Hep C Discussion Forum

Members Login
Username 
 
Password 
    Remember Me  
Chatbox
Please log in to join the chat!
Post Info TOPIC: Harvoni Side Effects
Tig


Admin

Status: Offline
Posts: 9284
Date:
RE: Harvoni Side Effects
Permalink  
 


Vertigo?? I just knew you were dizzy Gracie and that proves it, lol! Grab a cane if you have to and just keep fighting forward! You're getting closer and closer with each day, it won't be long. I'm so glad you have one of those doctors that gets what we're going through and is willing to help you both reach your goal and keep your sanity at the same time. It's all sounding very positive! Keep it up...smile



__________________

Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

Signature Line Set Up/Abbreviations   Payment Assistance

 



Senior Member

Status: Offline
Posts: 209
Date:
Permalink  
 

Rolling Rolling Rolling Gracie.........keep on Rolling, this is exciting week 17! Good results and you get a VL test!



__________________

65 YO F, GT 1a1b, ast 14 alt 21, fibrosis 3/4 DX 1968 non a or b, TX 12 wks Harvoni, SOT 6.1.15, 1st bld wk: detected unquantifiable EOT 8.28.15 detected unquantifiable, 3 mo.EOT mid Nov.~SVR 12: ) UNDETECTED



Guru

Status: Offline
Posts: 618
Date:
Permalink  
 

Well today I started week 17.... For real this time. Lol.

I've been experiencing some minor vertigo this past couple of weeks. Lasts a few minutes. Just feel really out of it and a bit dizzy. Could be the change in the seasons I guess, or as I prefer to see it .... a serge of warrior harvoni soldiers blasting away at viral particles they have found hiding in corners and crevices ... 

I saw my hepologist on Friday. She has agreed to give me a 4 week post VL test. She did warn me that they may reject the 12 week one as too close but I have to know at 4 weeks or I'll just be a walking ball of nerves. She also showed me my scope test. No damage which is awesome! No verices, nothing! So follow up in 3 years. And she said my Bloodwork was "pristine"! She also told me I would be her first 24 weeker to finish. I told her if that was the case, then I needed to set a good example and clear!  So now I have no choice!

Two bottles left...... Woot!



__________________
  1. Gracie

1A. Previously treated non responder Rebetron in 2000 And Incevik in 2014 with a breakthrough at week 12. Fibroscan 15.5. VL 6,000,000. Finished 24 weeks harvoni on Dec. 19, 2015. SVR. Latest Fibroscan 8.8.



Senior Member

Status: Offline
Posts: 209
Date:
Permalink  
 

Gracie, when you are done with tx, the cravings really do let way up.  I have dropped about 8 of the almost 15 lbs I put on. Also, other than the hip am sleeping deeper now. The fog is still there, but is lifting alittle.  My skin is just now getting back to normal and actually better than it  was. The sugar craving was quite strange. You have a lot to look forward to after your tx.      Marsha



__________________

65 YO F, GT 1a1b, ast 14 alt 21, fibrosis 3/4 DX 1968 non a or b, TX 12 wks Harvoni, SOT 6.1.15, 1st bld wk: detected unquantifiable EOT 8.28.15 detected unquantifiable, 3 mo.EOT mid Nov.~SVR 12: ) UNDETECTED



Member

Status: Offline
Posts: 34
Date:
Permalink  
 

Cycles of sx's... do I ever understand that.  Brain fog has been with me for ages because of another condition though, so I don't notice it as much.  Wish I could get the sleep you guys are.  Staying in bed for 5 or 6 hours is a job for me some nights with tossing and turning behind various pains.  The biggest thing I've discovered is that just about the time I get a break from hand/wrist/body  pain, I get real energetic and see a lot of work that needs to be done in and out of the house. 

 

I'm having to apply a portion brain fade to those jobs I see for awhile.  Doing them keeps me in the cycle of pain that I've been complaining so much about.  The grass will be there to cut in the spring, and there are loads of people who'd like to be paid to do the other jobs that are popping out of the woodwork in front of me.  I should probably just be grateful for the fact that I've got enough energy now to WANT to do these things. 

 

And the cravings.  Why can't we get cravings for broccoli or brown rice?



__________________

Age 64 Geno 1a  Diagnosed 11/14/14 with 6.3 mill VL after 40ish years of infection.  Harvoni tx started 8/15.  SVR12 Feb 4, 2016  Last appt with specialist was told to have my gp order metabolic testing once or twice a year because his services weren't needed any longer.  Still happy dancing.



Guru

Status: Offline
Posts: 500
Date:
Permalink  
 

@Gracie

Well the brain fog can't be all that bad you haven't had to go back and edit your posts.

Some of my old posts I had to go back and edit them 2-3 times, sure sign of brain fog....wait I still have to edits some posts oh well biggrin

Best wishes for you.



__________________

Geno 1a null responder 2004 inter/riba   finished incivek,peg/riba 48 weeks May 17th 2014. undetect weeks 4-12-32.  EOT+7 undetect. EOT+24 SVR!!!!! EOT+!YEAR SVR!!!!



Guru

Status: Offline
Posts: 618
Date:
Permalink  
 

Case in point... I am actually starting week 16... Lol. No wonder that bottle went fast, I'm not done it yet! Groan..,, 



__________________
  1. Gracie

1A. Previously treated non responder Rebetron in 2000 And Incevik in 2014 with a breakthrough at week 12. Fibroscan 15.5. VL 6,000,000. Finished 24 weeks harvoni on Dec. 19, 2015. SVR. Latest Fibroscan 8.8.



