More good news, pierre. Love it!  Stay compliant, well hydrated and rest as needed.  You're gonna stomp the little demon out. ;)

Crazy! Today I got the complete blood work results & everything is back in a totally normal range. This is especially noteworthy of course  the AST & ALT -- which had been way off for as long as I had tests done, some fifteen years now -- & probably way longer. & all that after just 2 weeks of the treatment. 

I am at day 8 of Sovaldi/Olysio, Feeling a little tired, but otherwise ok. 

Fantastic, Pierre! These new drugs knock the virus down quickly.  Great news.

Great news, pierre!  It seems many are showing UND or near-UND at two weeks.  You can't help but be excited about that.  Boogie on....

Wayne

Heard from my hepatologist yesterday re results of bloodwork after two weeks of S/O treatment: VL down from 2 million to 25! Wow! now of course hope in another month it will be UND & will stay that way! But only, as they say, time will tell... (Will keep you informed) Meanwhile I have a very positive "side-effect" psychologically & physically feeling energized & ready to boogie... 

Today is day 6, I am feeling pretty good, no complaints, no side effects noted. I have a theory---> the reason I feel better is the first few days was an adjustment and adjusting to the minor side effects and the aggressive assault on the virus, and after a few days, I believe that the virus count is now falling and thats why I am feeling better. I don't think it is a placebo effect because I have more hope of a cure and psychologically I am feeling better. No, I have been through too many failed treatments to get overly hopeful, about a new pill. I am almost afraid to get my hopes up just to have them come crashing down. So having said all that,  I think the medicine is working. I am on day 6 on Sovaldi & Olysio. Time will tell. Thanks again for everyones support.

I am only on Sovaldi and Riba but I take my 3 Riba pills and 1 sovaldi at 7:15am every morning with a small bowl of cereal (30grams) and some lactaid milk. I usually have dinner around 6:30pm each night and then I take my 3 evening Riba pills at or as close to 7:15pm as I have my dinner in my stomach.

I take mine together right after breakfast (cereal usually).  On the Olysio Rx insert, it states that the type of food does not affect exposure to simeprevir.  So just do not take it on an empty stomach. 

I think that some take the meds separately because their doctors wanted them to be able to identify which med might cause side effects, if any.  I'm not convinced this would be helpful unless there is an immediate reaction following drug ingestion.  It takes time for meds to buid up in blood and since taking both every day, even if separately, how can one know which drug is causing a side effect when the blood levels of both are present?

Taking them a.m. & p.m. for the by now probably useless theory that if one of them had had side-effects, I may have been able to better determine which one was the culprit. 

All in morning, excepting the pm Riba dose. I was told it didn't matter with Sovaldi/Olysio, from a tx standpoint. Like to get it out of the way, personally. Less likely to miss a dose.

Thank You all for the advice, everyone seems very kind. It seems most people take the meds separately like, one pill in the morning and one pill in the afternoon or evening. Any thoughts on this routine?

I take the Sovaldi around 8 a.m. with a 16 oz glass of fresh vegetable juice, a small bowl of grains, & a cup of coffee, and the Olysio around 2 p.m. with whatever I have for lunch that day (most often a salad & some protein, meat or fish or tofu.) Seeing my hepatolist today & will get blood work done. looking forward to get results of change in VL after 2 weeks on treatment! (Well, that will be in 4 or 5 days...) Have had no side-effects whatsoever -- except that my energy level has been rising (tho it was never abnormally low) probably boosted by the idea of light at the end of the tunnel. 

Ditto, although on weekends, its pancakes!

I take my a.m. dose with 6 oz. yogurt and a banana. And coffee. Seems to help. Regards...

Wayne

I take the Meds at 0830 am, what kind of food would you recommend? I saw something about yogurt. Any recommendations or thoughts? 

Hi Tornado, noticed you said you are taking med without food.  Olysio is supposed to be taken with food for better absorption.  Sovaldi either with or without.  

The increase in heartburn is not unusual when discontinuing  prilosec or other ppi's because you can experience a rebound acid effect. 

