That's so awesome! A congrats is definitely in order for you. I should be finding out by the end of tomorrow if I'm approved for this same regimen. Good to see such incredible results without the nasty side effects!

Good for you!

Wooo Hooo, Yeee Haw. and all that good stuff.      Had a doctor's appointment today and my vl came back at 1 (one) uno above detectable.  This was drawn 4 days prior to week four so I'm gonna cheat a bit and claim UND  yesssss.   If you couldn't tell I am somewhat excited.  All my numbers are improving or at a point where they are relatively good and stable. Still need the platelet count to rise (in low normal range), but fully expecting 250-350 in time.  

Thankful to be on this regimen.  My doc said almost everyone they've treated is UND with no relapse.  While I was scheduled for more labs through the 12 weeks, if everything is good at my next draw that will be it until tx is finished.  SVR all the way baby.  What a relief.  Hoping for a foglifter, and further improvement with the neuropathy.  Confident it will come.   

Congrats Darkstar on your continued UND. 

Groupgetter, glad to see your numbers improving.  Let us know when VL results come in. 

Hey Greg, 

Those numbers are great! Your liver is already showing good signs of improvement and you know with numbers that low indicate you have a much happier liver! Yeah buddy! Keep up the good work and positive attitude. I'm expecting to hear some very good news this coming week. Good luck!

Tig

Had my 4 week labs drawn Friday (4 days early) as I have an appointment with my doctor this week.  #'s continue to improve.      Got the CBC and Liver panel back, ALT 29, AST 30 and platelets finally getting into the normal range.  Hoping my vl will be UND when the results get back, but won't be too concerned if they are continuing a downward path.  Very thankful to be on this regimen.  Appreciate all here for sharing the knowledge, experience, and words of encouragement.  The hope of SVR is looking brighter each day.  

Week 12 labs.  Liver function tests are still normal and as low as they have been.  Virus still undetectable.  Four more weeks.  In response to those who have talked about energy level.  I believe that liver inflammation makes you feel bad.  Whether or not viremia adds to this, do not know.  But, My energy level today compared to 12 weeks ago....no comparison.

Thanks everyone for the encouraging well wishes, I may be faking myself out but I really think I actually am starting to feel better!

But Laura, you said chills I've been dealing with that for some time (but winter won't end in MN this year lol)

I didn't think of it until you posted that, but I to seem to be very cold and have the chills constantly, and I guess now that you posted that it is more intense and noticeable since starting tx.

With all the other problems I deal with that seemed like a minor nuisance and I just dismissed it.

However I am a little concerned about those times that all of a sudden I feel like running out and rolling in the snow because of a major hot flash...thought them things were for the Mrs.....LOL

I'm wondering if it's a possible thyroid issue? Anyone else go thru those?

I'm a bit under weight for my frame thanks to this bugger and I don't have any other know health issues like diabetes or anything, I eat the low sodium diet and am as active as I have energy for.

So that would really be an added bonus for these chills and flashes to be gone along with the evil C once tx is complete.

Tig not sure that I can fill the rx before a certain period, I've tried that with my diuretics and they say it's not ready to be refilled yet, it's like one week before the number of pills would be gone before they approve the refill.

I was able to go on line request the 2nd refill when I had 8 left of each Sovalid and Olysio and I was emailed back that they were ready for pick up next day.

They better not screw with my last one in a month, and so far other that the several denials to start I've had no problems....If I do i'm calling in Kristen ( I think that was who was fighten em hard) in another thread???

Well wishes to all  !

Duane

Hi Laura,

Welcome to the forum and you posted just fine. :)  Others on your combo will be along to offer more specific advice.  I'm doing the same meds + Riba, so in a little different category. Overall, those on the S/O combo seem to be doing quite well. There is a lot of variance with side effects, but problems seem to be minimal. Be sure to take the Olysio with food and keep yourself well hydrated throughout the day. It will help with the headaches. 

