Hepatitis Forums
Hepatitis C Main Forums => Post Hepatitis C Treatment => Topic started by: sapphire101 on July 27, 2015, 01:03:10 am
-
It is our turn Viekirans!
For those who have gone before, for those that are here now, and for those who are yet to be.
Check in here with your 12 week labs for sustained viral response SVR. To clarify: This is not your end of treatment (EOT) labs, EOT is when you take that last pill. Hallelujah!
SVR is 12 weeks later when you get labs to prove that the virus is truly gone. Double Hallelujah!!
There must be many of you out there watching/waiting and please let us know about your treatment results. Now is the time to join in. It would be wonderful to hear from those of you that have completed treatment and gone to a successful SVR. Hearing from you gives everyone else a needed boost.
Red Hen was the first person who had completed Viekira regimen that I found on this forum. She started well before most of us on clinical trial. She cant be the only one out there!
I will test for SVR very soon and will post here. Many more of you are close behind me and will also be getting your results and we will be able to track our outcomes and continue to support each other.
-
You were the first Viekirian to speak to me here. I can't believe you're approaching 12 weeks post treatment!
A friend here in Aust has made SVR12, although I'm not sure if he's a regular forum poster, I know he reads over here.
I have 6 weeks left to go, and I know of two more Viekirians who have similar time frames in Australia. We have a few at EOT and a couple around 4 weeks post.
-
I finished 12 weeks of Viekira and Ribavirin on the 13th of May. I am receiving treatment thru the VA. I tested negative for the virus at the end of treatment and go back next week to hopefully confirm that I am cured. During the last 3 weeks of treatment I woke up with double vision. This lasted for another 3 weeks and my vision has returned to normal as of this writing. My symptoms, swelling, bloating, pressure in the abdominal area and some pain, have all dissipated and in that regard I feel great. However, my energy level is way low especially in the mornings. It takes sometime to get moving but once I do I am good till around 3 or so in the afternoon and crash. After taking a nap for about an hour I am back up and moving again. I have started getting myself back in shape by walking a mile a day and working out. Not sure if i am pushing myself too hard. I have searched for information on how long it takes to rid the body of meds and regain energy. Looks like anywhere from 3 to 6 months. I was the first to start Viekira treatment in North Texas and there is not much information out there. Would love to hear from anyone who has completed this regiment. God Bless you all and good luck!
-
Thank you for the updates. We have Red Hen & an unnamed Aussie on record now as having been cured - LOL - it is a start!
Video Guy we have almost the same EOT. I too was one of the first here in my region to start the new Viekira/riba treatment. We will both know very soon what our status is. Hang in there, those energy levels will return. I think you are right on with your walking and working out. I was a maniac for exercise and healthy eating during treatment and have slipped a bit as I eased back into a more normal routine.
Tomorrow is another day right??
Philadelphia I hope your buddy reads this and joins with full stats. We are interested in every single point of data.
So many Viekirans on this forum are closing in on EOT and SVR that we should get much more information here soon.
-
Happy to see this topic now in the forum for Viekira, as my insurance is denying the Harvoni and only approving the Viekira + riba for those with < F3 fibrosis. Looked online for any other updates on Viekira and success rates, found nothing, so seems this site is the place to go.
-
Welcome Future Thinker! This forum is the best both for support and education. I look forward to seeing your progress.
Don't forget to stop back here and update us when you are free of the virus!
-
#grateful #joy
I received my 12 week SVR today NOT DETECTED!
-
Oh bravo Sapphire!!! I am so so happy for you, I'm quite teary!
-
Don't worry, Futurethinker,
You'll be posting your success here in no time. I was refused Harvoni four times. I'm at 7.5 of 12 wks on V pack w RIBA and I'm undetectable with 0 VL at 6 wk labs.
I've been writing a bit about this process at nomasoto.wordpress.com
Scroll to "Standing at the Altar."
Wishing you success,
ms.nomoreC
-
#grateful #joy
I received my 12 week SVR today NOT DETECTED!
Congrats Sapphire! Hooray!
This Viekirian (with riba) just got EOT blood results - HCV undetected - the wait is on now for 12 weeks - should be about beginning of November.
I hope more Viekirians post here - there's alot on Harvoni but not much on vpak. Would be lovely to know about more people with SVR as undetected!
Will post SVR at end of 12 weeks.
-
Welcome to the other side Prudence!
November will come quicker than you think and especially quick because it is the holiday season. I look forward to your SVR post here.
Yes we have many members of Club V about to SVR and EOT and I certainly hope they remember to 'write home' with updates.
By my totally unscientific estimate we have Aveinc, Videoguy, and llory86 who should have made SVR by now and with ekarena, Lonewolf, hepctreatnow close behind. Many many more viekirans out there who are close to EOT.
By year end of 2015 we should have a small but respectable sized graduating class.
-
#grateful #joy
I received my 12 week SVR today NOT DETECTED!
Great news, Sapphire101!!!
Once you achieved 0 VL and Undetectable, we're all your blood tests the same?
Happy SVR!
ms.nomoreC
-
At 4 weeks on treatment I was undetectable (zero viral load) and my AST/ALT normal for the first time in many years. These numbers stayed the same through end of treatment. Then for the big test at 12 weeks after treatment I had sustained viral response aka undetected.
My hemoglobin was a bit labile during treatment due to ribavirin anemia, but never low enough to cause concern. All my lab details are still in my signature.
Did this answer your question?
