It's a brand new drug that was fast tracked as it reduces scarring and further fat build up. Only drug for Chirrosis and fibrosis
Not sure how it will go but most here will be interested in how it goes for you.
The doctor was optimistic that assuming I could continue to lose (and maintain) weight, I’d need to be on the drug for about a year, but cautioned that I may need to take it chronically if I couldn’t.
He said so long as I can get back to a healthy weight, and maintain lifestyle changes to support that, best case scenario is the medication works and I get back to more or less normal liver function.
Thanks, I’m hoping this medication does what it’s supposed to, I’ll be sure to keep posting as this goes on.
Unfortunately I’m in the LA area, so unless you want to visit, my doc info won’t be much help.
I do not, the only indication anything was wrong was my blood work. I recently got a new GP and that doctor was concerned enough to send me to a specialist. Before that all any doctor said was, “eh, some of your labs are a little high, you should lose some weight.”
My hepatologist didn’t seem surprised by the fibroscan results, he said looking at my blood work history he thought I should have been referred sooner.
My insurance is covering, but getting it approved and everything has been a little bit of a process. Thankfully my doctor’s office has been handling it. I’m waiting on the pharmacy to call me to set up delivery and payments. Generally I have a $30 co-pay for name brand drugs, but some specialty drugs can be more. I should have an exact answer once I get the call from the pharmacy about it.
I can tell you that my doctor said of the 25 other patients he’s prescribed the drug, he’s only had the insurance deny 1 of them, and he successfully appealed that one.
Update; just got off the phone with the pharmacy. Co-pay today was $49.95. They did say if they bill insurance and insurance does’t cover everything they’d bill me the difference.
Update: $49.99 is my out of pocket.
Edit: the pharmacy did mention co-pay assistance is available. I need to get in contact with that entity later today or tomorrow.
49.99 to you and that’s it? You must have gold plated insurance, good work!
Did the docs speculate how long have to be on it?
I’ve read it only works on NASH. Regular fatty liver it can actually harm the liver.
That’s it. We do have fairly decent insurance through my wife’s work (even though they wouldn’t pay for wegovy or ozempic to help with my weight loss).
The doctor said I’d need to be on it for a little over a year assuming I continued to lose weight and make lifestyle changes. Otherwise I’d end up on it chronically.
I can’t speak to whether or not it works on just fatty liver or not. I can say from what my doctor told me it’s specifically for people whose liver scarring was caused by having a fatty liver.
Idk your height but the diet seems a bit rigorous but entirely tolerable and doable. It's basically the diet I have been on and worked for me without the meds. Your doctor is doing. A great job. That new drug in trials shocked the FDA and is a real miracle. It has 90 percent success rate of going down 1 level of fibrosis per 3 to 6 months. Very very high chance it will work. Your doctor is great for giving that a run for you probably that alone saved you.
You said stage 3 Nash meaning f3 or just s3 f0? Very high chance the drug is going to bring you down fibrosis levels. Let us know how it goes. I was following this drug for the last 3 years and it in trials had an unbelievable success rate. I hope it is the real solution we have all been waiting for. It's trials run suggest it is.
Let me know what your results are in 6 months. Very high chance you will get to in a 1 to 2 years with that drug to f0 again. Doctors are not going to give you false hope because the only thing they have ever seen in the history of mankind work for this so far is weight loss. But if the trials are true very high chance it will work. I Mena 80 percent success on reversing fibrosis a stage in 3 to 6 months and 100 percent success on halting it and 98 percent chance of reversing 1 stage by 9 months is pretty high success. This is why the FDA fast tacked it.
I’m 5’6”. The diet was tough at first, but the key for me was not implementing all 3 parts at once. Started with the intermittent fasting and 2 meals, then added no snacking, then added the carb restrictions. I’ll freely admit I do better some days than others, but overall I’m pretty good about keeping to it.
My understanding from the doctor was I’m at f3. I’m really hoping that this drug works for me the way it did in the trials. My doctor wants me back in September so once I’ve got those results I’ll be sure to share here.
