LOL, leave it to Jimmy to stir things up a bit ...

This thread takes me back, Wayback ...

... one of my posts here is my second day of Tx ... seems like a while ago.

Dave

JimmyK wrote:

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Tig56 wrote:

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What I enjoyed, I seem to have forgotten, because I was $h*t faced half the time.

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 Brother as you know I am not sitting squarely on my Rocker. That said, for some reason, your comment above cracked me up when I looked at your Avatar and read it again.  LOL

Sorry

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 Thanks James... I just saw this and thought I'd let you know that what you're seeing on my face, isn't THAT stuff! :D

          Hi Anna-Let me tell you about the S/X from peg-riba sof. Miserable stuff.  It's the peg interferon and  Riba that causes all the missory. I have seen trial results on just sofosbuvir alone in healthy individuals and individuals with HCV and both groups report slight nausea and head/body aches. My feeling is that Sof really has no pronounced S/X. I can't find any trials on just Dac.

I think I was one of the last people on this forum to do Interferon/riba/sof

did 12 weeks in late 2015.  Oct 15 to Jan 7th.  Wasn't fun!     You will do well, keep us posted.

RC

Tig56 wrote:

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What I enjoyed, I seem to have forgotten, because I was $h*t faced half the time.

---

 Brother as you know I am not sitting squarely on my Rocker. That said, for some reason, your comment above cracked me up when I looked at your Avatar and read it again.  LOL

Sorry

Thanks everyone for sharing your experiences, I can live with all those issues on the crazy treatment train, actually I welcome them. I am next of the Sofosbuvir and Daklasvir, all being well for 12 weeks. I remember the old threads where side affects were horrendous for those on the interferon and combo tx, especially those that did 48 weeks, it is now inconceivable to most of us.

Congrats everyone! x

Anna,

If everything I have read holds true, you shouldn't experience the side effects you fear. These are far easier treatments and the scale of adverse effects is quite low compared to the old days with Interferon and Ribavirin. You will see the ugliness of treatment and it's side effects whenever those two drugs are a component. Now that they are being used less often, those stories are becoming fewer in number. Ribavirin continues with more frequency and it has it's own set of side effects, some difficult. You fortunately don't have to deal with it and I expect your experience with unpleasant side effects to be minimal. Fatigue and headache are mentioned, but proper hydration, diet and rest, will minimize them, if they happen at all. 

If I can offer some advice, give up the alcohol. It is totally contraindicated during treatment. Alcohol is fuel for Hep C and can really impact your health and treatment negatively. Give it a pass, now especially. Give yourself this period of time to abstain and your chance of success will be far higher. I enjoyed my beer and bottle time immensely, but now realize that I was missing out on alot of life. What I enjoyed, I seem to have forgotten, because I was $h*t faced half the time. Life is better without it. It takes some changes in attitude, but it's worth it. You can do it....

Hi Anna,

i spoke to you on another thread. As you can see on my signature, I am also taking sofosbuvir and daklinza. I started taking riba as well,but only lasted the first 12 weeks with that. So this is week 18 for me, the last 6 have been with sof/dak only. 

Im not sure what's a symptom of the disease or the meds any more! I have increasingly bad pain in my muscles and joints but maybe it's not treatment related.You must be much younger than me as I had had the virus for some 45 years before treatment became available. I also loved alcohol and while I don't think I was an alcoholic, I was certainly a heavy drinker - Friday nights after work, if I went to a party etc. it's still hard for me to accept that the wonderful time in drinking when you lose your anxieties and everything's ultra funny, has gone forever. My liver is very damaged and in some ways that is a good thing. I gave up about 3 years ago, not because I had hep c but because it stopped being fun. I went from two drinks to fog brain and then no memory. So it didn't require any will power and once I realised how sick I was I chose life over alcohol in a heart beat. 

Maybe once you are cleared of the virus, you will be able to drink in moderation. But don't have any alcohol during treatment. It will  really lower your chances of the treatment working. 

You are at the moment classified as treatment naive which means this is the first time you have tried to get rid of the virus. It becomes progressively more difficult so give your body its best shot by drinking lots of water and eating as much fresh food as you can.

cheers, 

Syd

Hello! I found this lovely forum looking up my sovaldi and daklinza drugs and ive found some great info here. Thank you.

Ive been living 17 yrs with the disease and lucky to have a normalish life apart from the exhaustion and foggy mind.

I am now day 8 on these drugs, so a while to go. Only a bit of diarrhea at the beginning and i had a crazy heart palpation while sleeping that woke me up. I had had one ultra light beer after work. I think that was why. I'll never do that again.

