Hep C Discussion Forum

Tig · Admin

RE: Approved for Dak/Sov Geno 3 Treatment

Loopy Lisa · Guru

Thank you everyone for your kind words. I still have energy, although I have needed to catch up on sleep after a nearly 24 hr drive, and a few hours sleep. Today I had a long siesta after a long nights sleep. Feels like the ole days lol!

I do have some grumblings in the liver region, but I think it is more to do with my recent crappy diet. In the East they eat a lot of high fat food and pastries. I am going straight back on to healthy food and I know in a couple of days I will be right as rain - self inflicted! :D

I can understand that, Pablito, I too was hoping for that euphoric moment which instead is rather un-earth shattering. I think as we were so long infected, we expected a huge boom moment that never actually came.

Allergies have not returned, so there was something going on with my skin related to the Hep C, or my liver at least. Energy levels are still great, it is a bit strange tbh, I don't quite know what to do with myself. Before I had to plan around fatigue and now I seem to have a little too much. That is a strange grumble, but at least I know it wasn't my age causing it. I also notice that I think more clearly, which is a bonus, the fog has lifted a lot. Muscle pains have gone, although I need to get back into training. On holiday I gained 3 kilo despite being active...I ate for 10 people I think! :D

I have nothing to add really, I feel much better in general, and look a bit healthier minus skin problems.

I didn't have any side effects to write home about on the medications, so there was no real improvements stopping them. I just hope the virus doesn't spring back now I'm done, which is a common thought process for us all.

I hope you're all grand and enjoying the last vestige of summer. :D x

Sydhanrahan · Guru

Hi Lisa,

no, I don't think it's a placebo effect. Something inside you just shifts. It's a strange feeling isn't it? I have no words for the feeling that the virus has left the body. Now you're back from your holidays you will really start to get a true idea of how much energy you have in normal days than you might have had earlier.

good luck on the long 12 week wait. We are all so proud of you.

Syd

Loopy Lisa · Guru

Thanks everyone,

now I can change my profile to EOT!!! :D

Just got home this morning, real life again.....sighs. :D x

Cinnamon Girl · Guru

Wow Lisa, how wonderful that you`ve reached the finishing line already, congrats!!

I`m so pleased to read how much better you`re feeling, and I`m taking that as a very good indication of success! I can understand you having an emotional wobble though, I think that`s a natural reaction. The whole process of treatment is stressful to some extent from start to finish, and you had a long wait before you even began.

You can relax now though, the hard work is done so forget about Hep C for a while and enjoy living your life! And a few naughty treats now and then don`t hurt, especially when you`re on holiday. Or even when you`re not! biggrin

Good luck, Lisa, we`ll be looking forward to celebrating your SVR!!

Tig · Admin

Hi Lisa,

Congrats on reaching the EOT station! Now you need to start a post treatment thread so we can follow your final journey into SVRville. Hard to believe you could be done already. In the old days, this was one quarter or half way, with half the rates of success or less. I'm glad you don't have to go through with that or anyone for that matter!

Relax and get used to being finished, you did it! We'll be waiting for more good news in the weeks and months ahead. Good luck...

wendyo · Guru

Too cool Lisa ...snorkeling and the octopus. Good for you on finishing and starting to enjoy life. You deserve it!

Pablito · Senior Member

Congrats on finishing Lisa and I too share your optimism about SVR.

I thought I'd share an experience I had after finishing treatment. I actually felt a bit worse. This was almost certainly psychological in nature: I felt very reassured whilst on treatment....regular bloods and knowing for sure I was UND, but after treatment some uncertainty crept in and, as you point out, a big long wait for 12 weeks.

The other thing was that I had a surge of energy on treatment. Jimmy touched on this on another thread and my take on it is that a lot of this energy was the body being cleared of the virus, a feeling I got used to quickly and, therefore, by comparison the well-being feeling off treatment wasn't as marked as I was expecting.

