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Steatosis G1 PI's
I just got a copy of my CT scan (have not seen doctor about it yet). It showed steatosis. Before this, I was all excited about starting tx as a G1a with the new PI Incivek. I thought that finally I had a chance to get rid of this virus. I had hope for the first time. I never heard of steatosis until today. And I've read so much already on the I-net that I am in tears. My liver is already and has been aching in the upper right quadrant, which is scary. Now this. I weigh 112 pounds so steatosis is from the HCV. I might clear the virus and still progress to HCC because with G1's the tx doesn't affect the steatosis at all. I am so discouraged. Does anyone know if the addition of Incivek might mean that the steatosis can resolve too, as it will with G3's? I cannot tell you how afraid I am now. Well, all of you know how it is. 65 years old - guess I have to say it's been a good life.
Good luck, cebean~ it sounds like you have all your ducks lined up!
When I found out, last October, that my liver enzymes were elevated much more than usual, and that my platelets had dropped out of normal range, I felt the same exact sense of urgency, that you are talking about.
I was completely driven to start my Triple Tx therapy! I had my biopsy, last Dec 1st (stage 2 ~fibrosis) and started Tx on Feb 7th.
The whole experience is a journey, and we get into this "flight or fight" mode, to start treatment~ it means that we are fighters, and it's a good sign.
And that is GREAT news, that your Insurance will cover your meds.
When I found out, last October, that my liver enzymes were elevated much more than usual, and that my platelets had dropped out of normal range, I felt the same exact sense of urgency, that you are talking about.
I was completely driven to start my Triple Tx therapy! I had my biopsy, last Dec 1st (stage 2 ~fibrosis) and started Tx on Feb 7th.
The whole experience is a journey, and we get into this "flight or fight" mode, to start treatment~ it means that we are fighters, and it's a good sign.
And that is GREAT news, that your Insurance will cover your meds.
Oh, I see what that e-mail means now. Duh. Well, there was no "best answer" - they were all good. And as I said, I would never single out one person. All I can do is the THANK YOU - and I mean it sincerely.
See you all next week.
See you all next week.
Oh - I found out yesterday that my insurance will cover BOTH PI's. YAY! So I'm ready whenever my liver is. And I am working very hard on my impatience - when I think about this, since I don't have answers yet, I force myself to think about something else. Thanks for all your help. I'll be back here after next Tuesday when I see the doc.
I just got an e-mail about thanking everyone for their efforts in helping me here, choosing a Best Answer and recognizing a member for their extraordinary efforts. I'm sorry, but I don't know how to do that. There wasn't a link. So I will do one of those things. THANK YOU ALL.
It's good to be among people who understand. I'm not sure what's ahead now, but I guess none of us do. Thank you again for your support. (If anyone knows how to do that Best Answer thing, please let me know. But I am not going to single any one person out as far as recognition. That just doesn't feel right to me - there are too many who help so much.)
It's good to be among people who understand. I'm not sure what's ahead now, but I guess none of us do. Thank you again for your support. (If anyone knows how to do that Best Answer thing, please let me know. But I am not going to single any one person out as far as recognition. That just doesn't feel right to me - there are too many who help so much.)
I started two threads on this by mistake - duh. So I will check both of them. Yes indeed, this forum was what I've needed for a long time. You people have and are on this road. You know what I'm going through. My husband is in total denial that this situation has progressed this fast. He says I'm fine/ The poor guy. He's a Vietnam Vet with PTSD (and 25 years in the Army), so he's very proficient at putting on the blinders and the blindfold. He can't handle this at all. It's sparking his PTSD ~ all the buddies he couldn't save on the battle field ~ and now, he can't save me. TODAY I start flushing out my system with good pure water. The soda is going - I've been a soda addict for as long as I've had HCV (40+ years).
Good evening,
Looks like you're getting some good advice on this forum. Please stop, take a deep breath. I know this can be overwhelming. I am sure all of us have felt a bit crazy at times. I try to remember that stress can cause harm too. So breathe. Make a list. And then, get into action. This forum may serve as a wonderful guide as you take your steps. You'll make it. Life is now.
C
Looks like you're getting some good advice on this forum. Please stop, take a deep breath. I know this can be overwhelming. I am sure all of us have felt a bit crazy at times. I try to remember that stress can cause harm too. So breathe. Make a list. And then, get into action. This forum may serve as a wonderful guide as you take your steps. You'll make it. Life is now.