Moderator

Status: Offline
Posts: 1559
Date:
Permalink  
 

Way to go Gracie. Knowing what Sx's to expect and knowing that you can live with them makes treatment much easier to do. I'm right with you on sorting through post-it notes. I'm right with you on sorting through post-it notes. I'm right wit...................biggrin



__________________

60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

Mike

How To Create Your Signature / Forum Abbreviation Definitions

Support This Forum

Ro


Senior Member

Status: Offline
Posts: 274
Date:
Permalink  
 

Gracie, it only gets better, and  you are so entitled to the cravings and the sleep.  

I have been sleeping 6 or so hours straight through and feel so much better.  As for the fog ,  umm what was I saying?  LOL  just got to laugh it off and write lots of notes;)

Enjoy everyday!

Sending you lots of good wishes.

Ro



__________________


Guru

Status: Offline
Posts: 618
Date:
Permalink  
 

Well today I start week 17. This past bottle went rather quickly.

I have adjusted to the sides now. I know they cycle and what happens. Headache lasts for about two days and water helps, achy feet and hands are constant but about once every couple of weeks flare up and get quite painful but it goes away, and some days I'm just tired (like today), so try and take it easy on those days. The brain fog - I've learned to laugh at myself and to leave myself lots and lots of post it notes. If somebody gives me there phone number, I need to write it down right then or it's gone in a couple of minutes. And I spend a lot of time looking through post it notes looking for a specific post it note... Lol. 

So, the battle continues. And the sugar cravings continue. 

The best thing is the sleeping! Being a women "just over" fifty, these full nights of restful sleeping are amazing!  That's one side I really hope stays!



__________________
  1. Gracie

1A. Previously treated non responder Rebetron in 2000 And Incevik in 2014 with a breakthrough at week 12. Fibroscan 15.5. VL 6,000,000. Finished 24 weeks harvoni on Dec. 19, 2015. SVR. Latest Fibroscan 8.8.

Tig


Admin

Status: Offline
Posts: 9284
Date:
Permalink  
 

When I suffered so badly with Gout, they prescribed a daily medication called Allopurinol. It was a magic bullet! Reduces uric acid quickly, at least it did for me and made life far better. A routine blood test can determine your uric acid level easily.

http://www.drugs.com/allopurinol.html

 

The only way to properly enjoy those cookies is to wash them down with a nice pumpkin spice latte! Of course this won't do your waist line any favors...

hmm



__________________

Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

Signature Line Set Up/Abbreviations   Payment Assistance

 

Ro


Senior Member

Status: Offline
Posts: 274
Date:
Permalink  
 

So Gracie, we can sit back and just enjoy a pumpkin latte with some apple pie and welcome fall 

Nice to have the company smile

Ro



-- Edited by Ro on Thursday 8th of October 2015 12:02:44 AM

__________________


Guru

Status: Offline
Posts: 618
Date:
Permalink  
 

Right there with you Ro... This is 100 times better then my go with incevik! Night and day!



__________________
  1. Gracie

1A. Previously treated non responder Rebetron in 2000 And Incevik in 2014 with a breakthrough at week 12. Fibroscan 15.5. VL 6,000,000. Finished 24 weeks harvoni on Dec. 19, 2015. SVR. Latest Fibroscan 8.8.

Ro


Senior Member

Status: Offline
Posts: 274
Date:
Permalink  
 

Gracie,

I fought that for the 24 weeks and am suffering the consequences trying to shed the unwanted pound results...

ALthough compared to my other treatments where I drastically lost weight, had no appetite AND was not successful, I will take the pounds any day for SVR :)

Ro



__________________


Guru

Status: Offline
Posts: 618
Date:
Permalink  
 

OMG a commercial just came on for Pillsbury Pumpkin Spice cookies.... Yikes!



__________________
  1. Gracie

1A. Previously treated non responder Rebetron in 2000 And Incevik in 2014 with a breakthrough at week 12. Fibroscan 15.5. VL 6,000,000. Finished 24 weeks harvoni on Dec. 19, 2015. SVR. Latest Fibroscan 8.8.



Guru

Status: Offline
Posts: 618
Date:
Permalink  
 

If it is Uric Acid, is there anything that can be done about it? Just curious. I'm managing ok. Exercise is helping quite a bit. 

Also, what is causing this sweet tooth attack! I had to drive to Wendy's today to get a frosty! The urge just wouldn't leave! And with thanksgiving coming up with pumpkin and apple pies, then Halloween with those yummy little chocolate bars everywhere.. I'm a goner!

Still haven't heard about my first VL test which was done almost 4 weeks ago. Not that it really matters but an und would perk me up for sure. Think I'll call tomorrow.

Welcome Suzanne!



__________________
  1. Gracie

1A. Previously treated non responder Rebetron in 2000 And Incevik in 2014 with a breakthrough at week 12. Fibroscan 15.5. VL 6,000,000. Finished 24 weeks harvoni on Dec. 19, 2015. SVR. Latest Fibroscan 8.8.