I would love to know how everyone else is going on this combo? Reading through the other posts riba seems to have debilitating effects and i'm wondering if this combo is the new wonder drug, because i'm having few symptoms? Will they get worse? is it only because it's the beginning and they haven't fully taken hold?

Such a pleasure to find this forum :)

Hey Max,

Thanks for the upbeat post! It's great to know there is such an effective weapon against GT 3. I'm happy to hear that improvements are well underway and I know they will continue to bring positive changes to your life. 

I'm pleased to hear that you were able to utilize the payment assistance program offered by Gilead. We have a section devoted to several programs offered by manufacturers and private organizations alike. There is a link to that information in my signature line, as well as in our Knowledge Base section.

Good luck!  

Thanks to all for such great support. Through the years support groups have given me the help and strength to continue to fight the dragon. The new drugs are great and i would encourage everyone to use them to kill the dragon and resume their life. The ringing in the ears is minor and could just be a result of all the loud music i have listened to or played. I was F3 at the beginning of treatment and in the 6 months following i am noticing improvement. less fatigue, better focus begin the list of many others. To all my fellow G3 brothers, we are no longer the step child. Dac/Sof is more than capable to handle G3, and a very easy treatment to handle. Giliad also has a great support program for co payments. All the info is available from the Rx provider. They contacted and enrolled me. Thx again to all, Max

Congrats max :) How's tinnitus? Any better? Have you experienced tinnitus from previous tx with interferon?

I was on 12w Sof/Dac/Riba and i haven't noticed change of my tinnitus that i get from peg/riba failed tx. Wondering how Sof or Dac could have triggered it in you...Interferon ototoxicity is well known, but i haven't heard these new DAAs have any ototoxic cases registered.

best

Way to go max! Can't wait to share this with a friend who is a GT3 and relapsed on previous TX. She is starting new TX soon and I want to give her encouragement. I did send her the link to join us here as well!

Hi Max,

Thanks  for posting your result and a big congratulations. I too am taking sof/dac and so it is very encouraging to hear from someone who has been treated successfully with the same combination. 

GREAT NEWS

Syd

ME too, what wmlj1960 said!  Love to see a fellow 3 ... freed!

So very nice.

BTW, your other sof/dacla bud, billyM, who was also a 3, (24 week course) - is now free too! I love using the "past tense" ... WAS!

I too (almost) was about to make arrangements to procure this regime for myself, but I got a trial instead.

Really happy for you. My best to you.  C.

Pretty cool following this thread to the final words UND!

Great news!

Congrats!

JimmyK

Congrats, Max. Job well done.

Excellent resut, Max, SVR12 it is!!!  Congratulations!!!   

Thanks for sharing this wonderful and very encouraging news, I`m very pleased for you, we all are!

That's fantastic Max! You beat a formidable foe in Geno 3, congratulations on your success. SVR is a moment that will resonate sweetly in your mind forever. It will take some time to recover completely, but I'm hoping the side effects weren't too severe. I look forward to hearing how you're feeling and improving along the way. We have several people that are fighting with GT3 and this kind of news is very exciting. Good luck!

 WOOT!  

Awesome, awesome, awesome!!! That's what we like to hear and it means you are free, free, free of that dragon. I love it when a geno 3 dragon dies! It looks like Sov / Dak is a silver bullet for sure.

Congrats on your success Max!!! SVR, SVR, SVR

Just got 12 week post treatment bloods. UNDETECTABLE!!!!! To all that are on the new treatments or thinking about starting treatment. The new drugs are wonderful. Now is the time to rid the world of this. Good luck to everyone. Your time is coming. Max

Hi Citikid, I was the first person on sof/dac at my hospital as well. They say I'm probably F3 as well but had 2 strange fibra scans that were unusually high, so they put me on 24 weeks just in case I am cirrhotic. (fibrascan is not an exact science) Guess it can't hurt as I do have a fatty liver as well which I think said inhibits treatment for G3a also. I did read some where that they were recommending 24 weeks for F3/F4 now but most say just cirrhotic.

I guess you would have finished, or just about by now. I wish you all the best!

Hi Max, congrats on finishing your tx, and thanks for sharing your good news with us!

You`ve responded very well to this drug combo and those liver enzymes are brilliant, you have good reason to feel confident about a successful result!  Let`s hope the tinnitus eases up soon and disappears for good. 

Congrats Max!  Good to hear about your EOT!  

My friend (geno 3a) - on Dak/Sov is close to week 6 of tx, she was undetected at 4 weeks.   She doesn't have tinnitus. She had a rash for a few weeks that subsided.  She reports a lot of excess energy and isn't sure how to ease it.  

