Thanks Groupergetter. I will definitely take your advice. I read it's also important to wear sunglasses, which I usually do anyway, but will be diligent. It's going to be a long summer, but a great one.

I can hardly believe this new treatment - I feel like I'm going to wake up and find out it was a dream. I have spent so many years worrying, especially since they told me I had cirrhosis last biopsy. Saw a picture of me with red palms taken back in 2006 so Whew! Thought I was soon to be a goner. Now I can live to see my son get a job. Lol!

Well, I'm babbling. Just happy to have found this informative, helpful forum and feel so fortunate that I've found the new drug after pretty much giving up hope.

Hope you get more energy to catch some fish!

darkstar wrote:

---

16 weeks of therapy done!  Last dose of sovaldi/olysio on wednesday.  Virus remains undetectable, LFTs as low as they have been (normal) and AFP 3.0 from 230+.  Yeah!!!!!

---

Congrats Darkstar, keep us posted on your changes/improvements after tx.  If you have brain fog I would be interested to know if you find improvement with this.  Also interested if there is improvement with fatigue.  Be well.

Audrey I'm also in FL and never had a problem with sun. These meds definitely made me more sun sensitive.  I wear long sleeves and my fishin hat when out now. Get to the Keys with some frequency mostly fishing and diving.  Not sure I'd have the energy at the moment.   Good luck in your tx. 

This is turning into the Good News Thread! Congrats to Audreyanna and Darkstar.!

 I just had my two week visit with my hepatologist's PA who's in charge of treatments. They wouldn't run a VL until 4 weeks and then they won't  run one again after that until 12 weeks unless the 4 weeks isn't undetectable, in which case they will run another at 8 weeks. When I mentioned that I read about some one getting tested every week, he commented that he hoped that person wasn't on Medicare because he wouldn't want to be supporting that kind of testing with his personal taxes. I once had a gastroenterologist tell me that it was my duty to take interferon to clear the virus because I was on disability and taking public money from Social Security to live (I don't think she realized that SS isn't public money). I changed doctors.

Is there anyone else on Medicare here who is on this treatment? If so..how many viral load tests are you given?

The good news is that my AST and ALT and Alk Phos are all in the normal range for the first time since the 1970s. And in only two weeks of taking Sovaldi and Olysio! And with virtually no side effects!

Of course, the bottom line is being undetectable..but I won't find that out until 4 weeks.  None of the other tests showed any difference, I am still mildly anemic, and my platelets dropped from 82 to 79. 

Anyway I am super pleased about my liver function tests. 

Thanks Matt. It will be tough staying out of the sun since I live in south florida but I will try.   : )

Way to go Barnacle, these are some great meds.  It seems nearly all are UND or near at 4 weeks and most have greatly improved liver panels.  My platelets got in the normal range but the lab failed to do the CBC w/platelet last draw??  Have more blood work coming Monday (eight weeks).  Will be my last until I complete tx.  Start my last bottles of meds Monday....YIPEEE. 

Audrey you go girl, keep on being a happy camper.  Hoping and praying all on treatment get the joy of that first UND......and SVR. 

Hey Audrey

Great to hear that your all approved and soon to be UND, Sovaldi is a super powerful Hep-C killer your will really like this treatment compared to what you have experienced before.

Best of luck in all your treatment, and watch out for to much sun.

matt

Hey Darkstar

Super congrats on finishing the treatment fully funded with UND. Enjoy the next weeks with good healthy eating and positive thoughts on the future.

matt

Well, I finally got a call from the pharmacy and I am getting the sovaldi/olysio delivered to my door Monday and only $30 copay! I am a happy camper!!!

Also, big congrats Darkstar! I'll bet you are happier than ever.  My AFP has gone up steadily also, very scary. Why did you do 16 weeks instead of 12? 

16 weeks of therapy done!  Last dose of sovaldi/olysio on wednesday.  Virus remains undetectable, LFTs as low as they have been (normal) and AFP 3.0 from 230+.  Yeah!!!!!

Hi All,

I'm on day 13 of S/O. So far minimal sx..just some dry skin that is helped with coconut oil after my morning shower. I take a LOT of melatonin (21mg) and 500 mg of 5htp and I sleep very well. I have had cirrhosis about ten years and think I have had the virus about 45 years or so. I'm scared I won't clear but am 1b and the COSMOS phase II final results are encouraging.

I take a lot of melatonin (about 21mg) and 5htp (500mg) plus Calm brand magnesium to sleep and that has been working well so far. 

