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Avatar universal

FibroSure and biopsy

Last summer or thereabouts, I had a Fibrosure test which indicated a score of F3 which was quite high compared to previous assessments of my liver.  My doc then decided we should do a liver biopsy which showed a fibrosis score of 0-1.  We decided to do another Fibrosure test 2 weeks ago which I discovered yesterday was F4 Cirrhosis.  Yikes.  Well, I did a little further digging and discovered that the Fibrosure test requires 10-12 hours of fasting ... no one had told me this and in both cases I had eaten regular meals.  Would digesting food skew the results so dramatically?
Because of this last test, my doc wants to start me on Telaprevir+PegIfn+Ribavirin.  Only prior treatments were with regular Interferon and Ribavirin.  I have the IL28B allele CC.  Should I go ahead and do the TPR treatment or wait for Sofosbuvir or do another Fibrosure test this time after fasting?
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Avatar universal
Thanks for that info.  Well, I started today!  Got the peg interferon injection around 2:30 or so and taking my first pills tonight at 7PM.  Twice daily dosing of 1125 mg. telaprevir and the Ribavirin.  So far, not too bad ... feeling an increase temp. on my face, but I know it'll be a bit worse tomorrow.  Really happy to have started!  Getting my viral load checked in two weeks and doc says I can play baseball if I'm up to it as long as I use plenty of sunscreen.
I know that the CONCISE and PROVE trials showed that 12 wks of therapy can work for some people.  That is, 12 total for all three drugs.  I guess we'll see how things evolve, but I'm hoping to be undetectable at 2 wks.  My viral load as of about 2.5 weeks ago was 233,000 which is pretty low for me.  A year ago it was 4M.  

Do you have more energy and such since getting through it all?

Mark
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1747881 tn?1546175878
"How long had you had Hep C and what condition was your liver in prior to the therapy?  Had you ever had previous therapy for it that didn't work?"

Hey Mark, I hope you can get everything straight and get started like you want.

I had hep c for approx 25 yrs (rough guess), my liver is late stage 3 by biopsy and I was tx naive when I started
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Avatar universal
Thanks for all this info.  One fly in the ointment, is that I just started getting a touch of diverticulitis/osus  which can resolve in the early stages if I give my system a rest ... hope it doesn't delay the start of tx.  I'm looking forward to Wednesday and getting the meds and making the tx plan with my doctor.  I will ask him about this nausea drug.  I'll have to keep awareness of anemia...played baseball today and we won our first game!  I hope I can get at least one more in...possibly three days after I start.  Don't know if that's realistic.  Again, thanks for all the tx experiences...that helps me prepare.

Mark
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1840891 tn?1431547793
Glad to hear you are on track to start your tx. Nausea is a fairly common early sx of the Incivek, so its a good idea to have a plan in place if it comes up. It hit me super hard in the middle of the second week and it rapidly became impossible to keep the meds down. It's very important not to miss any doses of the Incivek (to avoid viral mutation and breakthrough) so I was really glad I was able to reach my team quickly and get a new Rx for Ondanesetron within a couple of hours. I never would have made it without that drug. I would be gagging with severe nausea, dissolve one tiny pill on my tongue, and within 20 minutes the nausea was gone and I actually felt like eating again. Either get it in advance or make sure your doc will be reachable at any hour you might need it! Good luck!
Helpful - 0
3093770 tn?1389739126
Hi Mark

I am a 1b with a CT and regarding tx, well, I had a bit of a different journey. My second day of Telaprevir I was having really strong headaches and I was really sick as a result throwing up all day long. So the doc stopped my Telaprevir at middle of second day and gave me a lead in of 4 weeks. At the end of that I had a drop of almost 3 log so down to around 1700. After I started Telaprevir, I was UND after 4 weeks (total of 8 weeks though since start of tx)

I am only doing the 48 weeks because my doctor thinks is a better choice since I have severe fibrosis. I have been on a reduced Interferon dose of 135 since week 9 and I had 2 instances where I had to reduced to 90. On top of that I had to give interferon a miss in week 19 as blood values were too low. In US you might get a different support regarding low neutrophils levels but here in NZ dose reduction is the first approach.

