seeking informed input studies for NASH - Living with Fatty...

Living with Fatty Liver and NASH

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seeking informed input studies for NASH

Deborahkd22 profile image
16 Replies

I was diagnosed with NAFLD in 10/22. I’ve exercised everyday, lost some weight, dropped red meat and have been a healthy eater before and after my diagnosis, but I am overweight. Not diabetic. Not on cholesterol meds. Slight hbp (triamertene and recently switched to Losartan). Upper quad pain reduced but still present occasionally. I’ve been taking Vit E and C. First Fibroscan 12/2022 showed F0/1 and 356 2/3 fat. I had a follow up Fibroscan in 5/24 and I’m surprised and very disappointed to have advanced to NASH F2 7.9 and 376. My gastro referred me for studies. I’m overwhelmed! Not sure what to do! 1 Corcept Mircorlant a phase 2b study and 2 Inventra Laniforanor, which I think is a phase 3. I was not offered Rezdiffra! I’m so concerned to have advanced with lifestyle changes. Weight loss has been very hard even following calorie deficits, Whole Foods, etc. Any advice about studies or drugs or length of time it took to turn around Nash appreciated. I have a teenage son … I had him late in life… want to need here for him. I am 61. Thank you for input and I need encouragement. I’m worried.

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Deborahkd22 profile image
Deborahkd22
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16 Replies
Alterity profile image
Alterity

I am 68, I was diagnosed with Stage 4 23 years ago, so I was 45 when diagnosed. I went from 283 to 200 and still in stage 4. Listen to your body, get lots of rest. The liver digest and heals more at rest. If you live anywhere close to Ohio, My Dr is doing a Liver Health Fair on June 15th at Bridge Park in Dublin. Scans, and lot of information 10 a.m. to 12. This is sponsored by Ohio State University Wexner Medical. Just watch what you eat, and rest.

Deborahkd22 profile image
Deborahkd22 in reply toAlterity

Thank you for replying! I noticed your previous post about the event in OH, and if I was not on a trip elsewhere that week, I would fly to Ohio. Have you treated the same group the whole time? 23 years at stage 4 is amazing and encouraging. Wondering how this will impact mu quality of life and curious if your doctors provided a regimen. I have considered treating elsewhere.

Alterity profile image
Alterity in reply toDeborahkd22

When first diagnosed I was going to a local Dr. and then I wanted a second opinion, so I went to OSU. I have been on 3 different research programs and had 3 different doctors. My first Dr. left OSU, then my second one retired. My biopsies still say Stage 4. But Scans say Stage 3.

Deborahkd22 profile image
Deborahkd22 in reply toAlterity

From what I’ve read, the biopsy is more reliable. Does your Dr agree?

Tarzan01 profile image
Tarzan01 in reply toDeborahkd22

My first gastrologist said that doing a biopsy can be very risky due potentially getting an infection.

in reply toAlterity

My daughter was just diagnosed with f4 in March and lives in columbus. Her hepatolgist is at st James. We would love to go to that but that's the day of her bridal shower. Is there any way to get this info?

Alterity profile image
Alterity in reply to

This is OSU putting it on. I would think that all Hepatolgist at the James could help. My Dr. is Na Li with that department. Several of the Hep Dr. are helping with it.

in reply toAlterity

Ok ty

Golendoodle profile image
Golendoodle

Have you ever had a MRI? FibroScan can be misleading. Have you had a Fib 4 to see what the likelihood your liver would progress to cirrhosis in five years? I’ve had three FibroScan all with different results the first one I had showed no fat or fibrosis then others came back with NASH I will be taking the medication Rezdiffra because my doctor feels it might help .I to will be at Bridgepark to help anyway I can. I don’t understand why your doctor is not advocating for you to take this medication.

Alterity profile image
Alterity in reply toGolendoodle

I have not seen Dr. Li other than calls about the event at Bridgepark since the medication has been approved. I see her June 6th.

Golendoodle profile image
Golendoodle in reply toAlterity

Sorry that message was for Deborahkd22. You and I have the same doctor and she is always helping me make the best decisions regarding medication and lifestyles especially diet !!! I will see you on the 15th.

Deborahkd22 profile image
Deborahkd22 in reply toGolendoodle

I am going to ask for Reziffdra. I’ve been invited to start two other studies.

Golendoodle profile image
Golendoodle in reply toDeborahkd22

That is wonderful! Could you tell me what studies they are?

Deborahkd22 profile image
Deborahkd22

Apologies! For some reason, my reply did not go through. There are two studies I was invited to participate in intended for patients with Nash … One is with Inventiva SA and the drug is Ianifabranor and the order is Corcept Therapeutics for a phase 2b Miricorilant.

Stardust143 profile image
Stardust143

I have stage 4 nash. I didn't know I had anything wrong with my liver until 11/21 when I was air flighted out I had almost bleed to death took over 1 and a half years to get it stopped bleeding. I have been hearing alot about monjaro helping your liver but I can't afford it along with my other meds. I am 62

lusitania84 profile image
lusitania84 in reply toStardust143

Wow... how did that happen? I mean where was the bleeding from?

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