Author Topic: Daclatasvir and Solvadi - started 07/08/2016 (Read 23705 times)

Flutterby · « **on:** July 08, 2016, 07:52:56 am »

I thought I'd join the forum and document my journey from the start - as I found it useful`to read other journeys and I have realised not all are the same.

I'm excited and have waited a long time for this and didn't realise how the hidden disease had affected everything - hanging around in the back of my mind, worrying about a looming early death! They say I may have had this since I was a child (blood products/transfusions); didn't know until I was pregnant with first child; no symptoms or signs of disease, but have been increasingly fatigued in late 30s and into 40s. That said, I always thought fatigue could be due to too much work and parenting - but I'm hoping this will prove me wrong and once cleared some energy will return.... I'm heartened by other's stories...

Day 1 - I decided to start the meds in the evening, couldn't wait, and though I'd sleep through any side-effects or I wouldn't notice them too much. I took them at 7pm, all fine; but when I went to bed at 10pm I couldn't sleep (the irony!). 12.30am I felt quite sick, like bad indigestion. I was still awake at 4am - alert, anxious feeling, head whirring... so much for the grand plan... Finally fell asleep some time after 5am but woke up at 8am with a headache, I took paracetamol and that worked. Not sure if the insomnia was a side-effect, or anxiety due to other worries, or the fact that I had just jumped aboard this 12 week train and didn't know what was going to happen...

Day 2 - Figured it wouldn't hurt to switch to day-time rather than a repeat of last night. Had meds 10am (will move to a bit earlier tomorrow). Stayed at home, but surprisingly awake all day given I had little sleep last night. A bit irritable (but nothing more than anyone would have due to lack of sleep and fighting children). 9.45pm - I am hoping I'll sleep and have started to yawn! .... I have been consciously checking in with my body all day, and feel fine, and given lack of sleep I am quite surprised by this. But also - probably wouldn't usually be focusing on how I feel so much; if I didn't know I'd taken something, then I'd not be noticing anything much. (Not sick, no headache, no fatigue, no aches).
.... Excited!

hummingbird57 · « **Reply #1 on:** July 08, 2016, 09:54:22 am »

Hi Flutterby - I'm a newbie as well. Harvoni started on July 3rd. My history is pretty much the same as yours. The anxiety and creepiness created by having a bunch (millions) of unwelcome visitors in our bloodstream, etc. is enough to make our skin crawl and then ask "is that a side effect!?".

I'm totally inexperienced but the welcome I have received from this online community with all the seasoned members continues to help me keep my cool.

Best wishes and let's get rid of this! Stay excited!

Beth

KimInTheForest · « **Reply #2 on:** July 08, 2016, 12:54:27 pm »

Welcome Flutterby! And good luck to both you and hummingbird as you start your treatment voyages. May you each have smooth sailing!

(I had major insomnia throughout my 12 weeks of Harvoni+riba. Never knew which of the 2 drugs was responsible.)

best,
kim

Flutterby · « **Reply #3 on:** July 08, 2016, 03:50:17 pm »

Hi Hummingbird and Kim,

Thanks for the welcome, and the encouragement!

Hummingbird, looks like we are in and on our way, and I'm just a few days behind you. You are so right, finding this forum is a relief, otherwise I'd be doing this on my own and quietly freaking out... .

Kim, thanks for all your posts, and feedback re insomnia. I am glad to say that last night I slept a full seven hours. Hooray!

Into day 3, feeling chirpy (and grateful).

-------------
_{Gen 3, early 80s, dx2006}

Flutterby · « **Reply #4 on:** July 10, 2016, 04:32:38 pm »

Day #5 - all is well. Feeling good. The anxiety of the first couple of days is gone, and I am clear headed, happy, and sleeping well. No side effects to report.