-
At 4 weeks on treatment I was undetectable (zero viral load) and my AST/ALT normal for the first time in many years. These numbers stayed the same through end of treatment. Then for the big test at 12 weeks after treatment I had sustained viral response aka undetected.
My hemoglobin was a bit labile during treatment due to ribavirin anemia, but never low enough to cause concern. All my lab details are still in my signature.
Did this answer your question?
Yes, thanks for taking time to answer!!
-
COngratulations!! So happy for you and looking forward to add my name to that list soon enough. :)
-
Congratulations Sapphire101 & thanks for starting this thread. I am hoping to begin treatment with Vpack & rib as soon as possible, it's looking like the end of the year.
-
Hi Hazel,
I'm Australian too. I am day 5. I hope you get them. Is it Compassionate grounds, it seems to be the only way anyone in Oz is getting txed with the orals, other than trial. Good luck my friend. Cal
-
Just wanted to say that I am almost 3 weeks in. Took a lab at two week mark and ALT and AST are 10 and 11. They were both in the 80s prior to starting treatment. I have geno 1a and am doing VP plus riba. Is this a good sign that it's working?
-
Hi LF98,
They're nice low numbers! So quick too! Are you treatment naïve? Cal
-
Welcome everyone and I can't wait to see you all back here with your final numbers. Forum Tip: If you can get all your stats in your signatures this is an effective way to communicate all your important information at a glance.
Yes LF98 your low liver enzyme numbers are a really good sign. You are no doubt very low viral load or not detected already!
-
Welcome to the other side Prudence!
November will come quicker than you think and especially quick because it is the holiday season. I look forward to your SVR post here.
Yes we have many members of Club V about to SVR and EOT and I certainly hope they remember to 'write home' with updates.
By my totally unscientific estimate we have Aveinc, Videoguy, and llory86 who should have made SVR by now and with ekarena, Lonewolf, hepctreatnow close behind. Many many more viekirans out there who are close to EOT.
By year end of 2015 we should have a small but respectable sized graduating class.
Hi Sapphire101,
Four week eot test results - AST12 ALT8 and virus<15 undetected- 12 week tests in November - will keep you posted!
Meanwhile, wishing all of you out there the best in your fight against HCV!
Prudence
-
Wonderful news Prudence.
Four weeks after EOT right? a 4 week SVR is something like 99.9% predictor that you will make the final SVR at 12 weeks.
Feel free to do a happy dance and relax a bit, you've got this.
-
Thanks Sapphire101! I didn"t know that it was such a good predictor of final SVR - very happy right now!
-
I know the people i am about to mention are noting members of this forum but to add to the Nameless Australian who did 12 weeks of VP and RBV - cirrhosis 1b, add another Nameless Australian who did 24 weeks of VP and RBV- cirrhosis 1a. And another Nameless Austrailian who did 12 weeks of VP - no cirrhosis 1a.
So that's three Nameless Australians who have achieved SRV12.
My specialist at St Vincents says they are batting 30 for 30 with their Viekira Pak compassionate access program so far. They are very happy.
Just thought that might ease some people's minds.
-
Hi Phily,
That's so nice to know.100%. Even then I think yes but I could be the one who brings it down to 97.4%! Human nature? Pessimist? Not sure if it's the human condition to think the worst till you hear the best or not. Cal :'(
-
Human nature for sure Cal and especially with HCV. Seems like ALL of us think the very worst and even when proven otherwise reserve the right to be skeptical. We have just been through so much and been disappointed many times.
Philly we are going to count every single Australian win here too including those 30 at St. Vincents! Thank you for sharing here and in your blog.
-
Thanks Saphhire,
Yes we have been through more than many. I like your take too that even when presented with good news we reserve the right to be sceptical. Thanks for understanding me. Cal :)
-
Hi to all my friends and fellow Viekirans out there! More good news from a vpak+riba person.
12 week results are in - virus undetected and everything else normal. It feels so good to join the ranks of "cured" ! Doc still wants blood in 12 more weeks, but that is not unusual. I am feeling grateful and the best I've felt in along time.
Good luck to all of you out there - will be waiting to hear your good news.
All the best, Prudence
-
Congrats Prudence!! So great to get that SVR12! :)
kim
-
CONGRATULATIONS!! Hoping that I join that team in another 8 weeks.
WOOT WOOT!
-
Congratulations Prudence! I'm about three weeks behind you.
-
8)
Hi Loves...I am 12 weeks behind post treatment. See you all on the other end of the rainbow soon, God willing.
-
Prudence,
Wonderful exciting news. Big Congrats and hugs. Cal :)
-
Thank you all! Feels great to join you Kim and Sapphire and we"ll all be waiting for you Cal, Philadelphia, bkmusic and Fight290. Love this forum and grateful for all of you!
Prudence
-
Yeah Prudence - welcome aboard the Good Ship Cured.
We are here waiting for all the rest of you in our life rafts and cheering you on and pulling you up with us to safety as soon as you are near!
-
Hi my new brothers and sisters. I am so very grateful for you all. I don't know if ok to ask here but I just started my Vpak with ribs and I have thsee hit spit's on my neck, they burn and itch. I took benadryl but it doesn't seem to cool off. Any help would do.
Fight
-
I didn't really get troubled with bad skin conditions, more annoying stuff. Honestly, for me I wondered if some of it wasn't psychosomatic. I know some people have very strong reactiolns to riba but mine was more of an annoyance and it only seemed to surface when I had enough time to think about it, so I'm probably the wrong person to give feedback. I had the occasional bout of itchiness, but for me it was more like something was crawling on my skin. For a while I honestly thought I had head lice - I'm a school teacher so that is not out of the realm of possibility. I didn't, it was just the drugs. I had a cool shower and tried to distract myself. Antihistamines helped a little but I only had to take them a couple of times.