I think I got anemic pretty much after 2-3 weeks but it is not so bad. I had a minimal dose reduction in Riba for one week when my hemoglobin was 8.8 but even then I was not feeling much. Some short breath during the Telaprevir phase plus that we had the summer at that time and I could not stand the heat

If I remember anything else significant I will let you know
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Avatar universal
Yeah, I've seen some of the studies regarding Vit. D and Zinc.  This will be the best flu experience I've ever had!

Mark
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1815939 tn?1377991799
My Hepatologist and my pharmacist said it was okay to keep taking all of the vitamins and supplements I was taking (Stress Vit. B, Vit. A, Vit. E, Vit. D, Calcium, Antioxidants, Omega 3-6-9). In fact, some studies have noted that taking Vit. D increased SVR rates.

http://www.hivandhepatitis.com/2010_conference/easl/docs/0518_2010_b.html

http://www.hepatitiscnewdrugresearch.com/vitamin-d-and-treatment.html
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Avatar universal
Wow, you all are great and so supportive!  This makes me very optimistic.  I haven't started quite yet.  The meds are being delivered on Wed. by UPS and I take them to the doc to create the treatment plan, etc.  I've done injections before, but it's good to get the low-down.  Do you know how long you've had it and what genotype you were?  The closer I get to starting, the more excited I am.  Lately, I've felt very fatigued ... could be the weather, but I know in general, I tire more easily than years ago.  I've had these freeloaders for almost 30 years and before that had Hodgkin's disease.  I can barely remember (sort of) what it felt like before I had these health issues.  Your stories of all that energy are really helping me to keep my eyes on the prize!  Thanks so much!

Mark
Helpful - 0
1815939 tn?1377991799
Just wanted to congratulate you on starting Tx and I hope you have a very smooth treatment with few side effects. Also wishing you SVR.

I treated with Inf., Riba, and Incivek. I was DET at 4 weeks so I had to do 48 weeks. I was UND at 8 weeks and remained that way throughout the rest of Tx. I finished Tx Aug. 25, 2012 and attained SVR (official in Feb. 2013).

Treatment was no picnic but it certainly was doable. If you have side effects, just post them here and we will help. There are plenty of us who treated with Incivek and we have a lot of remedies for side effects.

I can tell you I am elated to be virus free and, like Ceanotyus, I am still getting used to it, that it is a reality. I can tell you that I feel 1000% better than I felt before treatment. I have a ton of energy and never get any fatigue now whatsoever (fatigue was a huge problem for me before Tx). I now have pep, zip, energy, motivation. It is great. I feel better than I have felt for 20 years. I am back out in the garden working and doing all sorts of things I had not done for several years. I can stand all day and not get tired. I could even go back to work (I am 67 and i retired earlyu due to all of the extrahepatic manifestations I was having ... fatigue, joint pains, back pain, etc.) But now I could go back to work if I so desired. So life is good. I al telling you all of this so that you will know of more success stories.

Best of lucj to you and keep us posted!
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Avatar universal
Thanks Diana for that info.  Impressive and encouraging that you made it through the entire 12 week Telaprevir portion.  Were you undetectable at 4?  And what genotype are you?  I'll have to also get various lotions and prepare so I don't have to use any.  LOL.  I'm just emotionally preparing that other than my niece's wedding, I'm just gonna focus on resting and doing work.  I work from home so that helps alot.  I may go to a ball game now and then and I'm hoping to get one more game in tomorrow and maybe one or two more depending on symptoms.  How long was it before you became/felt anemic?  Thanks for your response ... it really helps.

Mark
Helpful - 0
3093770 tn?1389739126
I was on Telaprevir for 12 weeks and now I have another 18 weeks to go ( I am doing the long haul of 48 weeks)

Although dr was ok with vit when I am on interferon and Riba they said they prefer I do not take anything else during the 12 weeks of Telaprevir. I guess mainly because nobody really knows how ant supplement will impact tx. There are studies on vit B12, vit D, zinc, etxc and dual tx but nothing on triple tx yet. It is still pretty new.