KimInTheForest · « **Reply #5 on:** July 10, 2016, 04:42:07 pm »

Quote from: Flutterby on July 10, 2016, 04:32:38 pm

Day #5 - all is well. Feeling good. The anxiety of the first couple of days is gone, and I am clear headed, happy, and sleeping well. No side effects to report.

Excellent!

Philadelphia · « **Reply #6 on:** July 12, 2016, 06:02:26 am »

Welcome belatedly. I've been crazy busy during the first week of the school hols and this is my first down time for well over a week.

Lots of good knowledge here and folks are very supportive. If you've got a question, someone else may well have an answer.

Flutterby · « **Reply #7 on:** July 12, 2016, 09:00:17 am »

Thanks Philadelphia, Yes, it's a great site. So much good information, and really great community. It has eased my mind reading through the many posts. As you can probably tell I was very anxious to start... One week in I am calming.... Hope you survive the school holidays!

Philadelphia · « **Reply #8 on:** July 12, 2016, 06:12:40 pm »

I always survive the holidays - I'm a school teacher.

Flutterby · « **Reply #9 on:** July 12, 2016, 07:14:15 pm »

Haha! You deserve a medal! School holidays remind why I am so very grateful for teachers!

Flutterby · « **Reply #10 on:** July 19, 2016, 08:51:31 pm »

Day #14... Two weeks down, ten to go.... All is well, and I'm still excited, hopeful, and so glad for this site...

No significant side-effects to report, so also relieved!
(I seem however to have been on hyper-vigilant guard watching out for them, and monitoring my body - thankfully with no issues detected! -- and perhaps able now to give myself a break and just take the daily pills...)

Thank goodness also for programming a reminder into my phone, gmail, and calendar, as I relax about it, I also seem more likely to forget unless I have pop-ups telling me to take my medicine...

Hope everyone is travelling well!

KimInTheForest · « **Reply #11 on:** July 19, 2016, 08:54:02 pm »

Great that you are having no significant side effects, Flutterby! I have heard pretty much everyone on that combo say that (sovaldi/daclatasvir). You'll be done before you know it.

kim

AussieRosa · « **Reply #12 on:** July 19, 2016, 10:56:49 pm »

Hi, Flutterby. Really glad to hear you're getting through without sides. The 12 weeks will be over so fast you'll hardly know it. Wishing you all the best for the rest of your treatment and SVR.

Flutterby · « **Reply #13 on:** July 20, 2016, 05:12:23 am »

Thanks Kim and Aussie Rosa! It's so nice to have your well wishes.

hummingbird57 · « **Reply #14 on:** July 20, 2016, 07:07:23 am »

Hi Flutterby - was thinking about you since we started at the same time. Don't know about you but had a little anxiety about starting, anticipating any side effects and now having a bit because it's going so smoothly. 9/25EOT!!

Kim and Rosa - hoping you're both feeling good. I read members' posts when I was getting to know the site and the knowledge everyone has is pretty staggering without MDs.

beth

Flutterby · « **Reply #15 on:** July 20, 2016, 01:03:17 pm »

Hey Beth!

Yes, I think about you also, we are companions in this journey!

Yes, I was very anxious to start, and was a bit worried (paranoid) that I would get the worst side-effects possible. I don't know why I was so full of doom, but I was scared. My doctor had said sometimes, just extremely rarely, one can slip into a deep deep depression; others (1/10) may have headaches; others (1/10) insomnia; others stomach upsets, etch.... I thought maybe that would be me - even though he said most people on my combo don't get any side-effects and even the ones that have been reported come from studies that couldn't tell if the side-effect was actually related to the drugs or if it was just something that happened concurrently with treatment.

I am now relieved this is going OK. Still ten weeks to go - but I'm hoping if we got through the first two OK, then hopefully nothing drastic will happen now.

I have other stressors in my life that mean I am struggling, but I can't blame the medicine for them... If only I could take two pills everyday to cure a toxic work environment

My life would be sweet...

Onwards and upwards we go Beth!