Tig


Admin

Status: Offline
Posts: 9284
Date:
Permalink  
 

Hi Suzanne,

Welcome to the forum and thank you for the tip. We've got a lot of folks complaining about the joint issues. It's certainly a good idea to check the uric acid levels anytime the joints start flaring up. I suffered with gout for years but since SVR and my diet changes, it has disappeared. Still some joint issues, but that's more age related I'm sure. 

I invite you to introduce yourself on our New Members thread, it's the top thread on our homepage index. Let us know a bit about yourself and where you stand in the treatment phase. We've got a good bunch here and we enjoy meeting new friends.

smile

Ro,

Hardly seems like it should already be 24 weeks! I know you're excited to have that piece of paper in your hand. I expect only good news, but am still anxious for you to get it! I'm glad that your recovery process continues to treat you right. It's nice to hear all the good news. It's a long process for some, but it's always nice to hear such positive reports! Keep us informed!!

biggrin



__________________

Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

Signature Line Set Up/Abbreviations   Payment Assistance

 

Ro


Senior Member

Status: Offline
Posts: 274
Date:
Permalink  
 

I do have to say that  while on Harvoni I experienced a pseudo gout flare up which left me incapictated for weeks plus other joint pains and issues......BUT with that said, I am 24 weeks EOT awaiting my lab results and realizing, I have not been bothered by my carpal tunnel (both hands) in months, my joints are moving easier, no back aches and stiffness in the morning , no real pain anywhere to speak of, energetic, sleeping 7-8 hours a night....AND enjoying EVERY day!

The only lingering problem (besides the weight gain which has been next to impossible to losehmm)  is my PT levels and some bleeding issues, but NOTHING I cannot live comfortably with at this point.

Sending all good wishes to everyone as they travel this crazy ride and praying for successful SVR for all

Ro



__________________


Newbie

Status: Offline
Posts: 1
Date:
Permalink  
 

For those of you experiencing aches and pains in your joints, especially in your feet, I recommend getting your uric acid levels checked. Harvoni and Savoldi (main compound being sofosbuvir in both) can raise uric acid levels causing cholesterol and gout.

__________________


Guru

Status: Offline
Posts: 5629
Date:
Permalink  
 

Well done, Gracie, you can do this!  Exercise, fresh air, doing things you enjoy and generally treating yourself kindly are all good ways to help keep a positive outlook when the going gets tough.

You`re well on course and past the halfway mark now,  hang on in there!  smile



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 



Guru

Status: Offline
Posts: 618
Date:
Permalink  
 

I'm not sure if I have arthritis, or if it's just hep c treatment aches. I've had sore hands for a couple of years now, but it's not constant. The feet thing is new. Mostly when I get up in the morning or after I've been sitting a long time, I have to hobble around for awhile but they come around. 

I have started exercising again and this morning finished week 13. This definitely helps with the pain and aches.

Off to eat my wheaties and then to the gym! Make today a great day guys! 



__________________
  1. Gracie

1A. Previously treated non responder Rebetron in 2000 And Incevik in 2014 with a breakthrough at week 12. Fibroscan 15.5. VL 6,000,000. Finished 24 weeks harvoni on Dec. 19, 2015. SVR. Latest Fibroscan 8.8.



Member

Status: Offline
Posts: 34
Date:
Permalink  
 

Gracie wrote:

Well I think I am hitting a wall!  Not sick feeling, just "had enough of this" feeling. This past month has been soooooo long. And I'm not even half way through yet. This is week 12. I know I'll trudge through, but am really finding this hard on my emotions lately. I just feel sad, and start thinking it's not going to work for me. I've been more tired, not wanting to get out of bed or do anything but sit around and watch tv. I woke up this morning with both hands and feet aching. I haven't exercised for the past week, so maybe I just need to get back on track with that to help with the aches. 

Just feeling BLAH!!!! Somebody tell me something good!


 

Hang in there Gracie.  I'm envying you a little right now because I'm on a 12 week tx and am just finishing week 7.  The wall has been strong in me for the last few days, maybe the last week or more, who's to say?  I hate to worry and for me the best worry medicine there is, is activity, so when I started getting off into the what if's early in the week I got up off my butt and started working in my back yard. 

Trimming lilacs, cleaning flower beds, mowing and discarding some things that have needed to go for a long time.  In short, over doing it for a few days.  The last couple days have been tough because of it.  My arthritis has been more bothersome than usual since I began treatment, but the last 2 days it's been over the top.  Narcotics don't take away the pain (they just make it matter to me less) and I avoid them because of my cirrhosis anyway.  I'm able to sleep for an hour or an hour and a half before I'm up walking off the pain again, and it takes a couple hours to get past the pain so I'm able to climb back into bed. 

I'll make it through the next 4 weeks if it kills me, I hope you make it through to the end of your tx too.

Maybe if I just held an Oxy in my hand for a bit it'd deliver enough of a placebo effect to get me back in bed til morning?

 



__________________

Age 64 Geno 1a  Diagnosed 11/14/14 with 6.3 mill VL after 40ish years of infection.  Harvoni tx started 8/15.  SVR12 Feb 4, 2016  Last appt with specialist was told to have my gp order metabolic testing once or twice a year because his services weren't needed any longer.  Still happy dancing.