I was under the impression few side effects meant no side effects, I was wrong. Day one nothing, day two, body aches headache and at night fever, weakness. Also notice a little nausea, which was no big deal, no vomiting, and the nausea was very slight. I did noticied stomach acid/heartburn, I was afraid to take my prilosec, fearing it might block some absorption of the he p c meds. I think tonight I might try some mylanta. I have noticed a little decrease in appetite, but it hasn't stopped me from eating. I take the meds in the morning around 9am. I take my regular meds at 0530 am on days I Am working and 8am when I Am not working. I want to stay very consistent. I want to take meds on an empty stomach. Followed by a couple of glasses of water and no eating for 3 hours. I think it will all be OK and manageable. Definitely better than the old meds. So, I'll try to keep posting, letting everyone know my side effects and my 4 week results. Today' I went to the University research clinic and signed up for a study on the new meds and how they effect me, and gave blood for testing, for future use. Like making these meds on label, instead of off label. Otherwise, I am very excited to be taking these meds and am hopeful they will work. But I have had my hopes crushed before with new hep c meds that didn't work for me. I will try to stay positive and learn and get use to managing any side effects. Thanks Tim

Thanks Darkstar! 

darkstar wrote:

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Thanks gator...always hard to know...but with near nl LFTs, I feel better than I have in a few years

 

Mallani is absolutely correct about Q80K, it does predict relative resistance to olysio (simeprevir), this from the package insert:

 

 

• Screening patients with HCV genotype 1a infection for the presence of

  virus with the NS3 Q80K polymorphism at baseline is strongly recommended. Alternative therapy should be considered for patients infected with HCV genotype 1a containing the Q80K polymorphism. (1, 12, 14) 

 

What we don't know is what happens when it is combined with sovaldi (sofosbuvir) so Caryn, current combinations may be fine

 

Tornado, in COSMOS there was no difference in response rate between patients who did or did not get ribavirin in combination with sofosbuvir/simeprevir.  Cautionary not is that sample size was small.

 

 

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Thanks gator...always hard to know...but with near nl LFTs, I feel better than I have in a few years

Mallani is absolutely correct about Q80K, it does predict relative resistance to olysio (simeprevir), this from the package insert:

What we don't know is what happens when it is combined with sovaldi (sofosbuvir) so Caryn, current combinations may be fine

Tornado, in COSMOS there was no difference in response rate between patients who did or did not get ribavirin in combination with sofosbuvir/simeprevir.  Cautionary not is that sample size was small.

darkstar wrote:

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Glad you don't have symptoms.  I thought I was just getting older until I started treatment.  Boy was I wrong!

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If we are as old as we feel darkstar, I hope you are now many years younger than when you started treatment. I've got the old part going on, I just don't know how much of it is tied specifically to cirrhosis. 

The possibility of cirrhosis/fibrosis regression to any degree, should certainly contribute to feeling better down the road. I'm glad you are off to a good start!

I thought I read something about this also Malcolm. This is interesting. I need to find out if he tested me for this. no sense in going through all of this when ledipasvir is right around the corner. 

Thanks cinnamon! I haven't gone too far from the forum in the last year... Still reading up on everything almost everyday. It makes me sound like I know what I am talking about when I talk to my doctor - ha ha! I'll keep you posted. 

Hi guys,

The Q80K polymorphism is a naturally occurring variant in the family of HCV causing Geno1 hepatitis. As you know, each wild-type virus has a 'family' of slightly changed variants. Each variant has a name, given by the structural change at a specific viral position ( each protein in the complex viral structure is given a number). Q80K is present in about 40% of G1 HCV patients, and has been shown to alter( decrease) the response to Olysio.

Patients are routinely screened for this polymorphism using the LabCorp HCV Genosure NS 3/4 Test. When present, Olysio should not be used, although it may be tried with a different DAA (not an antiprotease).

Not to confuse you because I get confused on what it is, so I will leave the Q80M question for the Guru's to answer. 