Flutterby

_{We are human beings, not human doings - and yet we busy ourselves doing when we are worried/anxious/scared. This is normal, but it is good, when we are out of danger, to stop and let our self be... otherwise we never really deal with what is or has been...}

hummingbird57 · « **Reply #16 on:** July 20, 2016, 03:18:29 pm »

Flutterby -

There's something about 10 weeks and then down to 9......maybe from double digits to singles

Yep - stressors abound. Life IS sweet and we're in charge. I'll take the toxic workplace over the toxic body. Hang in there!

B-

Philadelphia · « **Reply #17 on:** July 24, 2016, 09:26:50 am »

When are you getting yr bloods done Flutterby?

Flutterby · « **Reply #18 on:** July 24, 2016, 02:03:34 pm »

End of week #4 Phili... So one more week - Aug 4.

However the test is just for liver enzymes, and full blood count. (FBE, LFT)

They won't check the viral load until week 12. (Apparently because doing the viral load test does not affect length of treatment and they don't want you to stop taking meds, thinking you are cured at week 4).

I know I have to be patient... but boy is it hard not to wish these 12 weeks away!
Soon...

Flutterby · « **Reply #19 on:** July 31, 2016, 07:20:10 am »

Almost at the four week mark...
Significant joint pain in my knees and knuckles....and pain in lower leg muscles...
Thinking these must be side effects, as I've never had this type of pain before, and I can't explain it away with anything else... I feel like I need some oil in my joints!

its time · « **Reply #20 on:** July 31, 2016, 08:44:00 am »

hi flutterby and hummingbird57
I am on Viekira pak + ribavirin but we have all started about the same...I started Saturday July 9th...
I too am very thankful for this site and for all the people here...they have been so helpful already...
don't forget to drink lots of water supposed to help with the sides.. ( I'm thinking that would go for all the treatments?? i'm sure someone will pop in and correct if not so ) and hopefully end of September will be here sooner then later.. 9/30 EOT

hummingbird57 · « **Reply #21 on:** July 31, 2016, 11:01:10 am »

Hi Its Time and Flutterby -

The 3 of us did start around the same time. I just flipped my calendar to August. Drinking water does help. Not being a huge fan, I'm eating a watermelon (really) every couple of days because I love them and lots of cantaloupe.

Sorry you're not feeling better. I'm not on Riba because of Geno - but the result will be the same and we're counting down the days. I have those same irritating sides at times as well even without Riba - my VL will not be checked until EOT as well on 9/25.

I'm impatient as well.........

- Hang in there!!!

its time · « **Reply #22 on:** July 31, 2016, 01:15:54 pm »

flutterby are u drinking enough water???

within the first week I was itchy from head to toe... then developed a rash on both thighs which with upping my water that all subsided lots on site here suggested plus I called the 1800 nurse...but since have started with heart/pulse going haywire... shortness of breath... more often then not for the both.... mentally its really becoming bothersome...
I am going back for 4 week bloodwork aug 6th.. although doc actually said about 3 weeks to go...

hummingbird57 you got me in the mood for watermelon now... love it... heading off to store in a few... and glad to hear you are doing well with treatment.. yes we have count down... :}

Flutterby · « **Reply #23 on:** July 31, 2016, 07:28:53 pm »

Hi ItsTime, Yes, all on same time-line, and it's so good to hear from you.
Trying to drink as much water as I can and yes, I think it does help - liquid gold...

Hummingbird, watermelon sounds like a great idea! Seems like walking also helps - although initially my joints and lower legs were so sore that felt a bit difficult. So strange!

Almost finished my first lot of meds - (that's 4 weeks); and onto the second in two days... Yeah!

Flutterby · « **Reply #24 on:** August 03, 2016, 08:20:36 pm »

One third of the way there. Four weeks down, eight to go!
The aches left...
Moving right along...