C
That's another thing. I have asked ALL of my last four doctors about another biopsy. The one I had in 2002 was a walk in the park since I'm so thin, and it's easy to find a good spot to go through my ribs. EVERY one of them said I didn't need another one until.... 2012. Ten years. I never felt that was right, but... heck, they were the doctors. So yes, I am prepared for that and not a bit concerned - still skinny as a rail.
I see some typos in other posts of mine, but it's been a terrible day. My second hepatologist moved on to a bigger city and much better paying job. I live in a remote area with some horrible doctors. But I can and will drive an hour to the nearest city that has some top notch docs, to include hepatologists - no general gastros.
I have to beat this thing. About being 65, I know for sure that the body at our age reacts to damage a lot differently. I told the doctor that. Jeez. I had to tell him that. What did he say? "You don't look 65." I am done with that guy. I need to move on this fast though. I feel a sense of urgency as much as I don't want to.
And I am confident that TriCare will come through for me on the other PI. They do take care of us prior military folks - very good care of us. I was in for 10 years, my husband 25, so I get TC as his dependent.
I see some typos in other posts of mine, but it's been a terrible day. My second hepatologist moved on to a bigger city and much better paying job. I live in a remote area with some horrible doctors. But I can and will drive an hour to the nearest city that has some top notch docs, to include hepatologists - no general gastros.
I have to beat this thing. About being 65, I know for sure that the body at our age reacts to damage a lot differently. I told the doctor that. Jeez. I had to tell him that. What did he say? "You don't look 65." I am done with that guy. I need to move on this fast though. I feel a sense of urgency as much as I don't want to.
And I am confident that TriCare will come through for me on the other PI. They do take care of us prior military folks - very good care of us. I was in for 10 years, my husband 25, so I get TC as his dependent.
I want to thank you for helping to calm me down and give me some good advice. Yes, finding out you have a second disease in addition to the first one, which was bad enough, is extremely upsetting. I probably shouldn't have picked up those labs before seeing the doc, but I could not wait until May 8 because I had a feeling something was really wrong. I was worried about a tumor. I sure didn't expect to see what I did.
I weigh 112 or so, so gaining weight doesn't matter to me, esp. if I'm saving my life while doing it. I have realized that I do need to see a doctor who is not a general gastro but rather a hepatologist. I used to have one and then another after the first one, who was wonderful, stopped seeing Hep C patients. The second one was equally as caring and competent. The last three have been really bad. One tested me for HEP C! What? I gave him all my records to include my biopsy and he tested me for Hep C???? The next one didn't remember if he had ever seen me when I went BACK for lab results. So I'm not on the last one in town - and this is not going to work. I have seen him twice. He never even felt my liver.
It's been a really difficult day. I'm worn out. I think this forum is fantastic and wish I had found it sooner. I will be on the phone on Monday to find a REAL hep. doctor and schedule an appointment. My life depends on it.
AND I am SO happy for you! You kicked it! I know I can handle the treatment now - I just need to find the right doctor and get him to contact TriCare and make an exception re. what drug they will cover.
I weigh 112 or so, so gaining weight doesn't matter to me, esp. if I'm saving my life while doing it. I have realized that I do need to see a doctor who is not a general gastro but rather a hepatologist. I used to have one and then another after the first one, who was wonderful, stopped seeing Hep C patients. The second one was equally as caring and competent. The last three have been really bad. One tested me for HEP C! What? I gave him all my records to include my biopsy and he tested me for Hep C???? The next one didn't remember if he had ever seen me when I went BACK for lab results. So I'm not on the last one in town - and this is not going to work. I have seen him twice. He never even felt my liver.
It's been a really difficult day. I'm worn out. I think this forum is fantastic and wish I had found it sooner. I will be on the phone on Monday to find a REAL hep. doctor and schedule an appointment. My life depends on it.
AND I am SO happy for you! You kicked it! I know I can handle the treatment now - I just need to find the right doctor and get him to contact TriCare and make an exception re. what drug they will cover.
10 years is a long time. I am sure the hepatologist will do another biopsy. Sometimes fibrosis moves slowly but sometimes a person can go from a Stage 1 to a Stage 3 or 4 in 2 to 3 years.
