Sovaldi+Olysio question

[48weeks]

Starting to see more people go off label in this forum with this combination. Do most of you have cirrhosis or do some of you have a less urgent need? Also are any of you gt 1a's prior protease inhibitor (PI) experienced and still going for it? I got the impression that there was not much data on this combination for those of us with PI experience.

[Sarah1949]

This is a nice list. Thank you.
My doctor gave me nothing but an appointment in two weeks. :)
I'm wondering why they recommend so much vitamin C? Because too much is not really good for you, but I think up to 1000 mg is fine. Just curious.

[keepingOnkeepingOn]

The doc has to fill out a criteria questionnaire for approval to send to the Ins Co.

[patra_]

Wow, is my typing bad!

That should read, 'If not, where are you in the post treatment period?'

Pat

[patra_]

If I understand you correvtly, you have had you 12 week post End of Treatment Labs and it is clear?

If so, Please go to nan535's SVR or Relapse site and post your results!    Helps us all, and maybe, someday, someone can find patternps which will help us all, or others, in the future:

   http://www.medhelp.org/posts/Hepatitis-C/SVR-or- Relapse/show/2281769

And congratulations on your SVR!  

If not, where pare you in the post rewatment period?  Pat

[bobbyguest]

I was on Sovaldi, Ribavirin for for 3 months for hep c and seen the dr. a week ago and the hep c is completely gone. Good luck to all. Robert

[1debbiek]

Have you had any side effects from your treatments. Looking for someone to tell me about there side effects of this treatment please

[livlovlaugh]

Hi Samanths1234... Don't know what your doctor has told you to do during treatment. Maybe the list my doc gave me will be helpful:
Drink NO LESS than 3 liters of fluid per day- water, decaf tea, juices & decaf soda. If urine is dark in color you aren't drinking enough fluid. Avoid high amounts of caffeine containing beverages, as these may cause dehydration. Japanese studies have concluded that green tea is not only healthy but healing for your liver & has powerful antioxidant therapy.
Increase protein intake during treatment (no less then 80 grams a day). Foods high in protein include tuna, cottage cheese, beans, lentils, soy products, tofu, edamame beans. 100% whey protein powder or soy protein powder to make smoothies. you can also add protein bars.
Protein can be very constipating..Please add stool softener of choice to your diet. Avoid high fat content foods that are also high in protein. Snack on food that contains protein (peanut butter on celery), protein bar, etc.
It is recommended that you take vitamin C 1000 mg a day. Get a flu shot. It is recommended that you take a multi-vitamin daily such as Centrum Silver. Do not take vitamins containing extra iron. Vitamins A & K are fat soluble & are stored in the liver. Iron is stored in the liver. If you already exercise do not stop.
If you are outside in the sun, please use sunscreen of SPF 45 or greater. Meds can cause photosensitivity, or easy deep sunburn. Be sure to cover your earlobes front & back, back of neck, tops of feet, backs of hands & face.
Hope this helps. If you already knew all of this maybe it will help someone else. All the best with your treatment.

[samanth1234]

Thank you for your help - just posted question.  I appreciate yur help.

Samantha

[flyinlynn]

Hi Samantha

This is an older thread started in January this year and your question probably won't get as much notice as you would want.

The best way to get comments from the folks here is to click the orange link near the top of the page on the right "Post a Question" that way your question will get more attention and answers.

You could just copy and past your question if you like and ask away.

Good luck
Lynn

[samanth1234]

I just started Sovaldi/Olysio combo treatment 5 days ago.  So far my only symptoms are fatigue (I was tired before from hep c), really bad headaches and some brain fog.  I try to drink a lot of water, keep calm and try to move about and not think about it.
My viral load when I started was 15,000,000 and everyone including SS Disability tells me that that has nothing to do with feeling extremely fatigued according to their records.  I had to quit my job because I could't function at all and am living off my savings.  The expert doctors at SS Disability tell me hep c is not a reason to be disabled.  
I am so happy to be on this treatment and hope it will work. It is a horrible disease and a silent one that people don't wont to discuss.  Not to mention, everyone has told me the symptoms of hep c (before treatment) are all in my head.  Nice to add insult to injury.  I wish everyone with this horrible disease treatment and a cure that will work.  I am hoping this combo treatment Sovaldi/Olysion will work for me (have lung problems since this is my only option).  Does anybody have any words of advise while on treatment?

