Connect with others who understand.

Sign up Log in
Quick Links
Q&A Treatments A-Z Help Center Guidelines Crisis Accessibility
Resources
Diagnosis & Information Managing Your Condition Treating Amyloidosis All Resources
About MyAmyloidosisTeam
What is This Site Terms of Use Privacy policy
Powered By
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.

I Just Recently Been Diagnosed With Hattr What Are The Next Steps In Treatment And Appointments. I Have Opath, Nuero And Cardiology Appt Sch

A MyAmyloidosisTeam Member asked a question 💭
California City, CA
August 28
•
View reactions
A MyAmyloidosisTeam Member

I am a member with Kaiser Permanente medical group, so far I have not been referred out of network but if I have to my genetic doctor advised maybe city of hope in Orange, California (UCI).

September 3
A MyAmyloidosisTeam Member

It looks like you are meeting with the right doctors. In my and my sibling's experience, typical tests for HATTR include Echo and PYP imaging for Cardio (HATTR-CM), neuro exam, EMG and biopsies for Polyneuropathy (HATTR-PN), Depending on test results, treatments include Vyndamax (Tafamidis), a daily pill for CM and if you are lucky, Amvuttra, a shot every three months, for PN. I would be happy to assist with further questions as you go along if I am able.
Where are you getting treatment?

August 29
A MyAmyloidosisTeam Member

Awesome, thank you so kindly! I really needed this.

September 16
A MyAmyloidosisTeam Member

Please see the attached resource site. Tons of information - treatment centers (including City of Hope) webinars, local support groups.

https://www.amyloidosissupport.org/treatment/ca...

I would push for a quick referral and not waste any time, so that you can catch any symptoms, if existing, as early as possible. I wish you the best. Remember, YOU are you best advocate.

Amyloidosis Support Groups - AmyloidosisSupport.org
Amyloidosis Support Groups - AmyloidosisSupport.org
https://www.amyloidosissupport.org/treatment/california.html
September 15
A MyAmyloidosisTeam Member

Here are some steps and considerations for managing hATTR amyloidosis based on your upcoming appointments:

Treatment Options
1. TTR Stabilizers:
- Tafamidis (Vyndaqel): FDA-approved to stabilize TTR proteins and prevent them from misfolding.
- Diflunisal (Dolobid): A nonsteroidal anti-inflammatory drug that also Show Full Answer

Here are some steps and considerations for managing hATTR amyloidosis based on your upcoming appointments:

Treatment Options:
1. TTR Stabilizers:
- Tafamidis (Vyndaqel): FDA-approved to stabilize TTR proteins and prevent them from misfolding.
- Diflunisal (Dolobid): A nonsteroidal anti-inflammatory drug that also stabilizes TTR proteins.

2. RNA-Based Therapies:
- Patisiran: An RNA interference therapy that prevents the production of abnormal TTR proteins.

Specialist Appointments:
1. Ophthalmology (Opath):
- Monitor for any eye-related symptoms or complications due to amyloid deposits.

2. Neurology (Neuro):
- Assess and manage neuropathy, including peripheral and autonomic neuropathy.
- Evaluate symptoms like numbness, tingling, and difficulties with walking or standing.

3. Cardiology:
- Monitor heart function and manage symptoms related to cardiac involvement.
- Address potential heart failure and other cardiac complications.

General Considerations:
- Symptom Management: Treatments aim to address symptoms and prevent complications.
- Regular Monitoring: Continuous follow-up with your healthcare team to adjust treatments as needed.
- Support Network: Engage with support groups like MyAmyloidosisTeam to connect with others who understand your condition.

Always discuss your specific treatment plan and any concerns with your healthcare providers to tailor the approach to your individual needs.

August 28

Related content

View All

Info On Pfizer's Patient Support

A MyAmyloidosisTeam Member asked a question 💭
Saint Louis, MO
November 18, 2023

Started 6th Wk Of Chemo. Suddenly Feeling Good. More Energy, Head Not Fuzzy, More Stamina. Any Answers?

A MyAmyloidosisTeam Member asked a question 💭
lawtence pa
January 19

Does A Negative Attr Gene Test Mean I Have Wild Type?

A MyAmyloidosisTeam Member asked a question 💭
Sacramento, CA
September 14
What Is hATTR Amyloidosis? 6 Things To Know
Life Expectancy With Amyloidosis
What’s the Life Expectancy With hATTR Amyloidosis?
Continue with Facebook
Continue with Google
By joining, you accept our Terms of Use, and acknowledge our collection, sharing, and use of your data in accordance with our Health Data Policy and Privacy policies.Your privacy is our priority Lock Icon
Already a Member? Log in