Philadelphia · « **Reply #25 on:** August 04, 2016, 05:36:56 am »

Every day brings you closer to a cure.

hummingbird57 · « **Reply #26 on:** August 04, 2016, 11:36:02 am »

Glad you're feeling better Flutterby!

Flutterby · « **Reply #27 on:** August 04, 2016, 05:12:18 pm »

Thanks Hummingbird, hope you are travelling well!?

hummingbird57 · « **Reply #28 on:** August 05, 2016, 07:44:50 am »

Hi - I am.

The only difference in my daily life has been the treatment. Not knowing if there would be side effects that were negative to any measurable level, I carefully planned finances to take me through the summer months. No excuse not to find some work I enjoy.

You chomping on watermelon?

Flutterby · « **Reply #29 on:** August 06, 2016, 09:44:36 am »

Ah yes, the fear of not knowing what treatment would be like... Thankfully that passes, and before you know it, you are well on your way to being cured without suffering too much after all... (well hopefully)!

The watermelon sounded fine - but unfortunately we don't have any in the shops at the moment; perhaps not in season here as we are in winter. I am however drinking as much water as I can, which I do most of the time anyway. I do love my water.

For me movement is the key also - if I sit too long, then I find I get aches in my knees and ankle joints that I never had before, even my knuckles hurt at one stage (weird) - I'm blaming the pills (and not age!

)...

hummingbird57 · « **Reply #30 on:** August 06, 2016, 10:11:00 am »

I'm in a timewarp I guess - thinking it's summer everywhere.

I experience(d) the same symptoms that come and go. Knuckles, knees, elbows. Last night went to hear a local band and wore heels and they felt good. For almost 2 years I didn't feel steady on them because of little issues and blamed it on aging. In my opinion, since I live in this body, the hepatitis had something do with it - inflammation switching areas to aggravate.

I agree with you that movement IS key. I've worked out with the same gym for 5 years and dread those first 10 minutes but then start feeling better and better as everything starts loosening up.

its time · « **Reply #31 on:** August 13, 2016, 07:00:44 am »

hi hummingbird57 and flutterby just chking in on yas... hopefully feeling ok these days...
almost at halfway mark...not that haven't been counting down already but nice to count down from the halfway mark :} hummingibird57 your already at week 6???

Trinity · « **Reply #32 on:** August 14, 2016, 09:10:43 pm »

Hi guys! I'm a newbie to this site.. I have had hep c for about 20 years.. No treatment before now ! I've just started the same combo sol/Dac for 12 weeks.. I'm geno 3... I'm a week in now and I think I'm more paranoid about side effects and long term side effects than I should be! So far no side effect noted except when I first take the meds in the am I'm quite manic for a few hours... Yesterday I first saw some red little spots appear on my stomach and chest too.. But other than that I feel good! Any one else have these red spots?? They also could be totally unrelated but I've never had it before.

Lynn K · « **Reply #33 on:** August 15, 2016, 12:40:21 am »

Hi Trinity and welcome,

I have hundreds of small red dots had them for years getting more with time. Mine are called cherry angiomas

http://www.healthline.com/health/cherry-angioma?utm_expid=.bq4wAkkBSjeddGcB8ufP1w.0&utm_referrer=https%3A%2F%2Fwww.google.com%2F

"What are cherry angiomas?

Cherry angiomas are common skin growths that can develop on most areas of your body. They are also known as senile angiomas or Campbell de Morgan spots.

They are usually found on people aged 30 and older. The broken blood vessels inside a cherry angioma give them a reddish appearance."

I have had cirrhosis for about 8.5 years so for me they could be related to my cirrhosis but they are very common so hate to say if I would have them anyway even if I never had hep c.

Two things about angiomas

They are harmless
There isn't much you can do about them

Hope that helps congrats on starting treatment

Lynn

Flutterby · « **Reply #34 on:** August 16, 2016, 05:59:46 pm »

Hi All,

Delayed response as I went away for a week with no power... no internet...