Hope the tinnitus goes away for you, post tx!  Good luck!   

Hi Max.

Congrats from me too on you finishing treatment. I have ringing in my ears too. I don't know if it is a result of years working around loud machinery, then reading about it here made me more aware of it, or if Harvoni actually made it worse. I'm hoping the latter and hope for it to subside now that I'm through with treatment. Fingers crossed... Good luck with yours and let us know how that progresses.

Congrats on EOT Max!

You're right where I'll be in 12 short weeks. Numbers look great.

Wishing you luck and SVR soon!!

Dave

Those are great results Max! The ALT/AST are excellent indicators of liver happiness and those are both smiling at you! I hope you get some relief from your tinnitus too. Unfortunately I've had it very bad since treatment with the old Interferon triples and it has never gone away, even worsened. Some on the Sovaldi protocols have mentioned this, but we haven't had much in the way of long term complaints. Perhaps some of you Sovaldi folks can enlighten Max on your long term standings in this area. Congratulations on your EOT and the superb results! 

HI MAX, end of treatment is a good place to be!!  Looks like you went UND early in treatment and you will do well at your 4 week post blood work. Way to go, keep us posted.  RC

hey Max, fellow GT3

congrats on finishing, let us know all post tx details. Re tinnitus, you sure it's from Sof+Dac? I got perm tinnitus on left ear, but from interferon. How bad is it?

Where you UND on w2? Thinking shall i do, as first one, w2 or w4 PCR (since i am paying for each).

I am on Sof+Dac+Riba, no sign of tinnitus getting worse, just usuall "take my breath away" Riba love.

cheers!

Congrats Max!! Finishing treatment is an excellent achievement all by itself. Now the wait for the results begins but I expect to hear good news. I'm happy to hear that your side effects were mild, but am sorry about the tinnitus. I've got it bad and have come to accept it as a condition I have to live with. I hope yours is temporary and improves soon. Thank goodness for remote volume controls!

We're looking forward to hear your results when you get them. SVR is coming soon!!

Hello,

I'm glad her first few days have been uneventful. It will take about a week or two for your system to adjust to the drugs. It's the perfect time to take it as easy as possible and relax! Lots of luck, it'll be over before you know it. 

I would be very hesitant to take any supplements like Airborne while undergoing treatment. I would have to ask, Is continuing the Airborne worth the risk of it interfering with the absorption of your Hep meds? It may be just fine but will they honestly miss that stuff so much that it simply can't wait? It's between her and her doctor in the end, but for me the answer is an easy one. Take a multiple vitamin, eat a balanced diet and hydrate non stop. That's a good rule for all of us. 

Keep us in the loop. I look forward to your friend joining the forum! Her privacy is most important to all of us. She has nothing to worry about, she's among friends here!! Take care and hope to hear from you soon! 

Day 2 on Daklinza and all is going well so far. She tired very quickly about an hour or two after taking it yesterday and is fine today.   Her fatigue was high before treatment so she may not have a way to accurately assess Daklinza related fatigue.  

I encouraged my friend to join here several times and gave others with Hep C a link to this forum.  This is a great group here!  My friend may join in the future but is still hesitant to read much via the internet.  I will likely ask questions on her behalf if she has questions but hope she joins while she is on treatment.   Past few years, prior to tx, her concentration was poor (especially reading concentration).   I am really hopeful the Daklinza will help with that as well as the other issues (fatigue, decreased stamina, high exhaustion, and such stressors that have impacted her overall productivity).   

Her doctor didn't seem to have an issue with the Airborne.  I am still on the fence about it.  I trust the doctors greatly but am inclined to double check everything.   Still looking into literature on this Airborne as there were a few ingredients I thought may interact (ie. Magnesium with Sovaldi seemed like a possible interaction, to me too).   

The doctors gave her a copy of her medical reports at the appt..  So relieved!  I always worry about her getting copies of everything and constantly remind her about it.  I used to be a case manager so my default thinking and way of operating is to give clients or patients a copy of every piece of paper they touch!  

Thanks so much! 

Hi Rebecca,

This is very good news for your friend! Such fast approval for someone with very mild fibrosis is a great opportunity indeed! She should do very well and if the experiences I've heard to date are true, the side effects are mild and easily tolerated. She should ask her doctor for copies of all of her lab reports, that's important information to keep on file for future use and reference if necessary. 