I'm sure someone else will chime in. If you post this in "On Treatment" you're sure to get more answers too.
-
I am with Philadelphia - no bad skin conditions but had the creepy crawlies like little bugs crawling around on my skin. Riba at work! Most of my sides came and went during treatment , but the crawlies hung on about a month or so after treatment ended.
Good luck to you!
Prudence
-
Hi Flight,
I am battling skin issues, ulcers, Lichen Planus, herpes cold sores lips, up nose, now my skin is splitting open, I have open sores arms. leg, face torso, a rash all over which is raised and itchy as hell, I have been unable to wear anything that rubs, so all rings bracelets etc. I haven't worn for 3 months. I wash in a special brew now, I have given up the soap free wash, I use a honey and coconut oil wash now. I moisturise 4 times a day with aveeno and use cortisone cream on some of the heavier rashes. I bird bath every 2nd day! It was the reason my Specialist said no more ribas at 12 weeks, because of the open sores on my face.
I am a VERY attractive woman right now! 8) Cal
-
I just got my 4 week labs and it's undetectable.The again I'm a Viekirian so it was a given. 8) I'm so relived. :) :)
-
Yay BillT :) :)
-
Good news BillT! The end is in sight!
-
Just received the news, undetectable at 12 weeks EOT. Still have some insomnia and GI reflux issues to overcome but very happy.
Seen by the VA and I am very grateful to them but your follow up appts are not with anyone who can discuss these new Hep C treatments. So it can be frustrating to try and talk side effects.
Good health everyone. ;D
-
Congrats on your good news, Rick! :)
-
Great news Rick!
-
Congratulations Rick,I'm happy for you.I know what you mean about the VA because I'm a vet and use them to.The only thing I count on them for is my labs,meds,and consults with the pharmacy to see what conflicts with them.I must admit I have a great doctor but seeing them is hit and miss.Everything else that I can get out of them is a bonus. :)
-
Just received the news, undetectable at 12 weeks EOT. Still have some insomnia and GI reflux issues to overcome but very happy.
Seen by the VA and I am very grateful to them but your follow up appts are not with anyone who can discuss these new Hep C treatments. So it can be frustrating to try and talk side effects.
Good health everyone. ;D
Great news Rick369! Congrats and welcome to the other side. Other side effects should wane as time goes by.
-
I've been waiting a long time to post this - 28 years in fact.
I got my results today - SRV12. That's a cure, folks.
Most of my results are now firmly in the normal range. Slightly outside the norm are:
Bilirubin 20 (0 - 18)
Hb 112 (115 - 165)
Platelets 70 (150 - 400)
My wbc is a bit low, so is haemocrit.
But the big drop has been my AFP - it was 76 when I started treatment. it's 8 now (0 - 7)
I don't quite know what to do with myself. It's surreal. My daughter sent me a text message saying "That's amazing. Well done. I'm so happy for you. And us as a family but mostly for you."
-
Philly,
EXCELLENT NEWS!!!!!
You did it. It's off your back for good. Now to live a life Hep free. You're an inspiration. Cal :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :)
-
And of course I blogged about it. ;)
Do you think Lucinda will regret asking me if I'd be interested in keeping a blog here?
http://blogs.hepmag.com/gracecampbell/2015/12/hepatitis_c_srv12.html
Tomorrow I am also organising a time for a follow up interview with ABC radio. They really want to let people know how treatment has progressed for me. Share the joy, I say. Share the joy.
-
Do you think Lucinda will regret asking me if I'd be interested in keeping a blog here?
Actually, I think the way you've been blogging is precisely why Lucinda asked you. Congrats on the cure. Glad you'll be doing the F/U radio interview -- your earlier interview was terrific.
-
I've been waiting a long time to post this - 28 years in fact.
I got my results today - SRV12. That's a cure, folks.
Most of my results are now firmly in the normal range. Slightly outside the norm are:
Bilirubin 20 (0 - 18)
Hb 112 (115 - 165)
Platelets 70 (150 - 400)
My wbc is a bit low, so is haemocrit.
But the big drop has been my AFP - it was 76 when I started treatment. it's 8 now (0 - 7)
I don't quite know what to do with myself. It's surreal. My daughter sent me a text message saying "That's amazing. Well done. I'm so happy for you. And us as a family but mostly for you."
Hi Philadelphia,
Yahoo! Have been waiting to hear this! So happy for you!
-
That's wonderful news Philadelphia - I'm so happy for you. And thanks for posting so regularly, it will continue to be valuable to me and others. My very best wishes, Hazel
-
Very happy for you! :D :D :D :D
Thanks for being an inspiration & a beacon of hope to me and so many others!
-
My sincere and heartfelt congratulations Philadelphia.
The biggest gift of acheiving SVR is the gratitude that comes with the cure.
Life long life changing gratitude.
There are some things worse and more serious than a chronic infectious disease that will likely worsen and kill you, but not many.
So now that I am back in my day to day routine when I have a bad moment or something is trying to get me down I only have to pause and remember that I am cured of hepatitis C and what ever was bothering me melts away.
#gratitude #blessings #chronicgoodhealth #svr #enjoytherest
-
Another Viekiran checking in.