All I do know is that it can be included in HCV patients and it is screened for differently.  I am lucky not to have this so I did not dig in too deep on it.

Just read your second post about not taking Riba. 

My doctor told me yesterday that her group of gastro docs are going to start to leave the Riba out of tx for G1 patients that are on Interferon.

I could not take Interferon due to Sarcoid issues so they had me take Riba

Tw G1 folks in her practice started off-label tx Jan 17 without Riba and they were UND on day 21.  They also have stage 3 and 4 cirrhosis, non fatty non alcohol biopsy's.

TY

What is Q80K ?

Congrats Tornado,   I think You will be pleased with the outcome this time.

I just finished day 41 of Sovaldi, Olysio and Riba.  UND day 20 and day 30.  Next TMA test this Wednesday expecting same UND results.

No outstanding sx to mentions, everyone has been a little different on these new drugs. 

Good luck with your tx.

Cool, any news as to the success rate with Sovaldi and Olysio without ribavirin? 

I just took my first doses of Sovaldi 400 mg once a day and Olysio 150 mg once a day. I am genotype 1a non-responder x 3,1998- peginterferon/ ribavirin, 1999-ISIS trial, 2010-peginterferon/ ribavirin/ boceprevir. Keeping my fingers crossed. I was initially rejected by UMR insurance, then doctor sent labs and history and they approved it Thursday and I got the meds today.

Happy to hear you will be trying these new meds.  The side effects have been virtually non-existent for me on the two drug protocol.  Much luck to you!

Caryn wrote:

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I saw my doctor yesterday and should start treatment with simeprevir, sovaldi and ribavirin in the next month or so. Round 2!  I hope it works this time!

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Hi again Caryn, that`s great news, really pleased for you.  It will be a lot easier for you this time compared to being on the incivek triple, and you should do well on this combo.  Wishing you all the best, keep us posted! 

I saw my doctor yesterday and should start treatment with simeprevir, sovaldi and ribavirin in the next month or so. Round 2!  I hope it works this time!

Gator, just read the article.  I think the point they make is that the inflammation they describe was thought to be associated with fibrosis/cirrhosis but 37/38 patients had regression in spite of this.  My interpretation is that there are many forms of inflammation and this is only one.

Glad you don't have symptoms.  I thought I was just getting older until I started treatment.  Boy was I wrong!

Darkstar, the specific reference regarding portal inflammation regression after SVR is found in the abstract at this link, http://www.ncbi.nlm.nih.gov/pubmed/22271347. The conclusion states as follows: "Cirrhosis regression and decreased fibrosis are frequently observed among HCV patients with cirrhosis with an SVR. Despite ductular proliferation vanishing and lobular zonation restoration, portal inflammation and sinusoidal capillarization may not regress after viral eradication." I would comment that a:) I have not read the study and b:) I am not a physician or have medical training. If you do a google search, there are other articles that support your statement that  "[l]ivers may be able to get better, not normal, but still improvement." I think the outlook for those of us with cirrhosis/fibrosis is significantly brighter than it has been even in the recent past.

Since I have been relatively asymptomatic of cirrhosis symptoms prior to Tx, my "physical" improvement in the last few weeks is probably as much psychological as anything else, even with improved LFTs.  Simply stated, my new found optimism has added a "spring to my step." which at this stage may be as significant to me as actual physical changes. Of course I only speak of my own experience and am glad you have noted positive changes from inflammation reduction.

I think given new medical research, there is reason to hope that a successful Tx outcome and SVR may significantly diminish, if not foreclose, the physical effects of advanced liver disease.

Thanks for your info and encouragement Darkstar.  Don't get me wrong, I am excited to have the VL where it is, it's just that a few people posted who achieved UND at 2 weeks, so I was hoping to attain that as well.  Since this combination of meds is so new, I don't know what the norm should be with this protocol. Believe me I am very happy to be having this response. 

Maddie, down to 70?!?!  That is fantastic given where you started and exceeds 3 logs in two weeks.  As far as I know, that is unheard of with standard triple therapy.  As far as Q80K goes, I have it as well.  That is one of the many reasons for two drugs.