Samantha

[Rbeth]

Hi Nan,
Thx for your comment/response. When asked how could "it be" in previous comment, & to give specifics, I suppose that was what I thought you meant :)
Yep, I'm no doctor either. Experience is a great teacher. I have been taking good take of my body(liver), grateful.
I also didn't know for 20+ yrs. I fought to find out.
In process of getting all reports etc.. Appreciate your well wishes!  Same  to you & community. Been flying alone for awhile~ no self pity~ just was exhausted. Peace

[nan535]

We are not doctors here - so any advice or question we raise is based on personal experiences only. My experience is as a caregiver to my husband who only found out he had this virus 30 years later (blood transfusion in 1979).
An effective treatment would not have been available sooner for him anyway but had he known sooner he definitely would have taken much better care of himself and his liver.
What I do know is there are (and will be) better treatments now that will cure you. So definitely seek out a good hepatologist and hopefully you can start treatment very soon and be cured before further damage is done to your liver.

Best wishes as you move forward towards better health.

Nan

[Rbeth]

First I want to say thank you for posing a hard question to me that I have asked GI several times without adequate answers. I am extremely educated, medically, although now that seems oxymoronic to my first sentence. I don't know the specific answers to the questions you posed & that stinks. My doctor is top GI doc @ Jefferson Univ. in Philly and have realized in past 2 years he is negligent, lazy, NOT HIS LIVER, gender biased & actually hasn't done a damn thing to enhance my healthcare... always playing it down(HCV). He told me GT 1a was a poor responder to tx years ago & because I had some auto immune problems & very high VL w/ normal LFT's I would not fare well with Peg I & Riba. 1st bx in 1999 (time of dx) had HAI 1 - some infamm & changes
2nd bx in 2002 -HAI 2 same with some early bridging & portal inflam 3rd bx 2005? I cannot locate but was about the same- Dr C said my liver was consistent with slight HCV changes but fine, nothing to worry about. Moved to Fl to care for parents dad passed 2006- mom 2010. On trips to philly asked for bx in 2010-no 2011-no 2012 I asked for MRI ( lots of weight loss & gastric probs.) MRI showed arterial shunts, possible altered perfusion prob of HCC #3. I freaked, he said we will repeat MRI IN 6 mos in 8 mos next MRI - same changes, NO altered perfusion seen prob artifact on prev no prob of HCC. No fibrosis detected. ??? Had MRI this April 2014 which I'm reading as I write again w/wo contrast- 1. Multiple peripheral foci of arterial hyper enhancement likely representing arterial shunts, probably benign, LI RADS cat 2 prob benign & says NOTHING else re: liver -all other organ ducts abd vessels- patent & normal?? The tech took 963 images! Dr C said MRI looks good- no worries. I , once again looked at him & said" get another radiologist to read it could all previous bx & MRI's be wrong?" He literally smiled & said he would but he thinks all is doing well - just consistent with chronic HCV. During this visit he also did endoscopy & multiple bx(4 mos nausea & 16 lb weight loss) he told me bx report just showed some gastric inflammation & there were no abnormalities. My daughter, a physician who practices with my endocrinologist rec'd pathology report- which showed 2 bx positive for Barrett's oesophagus. This should be repeated in 1 year & prophy tx for severe reflux should be initiated. She spoke with the pathologist who confirmed this with her by phone. She then called Dr C & slammed him a colonoscopy by phone... Well I've certainly just journaled myself to tears, as I aggressively fight for others healthcare & have obviously let my own more than go! My daughter is addressing his inactions to chief of GI dept & further for hopeful sanctions, I am searching for new "real" hepatologist , but he still treats thousands of other GI/ hep patients. I'm sorry Nan, for this book, but I most certainly needed to see it in writing. So, thank you, my friend. I will actively pursue fighting for my own healthcare again, as I did for MANY years & then I guess I took care of my folks & mostly got tired of labor ing for my own care. I am now, thanks to your question & past month of reflection preparing to go back into battle with confidence, a smile, & tenacity!! Must find a doctor first & foremost.  I am grateful for you & group
Randy

[nan535]

"3 biopsies 1999-2005 PI, bridging, varices, shunts- no fib no cirr. MRI's past 2 years have shown this."

I am a little confused with your post. Perhaps you can explain. If you had varices, shunts,  bridging and portal inflammation which are all signs of advanced fibrosis (if not cirrhosis), then how could MRI's the last two years show no fibrosis and no cirrhosis?

As for treatment options, what does your doctor recommend? You wrote that you are a "1a poor responder". Which treatment did you try?

If you will answer these questions, you may be able to get some helpful responses.