Feel free to introduce yourself in the New Members Area (Start a New Topic) , if you care to. Any relevant details like genotype, treatment history, etc. would be helpful. More members will be likely to see you there. This is a very active thread and one can get buried fairly deeply in short order. Do hope you'll keep us updated as things move along. Everyone here is friendly and helpful. Support and information sharing is what it's all about.

Best of luck to you,

wayne 

Tig56 wrote:

---

I want to echo all the congrats to you new UND's!! This is fantastic news and as a repeat treater, I saw so many hopes dashed using the old SOC's. To be here and witness this almost overnight turnaround leaves me speechless, almost! I'm so thankful that those of you just starting the treatment process and currently underway (utilizing the new DAA's), are getting this incredible opportunity to turn your life around. Just one year ago this wasn't possible and nobody knew when it would happen, outside of "maybe next year or after". I'm thrilled you're all doing so well. Keep up the good fight and spread the word about this fantastic new  treatment! 

Good luck to all

  Tig

---

I echo and agree everything that Tig stated. It certainly is an incredible opportunity to turn life around that looked fairly remote this time last year. Congratulations to everyone who are or soon will be UND!

My apologies if I don't do this correctly.  This is my very first post.  I just started the Sovaldi/Olysio combo yesterday.  I am only on day 2 but I have been having some trouble concentrating and focusing.  Almost like my eyes don't want to focus.  I have chills and a mild headache.  I can be a bit of a hypochondriac especially since interferon treatment was so unGodly horrible so I wanted to see if anyone else had side effects similar to these and if they go away, get worse or stay the same through treatment?  For those on treatment did you find that you could hold down your job or was it necessary to go on Short term leave?

Thank you for any and all responses.  So grateful to see I am not alone!

Laura

Thanks, Tig.  I just hope that SVR is soon to follow.  You all are so supportive on this forum.  I'm very grateful. Thanks so much! 

I want to echo all the congrats to you new UND's!! This is fantastic news and as a repeat treater, I saw so many hopes dashed using the old SOC's. To be here and witness this almost overnight turnaround leaves me speechless, almost! I'm so thankful that those of you just starting the treatment process and currently underway (utilizing the new DAA's), are getting this incredible opportunity to turn your life around. Just one year ago this wasn't possible and nobody knew when it would happen, outside of "maybe next year or after". I'm thrilled you're all doing so well. Keep up the good fight and spread the word about this fantastic new  treatment! 

Good luck to all

  Tig

Well, congrats to you too, Rybronco! Glad you continue to be UND, as well.  From your lips to God's ears about that cakewalk.

Maddie,

Congrats on the continued UND. I love to see them UND's from everyone trickle in. 

Cakewalk from here! Rockon! BTW, I also joined the ranks of UND yesterday at 4weeks. Whoo Hoo.

Thanks DeeDee.  Wish you UND on the 8th.

DZdayscomin- Glad that your symptoms are lessening.   Liver enzymes and INR much improved.  Very encouraging for sure.

Looking good, Duane.  Meds are clearly working for you.  Great to hear the edema/ascites is improved.  Love that INR drop, too.  That will do wonders for a MELD score.  One word of caution about Express Scripts..  they've been jerking some of our members around mid-treatment, particularly regarding the 3rd month's refill.  Please stay on top of that with these guys.  Order your next month's meds as soon as you can and get them in hand.  Better safe than sorry. ;)

wayne

Been a while since posting before today, had my 1st labs about a week ago that was about 14 days or so in.sovaldi and Olysio Results are good as far as LFT'S ....ALT 111 to 55 AST 139 to 45 INR from 2.0 to 1.4 Platelets 40 to 62 Alk phos. Still high 252 to 248 albumin and total Billy not much change but in the right direction. Also noticing decreased edema, and acites...and ya gotta like that. No VL tests yet, next labs next week. Just refilled both rx's for month two and they were ready next day thru Allina specialty pharm. and are in hand.(express scripts ins) I guess I'm pretty lucky at getting the meds so I pray the results are the same using them. Only sx is I'm really dealing with major fatigue but then can't sleep...what the heck! I'm very confident this is working and I will post those results too. Peace

maddie wrote:

---

Got my 8wk on tx vl....still UND.  Phew!  I hold my breath every time.  Just finished week 10 of tx.  Normal liver enzymes.   I know the real test comes after tx ends, but it sure does help me psychologically to know its still undetected.