Regarding the Airborne, I recommend that she stop using it and speak with her doctor about it and it's ingredients. There are a number of herbal supplements, minerals and vitamins included in that medication. Some of them may interact negatively with her HCV medications. I would tell her to ask her doctor for advice before taking anything at all while on treatment. Generally the rule is no supplementation while on treatment. Things like antacids can prevent proper absorption of the medication. There is magnesium in Airborne and that may be problematic if taken along with the Sovaldi component. If she has any questions, her doctor and the pharmacist/consumer representatives associated with the drug manufacturers are an excellent resource. Until she gets that approved, she shouldn't use it in my opinion. 

Keep us updated on her progress and see if she might be interested in joining the forum. We'd love to have her here! 

My friend begins Daklinza this week too!  

Am thrilled this approval went through for her. When she had her ultrasound in September the doctor said her stage was F1. She has never received a copy of her lab work so I have zero info. on it.  Am hoping she will find out more at her appt this week.   I am trying to slowly, but surely, teach her to self advocate and become an informed patient.  

For anyone on Dak/Sov, has your doctor given particular advice on what food to avoid?  She is taking Airborne which has a lot of vitamins and I do not know if particular vitamins interact with the Daklinza/Sovaldi combo in some capacity.  

Am looking forward to reading about everyone's progress on this treatment and will give updates on my friend as she makes progress.    

Rebecca

Hello Steve

Welcome to the forum, you have found a good place with friends who can provide great insight about all things HCV. Sounds like you are already well schooled in your own treatment protocol. All should go well with totally compliance as your combo has worked well with many others.

matt 

Hi everyone,
I'm geno 3a and started Sovaldi & Daclatasvir in October. I was prescribed 12 weeks.
In 2008 I failed INF + RBV (although I suspect that my Dr. did not prescribe the correct dosages.)
I was also diagnosed with fatty liver before my 2008 treatment as well.

I had a Fibrosure test last July and my score was F3. However, I had an ultrasound of my liver and abdomen and it was unremarkable. The technician performing the test even commented that my liver and other organs looked really good for a 54 year old man.

My new treatment seems to be going well. My 4 week RVR was undetectable and my liver enzymes are all back to normal. Side fx have been limited to somewhat dry and itchy skin. I take the meds at 5pm so I may be sleeping through other Side fx.

I have not heard back from my Dr. on my 8 week labs. Hopefully no news is good news. But if I dont hear back this week Im going to call for a copy.

Considering my previous treatment failure I do have concerns that I should be on a longer treatment or that Riba should have been included. But my Dr. insists that since Im not cirrhotic 12 weeks is the current standard of care for me. But then in the same breath he said that Im his first patient on this treatment.

Ive researched this treatment extensively and the language about the correct treatment is vague.

The one thing that gives me hope is that Gilead is supposedly having great success with their new dual treatment for Geno 3 which includes Sovaldi and Velpatasvir (GS-5816). 100% cures and some patients as short as 8 weeks.
Considering that Daclatasvir and Velpatasvir are basically the same thing ( NS5a inhibitor) I have great hope that this treatment is just as good.

onward !

Excellent results Max! And yes you do have an excellent chance at slaying the dragon. We were discussing liver regeneration recently and linked to a video by Dr Crissien. Very encouraging!

Studying Regression In Liver Disease

Hello Su and welcome to the forum. I see that you are another one of many that has found hydration to be a friend. I also have a problem with having to empty my bladder at least once during the night but that does not deter me from staying adequately hydrated. It's worth it! I can usually go back to sleep easily. I'm glad you are experiencing minimal Sx and I wish you well with the remainder of your Tx. Please post your lab results when you get them. I'll be interested to see how well your liver is responding - very well I suspect.

Hi Su,

Welcome! I'm glad you found us and introduced yourself. We don't have too many members on this protocol, so I'm very excited for you and will be following your progress closely. It sounds like you've already tackled 3 very important steps to success. You started treatment, are already undetected and very mild side effects. Being undetected this early is a great sign that you're responding perfectly to treatment and bodes well for the future.

Keep in touch, we've got a great group here. Everyone will be cheering you on!  

I am on my 7th week of this combo. I was undetected at 5 weeks which was great after 20 years. My sx have been headaches - hydration fixed that.  And in the first month I had a couple of dizzy spells- like low sugar levels. I haven't had a full blood panel done so not sure if levels are down. Sleeping really well 8 hours a night if my bladder will let me :). Can't believe the price, thankfully my co pay will not be too much. If you are thinking of going on it do. Sx not that bad. Su

Hi Wasai,

I just finished replying to a couple of responses to my first post. I read a fair bit, mostly news and discussions on different hep sites. Been attacking a few forums of late trying to find some answers to my own side affects but have been a bit disappointed that I couldn't find anyone else on the Sof/Dac combo, let along someone who is actually experiencing a cardio related symptom, then I hit back to the treatment page and there you are!