It's Time, yes, half way and counting! I still have aches in all my joints - but other than that feel like a fog has lifted. How are you?

Hummingbird, ah yes, the aches have moved to my elbows too. Bizarre. You motivated me re getting to the gym, I haven't been in such a long time - I blame work and sole parenting, but really just lost the groove. Sounds like you have the right idea!

We are all on the other side of half-way now! Hope you guys are travelling well!

Flutterby · « **Reply #35 on:** August 16, 2016, 06:03:33 pm »

Quote from: Trinity on August 14, 2016, 09:10:43 pm

Hi guys! I'm a newbie to this site.. I have had hep c for about 20 years.. No treatment before now ! I've just started the same combo sol/Dac for 12 weeks.. I'm geno 3... I'm a week in now and I think I'm more paranoid about side effects and long term side effects than I should be! So far no side effect noted except when I first take the meds in the am I'm quite manic for a few hours... Yesterday I first saw some red little spots appear on my stomach and chest too.. But other than that I feel good! Any one else have these red spots?? They also could be totally unrelated but I've never had it before.

Hey Trinity! Welcome! Yes, totally know the feeling of starting and feeling quite anxious - it's a big deal, and I was so focused on my body and scared of any side-effects. Travel well. I have read this combo is pretty good for no side effects - although I have had aching joints for a couple of weeks. I also read that can happen with the Solvadi. I'm hoping there are no long-term side effects - focus on the getting rid of the silent killer Hep C. It's a miracle to me - feeling like it will be gone, and not worrying that it is lurking in the background with nothing I could do. Post here if you feel worried - lots of support!

Flutterby · « **Reply #36 on:** August 23, 2016, 07:28:04 pm »

End of Week #7 - all good. The aches in my joints, (knees, ankles, wrists, knuckles, fingers, and elbows (!)), are gone. No other side effects to report. So in all, very minor compared to what some here have experienced. Still figure it's worth noting so that anyone reading this knows things can be pretty non-eventful... Five weeks to go!!!

Flutterby · « **Reply #37 on:** September 03, 2016, 07:02:53 pm »

Half way through week # nine..... All fine.

Philadelphia · « **Reply #38 on:** September 03, 2016, 07:09:14 pm »

Three weeks left! Hooray!

Flutterby · « **Reply #39 on:** September 03, 2016, 07:12:55 pm »

Yes, can't believe it! Funny how 12 weeks seems like such a long time at the start, and now at week 9 time seems to have gone so fast... Thanks for cheering. So close now!

jamoore55 · « **Reply #40 on:** September 05, 2016, 06:06:19 pm »

Hi everyone. This is my first post and I hope I am doing this correctly. Please let me know if I am in the wrong place! I am genotype 3b and began Daclatsvir and Solvaldi about 2.5 weeks ago. I started taking at night thinking that I would sleep through any side effects. I am sleeping okay, but i felt horrible in the mornings with stomach problems, fuzziness, headache, muscle aches, and nausea. They lasted until about 3-4 in the afternoon. I then thought I'd take the medication one hour earlier each day until i got to taking it earlier in the day to stave off the side effects while I was at work. Has anyone done this? I notice that when I'm active it looks like the side effects come on faster. Example: I took them at 3pm today and I started feeling the side effects at around 4:30pm. I always take them with food. And I drink plenty of water and get daily exercise. Any recommendations would be greatly appreciated. Thank you so much!

KimInTheForest · « **Reply #41 on:** September 05, 2016, 06:57:17 pm »

Welcome jamoore! And congrats on starting treatment.

I don't have any specific suggestions for you (since you are already taking the meds with food and staying well-hydrated). But I just wanted to say that time-shifting your dose by 1 hour a day is indeed the correct way to get yourself to a different dosing time, and others here have done likewise.