I even called the manufacturer and they only told me to speak with the doctor or with the pharmacist. As if the doctor will have somehow different stream of information?? !!!!

So I preferred not to take anything during those 12 weeks. I made the most to avoid even panadol.

I can only hope lymphoma will also be gone by  the end of tx. Not easy on Telaprevir but I have done really well considering.. I was on the couch sometimes 2-3 days at the time but I kept working full time (luckily we had the xmas holidays at that time)

I did prepare though for tx quite thoroughly: I had every single thing for every single side effect you can think of and as a result I did not have to use any, lol.

But prior of starting I was on lots of raw food for 4 months, plus mega vit d and zinc. Also I have done several sessions with a psychologist working on anger  and some sessions of hypnotherapy for side effects. All in all maybe I was just lucky but I only had a rash around the knuckles for 10 days and a few headaches at the start. Plus the anemia and tiredness of course. Good luck and I wish you an easy tx
Helpful - 0
Avatar universal
Thanks for your comment.  I know the levels will fluctuate, but you never know how Zinc and Vit D might impact how your innate immune system responds to a viral infection.  I had Hodgkin's Lymphoma in 83 and 85 so I can appreciate your situation.  Did your doc say to stop taking the vitamins during tx?  Are you on Telaprevir?  In any case, good luck with your tx.  Just got word of my insurance covering the meds which should be delivered next week.  Excited about starting.  :)
Helpful - 0
3093770 tn?1389739126
Not to spoil you excitement but I had similar values. I had 1.5 mil, than down to 150000, I had vitamins, zinc, milk thistle, freash juices, you name it and than 6 months later virus was up again to 1.5mil.
I think the levels are always fluctuating in this way and no vitamins are in fact changing the levels!!! That did not make a difference for the level of fibrosis either, had severe fibrosis when I started tx

Hard to believe it after all the healthy life style I was having :)

I stopped any vitamins during the Telaprevir phase and couple of months after that but now I am back taking my vit D 50,000 units once per week. Levels dropped somehow since I started tx so I thought I will top up. I aslo tried vit b12 injection once per week. And now I am also on zinc as I have done a zinc test last week and I could hardly taste it so time for a top up as well :)

Good luck with your tx
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Avatar universal
Got my viral load today.  Last year it was 4 million ---log 6.6.  Now it is 233884 --- log 5.37.  Down a factor of 20.  I know these loads can vary quite a bit, but I'm just gonna keep taking Vitamin D, Zinc and Vitamin B12.  Really happy it was this low!
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Avatar universal
Thanks for the comments.  One thing the Fibrosure showed me was a high iron level.  Something to further check out.  The good thing about the situation is that if for whatever reason I cannot continue with the Telaprevir+, new treatments are right around the corner.  Type 1a can be a bit more difficult to get rid of, but I went undetectable pretty quickly back in 95 for a few months until a dose reduction.  Having never had pegylated interferon not to mention Telaprevir, I'm pretty optimistic, but it's nice to have some options.  Ceanothus, I hope your energy levels come back soon.  Check out some research of recent vintage on fibrosis regression using inhibitors.  There is a bright sun on the horizon!

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3093770 tn?1389739126
Not sure why you refere to it as blind data, or why do you think is a scam. Fibroscan has beed FDA approved. There is really no need for extreme invasive diagnostic methods especially for determining the status of a liver prior to HCV tx

Biopsy is not very accurate either since is showing a reading from one spot only. It is not really a reflection of the health of the liver as a whole