Guru

Status: Offline
Posts: 796
Date:
Permalink  
 

Hi Gracie, 

Congrats on the halfway mark you'll get there soon enough, and just in time for Christmas.  What a great present.  With every passing day, your odds of SVR increase.  The 24 weeks tx almost assures you making it.  Keepa go, your turn is coming.  I think we all had concerns whether we'd make it.  You're doing great :)



__________________

1b  Int/Riba relapse @ 48 weeks.  Stop tx Peg Int/Riba 12 weeks ill. Relapse S/O 6/23/14 :(   Started Harvoni 11/12/14  EOT 4/28/15.  EOT+4 UND :)  SVR! 8/4/15  :)     Thankful for every morning.



Senior Member

Status: Offline
Posts: 199
Date:
Permalink  
 

Gracie,

Sounds like you're back on track, and I'm so glad you're feeling better.  Just do whatever you have to and plow your way through to the end.  You can do this, girl!

Penny



__________________

65;  Dx 1997 1a; VL 1.1m; TX naïve; SOT 7/20/15; 12 wks viek/riba 1200mg

09/14/15 draw: Undetected 8 wks into tx

10/12/15 draw: Undetected at EOT

01/05/16 draw: Undetected at E0T+12



Guru

Status: Offline
Posts: 618
Date:
Permalink  
 

Thanks guys, I'm really very hopeful it will work for me. If I stopped today, my odds are better than they have ever been. Don't worry though, wild horses couldn't make me stop (Stone's reference...lol).

There are most definitely side effects. It's not as "in your face" as the int/RIBA, but very real. I'm tired, sluggish, intermittent pains in hands and feet, hungry, and just an overall blah feeling. The fear of failure is more pronounced too. I'm been compliant, once I took my pill an hour and a half late, but for the most part, it's between 6.45 and 7.10 every morning. I want to get to the end, but I'm scared to get to the end. Weird feeling for sure. The 12 weeks post are gonna drive me crazy and I dont

I'm glad to have my peeps who have gone through this before me. Don't really have anybody to talk to about it who understands. I'm very grateful of you all!

xo



__________________
  1. Gracie

1A. Previously treated non responder Rebetron in 2000 And Incevik in 2014 with a breakthrough at week 12. Fibroscan 15.5. VL 6,000,000. Finished 24 weeks harvoni on Dec. 19, 2015. SVR. Latest Fibroscan 8.8.



Guru

Status: Offline
Posts: 1782
Date:
Permalink  
 

Hey Gracie congrats on your half way mark

I know how you feel about doubting issue, but really the odds are greatly on your side if compliance is near perfect. 24 weeks is a heavy dose, so the recovery after treatment can be more troublesome for some (me included) that during especially the stress and worry element. I had thought that within two weeks I would feel really good, WRONG! Between the stress from fear of failure and the physical signs of being tired and odd abdominal pains I was conviced that I had relapsed.

The reason I bring this up is some of us cirrhotics have been having a slower recovery from the 24 week protocol. Your body after EOT needs to recovery and extra physical & mental stress should be avoided. Take it the  "slow but sure" approach. Again being on 24 weeks of this powerful drug has been more profound that a lot us us thought it would be. The odd thing is during the most of treatment it seems ok or very little side effects but afterward we expect little or none and and its takes 4-12 more weeks to get feeling like "hey I feel better with more energy" just my thoughts maybe you will be different.   

I read the Keith Richards (Life) book and it is incredible that he is still alive. 

matt



-- Edited by Matt Chris on Tuesday 29th of September 2015 10:59:11 PM



-- Edited by Matt Chris on Wednesday 30th of September 2015 12:14:34 AM

__________________

"And in the end, the love you take is equal to the love you make"

61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 



Moderator

Status: Offline
Posts: 1559
Date:
Permalink  
 

Yes Gracie I know that "what if it doesn't work?" feeling but the better I treat my body and stay compliant with my medicine schedule, the less I worry about it. A trip to see "Under the Influence" would probably do me some good too. I'll check into that. Even though my treatment won't be finished until January, I'll be getting a new socket for my prosthetic leg tomorrow so I plan to increase my exercise program too. Exercise in moderation is good while on treatment and I really need to do something about these 'love handles'.lol biggrin

You reminded me that I have a 'real' fireplace in my new apartment and with cold weather coming I have a favor I need to collect on from an old logging friend in the form of firewood.

Hang in there girl. You're on the downhill side now so enjoy coasting into SVR territory this time. Enjoy your "great day"! smile

PS: Hydrate, hydrate, hydrate.



__________________

60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

Mike

How To Create Your Signature / Forum Abbreviation Definitions

Support This Forum

Tig


Admin

Status: Offline
Posts: 9284
Date:
Permalink  
 

Hi Gracie,

Congratulations for going over the hump! I know that has to make you happy. The time sometimes seems to just crawl, but setting milestones is one way to celebrate your progress and this is a big one! 

Don't be too hard on yourself either. You're aware that your appetite is robust, big deal! Be thankful that you're able to eat without lots of nausea, hopefully. This is likely treatment related and will correct itself when you're done. You have recognized the issue and have set up an exercise regimen that will address the fitness and the diet. Once you get started you'll begin to feel better about everything, just wait and see! I need to follow your lead and start getting into better shape too. It's good for body and soul...

The film festival and cool nights with falls colors and fires sounds wonderful. It's still in the 90's down here. I could use some of that Fall weather! I just donated all of my years old winter clothing to charity. I don't think snow and cold is ever going to be something I have to consider down here, lol!