I got all hyped up before and during treatment and then afterwards there was, well, nothing plus a little anxiety, as described above. I felt a bit disappointed until I'd figured all these things out. Of course, the EOT+12 UND result helped!

Anyway, maybe it's just me but I thought I'd mention it in case something similar happened to you or anyone else post-treatment.

Pablo

Loopy Lisa · Guru

Hi Syd,

I hope you feel great soon. I've stopped medications for two days now and feel no different to being on them. I went snorkeling today and watched an octopus doing his business until I got too close and was squirted with ink. :D

I did have a bit of an emotional melt down the other day, but I think it was more a relief cry than anything. I wont know for another 3 months if I cleared. So I am going to fill the days with things to do.

The weirdest thing for me is now waking up every morning bright and early, and going to bed around midnight. I don't feel exactly different, but I am not exhausted all day, everyday, like I used to be. I haven't really even thought about it, maybe because holidays do tend to keep you busy. I do believe I have cleared, or its a placebo effect. :)

Either way, I hope for you the energy comes back totally. I found for me, diet made the biggest difference. I have slipped though on holiday, and eating naughty delicious things whilst away. Saying that, my allergies have not returned so it seems my immune system has rebooted. :D

Sun- nature - relaxation - no medication = a beautiful recovery. :D

Sydhanrahan · Guru

Hi you two smart L girls, it's time now to slowly sit back and wait for the real 'you' to emerge.

Cheddy and all have said it better than I ever could. I'm sure you'll both be free of this virus and hope that it makes you feel as good as I do. I still havent got as much energy as before I got really sick, but I can last a couple of normal days before i crash and psychologically I feel like somebody else.

Good luck to you both, Syd

Loopy Lisa · Guru

Hey Cheddy,

Yeah Riba, is like sitting next to that smelly person on the bus. You know you have to, but the smell is so bad you wanna jump off several stops earlier. I can understand the lack of love for that beastly medication. But, like Tig said, its so effective, but still it stinks!

Happy days, keeping the virus away :D x

Cheddy · Moderator

Ah yes, Mr. Tig. I was thinking of you.

Agreed. Ribavirin was sad and effective. I count my the blessings on my double edged sword.

Tig · Admin

Come on Cheddy! Ribavirin was a piece of cake... A nasty, rotten, effective cake! As much as I hate it, it helped cure me too. I'm glad they're getting away from it now. We still have times it's going to be necessary to kill the Dragon and thank our lucky stars it's available in our arsenal of medications.

Cheddy · Moderator

Hey L girls!

You made it, at last. Because the memory heals too, some people say that the treatment time flew by. Boy, I don't remember it that way. It seemed like forever. While on RBV, some minutes felt like months and I thought I would never get through or be the same. Looking back at some correspondence, I recall how tormented I was at times. Now, less than a month SVR12, it's been nothing but better for me. The memories have settled and lost their urgency, but the empathy I gained remains.

I am so pleased for you to have found and gotten through your treatments. It's a huge relief and a turn in the tide.

Thanks for sharing your journeys. It really help others, not only to get through, but to what to tolerate along the way.

We eagerly await your EOT12 reports.

Love back at you,

Cheddy

Loopy Lisa · Guru

Thanks folks, yes a little antsy, and down to two pills, now where did that time go? It is true that time waits for no one, and I'm 3 months older, thankfully!

Sorry to hear about the tummy issues Libby, I can honestly say I never really had many issues, just call me iron guts! :P But congratulations sugar, we did it!!!!! It seems only yesterday we were waiting for our bottles to arrive and now we are both nearly ready to throw the last empty bottle in the trash! SVR here we come, and our train seats are ready and warm for the next dragon slayers. Thank you for sharing the journey, but glad we are both alighting from the train! :P

Hey Syd, I used olive oil and lemon juice. I never add salt to food, I hate the taste, unless I become in need with lowered blood pressure. It worked for me, although it was not too fun when one become temporary lodged in the bile duct. I did feel something happening, but just assumed it was the Hep playing up and ignored it. Aye, Interferon needles and I have fond memories, especially the day I could throw the reminder in the needle bucket! :P

Thank you to everyone that has been part of this journey, you have made me laugh, cheered me up, made me feel uplifted when I felt low. To those that remember my first treatment attempt, thank you for the concern, care and selfless help that held me together when I felt utterly afraid and miserable. As the years have passed, I have become so used to this disease that to be cured seems like a miracle in itself. I wonder if the scientists that have provided these cures ever read our words and know how much gratitude we all have? I look forward now to taking my PCR test to reveal my fate.

