FibroSure and biopsy

[MarkFly1]

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?

[pooh55811]

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

[MarkFly1]

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

[pooh55811]

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!

[MarkFly1]

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

[Diana66]

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

[MarkFly1]

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.  :)