Have a great day shopping smile

 



Attachments
__________________

Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

Signature Line Set Up/Abbreviations   Payment Assistance

 



Guru

Status: Offline
Posts: 618
Date:
Permalink  
 

Well I Have started week 13 and passed the hump. Feeling a bit better but can't shake the "what if it doesn't work?" Feeling. Those of you who have failed more than once know what I mean. I'm also a stress eater, so have been eating terribly, thinking that all these "treats" will make me feel better.

I went on a quick trip to Toronto to the TIFF (Toronto International Film Festival), and caught the premier of Keith Richards new film "Under The Influence". Man, if he can survive everything he's been through, what's a little course of harvoni? Lol. was a good distraction and the weather was beautiful.

So tonight I am going back to the gym and plan on signing up for a running Clinic. We run 5k on January 1, a race called "The Resolution Run". Since my treatment is finished December 19, it will be a good way to end my treatment and welcome in my new dragon free world! At least that's what I am hoping for! 

Hope everybody is having a great week! Grocery shopping today for healthy foods to get back on the healthy living train! The leaves are turning colour and fall is my most favourite time of year when I get my warm sweaters out and have fires at night!  

I'm going to make this a great day!



__________________
  1. Gracie

1A. Previously treated non responder Rebetron in 2000 And Incevik in 2014 with a breakthrough at week 12. Fibroscan 15.5. VL 6,000,000. Finished 24 weeks harvoni on Dec. 19, 2015. SVR. Latest Fibroscan 8.8.



Senior Member

Status: Offline
Posts: 157
Date:
Permalink  
 

Gracie wrote:

Well I think I am hitting a wall!  Not sick feeling, just "had enough of this" feeling. This past month has been soooooo long. And I'm not even half way through yet. This is week 12. I know I'll trudge through, but am really finding this hard on my emotions lately. I just feel sad, and start thinking it's not going to work for me. I've been more tired, not wanting to get out of bed or do anything but sit around and watch tv. I woke up this morning with both hands and feet aching. I haven't exercised for the past week, so maybe I just need to get back on track with that to help with the aches. 

Just feeling BLAH!!!! Somebody tell me something good!


 If you read my earlier post you will see by week 9 I was also having really bad fatigue and by week 12 I was wondering how i would get through it. Then I decided to up my water intake (although I had always drank 2 litres a day even before tx) by a couple of lires as a detox therapy. I thought...well i have nothing to lose by trying and sure enough after a couple of days I went back to feeling good as I did at the early part if tx. No fatigue or naps and I work out regularly again. Try an extra couple of litres to flush the toxins of the harvoni out of your system...just make sure you have enough electrolytes in your diet. I start my day with a litre 1st thing when I wake up.  It's been a month now that all is good again. I will start week 20 of 24 Thursday...almost there.



__________________

64 year old EOT 10-28-15,SVR24 April 21 2016  ALT-12/AST-23 June '19 - fibroscan 6.9 F-0 July '19



Guru

Status: Offline
Posts: 5629
Date:
Permalink  
 

Hi Gracie, you had some great advice here, and I`m so glad you`re feeling better now than you did earlier!

I came across this fact sheet recently which gives some good tips and strategies on maintaining a positive attitude while on treatment, you might find it helpful...

http://hcvadvocate.org/hepatitis/factsheets_pdf/SEM_Positive_attitude.pdf

Good luck with your vl results, I expect you`ll feel a lot more relaxed and motivated after that, and we`re all here cheering you on!!   smile

 



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 



Guru

Status: Offline
Posts: 618
Date:
Permalink  
 

Thanks guys,

An indication of how I'm feeling - when I opened this and read your comments, I started crying. Don't worry, I'm not deliriously depressed, I'm just really relieved to have you guys to talk to as you get it. It's quite a journey we are on and having those who have gone or are going through it is really a huge huge huge help.

I did get out for a walk, and the hands and feet feel better. I also went in to work and organized my office. That always makes me feel better, and worked a bit today. Just feeling productive I guess is why that helps.

I think once I'm past this week and on bottle number four, it will help. Just knowing I'm on the other side and on the way down! I also get my first VL results this week. Maybe that's why I'm so anxious. 

Very grateful for you odd bunch of fellow warriors! You are amazing and I appreciate every one of you!  :)



__________________
  1. Gracie

1A. Previously treated non responder Rebetron in 2000 And Incevik in 2014 with a breakthrough at week 12. Fibroscan 15.5. VL 6,000,000. Finished 24 weeks harvoni on Dec. 19, 2015. SVR. Latest Fibroscan 8.8.



Senior Member

Status: Offline
Posts: 209
Date:
Permalink  
 

Hi Gracie, I remember where that point and time was for me.  I had been working out 3 days a week with a trainer.  I did listen to my body and have not been back since. Not that I won't go back.  I had never been one to read during the day or sit for long at the computer.  I turned it into a different place for me and took it real easy, course I am in a position, thankfully that I can do that right now.  I started ready more and looking up stuff on the comp. that I was interested in or wanted to know more about. Also got a used Rosetta stone for cheap, but it was a language I had wanted to know. Now am 1 mo. post tx today and am still having trouble with my L hip. I figure I need time to heal from the strong tx.  I just takes some of us longer time than others. found I don't mind taking it easier if I believe it will help in the long run. WE are getting better.