I've just done 10 weeks Sof/Dac. Undetectable at week 6. ALT back to 37. Thats the good news!

Bad news is that within the first few days of treatment I started getting bad anxiety, had an elevated heart rate, palpitations and a few panic attacks along with the occasional weird feeling my heart was skipping a beat or two, not often but now and again. Got to the point where I considered pulling out of treatment but I sucked it up and continued. I was concerned I may have coincidentally come down with an unrelated heart condition so I went saw a Cardiologist. My first ECG showed a slight abnormality so I then had stress test a week later which was fine and the ECG was normal again? I'm pretty fit and do a lot of surfing, don't drink anymore, eat good and generally feel healthy, most of the time. I still didn't feel right so I went and had a CT scan which was also fine. No disease. At around the 6 week mark things started settling down a little. Anxiety and palpitations were still there but became more manageable. Maybe I was just getting used to the meds. Week 6-8 was good and I thought I'd turned a corner but the last week or so my heart rate has now dropped to around 50, where it has always been just above 60. This isn't much of a change but it's unusual for me. Along with this the skipping beat feeling has become more frequent, especially when my heart rate is under load and also when I stand up sometimes. I feel out of breath easily too. 

I am supposed to be doing 24 weeks as I'm at least F3. I've had a couple of high fibra scan readings and they are really not sure if I'm cirrhotic or not. 

Besides the heart thing, which is the only real worry, I've also had 1 or 2 headaches, which I dont normally get and I'm not sleeping great most of the time. That's it!

Bill

So I have finished 5+ weeks of the ****tail Daklinza (Declatasvir) and Sovaldi.  For those of you considering this course of treatment, or those of you beginning, I offer the following:

I am happy to report the only side effect I have that I think deserves a second glance, is an increase, and somewhat sporadic blood pressure; odds numbers but during the first 4 weeks, I noticed an increase of 20 or more points both D and S.  Exercise seemed to counter just a little but HBP meds really did not.  A change of meds to accommodate the increase, or affect on the cardio system, from the DAA, not effective.  I do have HBP but it is so very controlled for years (hereditary ACE).  Any any rate, my HBP appears to be returning to semi-normal at week 5.  And just for the record, maybe two headaches (never get them), and I was not very hungry first few days.  Piece of cake this medicine, for me.  I have waited in excess of 20 years for something that had better odds of working and much different side effects.  Interferon/Riba was never an option for me.

I am deducing Solvadi is the culprit as all those who engaged in HCV trmt that had an increase in HBP, had the Sovaldi in common, i.e. Harvoni, Sov and Olyisio, etc.  I made inquiries to pharmacists, Gilead, hepatolgists, and anyone else I could find - haha, and researched the heck out of it.  No answer. Studied the ingredients even! We know there must be "some" effect on the cardio or amiodarone would have never been an issue. Point is, watch your blood pressure and heart rate during initial treatment.  There is no disclosure for this and I think there should be. Moreover, we need to look to the future of improving these treatments for others to the extent it is possible...minimize risk to benefit..by reporting and sharing side effects.    We are the sorta pioneers of this treatment (i.e., guinea pig - haha)

I am also happy to report I had the proverbial RVR @ the 4-week blood, and my liver enzymes normal!!  Now that is a first in sooooo many years.  RVR does improve the odds of SVR but nothing is certain until the 12 week post blood work.    

I would love to hear from any of you who are engaging in this treatment (SOV/DAK) and for those of you ahead of me, would really love to hear what could be in store.  Besides my own personal interest, fascinating by the science too.

Good luck to all of us.

HCV3a/F3/Chronic

Excellent Max! I'm so glad it has been going smoothly for you. You're on a very effective protocol, there's nothing but good things in your future. Get through this and you've got everything to look forward to! I'm looking forward to hearing about your upcoming tests. Good luck! 

Good luck with the treatment, Max.  I've been on Dak/Sov/Riba for 14 weeks for genotype 3A.  10 weeks to go and no significant sides and svr At week 8.   I have joint pain and sometimes trouble sleeping But the energy I feel more than compensates, and this treatment is really easy imho compared to the interferon treatments.  I am curious to see how things work out for you and look forward to reading about positive developments.  All the best, JB

That's good news Max! Keep it up, keep it up, keep it up.

Good luck Max!! You got this buddy!!