To celebrate the end, I thought I would share some of the beauty surrounding me as I holiday abroad, to uplift you all, like you have me!

Love, Love, Love

L

I tried to attached a photo, but can't? :(

-- Edited by Loopy Lisa on Saturday 10th of September 2016 03:30:54 PM

-- Edited by Loopy Lisa on Saturday 10th of September 2016 03:31:56 PM

JimmyK · Guru

Libby good news headed your way!

JimmyK

Libby999 · Member

Last pill yesterday. EOT....I a will check back with next weeks bloodwork and the final one. Hopefully I will get the SVR. Very happy to hear the empty pill bottle!

Libby

Tig · Admin

Libby,

If I'm counting my fingers and toes correctly, you have achieved the goal of EOT. WAY TO GO GIRL!!!! Congratulations are in order and a great BIG high five!

WOOT!!!

Canuck · Guru

Ah! THERE you are Libby! The full complement of L's in the L section again. Wondered where you got to.

You and Loopy Lisa, down to the wire, bottles empty (or almost)!

It's a nice, but funny feeling, hearing the sound of that last pill rattling in the bottle, and then, nothing, silence, no more rattling!

Like a good friend, gone, but leaving behind her positive presence and influence.

You are right to say "I think we got this" to Lisa". I think so 2. Wonderful stuff this dac! C.

Libby999 · Member

Opps.. Cheddy, CONGRATS!!!!!!!!

Libby999 · Member

Hi all,

Sorry I havent checked in for a while. Two more days to go!! Woo Hoo!! I get blood work next week and see Dr the week after. Sure hope my liver counts are down. Then I just wait for my 12 week after treatment to see that it worked. Nothing much changed here, stomach still not great, but a small price to pay for my clean bill of health... Look forward to hearing Lisa saying cured!! I think we got this

Regards,

Libby

Cheddy · Moderator

Ah yes, Miss Loopy,

I remember those doubts including the feeling under the rib. You have been loaded with some major meds. Don't believe anything right now! It's trickster time and you are in an antsy zone. You've just got to keep taking care and get to your EOT12 tests. Don't even listen to the fears. You are at the finish line! I eagerly await with you. Please keep us filled in on your progress, and go, girl!

Cheddy

Canuck · Guru

You can do it Lisa!!! Almost there! No wavering (altho it does no good saying it - don't waver - as we all end up doing it to some degree anyway)! But just remember the brave heart girl who can run around a table faster than a speeding husband to dodge the riba needle he is chasing her with. Just remember the facedown/showdown you had with the dac in the toilet. Just who was that who could convince her own GB stones and gravel to cooperate and move along! You can do anything!! Just look at all the strength you lavish on us. Deep breath, steel yourself for this wonderful dream day coming up for you. It HAS been a long time (on dac) and since the int/riba days. You're almost there - long awaited success, soon to celebrate! smile C.

BTW - My Grandfather, in the 1950's, did something similar to what you did, a not so known remedy I guess (a fast followed by alternate dosings of only oil and juice) to move his gallstones through. Forget what juice they said he used, might have been black current?, and olive oil? What did you take??

Do you have any ALT's to tide you over and comfort yourself with until you get that PCR? Maybe you can ask for and get some LFT's done in the interim? Just a thought.

You have the strength and calm resigned patience to get you through this spell too! smile

Tig · Admin

Congrats Lisa! Hard to believe you're days away from completion. That went so quick from my side of the fence! I'm sure it took a little longer for you, but we have both arrived at your special day together and that deserves a big WOOT!!!