The last twelve years have been difficult thanks to the unrelenting fatigue and scariness of this progressive disease. I read somewhere that the virus makes over a TRILLION copies of itself every day. I went on disability around 2002, due mostly to the fatigue.

Fortunately, these new drugs act fast! My mind is already sharper and I feel much 'lighter' in a subtle way. 

I was talking on the phone with  Todd Schneider, the founder of Hepatitis Technology products aweek or so ago and he told me that one of his customers planned to get their starting treatment VL on the first day of treatment. Somehow they ended up getting the blood drawn four hours after taking the new meds. Their previous VL a month or so earlier was four or five million. Four hours after taking the new meds their VL was around 100,000 or so. I can't remember the exact figures but it was something amazing like that.

I still find it hard to believe that taking two innocent looking pills a day can beat this virus when I have thrown every natural treatment available at it and it has just kept on chugging along, destroying my liver one day at a time. 

I'm probably not the only person here who has a fear in the back of their mind that I will be the exception and that the drugs won't work for me. This disease is not the most enjoyable for anyone like me who tends to over worry!

You can read more at my blog http://hepcstories.wordpress.com where I talk about what supplements I have taken and post at least every other day about how my treatment is going.

I have Medicare Part D and thanks to my pharmacist and a foundation I have no copay. I had a problem or two with United Healtcare approving the Olysio, and by the time I was finished I had the good folks at Janssen, two doctors, my very helpful and upbeat treatment nurse Karista, the VERY helpful Shelley at Central Drugs (in Porland OR), and my congresswoman involved, and had formally filed a complaint with Medicare. Somehow all that worked! I just hope they continue paying throughout the entire twelve weeks.

Anyway, I am rooting for all the folks in this forum, especially those who have suffered through the horrors of conventional treatments. 

Cheers!

-Peter

Hi Sara,

Yeah!!!! I'm so happy for you and feel your joy! Sounds like it's time to start planning that Hep free future to me! Keep up the hard work, you've got this in the bag.....

Tig

Hi Sara -   Nothing but 's here. You got it this time.

Awesome new!!

The 4 week UND is just the shot in the arm you need to make the last 8 fly by!! Congrats to pl1952 as well.

If it were not such a serious subject, I would say that my treatment has almost been entertaining and somewhat fun at times.(barring the fatigue and headaches) The deep seeded fear that I lived with for sooooo long is no longer there. ( fear of the HEP C and PTSD related to the previous treatment with riba and inf).  The recent advances in the treatment of HCV are  nothing less than mindblowing and exciting to watch unfold here.  I love to read the successes coming in daily.

A giant thank you to those posting on this site and an even bigger thank you for those who have graciously stuck around to share their experiences and knowledge. (Mallani, Tig, Cinnamon Girl, etc...)

3 weeks until EOT and counting.

Rockon!

Way to go Sara!  Congrats on your 4 week results!  That is beyond awesome!!!

Sara wrote:

---

Had my 4 week appt. with my doc yesterday and because of low hb, my riba dose was lowered to 600. 

My vl is UND!!!!

YEAH!  I can't put into words how elated and grateful I am. 

Rob good luck on getting Sovaldi - I have a good feeling you'll be joining us soon on this tx.

pl1952 glad to see your hubby is near UND.

Caryn I've tried numerous sleep aids - rx and otc and they have had either no effect or the opposite effect on me.  Hopefully you will find something that works for you.  When I can't sleep I read or watch tv and find myself ready to go back to sleep within an hour.  I can't remember the last time I got 6 hours solid sleep.

Rach I go to Quest for my blood draws and have my results available to me using their patient access software My Quest.  I login and request results after I have blood drawn and am notified via e-mail (usually within 3 days) the results are available.  

Rybronco congrats on UND!  My doc says EOT +12 UND is SVR for me. 

Thanks again everyone for your support.  4 weeks down and 8 to go.  I'm feeling happier then I have felt in a long time!

 

 

 

---

Great News Sara!   

Had my 4 week appt. with my doc yesterday and because of low hb, my riba dose was lowered to 600. 

My vl is UND!!!!

YEAH!  I can't put into words how elated and grateful I am. 

Rob good luck on getting Sovaldi - I have a good feeling you'll be joining us soon on this tx.

pl1952 glad to see your hubby is near UND.

Caryn I've tried numerous sleep aids - rx and otc and they have had either no effect or the opposite effect on me.  Hopefully you will find something that works for you.  When I can't sleep I read or watch tv and find myself ready to go back to sleep within an hour.  I can't remember the last time I got 6 hours solid sleep.