---

 That is great news Maddie!! I am hoping to get good news after my first test which is April 8th. I just started on 3/21/14 so I guess I'm being just a little too anxious!! lol 

Got my 8wk on tx vl....still UND.  Phew!  I hold my breath every time.  Just finished week 10 of tx.  Normal liver enzymes.   I know the real test comes after tx ends, but it sure does help me psychologically to know its still undetected.

Dee Dee wrote:

---

My Doc just told me (via voicemail, missed his call) that  I do have the NS3 Q80K and that I shouldn't worry because he was going to have me do my treatment just as planned. He said it just meant that if I were to stop doing my treatment the virus could become more resistant. From what I read having this lowers my chances of this treatment working for me. I'm so bummed out I could cry. Anyone here have the same thing and still had luck with their treatment?

---

 Hi Dee-  I too have the polymorphism and am taking S/O.  I reached UND after 4 weeks on meds.  I know of a few others that have it as well, some reaching UND at 2 weeks and the rest at 4 weeks.  

Tim,

A word of encouragement about having that little bit of bug at 4 wks...  My 4 wk VL was 62, 8 wks was UND (happy boy ). We won't all fit that perfect RVR profile we'd like to see. I'd wager I was undetected much closer to the 4th wk than the 8th and you will be, too. But we'll never know with VL checks so far apart. Very sympathetic about the waiting. Get it done again in couple of weeks if you can.

wayne

OldenSlow wrote:

---

Dee Dee,

I'm not a Q80K'er, but I think you've little to worry about. It's why you've been placed on a combo of DAA's. Yes, Olysio is problematic re: Q80K, but Sovaldi doesn't have Olysio's limitations and should take care of things for you. For more detail, take a look at Malcolm's post on "Understanding RAV's"...

http://hepcfriends.activeboard.com/t56863437/understanding-ravs-effect-on-treatment-and-re-treatment-sele/

 

---

 Thanks so much .. going to keep the faith.  Never give up.... 

Dee Dee,

I'm not a Q80K'er, but I think you've little to worry about. It's why you've been placed on a combo of DAA's. Yes, Olysio is problematic re: Q80K, but Sovaldi doesn't have Olysio's limitations and should take care of things for you. For more detail, take a look at Malcolm's post on "Understanding RAV's"...

http://hepcfriends.activeboard.com/t56863437/understanding-ravs-effect-on-treatment-and-re-treatment-sele/

Tornado these meds rock...dont worry about that low number your next labs will be undetected and so will all the following ones.. Stay strong brother

I've heard about the issues with the new DAA's and sun sensitivity, but haven't read too many first hand reports of it. However, I can tell you from personal experience and that from friends, that Ribavirin is a different story! Don't mess with this stuff! It does build up and takes what seems like forever to clear when finished. I've been burned by it and into month 4 EOT, I'm still burning after just an hour or two outside. My face is still red from a brief outing last week. Be safe and believe...

Tig

Way to go Rybronco, a viral load drop like yours is dern near a miracle .     Hoping we both get UND next labs.  My doc ordered my second draw a few days before 4 weeks as I have an appt. Apr. 2nd.   There are a lot of happy campers out there taking these meds.  We are fortunate to be some of the earlier on this regimen.   Hoping sometime during tx the fatigue will get a bit better. Been feeling like crap for years, guess a few more months won't matter.   I definitely had a hypersensitivity to the sun.  Was working in the yard with no sunscreen and I could feel it happening, to stupid to get out of the sun or put on sunscreen.    Won't happen again.  Hoping and praying for SVR.