I did 12 weeks on Viekira, no Ribavarin, got treatment for free through an AbbVie voucher program.
I tested undetected at 12 weeks post EOT. Liver values back to normal. Feel great, no issues.
So happy to be rid of the virus and happy to hear others are also kicking it successfully.
-
Completed 12 week Viekira Pak/Ribavirin therapy.
Started with a viral load of 500k - VL went to undetected at 2 weeks and remained undetected at end of treatment. AST/ALT levels went from 60/110 to 13/11 (probably the best they've been in 40+ years).
Got the phone call last week after the SVR12 blood draw ..
VL has returned to pre-treatment level - AST/ALT now at 30/50
Still processing all this
J.
-
I am so sorry J Eugene. I know other drugs are coming down the pipeline, but it must feel shattering to have this news. I hope your doctor is proactive and hunts down an alternative treatment protocol for you!
-
Thanks for the kind words Philadelphia.
I do have an aggressive gastroenterologist – but there are guidelines. Was reading the following online:
__________
American Association for the Study of Liver Diseases (AASLD) and the Infectious Diseases Society of America (IDSA)
HCV Guidance: Recommendations for Testing, Managing, and Treating Hepatitis C
(Updated December 11, 2015)
RETREATMENT OF PERSONS IN WHOM PRIOR THERAPY HAS FAILED
Recommended regimen for patients in whom previous treatment with any HCV nonstructural protein 5A (NS5A) inhibitors has failed (including daclatasvir plus sofosbuvir, ledipasvir/sofosbuvir, or paritaprevir/ritonavir/ombitasvir plus dasabuvir).
For patients with minimal liver disease, deferral of treatment is recommended, pending availability of data.
Rating: Class IIb, Level C
http://www.hcvguidelines.org/full-report/retreatment-persons-whom-prior-therapy-has-failed (http://www.hcvguidelines.org/full-report/retreatment-persons-whom-prior-therapy-has-failed)
__________
Appears that anything short of Stage 4 is likely considered "minimal".
Studies were reported at the recent AASLD meeting in San Francisco. Both AbbVie and Merck tried adding Sovaldi (sofosbuvir) to their existing DAA therapies. From the publication:
__________
“One concern is that failure of a regimen that contains an NS5A inhibitor (ledipasvir in Harvoni, ombitasvir in Viekira Pak / Viekira) may result in the emergence of NS5A-resistant virus that can take up to 96 weeks to disappear”.
http://www.aidsmap.com/Treatment-intensification-with-sofosbuvir-permits-cure-after-failure-of-previous-HCV-treatment/page/3014995/ (http://www.aidsmap.com/Treatment-intensification-with-sofosbuvir-permits-cure-after-failure-of-previous-HCV-treatment/page/3014995/)
__________
Have a meeting with my physician on Monday – and have no illusions about continued therapy.
Looks like some more years of “watchful waiting” here.
J.
-
Have a meeting with my physician on Monday – and have no illusions about continued therapy.
Looks like some more years of “watchful waiting” here.
J.
Very sorry to hear about your relapse, J. - and after achieving "undetected" status so early in tx at just 2 weeks. You may not have to wait years to retreat with something that will work and will get around any resistance that may have developed. There are loads of clinical trials going on with the next generation of these drugs. And that is one way to get treated sooner. I was cured by a clinical trial, as others here on these forums have been. If it had not been for that trial, I would still have HCV because I did not qualify for any of the all-oral treatments in my province. So keep your eyes on clinicaltrials.gov, and ask your dr. to keep his/her eye out for a good trial that would fit you.
kim :)
-
Indeed, trials are an excellent way to go. I know my specialist was talking about a new Gilead trial for people who had relapsed on the new DAAs - it was going to perhaps be am option for me if I didn't clear.
-
What happened to you is our worst fear J. Eugene.
It does not matter that the new medications are 95% effective if you find yourself on the wrong side of the numbers. I am so sorry. Please keep in touch and don't give up.
-
Hello J. Eugene. Here is a clinical trial that would be relevant to your situation of relapse after Viekira. The trial is currently recruiting. There are study locations all over US (plus Canada, UK, Australia, NZ, France):
https://clinicaltrials.gov/ct2/show/study/NCT02607735
The trial is: "Safety and Efficacy of Sofosbuvir/Velpatasvir/GS-9857 in Adults With Chronic HCV Infection Who Have Previously Received Treatment With Direct-Acting Antiviral Therapy (POLARIS-1)"
kim
-
Hi my V-Pack friends,
The final results are in--SVR UNDETECTABLE! = CURED!
I'm so happy to join ranks with you--Philadelphia, Sapphire, Prudence, KimIntheForest, and others who have been so supportive as we have all taken these unnerving steps toward wellness. I can still hardly believe it--CURED. I mean, who gets cured? People manage illnesses or they get remissions, at best. Cured is like not only seeing a white unicorn, but getting to ride it through some paradisiacal garden. It's just so much more than I ever imagined.
Gratitude--yes. Gratitude for a cure, and for being able to hold hands with all of you.
My first Christmas and yours as a cured person. Let's make it memorable in all the best ways!
Wishing you all Christmas cheer and continued good health!
Truly,
ms.nomoreC
-
#gratitude #unicornsforever #congratulationsms.nomoreC
Thank you for sharing because your joy is our joy!
Thank you for reminding us that this is our first Christmas virus free and healthy.