Don't go letting your mind start playing tricks on you either. It happened to all of us at the EOT. The expectations are high and the doubt has a way of creeping in. Don't let it. Kick it to the curb, along with that dead dragon's carcass. Not to worry, you got this in the bag!

We'll be waiting for that next excellent report smile

Loopy Lisa · Guru

Thanks Cheddy, they are indeed!

I'm down to my last 6 pills. I am getting a bit of anxiety at actually stopping them however weird that sounds, but can't wait to stop having to take them also! I am getting some feeling under my rib cage again which is making my nervous. I am sure its a bit of wind or something - I'm on holiday indulging. It can't be gallstones, I popped them out already. I wont know if it has worked for another 3 months anyway, so I am going to try forget about it.

Hurrah for the finish line though, I'm bored of having to take them, especially on holiday.

Feeling good in general, enjoying my hols, but mixed feelings as you can tell. :D

Cheddy · Moderator

That's great, Loopy. I'm delighted to hear you are having a reasonable go with the treatment. I'm betting it will continue to get better when you get to the other side of treatment. Great stuff, these new DAAs.

Loopy Lisa · Guru

Hi all,

Now nearly starting my third and final bottle.

Side effects are virtually nothing apart from some sleep issues that started about a week or two ago. Still skin issues are gone and no tummy issues at all. Seems like most of my issues were Hep C related and nothing more.

The only thing missing is the sun, it appears to have taken a very long holiday - how very dare he! :)

Sydhanrahan · Guru

Hi Lisa,

i had missed your post Re liver function test. So great to hear you are already feeling so much better.

biggrin

Syd

Loopy Lisa · Guru

Hey Jake, a fellow ex 3b :D :D :D :D

Thanks Canuck, that has made my day!!! Indeed it was me with the war and eye infection - all resolved now. :D

I am on only Dak and Sof, so I skipped the nasty stuff. I too had the old therapy, never again, nasty stuff. I actually feel much better lately, and although I am lower on my red and white cell count its not significant enough to need intervention. I actually pulled off the old therapy because I didn't want a blood transfusion, I decided it was better to wait for this therapy. I didn't expect to wait so long, but I don't regret it. I remember you saying you had liver damage, it shocks me as you look so young and I am sorry to hear that!

Isn't it strange there are not many 3b's, it is only a 5% mutation on "a", but still you are the first "b" I know apart from myself. :D

Smiling like an idiot to myself :D

I hope you both have a lovely day further. :D x

JakeAms · Member

Hi Lisa, it is possible that these meds cause anemia, specifically ribavarine. I was on this combination for 24 weeks and towards the end it hit me, however I did not opt to lower the ribavarine dosage, which was an option. Your doctor can determine how to deal with it. In my first treatment with peg -inteferon and riba I got it around 6 months in and they halved the riba dosage, and around 9 months in I had blood transfusions and finally epo, Lance Armstrongs performance booster of choice.

Canuck · Guru

LoopyLisa,

'member when I was trying to console you from feeling too-tooo lonely, by finding you some some 3b company?? Did you (or I) ever list " JakeAms"?? I can't rightly recall now if we listed him before (or not) .... I know we DID find you "some" other 3b's, and it goes without saying that ALL of us 3a's, and/or just plain ole 3's, will all love to keep your company, but ... I just happened to see a post from JakeAms today, and he IS also your subtype b (if we hadn't noted/mentioned him prior). Maybe we did note him before, he is also from the Netherlands

I think I sometimes get you and Libby mixed up every now and then (too many L's, lol), but it WAS you who was afflicted with eye and ear infection troubles wasn't it? Sorry for you about that - I can relate to these bothersome maladies - me too afflicted (of late) - I can commiserate! Fingers crossed that you and I are both finished with this series of bonus ENT plagues!

smile C.