Are you treating for 12 weeks or 24?

best,
kim

Flutterby · « **Reply #42 on:** September 05, 2016, 07:37:46 pm »

Hi Jamoore,
I've been documenting my journey on taking Daclatasvir/Solvadi combo on this thread, and am sorry to hear you are suffering side-effects. I think I've been lucky, as it's been pretty smooth sailing - but little things do come and go. You show that it's not easy for everyone, and I hope things settle down for you soon! I would suggest regarding the side effects you are suffering that it is probably best to speak to your doctor if you are finding them severe or distressing. The doctor will be able to give you advice about what you can take/do to help - eg. over the counter headache tablets; or something for that upset stomach - especially if simply walking, drinking lots of water, and eating well isn't helping.
I hope you feel better soon!

jamoore55 · « **Reply #43 on:** September 05, 2016, 07:47:13 pm »

Thanks so much KimintheForest and Flutterby. I really appreciate your support and quick response

I am just sincerely grateful to have this opportunity to be cured and will gladly take the side effects! I'll check with my doc about them as well. BTW I am on the 12 week treatment.

Flutterby · « **Reply #44 on:** October 16, 2016, 06:33:12 pm »

Immediately post treatment bloods... HepC - 'Not detected'.... Woooohooooo!

andrew j · « **Reply #45 on:** October 16, 2016, 07:17:28 pm »

Fantastic news, Flutterby!

Hoping that the next 12 weeks is all good for you, and that you continue to get better!

Best wishes,
A.

jamoore55 · « **Reply #46 on:** October 16, 2016, 09:36:06 pm »

Wow - that's wonderful Flutterby! So happy to hear that. You must be on cloud 9!! All my best to you

Flutterby · « **Reply #47 on:** October 16, 2016, 10:01:43 pm »

Thanks Andrew and Jamoor! Yes, cloud 9 for sure. An amazing feeling that is also quite surreal! A bit of disbelief - can it really be gone?

and, wanting to dance around the living room at the same time! 12 weeks to confirmation... but for now, very happy!

its time · « **Reply #48 on:** October 16, 2016, 10:50:55 pm »

Flutterby

that is WONDERFUL news!!!!

very happy to hear

now the countdown for 12 weeks after treatment

that's what I'm doing myself too ... today is day 16 off meds...

1 day at a time... positive thoughts does wonders for the mind and body ...

Flutterby · « **Reply #49 on:** October 17, 2016, 11:35:27 am »

That's great to hear too It's Time! Positive thinking all the way

Luna7 · « **Reply #50 on:** October 17, 2016, 11:53:25 am »

Quote from: Flutterby on October 16, 2016, 10:01:43 pm

Thanks Andrew and Jamoor! Yes, cloud 9 for sure. An amazing feeling that is also quite surreal! A bit of disbelief - can it really be gone? and, wanting to dance around the living room at the same time! 12 weeks to confirmation... but for now, very happy!

Congrats Flutterby!
That's my combo too, and there appears to be less side-effects with Sovaldi/Dak compared to those taking Harvoni...is that what you've experienced?

Flutterby · « **Reply #51 on:** October 18, 2016, 09:16:18 pm »

Thanks Luna7!

For me personally I didn't experience many side-effects - I had achy joints for a little while and that may or may not have been associated with the meds. Other people have said they have experienced a few side-effects (see above), but yes, it appears that this combo for many is pretty smooth sailing.

I think that's the amazing thing -- treatment side-effects were sooooo bad in the past and success rates pretty low that many people (including me) just chose not to get treated - but then this horrible disease was always in the background. Others tried and suffered greatly, and some without success... Which must have been really hard!

With some of the new treatments/combos, side effects seem greatly reduced and success rates greatly increased - it's not 100% yet, but it's getting closer and certainly something to celebrate!

I hope your journey goes well!

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Author Topic: Daclatasvir and Solvadi - started 07/08/2016 (Read 23705 times)