Helpful - 0
4309115 tn?1357606283
as a person who has had every test I thin k there is,there coming up with all sorts of new things they have a fibroscam,I mean fibro scan youhave to do your own research as to the reliability,still the golden test always has been and still is is a Biopsy,all the rest are blind Data.
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1840891 tn?1431547793
I WAS type 1a! It's so cool to be able to use the past tense. It actually is still something I have to stop and correct myself on, but I'm catching myself pretty quickly now, so I think I've almost gotten used to the idea of it being over. I know that stubborn thing too. My 15-month tx was one of those - I wasn't UND when I was supposed to be but my vl had dropped a lot so I pleaded with my doc to let me try to keep going. I did finally get to UND and then kept going so I had the same total time of being UND as those who did it on the normal schedule. I hoped it would work but the virus was back strong just 6 weeks after tx ended. I'm so glad this one really did work for me. I hope it works as well for you!
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Avatar universal
Wow Ceanothus, you've cut me to the quick!  You are a tenacious one and I'm very impressed.  I'm so happy for you now that you're SVR and I really appreciate your support.  Yes, I've worried and it's not clear what state my liver is in and now it's only a few months away from either Simeprevir or Sofosbuvir and yes, I've kicked myself for part of the miscommunications with my doc and not clarifying my views more clearly, and not starting the triple therapy 2 years ago.  But I also know that during those two years the medical community has become much more aware of the potential hazards of the telaprevir and now know how to better evaluate and observe patients for possible adverse events.  Had I started two years ago, given my strong drive to rid myself of these freeloaders (my history of 8 months taking interferon even though I was non-responsive on the 2nd attempt) I probably would have tenaciously continued taking the telaprevir even if I did have adverse reactions.  Patients who did that are now dead!  So, in the end, things are looking up.  It will interrupt a few baseball seasons this summer and fall, but I think having this thing for 30 years is long enough!
What genotype were you?  Again, thanks for your support and all the others who have contributed to this thread.  I fault no one as everyone has helped me to make this decision.  Those who are already clear are especially noble to take the time to help others!  I hope that I'll be in a position to do that also and have the character to continue making a contribution regardless of my status.  Thanks again!

Mark
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1840891 tn?1431547793
Mark, you are an amazing guy! I missed this whole thread until today, but just read all of it and I'm really impressed with your ability to calmly handle a fair bombardment (at least it looks that way when you read it all at once) of strong views, mostly seeming to tell you what you didn't really want to hear. Bravo to you for your very open manner in discussing it all and listening to the other views without getting upset. I laughed at your wife's saying you "pre-worried" – that's the same thing I say to my husband! It is frustrating for those of us who can take things as they come, but it seems to be a deeply embedded part of a person and not easy to change.

I agree with all the great advice you've gotten from the regulars above, and I also agree that its a very good time to treat, mostly because you are clearly eager to be done with this virus. Best wishes to you, and be sure to read up on the sx so you can be prepared if they do hit you. Btw, I had HCV from 1984 on, failed an early tx with just interferon, was dx'd with cirrhosis (by biopsy) in 2004, did 15 months if tx with interferon and ribavirin and relapsed, then finally did 48 weeks of triple tx and achieved SVR. I'm now 8 months post-EOT. You can do it too?!
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Avatar universal
Good luck Mark!
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Avatar universal
Good luck to you and hoping that your sx are minimal. I think your reasoning is very sound. If there is treatment available now that has a good chance for success why wait? That was the reasoning that came into play for me. Even though newer drugs are around the corner, there is something that can be done now. Best wishes for success.
Helpful - 0
979080 tn?1323433639
Sounds good , nothing like having a plan.
Wishing you minimal sides and a great response to tx.
You are a CC so that`s a big plus.
You will be just fine you will see.
Just go with the flow and make sure you take your
meds on time and that you run the bloodwork correctly.

All the best

Cheers
b
Helpful - 0
Avatar universal
Well folks, my doc and I agreed that I should start on Triple therapy.  If I tolerate it and it's effective, great.  If not, then the newer drugs will be available as a backup.  I know some of you might think I should wait, but assuming I have some fibrosis, it is best to arrest it now before it gets any worse.  I want to get rid of this before my 30th year of having it on July 7.  I must say I feel excited, yet kinda glum at the same time.  Why didn't he push me to do this 2 years ago?  N-e-way, the sooner I get rid of it, the happier I'll be.  Did anyone see the new paper on reversing cirrhosis?

Best,

Mark
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