Just had labs drawn today. I am anxious as can be.  Baseline was 7.8mm, 2week was 80, 4 week ??? All of the great reports I have read lately lead me to believe this can actually happen to me as well.

I am into my 5th week now. Labs were drawn late due to out of town work stuff.  I pray for the UND!!!  I will post when I get them.

I was out in the sun Saturday without sunscreen and it was very intense sunlight.  I was terrified that I would be a french fry due to the meds, however, just a little normal color on the cheeks.  Maybe the photo sensitivity is individual or perhaps just in the first few weeks of tx.....?????? Still, I won't forget the sunscreen next time. I know people were wondering why I was looking in the mirror forty thousand times that day. lol

I'll ask the doctor, Saturday 3/29/14 will be 6 weeks, I see doctor on 3/31/14 monday.

Hi Tornado,  You still attained a very significant drop in VL so you are definitely responding to the medications.  I would not be surprised if you reached UND at five weeks into tx.  Can you ask if you can be retested at six weeks or are you already past that?  If you can and are UND at that point, you would have six more weeks of being UND on the medication before EOT. 

 Let us know what he thinks after your visit next Monday.

I just got my 4 week results, went from 189,000 to less than 50. but not UND. They told me not to worry (that's usually when I start worrying), this not unusual, that it's ok, and I'll probably be negative (UND-undetected) at 12 weeks my next lab test and end of treatment. I see the doctor next Monday 3/31/14, am going to ask about another test at 8 weeks, also ask about adding another med to the regiment like interferon or ribafarin, any thoughts out there? Thanks Tim

Dee Dee wrote:

---

Groupergetter wrote:

---

Great news.  Was starting to get anxious about my first lab results so I called today.  Did I say GREAT NEWS?  At 2 weeks my viral load is down from 1.68 million to 233.  My ALT is in the normal range down from 118 to 38 and my AST is 33 down from 87.  My platelet count is up but not by much, still not in the normal range.  At least it's headed in the right direction.  

Whew, what a relief.  Think I may need to celebrate with a pint............of water         Hoping all here find SVR.  These new meds are truly amazing.

---

 That is fantastic news!!!!  wait... is that 2 hundred and 33?

-- Edited by Dee Dee on Friday 21st of March 2014 11:12:07 PM

---

Yes, that would be two hundred thirty three (233) Hoping my platelets will move up and I will be UND next lab tests.  Bilirubin also remains elevated?  If you're on these meds be sure to use sunscreen or keep covered.  Take care.

That's the kind of news we like. Congrats, pierre! Into the club you go. Sleep well. ;)

And tonight, the news is: Viral Load UNDETECTED! Youppie! Pourvu que ça dure, as the French say let's hope it lasts!What a relief... Will sleep way better tonight. These new meds may truly be the dragon-slayers we've been waiting for may all of us experience this. 

Pierre

Nice stuff Groupergetter and Pierre !

I just can't seem to get enough of the great lab results from this regimen. 

Rockon and keep us posted.

Hey Pierre,

Thats great news and I understand completely on the need to know the viral load. You mentioned the $250 dollar cost. My lab charges $1000+ for the RNA Quant. test (VL). It's one of the more expensive of our tests. The Qualitative test is more in some labs but they are getting away from it because the new quantitative tests are just as sensitive. Regardless, it's a real stress reliever to see that "UND" on paper! Good luck!

Tig

Well, the good news goes on: my tests results after 6 weeks are back & are even better than after 2 weeks -- now everything in the totally normal range, though still waiting on the VL count. Interestingly I had to push the doctor to do that test, as he thought it wasn't needed anymore given all the good results, & wanted to do it only at end of tx. I convinced him that psychologically it was more than useful to me, i.e. if I get to hear the word UND I'll be healed in mind & soul too! So he relented. This has to do, me thinks,  with insurance companies beginning to balk at paying for tests: so they pay big pharma $1800 a day for 2 pills but try to save on $250 tests for the patients... (they refused to pay for my Vitamin D test, saying it was unnecessary though my Vit-D deficiency had been a major marker in my etiology).  At any rate, will let you all know when the VL count comes in.