__________________

65 YO F, GT 1a1b, ast 14 alt 21, fibrosis 3/4 DX 1968 non a or b, TX 12 wks Harvoni, SOT 6.1.15, 1st bld wk: detected unquantifiable EOT 8.28.15 detected unquantifiable, 3 mo.EOT mid Nov.~SVR 12: ) UNDETECTED



Moderator

Status: Offline
Posts: 1559
Date:
Permalink  
 

 Hi Gracie.

Yes, getting back on track with your exercise will help a lot. I have found that the walls close in on my mind when I spend too much time in front of the TV and it leads me to depression and focusing on the negative. Give yourself room to breath. Get out and do at least one activity daily. Counting days while on treatment made mine seem longer last year. This time I haven't even added up the days to see what date I'll be finished. I think I'm on my 3rd bottle of Harvoni but I'm not sure because I haven't been counting. I just make sure I call to be sure that the pharmacy is sending another bottle when the one I'm on gets low. I guess I'll know I'm almost through with treatment when they tell me that they can't send me any more. biggrin

I feel tired all the time but I don't let that keep me from walking around the block at least once daily. I'm lucky to have an AA meeting club house 1 block from my house with meetings 2 times a day. I moved to this location mainly for that reason, to get me out of the house and take some of my focus off of treatment. My main priority in life right now is to take my Harvoni on time, stay hydrated and don't dwell on how far into / how long I have left on treatment. Do something daily. The total days will accumulate just fine without you keeping a count on them. Hang in there, your doing fine and the medicine is doing what is suppose to be doing. Breath, breath, breath. Don't think, don't think, don't think. Do,do,do. smile



__________________

60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

Mike

How To Create Your Signature / Forum Abbreviation Definitions

Support This Forum



Guru

Status: Offline
Posts: 500
Date:
Permalink  
 

Hi Gracie

Push your self to go out and get some exercise. To much sitting around=to much time to let your mind wander and we all know what you start thinking when that happens on TX. Go and do something fun. By doing that you will be punching that hepc virus right in the nose.

Half way there. :)



__________________

Geno 1a null responder 2004 inter/riba   finished incivek,peg/riba 48 weeks May 17th 2014. undetect weeks 4-12-32.  EOT+7 undetect. EOT+24 SVR!!!!! EOT+!YEAR SVR!!!!

Tig


Admin

Status: Offline
Posts: 9284
Date:
Permalink  
 

Good Morning Gracie!  

So you want to hear something good? Ole Miss beat Alabama (college football) last night in a hair puller! That's better than good, unless of course you were rooting for Alabama!! It's an American thing I know, but right now it's my most recent good memory, lol!

Seriously though, it does indeed sound like you've hit a bit of a wall and we can all relate to that feeling. You've reached the half way mark, let's call it the "Hump", yeah! Another excellent thing to be happy about. You've made it this far and have handled it very well in my opinion. Sounds like you're feeling the noted aches and pains so many others have struggled with and I know there will be many come along with tips to relieve some of your discomfort. 

I think once you can get things moving and grooving today, a good walk outside to clear the mental cobwebs would be helpful in getting your mind off of some things. A nice hot foot soak with some essential oils that fill the room with an invigorating or relaxing (you pick) aroma might help turn your mood to brighter days ahead. The hot soak will do wonders for the crampy feet! Then there's the old standby, ibuprofen! I wish I could do more... 

I know you'll do well Gracie. You're one of our rocks here and I want you to look yourself in the mirror and give yourself one of those positive messages. You know inside that you're going to make it to SVR and this is one of those turns in the track that has resulted in the train rocking a bit more. But look at it this way, your train just reached the summit and is now on its way down to the final station!!! Can I get a WOOT over that one? You bet!!!!

 



Attachments
__________________

Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

Signature Line Set Up/Abbreviations   Payment Assistance

 



Guru

Status: Offline
Posts: 618
Date:
Permalink  
 

Well I think I am hitting a wall!  Not sick feeling, just "had enough of this" feeling. This past month has been soooooo long. And I'm not even half way through yet. This is week 12. I know I'll trudge through, but am really finding this hard on my emotions lately. I just feel sad, and start thinking it's not going to work for me. I've been more tired, not wanting to get out of bed or do anything but sit around and watch tv. I woke up this morning with both hands and feet aching. I haven't exercised for the past week, so maybe I just need to get back on track with that to help with the aches. 

Just feeling BLAH!!!! Somebody tell me something good!



__________________
  1. Gracie

1A. Previously treated non responder Rebetron in 2000 And Incevik in 2014 with a breakthrough at week 12. Fibroscan 15.5. VL 6,000,000. Finished 24 weeks harvoni on Dec. 19, 2015. SVR. Latest Fibroscan 8.8.



Guru

Status: Offline
Posts: 618
Date:
Permalink  
 

Well I am just finishing up week 7 and got to say it's been pretty darn good.

Yes, I do get the harvoni headaches, but they aren't throbbing or intolerable. And they aren't daily so I just say in my head "this too shall pass". And occasional bouts of nausea, but not enough to make me stay home from work or carry on my regular activities. I'm hoping it stays this way.

Still craving sweets! And annoyingly my hot flashes are back which I thought were long gone.

Still remaining very hopeful that this is the one and that my third time will be a charm! 

I am, for the most part, travelling quite comfortably on this train. Hitting a few bumps, but that's to be expected!