Last year at this time I had just worked up the courage to make my appointment with the liver clinic to be evaluated. They were all booked up through spring and I was very disappointed, but on Christmas eve morning they had a cancellation and I ran myself down there lickety-split. Then the ups and downs of the health care insurance roller coaster began! So glad I was able to get a head start.
Congratulations again ms.nomore. and best wishes for a happy healthy new year.
-
Thought I would repost this here:
Finally!!! got my lab results. Had to call as usual. 12 week EOT "HCV NOT DETECTED"!!!!
I'm still in shock. I was so nervous to call and felt like the news would be bad as I have felt lousy since eot and was experiencing liver area pain for a few weeks , this past week I had no pain though.
Huge thanks to all who helped me through this ..(hope I don't leave anyone out, so many helped me in ways you don't even know)..
Philly (of course!), Rosie, Gnatty, Willie (on sup you suggested for 2 days now) Lynn, Bree, Kim, Cal (still working on ACT! it helps!),Prudence, Slats (please send money, I'm stranded in Nigeria((just kidding moderators))) , Beto, and all who post here. I have been on several forums these past eight years... this is the best!
Now, I wait 3 more months and get final blood draw and hopefully doc says no more appointments.
Yet on another note, some of you may remember that I had a terrible time with a wheezing cough that lasted months. I assumed it was the "riba cough", but my doc suggested I try allergy shots. So I have been injecting myself for a couple of weeks ( I have a mold allergy), cough/wheeze has gradually subsided and vanished! Not sure if the shots are responsible or just a coincidence as it can take up to a year for shots to have an effect or (as the doc tells me) some people respond immediately! Anyway, glad cough is gone.
Happy New Years to all! Hang in there. "Never give up, Never surrender. Activate the Omega 13."
https://www.youtube.com/watch?v=9fdcIwHKd_s
dm
-
Hi drummerman,
My name's Hazel. I haven't talked to you before but I just wanted to say that I loved reading your post. Such good news and I really get the sense, from your post, of how profound this forum is for people - and of how what people are going through is so profound too. Thanks.
Best,
H.
-
Hi drummerman,
My name's Hazel. I haven't talked to you before but I just wanted to say that I loved reading your post. Such good news and I really get the sense, from your post, of how profound this forum is for people - and of how what people are going through is so profound too. Thanks.
Best,
H.
Hi Hazel!
This forum has been very helpful and entertaining!
Good luck with your journey!
dm
-
Well I guess I need to stand up and be counted. I got my 12 week EOT results and I too join the team of UNDETECTED!! Oddly enough I was so cautious about posting since somewhere I keep waiting for the other shoe to drop. Irrational yes but after having being diagnosed since 1972 it is hard to believe that I'm no longer a walking time bomb!
I guess the big happy dance will be in March with 6 month post draw. I will take this new year to begin owning that I no longer live with Hep C.
So grateful for the forum which has helped me immeasurably in completing this journey. I honestly wouldn't have done it without you.
Happy 2016 to all!!
-
Well I guess I need to stand up and be counted. I got my 12 week EOT results and I too join the team of UNDETECTED!! Oddly enough I was so cautious about posting since somewhere I keep waiting for the other shoe to drop. Irrational yes but after having being diagnosed since 1972 it is hard to believe that I'm no longer a walking time bomb!
I guess the big happy dance will be in March with 6 month post draw. I will take this new year to begin owning that I no longer live with Hep C.
So grateful for the forum which has helped me immeasurably in completing this journey. I honestly wouldn't have done it without you.
Happy 2016 to all!!
Congrats and ditto on the 6 month results!
dm
-
Oh DM,
You darling man! Congratulations on a battle well fought!
I am 3 weeks post today Viekira and 7 weeks post riba. I have not been posting as I feel so ill. But I had to call in on a post from you.
Good luck with the rest of the script. That's the antagonist beating the odds and now your in that redemptive part of the script where you live happily ever after my friend. Cal :)
-
Oh DM,
You darling man! Congratulations on a battle well fought!
I am 3 weeks post today Viekira and 7 weeks post riba. I have not been posting as I feel so ill. But I had to call in on a post from you.
Good luck with the rest of the script. That's the antagonist beating the odds and now your in that redemptive part of the script where you live happily ever after my friend. Cal :)
Cal! there you are!
Was wonderin what was up with you.
I knew you were pretty sick though, so figured you just weren't up to it.
I had to leave the forum for a bit too , because my head was just in a weird place and i was pretty much freaking out. But every day things get a bit better and I know longer feel like I am going to jump out of my skin.
I think the ACT is helping and try to practice it everyday. Also considering an ACT therapist as one of my old band mates is trained in ACT. Just need to find out if my insurance will cover as I'm just a poor boy and certainly could never afford it on my own.
Looks like you got a EOT UND, so the rest is cake!
hang in there! and thanks for the ACT recommendation.
dm
-
Congrats Bkmusic! So happy for you. Another svr12. They sure are piling up!
-
Thanks Philly,
You were one of the influential people who convinced me to even go for treatment!! I am glad to have reached this near end of the journey. Happy Sweet 16!
-
Hi DM,
o good to hear from you. Thanks for answering my post. Yep I am really unwell, weak, sweats, pain, fog etc. Just had a V/L this morning so that's over 3 weeks post tx, and I'll find out in 2 1/2 weeks.
Trying to stay positive. Using ACT daily. I am so glad that it's helping you. I hope you can get an ACT therapist. I adore mine. Did you buy the Happiness Trap? I can't recall. It's a great book. Anyhow keep on swimming, keep on swimming....Cal
-
Hi DM,
o good to hear from you. Thanks for answering my post. Yep I am really unwell, weak, sweats, pain, fog etc. Just had a V/L this morning so that's over 3 weeks post tx, and I'll find out in 2 1/2 weeks.