Other interesting news on our front is the letter Congress's committee on energy & commerce sent to Gilead, saying Sovaldi was way over priced. (http://democrats.energycommerce.house.gov/sites/default/files/documents/Martin-Gilead-Sciences-Hepatitis-C-Drug-Sovaldi-Pricing-2014-3-20.pdf ) & just in this morning a Reuters bit according to which Gilead is now giving Egypt a %99 discount: http://hepatitiscnewdrugs.blogspot.com/2014/03/hepatitis-c-gilead-offers-egypt.html . Which makes me wonder about those in this country -- & in the other 99% of the world -- who can't get coverage. 

a great weekend to all of you,

Pierre

Congratulations Groupergetter! Enjoy your "pint of water", maybe 2! With these new meds, good news comes even before you expect it. Have a great weekend!

Great News!    can now relax and enjoy your weekend.

Groupergetter wrote:

---

Great news.  Was starting to get anxious about my first lab results so I called today.  Did I say GREAT NEWS?  At 2 weeks my viral load is down from 1.68 million to 233.  My ALT is in the normal range down from 118 to 38 and my AST is 33 down from 87.  My platelet count is up but not by much, still not in the normal range.  At least it's headed in the right direction.  

Whew, what a relief.  Think I may need to celebrate with a pint............of water         Hoping all here find SVR.  These new meds are truly amazing.

---

 That is fantastic news!!!!  wait... is that 2 hundred and 33?

Great news.  Was starting to get anxious about my first lab results so I called today.  Did I say GREAT NEWS?  At 2 weeks my viral load is down from 1.68 million to 233.  My ALT is in the normal range down from 118 to 38 and my AST is 33 down from 87.  My platelet count is up but not by much, still not in the normal range.  At least it's headed in the right direction.  

Whew, what a relief.  Think I may need to celebrate with a pint............of water         Hoping all here find SVR.  These new meds are truly amazing.

DeeDee,

Your story mirrors mine, however, I only lasted 3 months on inf and RIBA before I was taken off due to massive sides.

Just finished week 4 of sov/oly and little to no sides. you will be pleasantly surprised with the minor sides and rapid response. I will post results from 4week draw as soon as I get them.

Good luck to you and please post your progress.

Rockon!

Thanks so much for the encouraging words... I remember being part of these forums during my treatment in 2005 and it was so helpful. To be able to talk to others going through the same thing you are really helps. I am hoping for a cure for us all!!

Congrats Dee Dee for getting started on your journey to new found health, and a new life.  Hope and pray this works for you.  Waiting for results of my first blood work on these meds.  This is a piece of cake compared to the interferon/riba.  I will keep you in my prayers, please do the same for me. We WILL get through this.  Another new day and so much and so many to be Thankful for.

Hi Dee Dee,

Congratulations on your quick approval! That's very encouraging to see these insurance companies agreeing to provide approval for these off label treatments so quickly. I hope this encourages everyone to try and to take information like this with them to their doctor to show the hesitant few, that it can and often does get approved without much ado. The FDA needs to pay attention and get this changed to a recognized standard of care.

I'd also like to welcome you to the forum and look forward to hearing from you as you move forward with treatment. Feel free to look around and if you'd like to introduce yourself to the group, we have a thread for new members available. Good luck!

Tig

Sounds very encouraging.. I can't wait to start mine on Friday 

I will be starting treatment with sovaldi/olysio only this Friday. I did do the peg interferon with rib in 2005. I didn't work.  My doc didn't want to put me through that again. He suggested this combo. I have Aetna ppo coverge and was approved right away! Will post how I'm feeling on Saturday in case anyone is interested. Got these meds for $30 a month (both) with a copay coupon from the manufacturers website. 25$ for one and $5 for the other. i have gt1a , doc ordered the Q80k blood test and insurance ok'd Meds b4 even knowing the results! Keep me in your prayers .. I'll do the same.