__________________
  1. Gracie

1A. Previously treated non responder Rebetron in 2000 And Incevik in 2014 with a breakthrough at week 12. Fibroscan 15.5. VL 6,000,000. Finished 24 weeks harvoni on Dec. 19, 2015. SVR. Latest Fibroscan 8.8.



Senior Member

Status: Offline
Posts: 209
Date:
Permalink  
 

Your funny Gracie, love reading your posts.  In the center of the night which is just part of my day anymore, I try to be quiet and pilfer a small cookie to have with a glass of milk. Can't tell if its the soothing effect of comfort food, or the milk that has the ability to assist in sleep. Sure is good though. This is the first extended stretch of insomnia that I have had. On and off have had swelling of ankles and legs, and continually have after my pill an in general bloat.  Someone on a thread said that the liver has to do with anger.  This is very interesting, as I don't want to kill something everyday, like I wouldn't and don't, but there is an edginess that is gone.  I am actually calm and happy, even if I can hardly walk at night. Hips hurt by evening more than normal. But somehow it doesn't bother me, just hope when I go off of tx in 12 days it will go away. I want to return to better health also, and have been a willing and grateful participant. Just not to feel that always underlining anger is a HUGE BLESSING this dragon scrapper. Was going to say "nice to see everyone", but nice to hear everyone with my tinnisse whatever as well since tx, not all the time, comes and goes. Bills, hang in there guy, you're special.



__________________

65 YO F, GT 1a1b, ast 14 alt 21, fibrosis 3/4 DX 1968 non a or b, TX 12 wks Harvoni, SOT 6.1.15, 1st bld wk: detected unquantifiable EOT 8.28.15 detected unquantifiable, 3 mo.EOT mid Nov.~SVR 12: ) UNDETECTED



Guru

Status: Offline
Posts: 618
Date:
Permalink  
 

image.jpg

 

Help!!! I just found a box of these in my cupboard!!! Nooooooooo



-- Edited by Gracie on Tuesday 11th of August 2015 01:22:47 AM



-- Edited by Gracie on Tuesday 11th of August 2015 01:23:21 AM

Attachments
__________________
  1. Gracie

1A. Previously treated non responder Rebetron in 2000 And Incevik in 2014 with a breakthrough at week 12. Fibroscan 15.5. VL 6,000,000. Finished 24 weeks harvoni on Dec. 19, 2015. SVR. Latest Fibroscan 8.8.



Veteran Member

Status: Offline
Posts: 76
Date:
Permalink  
 

Hello all~!

I am down to 9 days left of an 8 wk tx and I am still rolling right along.

I have had my ankles swell a couple of times but not really badly.

Gracie, I found that funny that you are craving sweets! I used to eat sweets alot and yes, felt like crap afterward but it seems like my craving has gone away pretty much.

I have been feeling a bit tired lately however that is because of all the work I have been doing at my house. Several years of neglect have added up to a real mess and I loaded and hauled 5 trailers full of palm fronds, debris and junk this past Friday and Saturday and it got to 110 here. I was really feeling it afterwards from the exertion (and the fact that I am 54 and out of shape!) however Sunday I was up and cleaning house inside. Not sure if this crazy energy is a side fx or not because it is not only physical but mental too.

I have been sleeping so hard that I wake up with my arms numb (I curl my arms up to my chin) and I have had a few weird dreams but none of them scary or bad - just odd because I haven't dreamt or remembered dreams in years.

I don't know if this energy levels are going to last or not after tx so I have been pushing myself to get as much done as possible. I sure hope they do....

And last but not least, I will hopefully get my results on my 4 wk tx labs tomorrow.... thank you all for listening!



-- Edited by Redbird29 on Monday 10th of August 2015 11:30:09 PM

__________________

GT 1A Tx Naive Harvoni 8 WK

SOT 6/25/15 VL 468,000 AST 44 ALT 56 

EOT 8/25/15 VL - UND AST 21 ALT 30

ONE YEAR POST TX - UND AST 20 ALT 22

KPB


Member

Status: Offline
Posts: 40
Date:
Permalink  
 

Gracie,  I also was feeling my worst in the mornings.  So I set a bottle of water on my night stand and every time I woke up during the night, I took a sip. This seemed to easy my morning pains. 



__________________

SOT 06-01-2015,  VL - 1088513 , LOG - 6.04, Genotype - 1A , Fibrosis -  F3 , 59 yr. old male ,

VL - < 15 ,  LOG - < 1.18, @ 3 week blood test 

EOT 07-27-2015,  VL -   UND  ,   @ 9 week blood test  , 

NEXT BLOOD TEST - 08-01-2016



Guru

Status: Offline
Posts: 618
Date:
Permalink  
 

I am starting week 6 today. Still getting achy hands and ankles. Not unbearable by any means but sure hope it's not permanent. Still managing to exercise 3 times a week and I do believe this helps. My biggest downfall is my newly acquired addiction to sweets. I just can't  get enough of them, and after eating an entire large banana split last night I felt like crap and couldn't sleep. I really have to work on my will power.

I am tired, mostly in the mornings when it's time to get up, I don't want to. Bit queasy in the mornings sometimes, more like an unsettled stomach. Still way way better than my anemic days of RIBA / int / incevik.

I've had tinnitus and I also have floaters when I see which is a symptom of having the hep c.



__________________
  1. Gracie

1A. Previously treated non responder Rebetron in 2000 And Incevik in 2014 with a breakthrough at week 12. Fibroscan 15.5. VL 6,000,000. Finished 24 weeks harvoni on Dec. 19, 2015. SVR. Latest Fibroscan 8.8.