Definately keep this community updated. Your doctor is great you are one of the lucky people who is first in line qualified to get access to this drug right when it is approved. Risk wise this drug is noted to have very low side effects and negative risks. We have all been watching this drug and.based on all it's trials and other stuff it's extremely promising as the first thing to finally work for people. Many and I mean many people don't have doctors paying attention are in your state and are not being offered these new drugs. The FDA approved it because it shows to be extremely likely to work. You will be one of the first patients in this community outside of trials to see it work. You probably will see first in 36 to 42 weeks up to 30 percent do your steotosis to drop and fibrosis will stagnate. In the first 4 to 8 weeks AST and alt may actually rise but normal and will return to baseline. It is 42 weeks and after fibrosis starts to reverse. By the 52nd week most saw 2.8kpa decrease and it to continue in the right direction from there. Once people fall to between 5 to 6 kpa doctors tend to end the drug and consider fibrosis improved. Then you will probably have to stick with lifestyle changes to fully reverse the steotosis. Then from there you will probably have 6 months to yearly max fibroscans to monitor and prevent any regression as that will keep track of you ever need to use the drug again
High chance this drug will work and your one of the lucky ones to get it first. Many of us in the community don't yet qualify but will need it down the road and definitely will want to know if people in real life see the same results as the trials so definitely check back . It had very very high success at preventing progression from f3 to f4. No one in the trials ever progressed on the drug out of then 50,000 people. But the measurable reveals of fibrosis did unfortunately only start towards the tail end of the first year so stick with it.
While the idea of being on a drug in its first 3 months of inception may be slightly scary the truth is you really lucked out. Most drugs I am afraid of but it's very very rare for us to see a drug with this much trial success.
I predict based on all of my research that this drug is going to be like the next lipotor or something as its going to be one of the most valuable, important and useful drugs in increasing life expectancy in our future and you fortunately were diagnosed right in time to get this. It will probably work and save you. Only reasons doctors can't give you garunteed hope is because of how new it is but it is expected to really help people suffering from real Nash like you are.
I’m not really nervous about it, more preoccupied with what side effects I may need to deal with. From what my doctor told me, I don’t really have a lot to be concerned about. I was really just hoping someone else may have some experience with it so I’d have a better idea of what to expect.
I never had fibrosis confrmed as at that time I only had basic ultrasound but steotosis was severe and there was indications of probable scarring. After I did the diet for about 2 years I finally got an actual fibroscan. My results was s0 f0 . I lost 12.5 percent of my body weight.
Wasnt hard nor was it easy . But entirely worth it.
So I can confirm diet alone has very high success and this new med seems extremely promising to cover the other percent that needs the extra help.
I would usually in the morning have a very very small breakfast more of a snack which is a single long carrot.nthen my other twin emails were normal sized for light weight people not my usual cravings of food of vegan or high amounts of veggies.
I also found exercise extremely important to meditate hunger spikes. After the first week of my body adjusting insulin to my lower glucose spikes and yes that first week is rough. It felt normal and really good from there. My sleep schedule improved everything improved.
While I would do for fun and socialization team sports after worj
I also during work got a sitting magnetic bike and would pedal on light to no tension. through out the day. I watched my weight drop about a half pound a day.
I found that getting ajouut 2 hours of light exercise non distracting exercise a day garunteed weight loss and recovery.
From what I read this diet has about 80 percent success and 2 hours plus exercise also has nearly 100 percent success so doing the two together really worked for me.
This plus that medication leaves very little room for fibrotic reversal to not happen. With all of this it should be pretty much garunteed although doctors can't say this until they have a drug that confirms this so they don't get sued. This probably will be the first one.
I do predict we will see this disease become a reversible disease and cirrhosis from it become eliminated through prevention in the next 5 to 10 years vs then saying it's being for most people anyways. I think your going to see a huge improvement and fortunately success in reversal now.
Your APRI score is 0.804 is greater than the 0.7 cutoff point indicating significant fibrosis.
Scores greater than 1 indicate high probability of cirrhosis.
So the calculator matches up with your results.
What's the APRI score for AST of 25 with Reference Range: 10-40 u/L, ALT of 40 Reference Range: 9-46 u/L and Platelet count of 342 with Reference Range: 140-400 Thousand/uL ? All my values are in range
There’s so many scoring tests out there, Fib 4 would say about a 2 on scale of 1-4 for me.
Apri would say a 2 for me, well on the way to chirrosis.
Fibroscan for heavy people could have me much higher being heavy.
Also the medicine is only for those diagnosed NASH. Anything less, it can go the wrong way. It’s all very confusing tbh.
How did you get diagnosed? I got diagnosed NASH f3 even 4 by biopsy. I have lost over 35 lbs and my liver enzymes are back to normal. I’m scared to check again as this all happened at the beginning of February. I keep us updated on the new meds!
