Connect with others who understand.

sign up log in
Resources
About MyAmyloidosisTeam
Powered By

Questions & Answers

Get practical advice and insights from people who understand

Don't see your question? ask question
Real members of MyAmyloidosisTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
View:

Hello I Have A Sct Coming Up In April.

Hello I Have A Sct Coming Up In April.

Hubby will be caregiver. Any helpful tips? Hubby doesn’t do housekeeper thing. We will be staying close to the H as I will be an outpatient also considered a low threshold patient . We will get a place with a kitchenette for sure . I’ll bring frozen low salt soups from home. Does anyone that has gone through this have any suggestions or helpful tips? Thank you 😊

posted 4 days ago
A MyAmyloidosisTeam Member

Thank you unfortunately I won’t be staying in the H as they only do outpatient for this. Unless I am having any issues that is. We will get an Air Band B close to the H. Thank you for your well… read more

posted 3 days ago

Does Anyone Know The Difference Between Patisiran And Eplontersen? Jeffrey

Does Anyone Know The Difference Between Patisiran And Eplontersen? Jeffrey

posted 5 days ago
A MyAmyloidosisTeam Member

Thank You . Hope this med works well!

posted 3 days ago

Does Anyone With Attr-wt Have Gut And Bowel Problems? What Symptoms Do You Have?

Does Anyone With Attr-wt Have Gut And Bowel Problems? What Symptoms Do You Have?

posted January 19
A MyAmyloidosisTeam Member

I take famotidine and Iberogast.

posted 6 days ago

AL Amyloidosis Medical Abstract

AL Amyloidosis Medical Abstract

I know we have a resource link on our site but I thought I would share the link below. It is a link to a 2019 medical abstract (PDFformat) mainly focused on AL Amyloidosis (may be too detailed for some perhaps?) However I found it interesting due to the detail (Google helps with clarifying medical terms)
This link verifies much of my journey with AL amyloidosis and helps me understand the blood and urine test results in detail, initial diagnosis, and ongoing prognosis. It also makes me… read more

posted January 16
A MyAmyloidosisTeam Member

Thank you.

posted January 16

Skin Amyloidosis

Skin Amyloidosis

Is it called Primary Cutaneous Amyloidosis

posted January 8
A MyAmyloidosisTeam Member

I have AL Amyloidosis. A different type. Must say tho that my skin does get itchy and aggravated. Have a good day.

posted January 8

Is There An Effective Sleeping Drug To Counter The Affects Of 40 Mg Of Dexamethasone?

Is There An Effective Sleeping Drug To Counter The Affects Of 40 Mg Of Dexamethasone?

I have been taking 40 mg of Dexamethasone once a wk with my 2 chemo drugs, MYBORPRE regime. Has anyone discovered a good sleeping drug that counters the effects of the steroid at the day 1/2 mark of taking the steroid? I can only seem to get 4/41/2 hrs of sleep at a time using zoplicone 5mg or Benadryl 50mg (not taken together) and find it hard to fall back to sleep once I’ve woken. I walk daily and watch what I eat including leaving 3 plus hrs between eating dinner and bedtime.

posted January 7
A MyAmyloidosisTeam Member

Happy New Year to you as well. I've not used dummies for some time. I take a prescription sleep drug. It's 30mg of Temazepam. Extremely effective especially if limited to the nights you take the Dex… read more

posted January 9

Has Anyone Gone “public” (i.e. Social Media) With Their Diagnosis In Order To Raise Awareness And Advocate For More Support?.

Has Anyone Gone “public” (i.e. Social Media) With Their Diagnosis In Order To Raise Awareness And Advocate For More Support?.

After my prostate cancer diagnosis 5 years ago I had many people respond by thanking me for sharing info and advocating early testing.

posted January 7
A MyAmyloidosisTeam Member

Thanks!

posted January 15

Do Self Healing Socks Make A Difference?

Do Self Healing Socks Make A Difference?

The internet advertises several brands of self healing socks.

posted January 7
Already a Member? Log in