Tig


Admin

Status: Offline
Posts: 9284
Date:
Permalink  
 

Hi Mike,

I have heard people mention this issue on Harvoni too, but not widespread. There isn't any mention of it as a known side effect. I suffered with it on the Victrelis triple and have continue to have severe trouble with it two years later. 



__________________

Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

Signature Line Set Up/Abbreviations   Payment Assistance

 

KPB


Member

Status: Offline
Posts: 40
Date:
Permalink  
 

 "Tinnitus", (I learned a new word) now this is why this web sight is helpful,  I have been experiencing tinnitus for years, and have always assumed it was from the sounds of working in the shipyards.  After reading your words.....I am learning this too can be treatable.

good job people

http://www.webmd.com/a-to-z-guides/understanding-tinnitus-basics#1 



__________________

SOT 06-01-2015,  VL - 1088513 , LOG - 6.04, Genotype - 1A , Fibrosis -  F3 , 59 yr. old male ,

VL - < 15 ,  LOG - < 1.18, @ 3 week blood test 

EOT 07-27-2015,  VL -   UND  ,   @ 9 week blood test  , 

NEXT BLOOD TEST - 08-01-2016



Member

Status: Offline
Posts: 32
Date:
Permalink  
 

Just took my third dose of Harvoni. I'm experiencing some tinnitus, and seem to remember reading that others on Harvoni are also. The ringing seems unusual, but I'm unsure that it's due to the Harvoni.

__________________

61 yo, GT 1a, liver F1-F2 pre-treatment.

Diagnosis circa 2000. tx naive till 8/6/15, Harvoni tx initiated 8/6/15 through Gilead's Support Path. 28day labs: virus "und." Sides mild. EOT 10/28/15. EOT liver enzymes normal range: AST 25, ALT 18.



Member

Status: Offline
Posts: 5
Date:
Permalink  
 

Hi Robin,first week of tx and no side effects,except insomnia,glad to hear about your energy level increase and that achs and pains have gotten better gives me hope. Thx Scott

__________________
Scott Wiland


Senior Member

Status: Offline
Posts: 209
Date:
Permalink  
 

Hi Jaded, same here with harvoni. About 3 wks ago quit doing workouts. Energy dropped some night slept great others maybe 5 hrs on and off. If I don't sleep seems to be in the center of night when sprits are about. Makes for company, as the past, present, and future mix it up a little. Have decided to put it on auto pilot and just cruz in for an easy landing. Thanks for posting some of the side effects. Be Well.



__________________

65 YO F, GT 1a1b, ast 14 alt 21, fibrosis 3/4 DX 1968 non a or b, TX 12 wks Harvoni, SOT 6.1.15, 1st bld wk: detected unquantifiable EOT 8.28.15 detected unquantifiable, 3 mo.EOT mid Nov.~SVR 12: ) UNDETECTED



Senior Member

Status: Offline
Posts: 157
Date:
Permalink  
 

I finish my 1st 12 weeks of 24 tonight. I had no side effects at all and felt great the 1st 9 weeks or so. Then I started having maybe a day or 2 a week of fatigue which I would recover from the next day and feel great again. But the last 10 days or so have been pretty hard...especially the last few. I slept a lot before tx but soon after starting I would wake up with energy after a normal amount of sleep. Today I slept 11 hours and have been dragging my ass and had to lie down for a bit this afternoon and still need to take it easy today. I have been lifting weights 3-4 times a week for the last 19 years and this week I had to cut it down to 1/2 speed and noticed a huge drop of strength on Monday...tonight I don't dare even try to workout. I thought I was breezing through this and thought I was one of the lucky ones who didn't have any side effects up until recently...now that's changed. I will just have to bare down now and get through the next 12 weeks. But compared to the 70 weeks of interferon & interferon/ribaviron I did 18-19 years ago this is still MUCH easier. I notice sometimes things change though and everything can turn back to fine overnight...hope this will happen again soon. I am also wondering if the effects of the endless sunshine we have had here this summer which I have been enjoying has had a negative effect on me.

__________________

64 year old EOT 10-28-15,SVR24 April 21 2016  ALT-12/AST-23 June '19 - fibroscan 6.9 F-0 July '19



Guru

Status: Offline
Posts: 5629
Date:
Permalink  
 

HI Gracie, wonderful to hear how well you`re feeling and that`s certainly a good recommendation for Harvoni treatment! 

It`s an anxious time for everyone looking ahead to EOT and the wait for those 12 wk results, but I would let yourself `go with the flow` and try not to be apprehensive about finishing your treatment, instead look forward to the time when you can finally say goodbye to the pesky virus! 

Those blueberry squares sound delicious and what a boost it must have been to get the urge to bake again!

Onwards and upwards!  smile

 

 

 

 

 



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 

«First  <  1 2 3  >  Last»  | Page of 3  sorted by
 
Quick Reply

Please log in to post quick replies.

Legal Disclaimer:

THIS FORUM, IT'S OWNERS, ADMINISTRATORS, MODERATORS AND MEMBERS DO NOT AT ANY TIME GIVE MEDICAL ADVICE AND IN ALL CASES REFER ANYONE HERE TO SEEK APPROPRIATE MEDICAL ADVICE FROM THEIR DOCTOR.