One thing to keep in mind is that as we age, the liver damage generally progresses at a faster rate. You are 65. If you check forum profiles, you can see that many of us are in our 60s and many of us are in our 50s. There are younger people too, but this foum has a lot of baby boomers on it. There are several people on the forum who have cirrhosis and most of them are older forum members. (I do not mean 80. I mean 50-65).
On the hopeful side, several people who have or who had cirrhosis have treated and have attained a sustained viral response (cure).
In addition, there are members on this forum who are practically walking encyclopedias when it comes to Hep C and anything that is remotely connected to Hep C. So as time goes along, be sure and post your questions or concerns. Hopefully someone will be able to anwer your question about the PIs.
One thing to keep in mind is that as we age, the liver damage generally progresses at a faster rate. You are 65. If you check forum profiles, you can see that many of us are in our 60s and many of us are in our 50s. There are younger people too, but this foum has a lot of baby boomers on it. There are several people on the forum who have cirrhosis and most of them are older forum members. (I do not mean 80. I mean 50-65).
On the hopeful side, several people who have or who had cirrhosis have treated and have attained a sustained viral response (cure).
In addition, there are members on this forum who are practically walking encyclopedias when it comes to Hep C and anything that is remotely connected to Hep C. So as time goes along, be sure and post your questions or concerns. Hopefully someone will be able to anwer your question about the PIs.
I did have a liver biopsy 10 years ago - I was Stage 1, Grade 0. So with that, I thought this would not progress to this point 10 years later. Up until the last blood draw in November, my numbers weren't that bad. THEN, in that November draw my AFP was 20.9 - up from 13 a year before. So it was obvious that things were changing... and not for the better.
oops, spelled it wrong. Incivek. I have TriCare, and they did tell me that Incivek was covered but others weren't.... YET. That said, TriCare is wonderful. I am sure that once I get a hepatologist (did I spell that right? I am def. going to do that even though it means an hour or so drive) and he speaks to TriCare and explains my situation, a different PI will be approved. I have to believe that.
Interesting that your insurance will cover only Incivek. I wonder if they make any exceptions.
I did not have my lipid panel checked while on Incivek so I do not know if they went up. It is only for 3 months and then you can drop most of the fat.
I had lost 21 pounds last summer and then I started treatment. I gained 25 on Incivek (I think partly because I had just lost it and the body really wanted me to weigh more, lol, thought I was starving it). However, I finished Incivek Dec. 18th and I have lost all of the weight I gained plus 2 more pounds. I am still dropping weight on a steady basis.
I did not have my lipid panel checked while on Incivek so I do not know if they went up. It is only for 3 months and then you can drop most of the fat.
I had lost 21 pounds last summer and then I started treatment. I gained 25 on Incivek (I think partly because I had just lost it and the body really wanted me to weigh more, lol, thought I was starving it). However, I finished Incivek Dec. 18th and I have lost all of the weight I gained plus 2 more pounds. I am still dropping weight on a steady basis.
I think it is very normal for you to be upset and overwhelmed at this news. It is a shock to discover one has another illness. It is also frightening.
You will see your doctor soon. Hopefully he/she can explain more of the implications to you. I don't know what type of doctor you are seeing, but you should probably be seeing a Hepatologist.
Have you had a liver biopsy? A biopsy would at least tell you what stage of fibrosis you are at. You will be able to make a much more informed decision once you have a biopsy. Plus, the stage may affect the length of treatment (24 versus 48 weeks).
This forum is a great place for support and information. We are all in the same boat, more or less, or at least similar boats, depending on our fibrosis stage and any other complicating diseases. Basically, what I am saying is, we all understand what it is like to get a diagnosis of a potentially fatal disease and we understand and can lend support to each other. We can cheer each other on. We can share information. We can do this with each other's help.
Hang in there. You can do this. We are all behind you and we all support you.
You will see your doctor soon. Hopefully he/she can explain more of the implications to you. I don't know what type of doctor you are seeing, but you should probably be seeing a Hepatologist.
Have you had a liver biopsy? A biopsy would at least tell you what stage of fibrosis you are at. You will be able to make a much more informed decision once you have a biopsy. Plus, the stage may affect the length of treatment (24 versus 48 weeks).