Trying to stay positive. Using ACT daily. I am so glad that it's helping you. I hope you can get an ACT therapist. I adore mine. Did you buy the Happiness Trap? I can't recall. It's a great book. Anyhow keep on swimming, keep on swimming....Cal
yep! I bought the HT. working on my 2nd time through it I also found some really good audio recordings on their web site that I use almost daily.
Sorry to hear you are feeling so bad. But sounds like only one way to go.... up!
dm
-
Hi DM,
That's great. Bree loves the book too. I must get mine out again for a refresher course!
Yeah feeling crap but that's the ribas for you. They worsen everything for me. Nevermind, just want to get this virus off my back then I can deal with the carnage. :o Cal
-
Hi DM,
That's great. Bree loves the book too. I must get mine out again for a refresher course!
Yeah feeling crap but that's the ribas for you. They worsen everything for me. Nevermind, just want to get this virus off my back then I can deal with the carnage. :o Cal
I'm constantly amazed at how these meds make some people feel really bad and the others.... nothing.
I was in really good health before I started and still felt pretty bad. weird.
dm
-
Hi DM,
I know what you mean. Both my tx's have left their toll on me. It's just reducing the damage as much as possible now.
It's a crap shoot DM. ::)
Cal
-
Hi DM,
I know what you mean. Both my tx's have left their toll on me. It's just reducing the damage as much as possible now.
It's a crap shoot DM. ::)
Cal
know what you mean.
dm
-
Congratulations BK Music on your SVR 12 and forget that other shoe for all time!
Go barefoot and enjoy your new life.
Happy new year to all!
-
Good morning all,
I just popped in to let you all know I'm still here,and alive.I had appts the beginning of last week and then I went camping just to get out for a bit.I'm not quite sure what's going on.I did well on the treatment but now that is over I have a bit of brain fog and a little confusion.I also feel kind of strange but there's nothing I can put my finger on.Has anyone else had this happen?It's not bad just kind of odd and seems to come and go.I'm going to put it down to the meds leaving my system.
-
Good morning all,
I just popped in to let you all know I'm still here,and alive.I had appts the beginning of last week and then I went camping just to get out for a bit.I'm not quite sure what's going on.I did well on the treatment but now that is over I have a bit of brain fog and a little confusion.I also feel kind of strange but there's nothing I can put my finger on.Has anyone else had this happen?It's not bad just kind of odd and seems to come and go.I'm going to put it down to the meds leaving my system.
I here ya Bill!
I just feel plain weird. I would like to attribute it to old age (61), but I did not feel this way before tx. Ready to get back to feeling normal!
dm
-
Hi Drummer,
I just turned 60 so I feel ya.I'm about 11 days out from EOT so I think I may be expecting too much too soon as far things getting back to normal.I have to remember that I had the Dragon for 43 years and the meds just knocked it out in 12 weeks.I have no complaints at all about having done this.As I said everything I have now is more of a annoyance than a problem but I was just wondering if it had happened to anyone else.I think we're all going to be fine but have to give ourselves some time to adjust. :)
-
Hi Drummer,
I just turned 60 so I feel ya.I'm about 11 days out from EOT so I think I may be expecting too much too soon as far things getting back to normal.I have to remember that I had the Dragon for 43 years and the meds just knocked it out in 12 weeks.I have no complaints at all about having done this.As I said everything I have now is more of a annoyance than a problem but I was just wondering if it had happened to anyone else.I think we're all going to be fine but have to give ourselves some time to adjust. :)
yep, definitely happening to me as well.
dm
-
SVR24. :)
Mostly normal results, an uptick in haemoglobin to 119, INR 1.4, platelets a real issue - dropped again. 56. Not sure what they will do about that. They have fallen steadily since part way through treatment. I have an U/S in two months so they will be able to tell me more then. I'm concerned, but I am also pleased to have the other results to go with the crap one.
But SVR24. Yay. :) That dragon has died well and truly.
-
Congrats Philadelphia on your SVR24!! Great news. :)
kim
-
SVR24. :)
Mostly normal results, an uptick in haemoglobin to 119, INR 1.4, platelets a real issue - dropped again. 56. Not sure what they will do about that. They have fallen steadily since part way through treatment. I have an U/S in two months so they will be able to tell me more then. I'm concerned, but I am also pleased to have the other results to go with the crap one.
But SVR24. Yay. :) That dragon has died well and truly.
way to go Viekira buddy!!!!
dm
-
Congrats on your continued SVR!
I guess sometimes we have to take the good with the bad. Hoping all the numbers turn in your favor soon!
-
Great news Philly!
What's your take on the platelets? What's going on, do you think?
Hazel
-
Hey, congratulations on the SVR24 Philly! :)
-
I have a few theories but I'm no doctor, so they're probably wrong.
One is that my spleen is still enlarged and is continuing to sequester the little buggers.
Another is that my liver is so damaged that it can't make enough TPO. Who knows? I have a regular ultrasound scheduled in June so that may provide some information.
-
Good God no Philly - I don't even want to think of your spleen sequestering anything! Go with the liver damage which has good potential to heal in time.
You are SVR24 and no looking back.
-
I got my results on the 4th.I can now be added to Viekiran Hall Of Fame. 8)
-
Wonderful news BillT.
Congratulations and welcome to the VHofF!