Canuck · Guru

Libby,

I am catching up on some of my postings and wanted to share in the celebration of your good 3 week test results! Super good response!, 10 mil to "Zero" sounds awful good to me!! Your ALT and AST are dropping as we speak! Like your ZERO VL within 3 weeks, your drops in ALT from 140 to 65, and AST from 78 to 52 are dramatic and significant. You got this beat girl! Yes, ignore the blood sugars, mine were minimally up there too. Also, so good you started treatment at fibroscan F1!! You gotter made. Happy for ya. smile C.

Shadowfax · Guru

Hi Lisa,

How did I miss this! What amazing numbers. There should be little doubt that you got this! Now it's just a waiting game that we are all used to playing. Great news to be sure plus you are feeling better. This is all good.

SF

Loopy Lisa · Guru

Thanks Cheddy and Libby!

I was suprized tbh Libby, I never asked before what my stats were when I was feeling a bit poorly, and that even shocked me. 15 is perfect, and i feel a huge difference in overall health. I am really happy you are doing great as well, and the adjustment period is over. Sorry to hear you are still have some tummy issues still. I do know that some of my doctors patients have some issues with tummy or nausea, but nothing major, but she did ask me if I had any of these issues too. So it can be the medications if you have a sensitive system. You've probably hit the halfway mark now and nearly ready to order the LAST bottle. It is going fast isn't it! :D x

Cheddy · Moderator

Not much to add here Lisa, except that I very happy for you. It looks like we are really getting a handle on this. Keep us posted going forward. It's very heartwarming.

Libby999 · Member

Lisa,

Glad to hear your stats were good... 15 is awesome, mine are not even that low. I think that means you are knocking this out of the park. I too have been feeling fine. An occasional bowel problem but I think that could be something else. Cant wait to hear SVR for me and you!!!

Libby

Loopy Lisa · Guru

Thanks Canuck, I hope I feel as good off the meds, what a strange though to have. Since my IBS and skin cleared up, I've never felt better. I didn't realize how horrid IBS is until it went. I now believe it was caused by the virus and hopefully that is the last of it.

I hope life is treating you well!! :D x

Canuck · Guru

Bet she dances like a butterfly, and stings like a bee - THAT'S our Cassius Clay nut-kickin girl!! Way to go - you're lookin good. Yup, Dac rocks alright! biggrin C.

Loopy Lisa · Guru

Pablito wrote:
Congrats Lisa. Yes, indeed, that would be a great Xmas present!
On the issue of 8 weeks sof/dac for G3s I'd say that's a financial thing. I'd much rather 12 weeks.

No, they have available different meds, but I have no clue what. Thanks Pablio. :)

Pablito · Senior Member

Congrats Lisa. Yes, indeed, that would be a great Xmas present!

On the issue of 8 weeks sof/dac for G3s I'd say that's a financial thing. I'd much rather 12 weeks.

Loopy Lisa · Guru

Thanks Tig,

I think I fit nicely into the 90%. It will be a lovely Christmas gift to get my SVR. I can't believe I am already on old treatment over here. All her 3's are already on treatment with Sof/Dak, but any newbies go on 8 week therapy. Things are moving so fast now I have whip lash. I am so excited for everyone and these new treatments, what a weight of our shoulders and the ones that love us. I want to kiss all the researchers on the cheek and give them a huge hug. - Feeling grateful. x

Tig · Admin

That's splendid news, Lisa! Those happy liver enzymes are indicative of great things to come. Keep up the progress and we'll take care of that Dragon for you. I'm sure after you kicked him in the family jewels, he won't be sharing the virus with anyone else, lol!

Loopy Lisa · Guru

Linuxter wrote:
Viral Load would sure be nice for peace of mind but doesn't mean much (if anything) at this point medically (but you know this).
I did have a 4 wk RNA test still Detected and had to wait till 3 mos post, so can relate to not getting the test(s) as I would have preferred but the Dak/Sov is dropping Dragons like flies and with your numbers you've got it made.
So glad to see those textbook test results and know that you've still got 6 more weeks of the Silver Bullet Tx to seal the deal.

