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Author Topic: Newly diagnosed...and new here ...When to start dak/sov treatment  (Read 9825 times)

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Offline Khb5

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Newly diagnosed...and new here ...When to start dak/sov treatment
« on: September 03, 2016, 06:01:50 pm »
New here ...just got my approval from pharm ..have app.next wk to go over instructions with Dr ...one my daughters is getting married in Nov. and wondering if I should wait til after to start treatment ...so scared of side effects and can not afford not to be on top of my game for wedding and all the pre wedding stuff . If I've had it who knows how long ,would it matter to wait 2 months ? Liver is in great shape ,no symptoms..only way I knew is that I donated blood

Offline Flutterby

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Re: Newly diagnosed...and new here ...When to start dak/sov treatment
« Reply #1 on: September 03, 2016, 06:58:09 pm »
Hi Khb5,

Great news that you are going to get treatment!

I'm half way through week #9 of Daklatasvir/Solvadi, and was very scared to start - nervous about side effects just as you are. Personally, I had a sleepless night the first night which I think was related to being anxious about taking the medicine, and then some very achy joints at around week 5-6, but that is the worst I have had. (I.e. no other side effects).

Just remember that generally the side effects are said to be mild with this combination, with only 1 in 10 people reporting them; and from what I can gather, many are getting through very well, without side-effects, particularly if you start with a liver in great shape, and on the newer treatment combinations. Drink lots of water.

Nevertheless, if in doubt, or too worried about your daughter's wedding, then given you are healthy, perhaps you could talk to your doctor about waiting to start treatment until after the wedding? A couple of months is unlikely to make a difference to the progression of Hep C if you have no liver issues, but best to check with your doctor when you see him/her next week.

Best wishes, Flutterby.


 
« Last Edit: September 03, 2016, 07:04:58 pm by Flutterby »
G3,
early 80s; dx 2006
Tx started 07/07/2016
12wks - Daclatasvir/Sovaldi

Offline Khb5

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Re: Newly diagnosed...and new here ...When to start dak/sov treatment
« Reply #2 on: September 03, 2016, 07:46:46 pm »
Thank you so much ..just don't want my Dr. To think I'm not taking it seriously..I am but can not afford to have issues . So glad you've not had any real issues ..achy joints I can handle ..
You must be so pumped to almost be done and I can only hope I breeze through just as you've done .
Thanks for a quick response ..never joined a forum before ..it's a Godsend to have a place to share

Offline Flutterby

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Re: Newly diagnosed...and new here ...When to start dak/sov treatment
« Reply #3 on: September 03, 2016, 08:20:18 pm »
Yes, I was so grateful for this site and forum. Lots of information and lived experiences, as well as support along the way. At any time you feel scared or worried, or have a question, you can post, and someone is there to answer or point you in the direction of further information. People also here supporting each other along the way, which makes a big difference and is really nice! Good luck with your journey... and the wedding!
G3,
early 80s; dx 2006
Tx started 07/07/2016
12wks - Daclatasvir/Sovaldi

Offline Philadelphia

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  • It only looks like I know what I'm doing
Re: Newly diagnosed...and new here ...When to start dak/sov treatment
« Reply #4 on: September 03, 2016, 08:30:08 pm »
No one can say with any certainty how your journey on treatment will be - for that reason if your liver is genuinely good you might want to discuss delaying till after the wedding. That said, most people report a pretty easy time of it. Tough call, good luck!

This forum is very useful as there are people here at every stage of treatment and they are generally happy to help in any way they can.
CURED SVR24  Class of 2015
Wk 12 post EOT 30.11.15: ALT 14 AST 22 GGT 22 VL UND
Week 19 07.08.15: ALT 17 AST 23 GGT 25
Week 12 18.06.15: ALT 21 AST 23 GGT 28
Week 8 25.05.15: ALT 23 AST 27 GGT 30 VL UND
Week 4 20.04.14: ALT 30 AST 36 VL 40
Treatment start 23.03.15: ALT 137 AST 185 VL 342,600
Cirrhosis Child-Pugh A, Genotype 1a - Viekira Pak + riba 24 weeks
Total failure interferon/ribavirin/boceprovir Mar 2013
https://www.hepmag.com/blogger/grace-campbell

Offline Khb5

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Re: Newly diagnosed...and new here ...When to start dak/sov treatment
« Reply #5 on: September 04, 2016, 03:25:58 pm »
Thank you all so much ! I don't take  any meds at all right now so there's that ... Still adjusting to my new normal ..all of y'all so upbeat ..hope I get there sooner than later ..appreciate y'all responding ..a"lot !

Offline impossibletoregisterhere

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Re: Newly diagnosed...and new here ...When to start dak/sov treatment
« Reply #6 on: September 09, 2016, 10:41:20 pm »
Hi...

I'm happy to say that I just successfully completed treatment for Hep C. I  di 3 bottles of Harvoni, each one containing 28 days of pills. I delayed treatment for several years for 2 reasons. First, I had the luxury of that choice because altho I had a moderate to heavy viral count I had no symptoms of liver prob,ems. Second, although I was considered a good candidate for the tri-phase interferon treatment...I was scared of it. I read a lot about it ....

Anyway I don't wanrt to discourage you if that's the way you are going. I can say that the data on the Harvoni treatment shows a tremendous success ratio.

I did not experience the slightest discomfort. I had absolutely no sense that I was taking any medicine...EVER.