-
Just wanted to check in with everyone. I finished my treatment last week and feel fine other than bad allergies. I am not expected to visit the doctor for the 12 EOT bloodwork till July- needless to say I am nervous about it - thinking that the one time I missed my evening dose may have screwed up my treatment. Would be interesting to know if there is any point before the 12 weeks treatment with Viekira is completed when hep c is generally completely eradicated from your body - and the rest is just for good measure.
-
You're a geno 1b. You've got GREAT odds. That one time? Don't dwell on it.
-
My 24 week SVR is undetectable.I can't believe after 43 years it's finally over.What a long strange journey.
-
Congratulations, Bill. Welcome to Club 24.
Are you any less curmudgeonly now? ;)
-
I'll always be a curmudgeon Gnatty.Why do you want to rain on my parade like that? 8)
-
Whoops -- sorry, didn't mean to. Heck, we need that rain here! Howsabout I take my question back, and you send the rain back?
-
You're good Gnatty.I'll tell you what.We'll forget about your question and I'll hook you up with some friends in Ireland.They have a abundance of rain and I'm sure if you send them some sunshine they'd be more than happy to send you some. :)
-
Bill T you started with F2 and now are F1 post treatment? That just blows me away. Not only is the disease gone, but scarring reversed.
It has been a while since I have checked in on my forum family- almost forgot my password!
Good to know I can continue to drop in and hear good news.
Blessings to all!
-
Sapphire101, good to hear from you! I remember you from when I first joined this forum last year.
You can see there are a lot of posts now re: health issues after treatment, so I wanted to ask how you are doing at this point?
I just got my SVR 12 this week and am overall, feeling pretty good. Please let us know how life has been for you post treatment. Thanks, FT
-
I remember you too Future Thinker and congratulations on your continued good health.
Yes I was worried for a bit about health issues after treatment. Those were some POWERFUL drugs that eliminated HCV from my body and it certainly crossed my mind that the swollen knuckles and joint pain I was experiencing could be Rheumatoid Arthritis which would make some sense after stimulating my immune system during treatment. All OK though. No further symptoms except that flare up immediately post tx and my annual check up was last week - all good. All labs good. BMI....in good range, but if I am disappointed in anything it is with my ownself because I did not keep up my lifestyle changes that I initiated during treatment. Daily yoga, no sugar bla bla bla. Really just a way to feel like I could 'help' haha. Probably more magical thinking or more like my control freak personality coming through.
Note to self: get back on track with exercise and diet and start checking back to this forum monthly at a minimum. It supports continued healing to get a big dose of gratitude in my life again. This forum family kept my sanity intact during the stressful times on medicine, waiting for medicine, waiting for results. I was reading and posting daily. #grateful and this needs to be my daily meditation.
Another promise I made to myself that I have not kept was to purchase a sparkling sapphire gemstone to celebrate once I was officially cleared. Sapphire was my chosen forum name before I knew that it was also the name of some of the HCV clinical trials so it is especially meaningful. Also my birthstone and that is coming up too! Birthdays are always a good touchstone for reflection and positive change for me.
Thanks again to all my forum friends.
I will renew my support for you and start checking in more frequently.
Not always posting, but know that I am still here along with many others who care about you and understand what you are going through.
-
Next month marks 12 months since I finished treatment. I guess I should celebrate by getting a viral load test. Or not - really with 24 weeks all clear a while ago it's not really necessary I suppose. Perhaps just some LFTs. Decisions decisions.
-
Greetings to all,
I wanted to share my experience with Viekira Pak. I was diagnosed in 2006, but did not do the Interferon/Ribavirin suggested treatment because of the low cure rates and side effects, etc. I felt okay & did nothing until 2015.Then I started having side effects of the virus, & finally sought treatment. (61 yr old male, slightly overweight but fairly healthy).
After battling the Insurance co., I was finally approved for Viekira Pak w/Ribavirin. (Hep C/Gen 2)
I started treatment 1/23/16. I experienced headaches e/o day for a week, & hydrated w/coconut water (recommended by the pharmacy) to hopefully ease the headaches. I read that coconut water was good, and tried many flavors until I found one I liked. Fatigue set in, but I was able to nap 30-60min daily (luckily working a split shift). I had some slight dizziness 3 wks in, minor vision disturbances , & dry skin issues. (Cortisone cream helped with the flaky skin).
The itching & fatigue were difficult & constant, but I never thought of stopping treatment. I was 'clear' after a month; 2 months more to go.
I tracked my good days, bad days & so-so days. I had 2 or 3 bad days a wk, many so-so days; & I really longed for the good days because they kept me determined to keep going. (Occasionally, I would have 2 good days in a row).
About 6 wks into treatment, I experienced anxiety/depression symptoms and sought treatment. I didn't want to add more pills to my daily regiment, but I was miserable.
The fatigue would hit me suddenly, and I could easily doze off in one minute. I added Benadryl at night for the itching, & it helped with sleep.
The last 2 weeks were mostly average (so-so days), but the end was in sight! My 12wk treatment ended in April, and I cleared the virus. I had SVR after 90 days (July), and considered cured.
After the 12 wk course of treatment it took another few weeks to rid myself of all side effects. The itching was the last thing to resolve, & the fatigue eased gradually. It is now Sept and I feel great, back to normal at last.
Everyone responds differently to treatment, I have read. I had many of the side effects listed, but none were too terrible.
Excuse the lengthy post, but reading about other people with the same thing I had helped me immensely.