Nan

[Rbeth]

I wrote I had PI...I meant  portal inflammation not protease inhibitor . So sorry if that confused picture!' Thx

[Rbeth]

Sorry, auto correct hit posted :) anyway is 1a being treated with just S/O? I desperately want to say bye bye to HCV & am willing & excited to try this! Been a long 15 years , however have learned a lot, particularly faith, patience & compassion. I love you all dearly~ thank you for paving the brave road for me to finally try, if anyone has 1a answer re:S/O, please share~

Prayers & abundant blessings to SVR & health,
Randy

[Rbeth]

Just Wow! So encouraging & so thankful to hear great news for so many! Me- transfusion after childbirth, 38 years ago. Began feeling yuk in 1996. Dx in 1999-HCV variant 1a. Other autoimmune issues- decision made not to treat R & I. 3 biopsies 1999-2005 PI, bridging, varices, shunts- no fib no cirr. MRI's past 2 years have shown this. LF usually normal always, slight fluctuations, last VL 17 million :/ Have been terrified to treat - 1a poor responder, watched friend die doing R&I, weigh in at 105 lbs normal - weigh 88 lbs after last gastric episode but gaining back. Feel lousy lots but have been wkg for past 10 years again. Seems from this posting S/O would treat 1a w/o Riba

[zarmar]

I am week 10 of 12 taking S/O.  I am 1a, no prior Tx, and interferon ineligible.  My hepatologist was able to get approval for me for the off-label combo with no denials.  Doctor is a recognized practitioner at a liver disease/research/teaching hospital, in this region, and as others posters have said, this carries weight with insurers.  My ins. is BCBS, and pharmacy --  they have been a great support -- is Walgreen's Specialty.  I was UND at wk 8, and LFT have been normal since wk. 4 for the first time in years.  I am ineligible for a transplant. If I relapse after S/O, I will hope for approval for the single pill combo when it is approved.   With advanced cirrhosis, I will treat with any safe effective Tx until SVR, and to do this for as long as necessary.

[Damndentist]

I am approaching week 4 on the Solvaldi/Olysio combo. Strangely, my liver enzymes were normal after 20 days and I have cirrohsis. Will Doctor will check 1A virus load after week 4. My insurance is BCBS who initially denied approval but then approved with additional information. I have tried interferon, then interferon and Ribavirin, then added Incivek and none of these treatments worked. I am very hopeful this time. No side effects so far.

[chris11550]

I too have aarp(united and just got denied, I am in the process of appealing together with my doc, looks like the ins. com's pushing interferon treatment which has horrible side effects, don't know why they would force us to go to hell to get healed.
what did your doc have to do to get approved?   thanks chris

[flyinlynn]

Hi NReds

I have Express scripts. I paid $30 a month for both $5 for one and $25 for the other. My total cost was $90. I was und at 4 weeks and at EOT but from what I hear everyone becomes undetectable on the Sovaldi Olysio combo.

The important test is 12 weeks post TX so I will know sometime after my blood draw on Sept 2 (I am gussing about 10 days or so wait for results) if I have acheived SVR or not.

Good luck to all hoping for a cure
Lynn

[Sovaldi13Newbie]

Forgot, denied the first time. And while I was appealing Sovaldi told me they would give it to me than I won my appeal and Sovaldi told me -- yeah, youre insurance is paying. My doc also told me that I will be able to do a Sovaldi treatment again even if I relapse this.

[Sovaldi13Newbie]

Finished 3 months of Sovaldi Olysio...today! YaY! Thought the sides were worse in the beginning, but very doable. Fatigue, headaches, anxiety (for a few hours after I took it, that would come and go) and insomnia but nothing that was horrible.

You know what I liked best? Not feeling that damn ache in my liver area that so many docs say shouldn't hurt, hah! Guess most are catching on. Have had this over 30 years and this is the first time I've treated. Figure it this way, they are just tweaking this off label business, we're the guinea pigs, some of us will SVR, some of us won't but even if I don't...I've tasted how nice it is not to have this dragon GO for 3 months which will only empower and enable me to do the next go round that is coming soon.

Had 3 million viral load, went undetected in 5th week or so. My LFTs (liver function tests) averaged around 50-60 now they are in the teens and low 20s. Completely normal. I'm 60, 1b and my last biopsy (last year) was stage 1, low liver damage. I'm 20 pounds overweight due to prednisone for another condition, but I'm 145. 5'6. Maybe now I can exercise more and get my weight down. I eat very healthy and have done so for 30 years.

Don't drink or smoke. I had a lot of symptoms from the hep c and it was getting worse as I aged. My hepatologist told me that I was one of those people where the virus itself causes mischief due to my immune response, but it wasn't attacking my liver that badly, this happens to women more than men, perhaps a hormonal connection.

So now I sit and wait and see what my viral load is in 4 weeks, than 6 weeks, than 8, then 12 (if I get there) I'm just going to wait and hope. And if I relapse, dust myself off and on to the next thing. (Not that I won't be disappointed, I will be) but I figure it wasn't torture like the old SOC for one year (love those brave souls, took character to do that), I can do this again, easy. I hope we all SVR!!!!

[NReds]

I am at the end of treatment.  Cigna paid fir all but $21. After 2 weeks my viral load went from 7 logs to 1. I am praying for 0 logs at the endof treatment