Three months later my viral count is zero.

Apparently, and unlike other treatments, there is no data on remission. If you remain clean for a short time (I don't have a definate figure on that) then that's it...FOREVER.

So, with the disclaimer "as far as I know", and I am not trained,,,just a patient...Harvoni is actually a real CURE, not merely a suppressant, that may require another treatment regimen down the road.

Also..there are now drugs out there that are even more advanced.Harvoni has something better then a 98% chance or working. Of course i asked what would happen if I fell into the off-odds category.I was reassured there were still avenues open.

Anyway...I just stayed 98% optimistic and I got a great payoff.

So,  it's curable...the  treatment is out there and available and the shadow that's been part of my psyche for so many years just blew away.

I know for sure you can proceed with a lot of confidence.

Kind regards,

D

Offline Khb5

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Re: Newly diagnosed...and new here ...When to start dak/sov treatment
« Reply #7 on: September 10, 2016, 06:25:41 am »
Thank you for your response . Wished I could take harvoni but I'm G3 so I not many choices with that type . Have dr. App this wk so will run it by her ...I do believe if you are an optimistic person , it helps you in a lot of ways . So glad it is behind you and that is was uneventful 

Offline impossibletoregisterhere

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Re: Newly diagnosed...and new here ...When to start dak/sov treatment
« Reply #8 on: September 14, 2016, 01:02:20 am »
hi...

Yeah.....I guess I was genotype 1. That shows my disconnect from finding out too much about it. I was told I had the most common g-type that was responsive to harvoni. Actually, since thats the case, it meant that most data was drawn from that g-type...so the good percentages as well as the bad luck cases were mainly data-assembled from my genotype.

Thats true about optimism. Funny thing is...this world doesn't exactly have me dancing for joy. I was optimistic about this specific choice that was open to me...but I suppose the way to put it is that I'm selectively optimistic.

So, whatever options are open...whatever you finally go with...absolutely feel good about it if you can...because it probably will work...and I was definately told that there are now advances even on Harvoni in the event a regimen with it dosent fully clear the virus....even the part of me that guardedly told myself the truth that there was still a possibility for the harvoni to not completely work...I just figured it was one battle i was gonna go all the way with...once I started in.

if you feel like it...post your decision......

kind regards


D

Offline Khb5

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Re: Newly diagnosed...and new here ...When to start dak/sov treatment
« Reply #9 on: September 14, 2016, 08:56:11 am »
Thanks D ...I see my Dr. Tomorrow , so will discuss with her ...I'm leaning towards waiting til after wedding ..I'm going to want to drink that night and frankly most of that wk ...with welcome party etc.. And I know I can't drink while on meds ..so waiting seems to be the right decision

Offline impossibletoregisterhere

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Re: Newly diagnosed...and new here ...When to start dak/sov treatment
« Reply #10 on: September 14, 2016, 09:16:28 pm »
yup...congrats on the wedding.....I was something more then a moderate drinker...vodka...Before I started the treatment my internist...on a normal semi annual visit...says "whatever you've been doing for the last 6 months stops now".....which was an astute summary of the increased booze...probably job stress and my normal insomnia and my friends etc...

The night before the pills arrived..they were shipped to me...I called my Dr. and asked if I could 'tie one on' and they said sure....

I took my first pill (one per day) on June 10th and it is the absolute honest to God  or whomever truth that I have not had a thimbleful of alcohol in any form since then...Something like 100 days.

IT's ok. I'll see him again on the 22nd of September and plan to ask about post treatment drinking. I imagine moderate use will be ok...but even if he said never do it again...I'd consider it a very good trade.

I never take this result for granted. Today I called his office to specificall7y thank a nurse up there who had helped...I feel a genuine gratitude for all concerned. I really don't think too much about it  during the day but when I do...it's really a weight off as you can imagine...I thought Hep C was gonna be a lifetime companion.

I'm neither married or promiscuous...but whenever I met anyone...doctors or ladies where sex might have been an issue I was very diligent about informing them about my medical status. It was really amazing how nice everybody was...I never was made to feel like a pariah...

It's very nice knowing I no longer need to warn or advise people about my condition.

I'm not one to blab at all....even my sister never knew ...That's a nice thing about internet I guess...my long windedness here probably has something to do with I'm unwinding some of the relief as I type....I need to say thanks to the world or God or someone and maybe I can say something of use to someone...like you...so Thank you for the responses.

Sitting here I feel good for you...that you are taking this in hand. It takes something to finally get on with it.

Anyhow enjoy the drink..you won't be doing it for awhile...I know I took that prohibition as seriously as a sacred vow.

It'll work out great.


Regards,

D

Offline Khb5

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Re: Newly diagnosed...and new here ...When to start dak/sov treatment
« Reply #11 on: September 15, 2016, 07:27:35 am »
Thanks for sharing your story ...I don't think it will be a problem for me once I start treatment ..dr app this morning

Offline Khb5

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Re: Newly diagnosed...and new here ...When to start dak/sov treatment
« Reply #12 on: September 17, 2016, 08:36:34 am »
Good morning all ...dr said since I got my 1st month in mail already ,that I have to start taking NOW ..something to do with them reporting blood work on a schedule for ins and delaying would not work ...it's only costing $5/month so don't wanna mess that up ..2nd day ..so far  I can't tell I'm taking anything ...how long before side effects kick in ..I'm cautiously optimistic

 


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