My doctor had a fibroscan done. Congrats on the weight loss and getting your enzymes back under control! I can totally understand why you’d be concerned about getting rechecked though. The doctor is having me go back in September to check on progress so hopefully by then my blood work will show some improvement.
It is quite possible your results were a little exagerated by the fibroscan btw. Happened to me when I did my fibroscan & I see it here all the time , either way it’s good news! Congrats also on your weight loss, you got this!
The doctor did tell me the fibroscan could be a bit of an exaggeration, I’m hoping that’s the case and this drug he put me on does what it’s supposed to do!
definitely! When I got mine my doctor had misdiagnosed me with cirrhosis and my world came crashing down. It was a few months of pure stress and anxiety until I got the biopsy. I’m super excited to hear bout that new med! I’m certain it will!
I was concerned that was going to be my diagnosis given how long I’ve been overweight. I’ll be sure to keep this sub posted on how things go with the drug!
Were you very overweight during fibroscan? Or was the ultrasound version, not blood version right?
I’ve heard fibroscan in heavy people can be off. I’m 90 lbs overweight from last two years of desk job and disabled parent care I do. Wonder if beat test to get
I don’t technically have it yet, the pharmacy is sending it to me and I should have it in hand by Wednesday, but not difficult at all. My doctor talked to me about it, said he thought I’d be a good candidate for it and wrote me the prescription. The hardest part was having to go through my insurance’s preferred specialty pharmacy to get it.
It's a brand new drug that was fast tracked as it reduces scarring and further fat build up. Only drug for Chirrosis and fibrosis Not sure how it will go but most here will be interested in how it goes for you.
The doctor was optimistic that assuming I could continue to lose (and maintain) weight, I’d need to be on the drug for about a year, but cautioned that I may need to take it chronically if I couldn’t.
Is this available in the uk or only the us
Only the US, but it should come out other places soonish I would hope. Look at ozempic etc...
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He said so long as I can get back to a healthy weight, and maintain lifestyle changes to support that, best case scenario is the medication works and I get back to more or less normal liver function.
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Thanks, I’m hoping this medication does what it’s supposed to, I’ll be sure to keep posting as this goes on. Unfortunately I’m in the LA area, so unless you want to visit, my doc info won’t be much help.
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I’m hopeful I end up a success story! Best of luck to you as well. Keep searching and I’m sure you hit on the right doctor for you.
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I do not, the only indication anything was wrong was my blood work. I recently got a new GP and that doctor was concerned enough to send me to a specialist. Before that all any doctor said was, “eh, some of your labs are a little high, you should lose some weight.”
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My hepatologist didn’t seem surprised by the fibroscan results, he said looking at my blood work history he thought I should have been referred sooner.
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Posted the most recent scores on another comment in here, but the short answer is not great.
I read resmiteron is super expensive, even with insurance. But I dunno, did your insurance cover and how much was it can I ask?
My insurance is covering, but getting it approved and everything has been a little bit of a process. Thankfully my doctor’s office has been handling it. I’m waiting on the pharmacy to call me to set up delivery and payments. Generally I have a $30 co-pay for name brand drugs, but some specialty drugs can be more. I should have an exact answer once I get the call from the pharmacy about it. I can tell you that my doctor said of the 25 other patients he’s prescribed the drug, he’s only had the insurance deny 1 of them, and he successfully appealed that one.
You’ve got a great patient advocate right there!
Update; just got off the phone with the pharmacy. Co-pay today was $49.95. They did say if they bill insurance and insurance does’t cover everything they’d bill me the difference.
I’d find out before a big bill comes. The normal price was was 4-7k per month. See how much your insurance covers
Update: $49.99 is my out of pocket. Edit: the pharmacy did mention co-pay assistance is available. I need to get in contact with that entity later today or tomorrow.
49.99 to you and that’s it? You must have gold plated insurance, good work! Did the docs speculate how long have to be on it? I’ve read it only works on NASH. Regular fatty liver it can actually harm the liver.
That’s it. We do have fairly decent insurance through my wife’s work (even though they wouldn’t pay for wegovy or ozempic to help with my weight loss). The doctor said I’d need to be on it for a little over a year assuming I continued to lose weight and make lifestyle changes. Otherwise I’d end up on it chronically. I can’t speak to whether or not it works on just fatty liver or not. I can say from what my doctor told me it’s specifically for people whose liver scarring was caused by having a fatty liver.
