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I've Been On Tafamidis 3yrs Now. Thought I'd Be A Goner By Now. Must Be Working . Anyone Else Passing The 3yr Mark On Tafamidis?
Hopefully we’ll have good news like this for AL too
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 😊
I had SCT in March 2022. The best advice I can give you is, take it one day at a time, particularly after your mega-dose of chemo. You should expect a few rough days, but you’ll get through it… read more
What Medication To Be Given To Control High Bilurubin (15-20 Mg) In Case Of Primary Amyloidosis?
Does Anyone Know The Difference Between Patisiran And Eplontersen? Jeffrey
Thanks Paula for more information.
Does Anyone With Attr-wt Have Gut And Bowel Problems? What Symptoms Do You Have?
People with hATTR amyloidosis can experience gastrointestinal issues due to nerve damage affecting the autonomic nerves, which control digestion, bladder, and bowel functions. Symptoms include:
-… read more
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
Certainly! Here is a detailed abstract on AL Amyloidosis based on the provided context:
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Title: Understanding AL Amyloidosis
Abstract
Amyloid light-chain (AL) amyloidosis, also known as primary… read more
Has Anyone Who Has Had To Undergo Chemo Had Blisters Firming In Their Legs Which Either Bleed Or Excrete Clear Liqiud
Sounds like you have bad edema which needs controlling with diuretics, low sodium diet and possibly daily fluid restrictions. You need to talk with your doctor's. Some patients may have their skin… read more
Skin Amyloidosis
Is it called Primary Cutaneous Amyloidosis
Can anyone tell if taking vitamin C supplements be beneficial to persons having PCLA?
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.
After Ambien proved to strong for me, the doctor put me on Trazadone which works great. I take one tablet and close my eyes. It usually keeps me sleep for 4-6 hours.
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.
Thanks!
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