Rach I go to Quest for my blood draws and have my results available to me using their patient access software My Quest.  I login and request results after I have blood drawn and am notified via e-mail (usually within 3 days) the results are available.  

Rybronco congrats on UND!  My doc says EOT +12 UND is SVR for me. 

Thanks again everyone for your support.  4 weeks down and 8 to go.  I'm feeling happier then I have felt in a long time!

Quick update:

Got labs back from 8 week draw. I guess the story is not surprising anymore......vl - UND!

On this combo, the doctor's office is now declaring EOT + 4 Weeks is SVR!!! Has anyone else heard this?

I suppose as these new combos continue to show the results they are posting we are going to see things like this change.

Rockon!!

We had a good discussion on this topic recently. I'm going to provide the link to that thread, plus some additional info. If you have any questions after reading this, let me know. It's a very important consideration  and Rob is correct, it can remain active for days, even if dry. It's a wise practice to replace all of your grooming items, like toothbrushes, nail clippers, etc. There are ways to sterilize things like clippers and scissors, but soft items like toothbrushes must be replaced. Once I started treatment, everything went in the trash and my clippers and nail scissors were boiled. You can most definitely reinfect yourself or others with contaminated items. 

Tig

Cleaning/Replacement Grooming Items  (Forum)

Household Transmission

HEPATITIS C - TRANSMISSION BY TOOTHBRUSHES: A MYTH OR A REAL POSSIBILITY?   (Old but valid)

Hi Caryn,

I did read that HCV will die off at approximately the four day mark. I wish I could remember where I saw that to provide you with

a source. Hope that helps?

I don't know about the re infection stuff With razors and tweezers. I just have no clue on this. I do know I had this virus for a long time before I knew and my kids used all of my stuff  There is no way possible to tell when you are not detectable. 

Who do you use for your lab? I have labcorp and have access to my blood work. I could not even imagine trying to get my results from my doctors office. I get exhausted just thinking about it. 

Can a person reinfect themselves with razors or toothbrushes.  My doctor did not even mention this.  Started to think about this when I was using my tweezers this morning.  I am now on Day 7 with Sovaldi and Olysio.  Noticed no information on this.  Just wondering what other people did.

Also did people have problems getting their blood results back.  My Doctor nurse says it is not important.  So I am digging up the laws to give her "patients rights. "  Can't seem to get in touch with the doctor, she has apparently gave this one particular nurse all the power.   Causing me anxiety for nothing.  She says, when your own sovaldi/olysio that they don't bother with the amount of virus in your blood.  To me this is nuts.  In my opinion, you need to know a baseline. 

Thanks all!  Very confusing indeed!  The anxiousness almost took me out this morning...Thanks for the explanation everyone -- so appreciate it!

Hiya -   Tig be right. What gets me about the reporting is they put NotDet and Detected on the SAME line. So we're all anxious as hell to see the result, and we take a deep breath, and we look... and there it is! Not Detected!, but wait... there's also a Detected?!? What the....??  

You're not alone. And hubby's gonna be there right quick. Just you wait and see. 

wayne

Yes, I agree with Tig, that`s how I would read it too, although it`s very confusing the way it`s written!  The PCR viral load test that your husband`s lab is using has a LLOQ (lower limit of quantification) of 43 IU/ml, so they can tell that the virus is still detectable but the test isn`t sensitive enough to be able to measure the exact quantity of virus particles present below that level. 

It`s still a good result though and so close to being undetected! 

Oh man, thank you Tig!!!

Hello,

I just hate the way they write that stuff! They make it unnecessarily confusing for everyone. My impression is yes, he's still detected but he's lower than 43 IU/ml. Had it been quantifiable, there would have been a number (quantity) included (viral count). The Lower Level of Quantification in your husband's test is 43, so below that they can't quantify (a specific number) the total viral load. In this case, the test indicates the viral load is detected but below 43 IU/ml. The tests now are so sensitive they can test down to <7 if the lab has that equipment. The good news is your husband has had a huge reduction in his viral load! This is absolute proof the treatment is working and I would bet my last tooth that he will be completely undetectable on his next test. This is a sign of good things to come!! Tell him he has reason to be quite happy!!

Tig

Hey guys, just got the results of my husband's 4 week viral load and because I'm super anxious and reading so much into this thought I'd ask you because the dr. hasn't replied yet:

So he's still detected?