Please don't delay treatment; it is worth getting this over with so you can stop worrying and get on with life.
-
Congratulations on your great results! SVR is a wonderful thing to achieve :)
-
Well, I didn't have the opportunity to have a 12 week test following my treatment with Veikira Pak.
I don't know why but I suspect the regional hospital I was treated through was trying to cut back on pathology costs.
But anyway, I was pretty sure I had got rid of the virus, I remember the day I felt like it was gone. I know it sounds strange but I'm sure my vision improved. Everything was clearer. And my 6 month tests have just confirmed it! All gone!
I am so very grateful. To science. To all of you. To the people who participated in the trials before me. To the clinic that offered me a place. To me, for saying yes when they did offer it!
I just read the post by the person asking about the after-effects of carrying a secret for so many years. I wasn't totally secretive about my hep c, which I'd had since the 80's, but I was, let's say, pretty discreet. Now that it's gone, a weight has definitely dissolved. I feel like I'm more myself, like I can really go for things and express myself without this underlying feeling that I might not be around for much longer (well, who knows!), or simply that I have this virus gnawing away at my psyche. Something between myself and others that I had to always remain at least slightly attuned to. I don't!
I'm feeling really well and happy, with just a few creaks and aches, and some slowly resolving digestion issues and I'm heading to Greece for some walking, sunshine and octopus in just a few days.
As soon as I received the results (by text message at work this morning) I thought of everyone here at the forum and couldn't wait to let you know!
Best wishes and good luck to everyone.
Be yourselves. Try to be free!
Hazel
-
Congratulation Hazel. Another few million virii bite the dust. :)
-
Double congratulations to 3betternow and HazelAustralia!
I experienced very similar side effects to your 3bn and I am glad to hear you are feeling back to normal. Whatever that is- right? Thank you for sharing your story here to help others.
Regarding after effects of carrying secrets.
This is why I love this forum. I would have not thought of this had I not read this here. "Something between myself and others that I had to always remain at least slightly attuned to" Yes HazelAustralia- so true. That WAS there with me all the time and in all my interactions. One of the best things about being cured is no longer having this weight. Secrets are heavy!
-
Have missed quite a few SVRs over the last week. Great news.
Tomorrow begins week 12 - everyone was right. Treatment time
sailed by.
We sure could use some rain the mid-atlantic US.......dry
Best to all
B-
-
Hazel, sorry for the late response (stopped reading the forum). This is the most wonderful news. I've been thinking of you here and there ever since we entered September, wondering when you would be finding out your results. So glad you feel the way you described. Wishing you a long, healthy life!
Rosa
-
hi.... well its only day 1 of meds free.. just finished 12 weeks yesterday... hopefully will have great news for the new year....
was anyone really nervous about ..what if I am that percentage that doesn't????
-
and also curious if anyone has gone for a full physical... heart lungs etc after treatment... that's what I'm thinking on asking my dr if I can do ... when the heart was racing like crazy and pulse felt like going to pop out of my skin ... makes me wonder could there of been any damage done??? I have also had a continuous cough... just curious
-
Sounds like you could have the ribavirin cough. Some folks get it, some don't. It should clear when you Clear the meds.
-
thank u Philadelphia
-
been lil while.... went to primary dr ... had an ekg done says that's good... wants me back in 3 months thou...
have lots of energy now which is awesome...today I am 7 weeks after treatment stopped ... don't go for bloodwork till day before Christmas eve.... praying will b a great new years...
the cough has subsided a lot but is still there.....
hope everyone is doing as best as can be....
1 day at a time...
-
Hi, its time --
The day before Christmas eve was when I went for my post-treatment blood work last year . . . sending best wishes that you'll have equally good luck (SVR12).
Gnatty
-
I went to see my specialist yesterday for my 6 monthly check up. I have an US today.
It's been a year since they told me I'd achieved SVR12 and 15 months since I finished treatment. Still feeling pretty good!
-
Hello Viekirans.
I'm checking in about once a month now.
So many new drugs and with such great cure rates!!
Are we old school now?
I wonder what percent of treatments are viekira/ribavirin now?
Blessings to all for continued good health.
I will always be grateful for my cure.
My life is forever changed for the positive!
-
Just wanted to share my good news of reaching SVR 12 after treatment with Viekira and Ribavirin. I feel so lucky to have been given a chance to clear this awful virus with these amazing new drugs. This forum helped me so much during treatment, it was great to hear all your shared experiences. Thank you :) :) :) :) :)
-
Congrats, Clare!
That's fantastic news!
-
Clare that's awesome news.... so happy for you...
-
Hey all!
Are we outdated now?
Has the V Pack become retro?
So many new treatments and fantastic to hear the prices are dropping.
-
It's two years since my last lot of tablets. I'm still upright warm and breathing. Still got a pulse. Doesn't get much better than that!
I'm still ridiculously busy, still working full time, still don't have time to retire. I hope all we Viekerians are well here. :)
-
Hey all!
It’s been so long since I checked in here that I almost forgot my password. Never would I have believed this back In the fall of 2014 when I first discovered this forum, which was to truly become my lifeline.
So many new medications now! Mind blowing to see the progress in Med choices. Has any thing changed for pricing?
Has access improved yet?
I did check in on all my blogger favs - good to read that it is all still working out for you Philly- exception for the every six month “ scanxiety” you must suffer through.
Take care all. Cheers to our continuing good health.
-
Still doing okay. Every day you wake up above ground level is a good day. Still working, still busy, still keeping going.