This forum is a great place for support and information. We are all in the same boat, more or less, or at least similar boats, depending on our fibrosis stage and any other complicating diseases. Basically, what I am saying is, we all understand what it is like to get a diagnosis of a potentially fatal disease and we understand and can lend support to each other. We can cheer each other on. We can share information. We can do this with each other's help.
Hang in there. You can do this. We are all behind you and we all support you.
I don't know if the 20 grams of fat 3 times a day would affect the fatty liver so I cannot comment on that.
However, there are 2 new PIs. Incivek must be taken with 20 grams of fat each dose. Victrelis just has to be taken with food, not necessarily fatty food.
The PI you choose may depend on which one works best for steatosis (if they have done studies and know that). Again, I do not know but someone may know the answer. Hopefully they will come along soon and respond.
However, there are 2 new PIs. Incivek must be taken with 20 grams of fat each dose. Victrelis just has to be taken with food, not necessarily fatty food.
The PI you choose may depend on which one works best for steatosis (if they have done studies and know that). Again, I do not know but someone may know the answer. Hopefully they will come along soon and respond.
Wow ~~~ I just posted my crying jag and then I saw your post. THANK YOU. I will do the tx - I have to. I totally believe it will clear the virus. That is why this new info. is so very very upsetting. To cure the virus then lose the battle because of the steatosis. I just can't process this. Thank you for the bump. I need help.
Now I read that the use of the new PI's CAUSE fat in the liver - and that sounds right since you have to consume a lot of fat when taking them. So here I am with a fatty liver already so - zap to the tx that might have saved my life. I have never been so depressed. I was so hopeful and all that is gone.
If ANYONE out there can help me, please comment. And desrt thank you for doing so. Right now I just need some support so I don't DRINK again after 24 years of being sober. No, the Hep wasn't from drinking. I was a stupid sixties wild girl. Needles.
If ANYONE out there can help me, please comment. And desrt thank you for doing so. Right now I just need some support so I don't DRINK again after 24 years of being sober. No, the Hep wasn't from drinking. I was a stupid sixties wild girl. Needles.
I cannot answer your question about whether the PIs will cause the steatosis to resolve.
However, I found this very good article about Steatosis and, in case you have not already read it, it does give comprehensive information about steatosis, treatment, etc.
http://emedicine.medscape.com/article/175472-overview
Some of the more knowledgeable people on the forum may know the answer to your question concerning PIs and steatosis.
It is a bit slow here on Friday nights (a lot of people not on the computer) and so I will watch this thread and bump it up if it sinks to far down the list.
I wish you the best.
(PS: I am a Genotype 1 and I started treatment with Incivek at age 65 ... last Sept. I am now in week 30 of 48 weeks of treatment. I have been undetectable since week 8. The treatment is doable.)
However, I found this very good article about Steatosis and, in case you have not already read it, it does give comprehensive information about steatosis, treatment, etc.
http://emedicine.medscape.com/article/175472-overview
Some of the more knowledgeable people on the forum may know the answer to your question concerning PIs and steatosis.
It is a bit slow here on Friday nights (a lot of people not on the computer) and so I will watch this thread and bump it up if it sinks to far down the list.
I wish you the best.
(PS: I am a Genotype 1 and I started treatment with Incivek at age 65 ... last Sept. I am now in week 30 of 48 weeks of treatment. I have been undetectable since week 8. The treatment is doable.)
Thank you so much. I'm new on this forum and mistakenly posted my question twice. I cannot believe what a setback this is for me psychologically. I will have to go ahead with the triple treatment anyway. I've waited so long for it. If the fatty liver issue takes me down, at least I tried. My pdoc told me two days ago after seeing how my AFP had spiked that he would have (meaning I should have) taken the 50/50 chance on tx years ago (I was diagnosed in 2002).
Steatosis is just one more thing that needs to be monitored like hypertension or insulin resistance. Mine wasn't even detected until after I'd been cleared of HCV for a year. All my ultrasounds show it, but none has shown any sign of HCC. There are meds that can control and even reverse it, but like everything else they come with their own set of side effects. Definitely something you and your doctor should discuss, but for now, concentrate on clearing the HCV. Sorry I can't help you with any info on the PIs. Take care.
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