Hi Caryn,

Unfortunately, insomnia is a big side effect from these drugs. I've seen some reports of Sov/Oly causing it, but the problem is well known from Ribavirin. I had issues with it too, but I was so tired anyway, from the anemia, I found myself falling asleep from shear exhaustion during the day. I think the ability to take naps will help you greatly but it adds to the sleepless nights in some cases. But if you have to resort to naps to get through treatment successfully and rested (somewhat), do it. Some people also adjusted their dose times. If you take the Riba earlier, it affects you less at night. Lastly, your doctor will be aware of this and most are ready to prescribe a sleep aid during treatment. The one I've seen used often is low dose Ambien. It offers good results, without the usual hangover left by the benzodiazepine based drugs. Good luck!

Tig

Is anyone having issues with sleep on S/O/R?  As the days go by, I am sleeping less and less at night. I have 0 reason to be up at 4 am...lol. If so, I am wondering if there is a safe, light prescription or non prescription that wont leave me sleeping 12 hours or with a hangover that anyone may be taking. I have tried benedryl with no luck.  

Groupergetter, congrats on UND!!!  Away for couple of weeks but checked in for a quick look and saw your good news. 

Hello All, I'm obviously feeling better as I'm doing other things than posting, but out of respect I'll update ..........47 days of 84 complete I have more energy than I've had in so many yrs I can't remember! Labs are good most important is AST and ALT in normal range. Still no VL test and was told they won't even bother until Sept. Or 12 weeks post treatment because everyone of the people that they have tested at 4,8 and 12 weeks has been UND. Only bad part is I'm still stuck with this battered and beaten liver. So now I'm researching stem cell treatment....expensive out f the country to get it done and no insurance coverage...but do any of you knowledgeable folks know anything about that? Sorry for asking that in this thread if that is a no no.

Yee haw! Gonna be a great summer if we get a spring here this year first , still snow on the ground here just north of Mpls and it's 59 degrees......     :-\

Duane

Hi Rob,

Is there a reason you are limited to these two hypertensive medications? I also have hypertension and was taking Atenolol and Lisinopril to control it. Some of these meds are harder on the liver than others. As I progressed with treatment, I began to experience problems with increased nausea and vomiting when I took these medications (including others I was prescribed). It came to a point that I was risking the loss of my treatment drugs (vomiting) and I had to determine which if any of my "other" drugs were responsible. I talked to my doctor and I discontinued the Lisinopril. My BP remained stable on the Atenolol alone. I also ended up stopping a gout medication, Allopurinol and a nerve pain drug called Neurontin. The combined effect helped control the N/V greatly and the conditions I was taking them for haven't entirely gone away, but they are now manageable without medication, aside from the BP drug Atenolol. I do read that your Amlodapine isn't the best choice available for people with hepatitis. One of the side effects of it can be increased liver inflammation. So if your doctor can suggest a replacement (if required), I would consider it. It is certainly worth discussing. I'm amazed that treatment has not only improved my liver health, it has improved my overall health! That was an unplanned, but very welcome "side effect" of SVR!!!! Yeah baby

Tig

Hi All,

As many of you know I have been pursuing Olysio/Sovaldi. My Dr. Called yesterday and said Johnson and Johnson are going to help me with Olysio. I'm really hoping Gilead helps with Sovaldi and I'm not getting my hope up, again? 

I do have some questions for those of you on this treatment. In the event I'm able to obtain both meds, are any of you taking Losartan Potassium for high blood pressure? I have high BP that is hereditary- thanks dad. Lol

Reading through the Olysio drugs interactions, it looks like I need to find a replacement for the Amlodapine I'm taking with Losartan or I need to stop taking the Amlodapine 10mg and see if the Losartan is enough to control my hypertension to normal ranges.

Hopefully all my worry about getting this combo isn't for nothing as Sovaldi could still fall through and my insurance isn't covering either one at the moment.

Im so happy for those of you on this awesome treatment! Thanks so much for posting your uplifting information on your Tx success! 

-Rob

Thank you Greg and a big congrats to you for reaching UND! 

