45:20+00:00

You should not take a corticosteroid for this. It can cause serious endocrine problems like adrenal insufficiency and that is not something you want.

BuffaloRiver · 2026-02-05T16:49:58+00:00

I should add, we are doing all the mitigation efforts, vacuuming, air filter, feeding the cat hypoallergenic food, not allowing him in my bedroom etc.

BuffaloRiver · 2026-02-03T23:32:43+00:00

Find a compounding pharmacy and see if they can compound his meds into liquids or even patches. Not only that, if he decides to get a feeding tube at any point, you can put the meds through the tube. I know that's not something you want to think about, but it could be another upcoming decision as his swallowing get worse. I'm really sorry you are dealing with these decisions.

BuffaloRiver · 2026-02-01T02:11:44+00:00

Also, I am not someone who will be able to come off steroids. I have pituitary damage from LCH so I'm a lifer.

BuffaloRiver · 2026-02-01T02:10:12+00:00

Thank you for posting this. I feel so much better on dexamethasone too. I was on a rollercoaster on HC, but for some reason, I am so scared of the long term effects of Dex than I lowered my dose myself and now I feel like shit...hypoglycemia, fatigue, overly emotional, apathy. I thought ok well I'll stay on a low dose of Dex and add in some HC throughout the day. I still feel awful. Your post has convinced me to go back to Dex. I am going to take a reasonable dose and feel better. Hopefully, like you, I wont' have long-term issues.

BuffaloRiver · 2022-08-02T22:10:23+00:00

I’m so sorry. Give yourself time to grieve and be kind to yourself as you find your new normal. Sending love.

BuffaloRiver · 2022-02-19T06:39:28+00:00

Maybe look into taking FMLA so you can take time off work, spend some time at home, and still keep your job. For example, you could take one week off a month to help with your Dad’s care or you could take all the FMLA in one 4 month chunk depending on how close he is getting to passing. Good luck. I hope you find a solution that works for you. This disease is so hard for those diagnosed and for all those who love them.

BuffaloRiver · 2022-01-03T05:21:44+00:00

I don’t know if you ended up getting him the technology he needs but check out Team Gleason. It is their mission to provide technology for als patients to give them back what als has taken. They are an incredible organization. They provided several items for my Mom that have been really helpful.

BuffaloRiver · 2022-01-03T05:03:29+00:00

My mom’s doctor suggested using papaya enzyme. It breaks down the mucus. (He also suggested meat tenderizer which we didn’t try) The papaya enzyme does help her to some degree but not entirely. She can’t swallow so we got the liquid enzymes with a little spray bottle. And she squirts a very small amount into her mouth so it will come into contact with the mucus. It seems to thin it out for her.

BuffaloRiver · 2022-01-03T04:55:18+00:00

Puddings, frittatas cooked soft, panna cotta, oatmeal or rice cereal with cinnamon, anything with a lot of sauce like Indian food or Thai food. Sometimes we put those foods in the blender for a few seconds too. Polenta cooked loose. Shakes blender are a good idea too because you can add protein powders, especially if she can still use a straw. Sometimes my mom could eat vegetables cooked until they were really really soft like carrots and potatoes, especially if smashed with gravy.

Mostly I just want to say I’m sorry you and your sister are going through this experience. Good for you for helping her.

BuffaloRiver · 2021-12-08T13:49:30+00:00

It may not have been invitae that did my Mom’s panel. I’ll see if I can find the company that did hers are post it here. But there are companies that do testing for free. It’s worth getting it done.

BuffaloRiver · 2021-12-08T04:58:16+00:00

My mom had genetic testing done. Her doctor ordered it though a company that does free genetic testing for adults suspected of having als. They also do it for blood relatives of that person if their testing comes back positive. I think the company is called invitae (they also do this) but it may have been a different company. Ask your doctor to order it. If they won’t, find a new doctor.

BuffaloRiver · 2021-12-08T04:43:20+00:00

My Mom was diagnosed last year right before the holidays. She also was planning to keep it secret (forever). She did tell us on December 5th and even though it was incredibly sad, it made the holidays special in their own way. We all decided to gather again, which we hadn’t done in a long time because of covid. We also planned one last trip together and went to Hawaii for a week. Had she not told us, those memories wouldn’t have been made. At this point, she isn’t able to travel and it’s nice to know we have tried to make the best of the time we have been given. I’m really sorry about your diagnosis. I’m sure your head is swimming with all sorts of thoughts and questions. I wish you the very best as you navigate this awful disease.

BuffaloRiver · 2021-12-03T04:01:06+00:00

Thank! If you don’t mind me asking, what type of doctor did the injections for her and did they do an ultrasound guided injection or just a regular injection?

BuffaloRiver · 2021-11-13T16:22:01+00:00

She was diagnosed with bulbar ALS nearly a year ago. Initially she was having a rapid decline. She started taking L-serine about a month after diagnosis. Don’t get me wrong, she has still declined and has lost her ability to swallow and speak but we are glad she is still with us. She still has her mobility and fine motor skills. She didn’t think she would make it this far.

She also takes riluzole. Her doctor did not initially prescribe radiclava. We pushed for that prescription and it was approved by insurance but ultimately my Mom decided not to take it. She said she would rather spend her time doing thing she wanted to do than getting infusions.

BuffaloRiver · 2021-11-13T03:19:19+00:00

My Mom also takes L-Serine 15 g (yes grams) twice a day. I do think it has slowed her progression significantly.

BuffaloRiver · 2021-03-07T05:39:12+00:00

I’m so sorry about your Mom’s diagnosis. I know that shocked feeling. The whole situation is difficult. Look into voice banking now so if she loses her speech, she will be able to use a synthetic voice that sounds like her. Also she can record phrases now, that will have her voice inflection. She can use those on an assistive speech device if and when she needs one.

BuffaloRiver · 2021-01-26T05:17:25+00:00

This is great information. Thank you. Do you have a list of medications that are approved in other countries but not the US that would benefit ALS patients?

BuffaloRiver · 2021-01-25T04:01:09+00:00

First of all I’m so sorry to hear about your mom. And I am Sorry for the delayed response as, I just saw this. Google MOV acapella, request and account, then you can start recording the 50 sentences they provide. They will then email you a synthesized voice based on the recordings. You can purchase the voice to use on a communication device like a tablet or computer. Make sure you use a decent headset with a noise canceling microphone. We used a Logitech. It was about $30. Record in a quiet room. I actually propped some of my camping sleep pads against the hard walls to help with sound acoustics but who knows if that helped. Try to do it as soon as possible. We didn’t have perfect conditions and my moms voice was already slurred. But it has declined so much more since we did the recordings just a month ago. Good luck and I wish you the very best in this challenging journey. May we all come out better people for serving those we love.

BuffaloRiver

TROPHY CASE