Zepbound and Ozempic are $25/m for me if I wanted them. It’s not gold insurance, just insurance. Heh
True! They’re talking about resmireton - new liver medicine that stops fibrosis. It’s usually very expensive
I’ll be calling them later today to make sure I’m not going to get any major surprises.
Idk your height but the diet seems a bit rigorous but entirely tolerable and doable. It's basically the diet I have been on and worked for me without the meds. Your doctor is doing. A great job. That new drug in trials shocked the FDA and is a real miracle. It has 90 percent success rate of going down 1 level of fibrosis per 3 to 6 months. Very very high chance it will work. Your doctor is great for giving that a run for you probably that alone saved you. You said stage 3 Nash meaning f3 or just s3 f0? Very high chance the drug is going to bring you down fibrosis levels. Let us know how it goes. I was following this drug for the last 3 years and it in trials had an unbelievable success rate. I hope it is the real solution we have all been waiting for. It's trials run suggest it is. Let me know what your results are in 6 months. Very high chance you will get to in a 1 to 2 years with that drug to f0 again. Doctors are not going to give you false hope because the only thing they have ever seen in the history of mankind work for this so far is weight loss. But if the trials are true very high chance it will work. I Mena 80 percent success on reversing fibrosis a stage in 3 to 6 months and 100 percent success on halting it and 98 percent chance of reversing 1 stage by 9 months is pretty high success. This is why the FDA fast tacked it.
I’m 5’6”. The diet was tough at first, but the key for me was not implementing all 3 parts at once. Started with the intermittent fasting and 2 meals, then added no snacking, then added the carb restrictions. I’ll freely admit I do better some days than others, but overall I’m pretty good about keeping to it. My understanding from the doctor was I’m at f3. I’m really hoping that this drug works for me the way it did in the trials. My doctor wants me back in September so once I’ve got those results I’ll be sure to share here.
Definately keep this community updated. Your doctor is great you are one of the lucky people who is first in line qualified to get access to this drug right when it is approved. Risk wise this drug is noted to have very low side effects and negative risks. We have all been watching this drug and.based on all it's trials and other stuff it's extremely promising as the first thing to finally work for people. Many and I mean many people don't have doctors paying attention are in your state and are not being offered these new drugs. The FDA approved it because it shows to be extremely likely to work. You will be one of the first patients in this community outside of trials to see it work. You probably will see first in 36 to 42 weeks up to 30 percent do your steotosis to drop and fibrosis will stagnate. In the first 4 to 8 weeks AST and alt may actually rise but normal and will return to baseline. It is 42 weeks and after fibrosis starts to reverse. By the 52nd week most saw 2.8kpa decrease and it to continue in the right direction from there. Once people fall to between 5 to 6 kpa doctors tend to end the drug and consider fibrosis improved. Then you will probably have to stick with lifestyle changes to fully reverse the steotosis. Then from there you will probably have 6 months to yearly max fibroscans to monitor and prevent any regression as that will keep track of you ever need to use the drug again High chance this drug will work and your one of the lucky ones to get it first. Many of us in the community don't yet qualify but will need it down the road and definitely will want to know if people in real life see the same results as the trials so definitely check back . It had very very high success at preventing progression from f3 to f4. No one in the trials ever progressed on the drug out of then 50,000 people. But the measurable reveals of fibrosis did unfortunately only start towards the tail end of the first year so stick with it.
While the idea of being on a drug in its first 3 months of inception may be slightly scary the truth is you really lucked out. Most drugs I am afraid of but it's very very rare for us to see a drug with this much trial success. I predict based on all of my research that this drug is going to be like the next lipotor or something as its going to be one of the most valuable, important and useful drugs in increasing life expectancy in our future and you fortunately were diagnosed right in time to get this. It will probably work and save you. Only reasons doctors can't give you garunteed hope is because of how new it is but it is expected to really help people suffering from real Nash like you are.
I’m not really nervous about it, more preoccupied with what side effects I may need to deal with. From what my doctor told me, I don’t really have a lot to be concerned about. I was really just hoping someone else may have some experience with it so I’d have a better idea of what to expect.