Happy Easter everyone

Hey Greg,

Fantastic news buddy! Isn't that a great feeling? The anxiety is high and when you see that word "undetected", it leaves you feeling like you would explode if allowed!! Congratulations and on to SVR!!! Good luck dude, you deserve it 

Tig

Groupergetter wrote:

---

Sara, I pray you have the same results as so many others here. At 25 days my vl was 16.  Got my latest labs back today and   UND     YESSSSSSSSSSSSSSSS!!!!!    Needless to say I am very excited AGAIN.  I was claiming UND last results even though the results didn't confirm it. Knew it was coming.  Congrats to all on this tx.  It's great to have a real hope of SVR.  See the Gatorman is continuing in that direction which is also great news.  Incredible that so many are close to ending the endless cycle of fatigue, and more fatigue, and brain fog (I hope)  A true reason to rejoice.  Thanks to all here for sharing. 

YEEEEEE HAAAAW      That from an old fart who hopes to feel young again.

---

 Yea!!! Great feeling I bet! 

Congrats, Greg. It's a great feeling, isn't it? The fountain of youth is right around the corner. ;)

Sara, I pray you have the same results as so many others here. At 25 days my vl was 16.  Got my latest labs back today and   UND     YESSSSSSSSSSSSSSSS!!!!!    Needless to say I am very excited AGAIN.  I was claiming UND last results even though the results didn't confirm it. Knew it was coming.  Congrats to all on this tx.  It's great to have a real hope of SVR.  See the Gatorman is continuing in that direction which is also great news.  Incredible that so many are close to ending the endless cycle of fatigue, and more fatigue, and brain fog (I hope)  A true reason to rejoice.  Thanks to all here for sharing. 

YEEEEEE HAAAAW      That from an old fart who hopes to feel young again.

Thanks Lee, Caryn, Rybronco and Wayne! 

I have my 4 week visit with my doctor on Tues.  I'm feeling better then I have in a long time.  The double whammy fatigue with my co-infection has improved and I can't wait until I can get back out in the sun again.  I don't want to sunburn so I go out early am and evening, knowing the outdoor activities I enjoy so much will still be happening when I'm done with treatment.  The few times I've pushed myself, it felt like I was fighting for breath and my heart was racing - I presume this is from low hb. 

Hi Pericles and congrats on starting Sovaldi/Olysio/Riba.  Turn your concerns from failure to staying the course, drinking lots and lots of water and using lots of sunscreen if you spend time in the sun.  Look at me - 61 - co-infected - cirrhotic - non responder to previous treatment and I went from over 8 million viral load to 16 in 2 weeks!  I hope this helps you see your glass at least half full!

Hi Pericles, glad to see you got started on this.  Trusting your labs will show improvement as others here.  This combo seems to be working well, with very manageable side effects.  It is great to see the optimism and hope these new meds give.  Onward to SVR.

Pericles .. I hear ya.. Unfortunately I find myself doing that myself too!

Many thanks, Dee Dee.  I see from your sig that you're taking Sovaldi/Olysio and wish you the best of luck as well. 

In the final results of the COSMOS clinical trial that were recently made public, both Sovaldi/Olysio and Sovaldi/Olysio/Ribavirin had a 93% SVR rate for genotype 1a (the Ribavirin made no difference).  Granted 93% is very high, but it's not 100%.  Glass half empty person me, I'm dreading being in the 7% outliers. 

Praying for success this time Pericles! The meds your taking are really fantastic, I'm confident you'll win the battle this time!

Thanks so much, Tig, for the welcome and the good wishes.

After enduring the highly unpleasant side effects of a 6 month protocol of high-dose beta interferon injections in 1992 when I was first diagnosed, and then some 10 years later enduring 6 months (or was it 3 months; I forget) of alpha interferon injections (non-peg, with no other drugs), I've waited all these years for an effective all-oral treatment to become available.  I just did not want to subject myself to interferon again.  Meanwhile, my hepatitis progressed to early stage 4 (where I am now).  If these game-changing drugs (particularly Sovaldi) had not become available now, I would have no choice but to endure the peg-alpha/ribavirin/boceprevir (or other protease inhibitor) combination because I just couldn't wait any longer before onset of decompensated cirrhosis.  To be honest, my overriding concern at the moment is that this too will fail.  So I very much hope you're right.    

Hi Pericles,

Welcome to the forum! You've started an extremely effective protocol and your chance of success is quite high. Wishing you the best of luck!

Tig

I'm taking off-label Sovaldi/Olysio/Ribavirin.  Started on April Fool's Day.  Praying it works.

Hi Sara,

Great 2 week numbers.  You're on the fast track.  UND for you at next check, no doubt.  The 3 pt Hb drop is significant and bears watching. Don't worry about the bilirubin.  You're doing great!

wayne

Sara,

Great Looking labs!!! Congrats!

You are well on your way.

Rockon!