Congrats!!
Dave

Thanks Dave, i'm pretty sure I am undetected with my stats, as that is of a viral free liver. My Doctor told me she is already giving 8 week cures to patients of other genotypes. She is enjoying all of this, I can tell. She said she is glad all her patients don't have to go through the circus of old TX. I did see a very poorly looking woman go in before me, she was in there half hour, so I think someone had a bad day. :S But, me, nothing can ruin today. :D x

-- Edited by Loopy Lisa on Tuesday 26th of July 2016 02:27:22 PM

Linuxter · Guru

Viral Load would sure be nice for peace of mind but doesn't mean much (if anything) at this point medically (but you know this).

I did have a 4 wk RNA test still Detected and had to wait till 3 mos post, so can relate to not getting the test(s) as I would have preferred but the Dak/Sov is dropping Dragons like flies and with your numbers you've got it made.

So glad to see those textbook test results and know that you've still got 6 more weeks of the Silver Bullet Tx to seal the deal.

Congrats!!

Dave

Loopy Lisa · Guru

Linuxter wrote:
Hey Lisa,
Absolutely Excellent labs!
"ALTS and the other are a grand total of 15 each" ... WOW ... perfect!
Yup, you hit this one out of the park girl!
WTG,
So I forgot, are you on 12 wks (8 wks?) Tx ... and your SOT was 6/21/16
Lisa, you are going to be SVR in no time ... HCV-Free and Happy as a Clam ...
... Sof/Dak rocks! :D

Linux

I am on a 12 week therapy, and in 5 days hit the half way mark. Sadly I don't have a viral count until post 3 months. But I think I got this covered! Thanks, I am happy as a clam already yay! :P x

-- Edited by Loopy Lisa on Tuesday 26th of July 2016 01:16:50 PM

Linuxter · Guru

Hey Lisa,

Absolutely Excellent labs!

"ALTS and the other are a grand total of 15 each" ... WOW ... perfect!

Yup, you hit this one out of the park girl!

WTG, smile

So I forgot, are you on 12 wks (8 wks?) Tx ... and your SOT was 6/21/16

Lisa, you are going to be SVR in no time ... HCV-Free and Happy as a Clam ... biggrin

... Sof/Dak rocks! :D

Linux

Loopy Lisa · Guru

I am buzzing like a bee buzzzzzzzz.

Before when I had a blocked bile duct my stats shot to 249. They then went down to 65 and now both ALTS and the other are a grand total of 15 each.

All my labs are within normal range. Red is 8.6.

I wont be going back until the 21st December as that is the only test that is important. :)

I think looking at my stats, I kicked this in the nuts yay! :P

-- Edited by Loopy Lisa on Tuesday 26th of July 2016 01:13:23 PM

Linuxter · Guru

Hi Lisa,

So glad to hear that this combo is so effective yet so subtle in the side effects department.

How wonderful that this go-round you are having a smooth ride straight to SVR. smile

Great News indeed. We anxiously await hearing about your "not expecting anything unusual at all" test results!

Dave

Tig · Admin

Hi Lisa,

We'll be anxious to hear your results. I'm happy to hear you are experiencing no side effects and have returned to your workout routine too! Keep it up, but don't ignore that alarm and don't forget to hydrate properly, that's still important. I like those boring, yet exciting updates!

Loopy Lisa · Guru

I get my results tomorrow for my liver stats. I am not expecting anything unusual at all.

I am now on my second bottle almost a week through. I can't feel anything, no head fog, no tummy problems, I'm not tired, blood pressure is returning normal and I don't feel like I am taking anything at all. I'm back training, skin issues are completely gone, and I really only drink when I fancy it, flushing is not an issues on these meds, in fact, too much drinking was causing issues.

Anyone wondering about whether to take this combination its really so easy its weird. I do recommend though alarms on repeat. I was so busy yesterday I was 35 mins late as I switched off my alarm and continued what I was doing thinking I will in a moment. I nearly forgot.

My very uneventful and boring update filled with nothing. :D x

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