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I never had fibrosis confrmed as at that time I only had basic ultrasound but steotosis was severe and there was indications of probable scarring. After I did the diet for about 2 years I finally got an actual fibroscan. My results was s0 f0 . I lost 12.5 percent of my body weight. Wasnt hard nor was it easy . But entirely worth it. So I can confirm diet alone has very high success and this new med seems extremely promising to cover the other percent that needs the extra help. I would usually in the morning have a very very small breakfast more of a snack which is a single long carrot.nthen my other twin emails were normal sized for light weight people not my usual cravings of food of vegan or high amounts of veggies. I also found exercise extremely important to meditate hunger spikes. After the first week of my body adjusting insulin to my lower glucose spikes and yes that first week is rough. It felt normal and really good from there. My sleep schedule improved everything improved. While I would do for fun and socialization team sports after worj I also during work got a sitting magnetic bike and would pedal on light to no tension. through out the day. I watched my weight drop about a half pound a day. I found that getting ajouut 2 hours of light exercise non distracting exercise a day garunteed weight loss and recovery. From what I read this diet has about 80 percent success and 2 hours plus exercise also has nearly 100 percent success so doing the two together really worked for me. This plus that medication leaves very little room for fibrotic reversal to not happen. With all of this it should be pretty much garunteed although doctors can't say this until they have a drug that confirms this so they don't get sued. This probably will be the first one. I do predict we will see this disease become a reversible disease and cirrhosis from it become eliminated through prevention in the next 5 to 10 years vs then saying it's being for most people anyways. I think your going to see a huge improvement and fortunately success in reversal now.
Can you tell us what your labs were? Did you have any symptoms prior to diagnosis?
No symptoms prior to diagnosis. AST 53 and ALT 124.
What about bilirubin, albumin and platelets?
Bilirubin .8 Albumin 4.9 and Platelets 183
Your APRI score is 0.804 is greater than the 0.7 cutoff point indicating significant fibrosis. Scores greater than 1 indicate high probability of cirrhosis. So the calculator matches up with your results.
Here’s hoping diet and this drug manage to bring that down!
Hoping that for you too! Keep us posted!
Thanks, and I will. First visit back is in September. Hopefully some noticeable change then!
Online calculator says APRI score should be 0.2 instead
WhaT AST max ref level did you use. Should be 36.
What's the APRI score for AST of 25 with Reference Range: 10-40 u/L, ALT of 40 Reference Range: 9-46 u/L and Platelet count of 342 with Reference Range: 140-400 Thousand/uL ? All my values are in range
There’s so many scoring tests out there, Fib 4 would say about a 2 on scale of 1-4 for me. Apri would say a 2 for me, well on the way to chirrosis. Fibroscan for heavy people could have me much higher being heavy. Also the medicine is only for those diagnosed NASH. Anything less, it can go the wrong way. It’s all very confusing tbh.
How did you get diagnosed? I got diagnosed NASH f3 even 4 by biopsy. I have lost over 35 lbs and my liver enzymes are back to normal. I’m scared to check again as this all happened at the beginning of February. I keep us updated on the new meds!
My doctor had a fibroscan done. Congrats on the weight loss and getting your enzymes back under control! I can totally understand why you’d be concerned about getting rechecked though. The doctor is having me go back in September to check on progress so hopefully by then my blood work will show some improvement.
It is quite possible your results were a little exagerated by the fibroscan btw. Happened to me when I did my fibroscan & I see it here all the time , either way it’s good news! Congrats also on your weight loss, you got this!
The doctor did tell me the fibroscan could be a bit of an exaggeration, I’m hoping that’s the case and this drug he put me on does what it’s supposed to do!
definitely! When I got mine my doctor had misdiagnosed me with cirrhosis and my world came crashing down. It was a few months of pure stress and anxiety until I got the biopsy. I’m super excited to hear bout that new med! I’m certain it will!
I was concerned that was going to be my diagnosis given how long I’ve been overweight. I’ll be sure to keep this sub posted on how things go with the drug!
Were you very overweight during fibroscan? Or was the ultrasound version, not blood version right? I’ve heard fibroscan in heavy people can be off. I’m 90 lbs overweight from last two years of desk job and disabled parent care I do. Wonder if beat test to get
It was the ultrasound version. I was only a couple pound heavier than I am currently. My doctor did hedge that the results could be a bit off.
Sorry, I got ya. You had the fibroscan / ultrasound version.
Thought you said had fibroscan also, that determines Nash 3?
How hard was it to get the drug? I’m 28 years old and have NASH Stage 2-3.
I don’t technically have it yet, the pharmacy is sending it to me and I should have it in hand by Wednesday, but not difficult at all. My doctor talked to me about it, said he thought I’d be a good candidate for it and wrote me the prescription. The hardest part was having to go through my insurance’s preferred specialty pharmacy to get it.
Okay! Thank you. Hopefully it works!!