Gator, the comment you made about inflammation is simply not correct.  AFP rise is certainly related to at least in part hepatocellular inflammation.  In my own case the drop from 200+ to about 20 in 6 weeks.  In addition, I believe that my own improvement in overall sense of well being is related to improvement in inflammation. To be clear, this is also related to comments that have been made by my treating physician.

Thank you so much Gator Man.  Have been a bit worried because I have that darn Q80K.  The positive thoughts from you and others here are so encouraging. 

Great news maddie! UND is around the corner.

Gator Man wrote:

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....   I also feel better physically, in part because of improved diet and exercise for the last few years, but also have increasing confidence for good health because of Tx results, which plays a major role as well.  I try to keep in mind that it is pointless to rid myself of HCV if I end up acquiring some other disease (e.g. diabetes, heart disease, etc.) because of poor lifestyle habits. Being optimistic about getting to SVR in the near future makes the task of taking better care of my health easier to follow.

---

 Well said, Gator!

Fantastic news, Darkstar!  Finally got my 2 wk.bloods.  VL is 70 down from 1.9 M. Headed in right direction but not yet UND. 

Congratulations darkstar. My next VL check is at 8 weeks (March 5th) and hope to follow in your footsteps.

My doctor doesn't want to discuss post EOT issues just yet. He has alluded to the changing landscape regarding the progression of liver disease for those of us with severe fibrosis/compensated cirrhosis, but doesn't want to get the cart before the horse. He did say enough to indicate that optimism is warranted. There are several articles/abstracts on the internet that show overall decrease in cirrhosis/fibrosis for HCV patients that have achieved SVR, although portal inflammation and other issues may not resolve after Tx.

I also feel better physically, in part because of improved diet and exercise for the last few years, but also have increasing confidence for good health because of Tx results, which plays a major role as well.  I try to keep in mind that it is pointless to rid myself of HCV if I end up acquiring some other disease (e.g. diabetes, heart disease, etc.) because of poor lifestyle habits. Being optimistic about getting to SVR in the near future makes the task of taking better care of my health easier to follow.

Wayne and Mark, you are very likely to be there soon.  After being infected for almost 40 years and having gone through many treatments that only worked to make me feel bad, it is hard to even describe the emotions.  The best part is that the old dogma that cirrhosis/fibrosis is irreversible has started to change.  Livers may be able to get better, not normal, but still improvement.The AASLD published their last guidelines for HCV G1 in 2011.  I just read that they are expected to come up with new guidelines early this year.  Based on the discussions I have had with my doctor, it sounds like the combination of active drugs with minimal side effects is practice changing.  I for one, have gone from not being very optimistic about my future to tremendous optimism which at least in part is also related to the fact that I feel so much better physically.

darkstar wrote:

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... In my case, my AFP started at over 200 and now is down to about 20.  

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More good news.  Mine's been steadily climbing for some time.  Somewhere in the 50's at last check, I believe.  Would be very nice to see that drop.

By the way, as you all know, alpha fetoprotein can be a marker of hepatocellular carcinoma.  It is also elevated during liver inflammation.  In my case, my AFP started at over 200 and now is down to about 20.  And yes, in anticipation of the obvious question, I had multiple scans to prove that there was not a cancer.

That's great news, Bob! Such rapid response. Wow! I'm a bit behind you with VL check upcoming. I'm excited (nervous? anxious? optimistic? giddy? worried?). All of the above, probably. Interesting the emotional responses the waiting provokes.  Truly happy you are responding so well.

Keep it rolling!

Wayne

darkstar wrote:

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My week 6 results for simeprivir/sofosbuvir just returned.  Indetectable at 2, 4 and now 6 weeks!

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 This is great news, congratulations! I'm starting the same combo tomorrow and can only hope for the same results.

My week 6 results for simeprivir/sofosbuvir just returned.  Indetectable at 2, 4 and now 6 weeks!