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Author Topic: Flu like symtoms  (Read 11093 times)

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Offline susysd

  • Newbie
  • Posts: 1
Flu like symtoms
« on: January 09, 2015, 03:14:34 pm »
Diagnosed with Hep-C over 20 years ago. Never treated. Monitored situation every 6 months by blood work (always within limits), two liver biopsies at 5 years intervals and recently a fibro scan which show a mild fibrosy. I am on Medicare and AARP and was told that the newest single pill treatment is not approved because my health state is not critical. My VL is now 1.6 M
Anyway, I suffer from flu like symtoms from time to time (every couple of months). Wondering if anyone has the same and if this happens because my immune system is fighting Hep-c and thus cannot work against viruses that go around or if it is the actual Hep-c virus that cannot be "contained" by my immune system.
Thank you for any feedback and like all of you, I want to get rid of this insidious and dangerous disease.

Offline Red Hen

  • Member
  • Posts: 187
Re: Flu like symtoms
« Reply #1 on: January 09, 2015, 04:03:00 pm »
I don't know about the flu-like symptoms but I'm sorry you are uncomfortable. Other than that, it sounds like you and your doctor are keeping track of everything very well. One option for treatment might be Viekira, which was recently approved and picked up by Express Scripts. I think Express Scripts is used by medicare. Or at least some medicare plans use it. No expert on this but you could ask your doctor. Good luck with whatever you decide to do!
genotype 1a
completed 12 weeks Viekira pak and ribavirin
final results due around the end of April
Undetected 12 weeks post treatment!

Offline diamondd

  • Member
  • Posts: 13
Re: Flu like symtoms
« Reply #2 on: January 22, 2015, 12:53:22 pm »
I've had those flu-like symptoms for about 15 years. I really don't know if they are some other virus or the hep C. I just try and accept them and find "work-arounds." I have stage 2 fibrosis with some portal scarring, varices, and, now, some kidney involvement.

I finally had to quit my job about 7 years ago. Worked part-time for a while after that, but it's hard.

So, every day, I make sure to do things I define as "positive." A walk every day, pick up litter...little things.

I failed the old treatment twice (once for 24 weeks and then again for 48 weeks). Finally, I'll start Harvoni in a week. I just lucked out with my insurance (and finding a nurse-practitioner who is one heck of a good advocate).

It's counter-intuitive to me that people should be denied this treatment because they are not sick enough. I understand the economics of this for-profit system we call "healthcare." However, the risks of waiting can be dire indeed.

I wish you the best in coping and getting treatment. I've had to push for this for a long time. Take yourself seriously and make sure others do as well.

Offline Katie

  • Member
  • Posts: 784
Re: Flu like symtoms
« Reply #3 on: January 22, 2015, 06:48:18 pm »
I would file an appeal to their decision.  In Alaska we have a contact for Medicare and they are very helpful however I am on an employee based (retiree) pharmacy plan and my Harvoni went through without a hitch which surprised me.  I got the number from our Dept of HSS, Division of Public Assistance. 

AS to your Hep C side effects, I caught everything that came around and when others would kick the cold or flue in a week, I had it for months.  As time progressed I had brain fog, horrible insomnia and fatigue, which finally pushed me into retirement.  I had to force myself to get out of bed and get to work every day for 10 years or more.  I was so sick yet my friends just said it was due to age.  I am a hard worker and enjoy physical work and I think more to prove to myself that I wouldn't let this virus win, I accomplished more than many of my healthy friends, so they didn't see how bad I actually felt. I refused the old treatment as I needed to work and with the duration of it and the nasty side effects AND the low cure rate, it didn't make sense to take it.  Harvoni is a miracle drug and I am so grateful for it.

From the very first pill of Harvoni (December 4th) I started feeling better.  Now I am over half was through my 12 weeks and I feel like a new person.  I sleep and dream like a log, my brain is clear, I find joy in little things, my fatigue vanished and there are other more subtle improvements as well.  The arthritis in my wrists has basically disappeared along with my skin being finer texture and I figure that may be due to my constant hydration.

Your liver is no longer working full time and it can't detoxify your system so I figure we gradually poison ourselves with toxins building up.  (just my take on it).  I am convinced that is why I felt so rotten for so long.  This treatment has given me a new lease on life.

Fight for this treatment!  Don't take a first denial and not keep trying.  Talk your doctor into writing a letter if and if they have already, have them write another one.

Good luck to you,

Katie 
« Last Edit: January 22, 2015, 06:50:42 pm by Katie »
1 year post treatment blood work done and I am FREE!
GT 1a (4/1/2016)
Dx 2005
VL 2.6 million (fluctuated from 2-16 million during the 9 years)
Started Tx 12/4/2014 for 12 weeks
4 week blood work  Detected 59 IU/mL
EOT Detected <12 IU/mL
7.5 weeks post  Undetected
16 week post Undetected
24 WEEK POST UNDETECTED (I made it)
Waiting to feel good but feeling blessed!
12 month post treatment.  All blood work absolutely perfect! VL, as expected UNDETECTED!

Offline Tommync11

  • Member
  • Posts: 7
Re: Flu like symtoms
« Reply #4 on: January 27, 2015, 02:12:33 pm »
Hello everyone,

Yes i have had these flu like symptoms for years.I never realized what was causing it ? I would lay around few days and it would go away.This went on for few years or longer who knows? Then i was diagnosed on a routine physical a couple years ago with this disease geno 1 hep virus. High inflammation minimal scarring! was told of the triple therapy and side effects !! yikes!!! I decided to wait for treatment as i was told by the doctor this new drug,treatment oral minimal sides would eventually come. Thank my higher power its here and i have just been granted the approval of medication through my insurance!!! 1 pill daily 12 weeks 95% cure. really don't know what to expect or what it feels like to be free from this virus? hopefully no more flu like symptoms?? unless i really have the flu ugh!!!! :-\

Offline Katie

  • Member
  • Posts: 784
Re: Flu like symtoms
« Reply #5 on: January 29, 2015, 07:48:02 pm »
Hi Tommy,  Congratulations on your approval and welcome to this forum!  You will find it very helpful and supportive to share and question with people who are fighting the same battle as you. 

I think you will be amazed at how it feels to be rid of the "HepC flu".  My flu like symptoms disappeared within the first week of treatment.  I am probably not 100% yet but feel better than I have in a decade.  Many of my friends tried to tell me it was just the aging process, and I started believing it but now I know it was the hepatitis. About 11 years ago a friend asked me if I was tired...I was exhausted....and I told her I had lost my spark and didn't know why.  This was 2 years before I was diagnosed, like you with my annual bloodwork. You probably read my previous post so I won't repeat it all. Another good thread to see how everyone is doing is the Harvoni Side Effects comments.  It will help you see what others are dealing with and there is lots of good information on it.

Just know the benefits to the treatment outweigh the negative and with your liver in fairly good shape it should be easy on you.  My advise is drink plenty of water to keep hydrated (1/2 gal per day), eat well, rest as needed and do things that are good for you.  Be positive and celebrate that we have this miracle drug that came out in time to make a difference and give us our healthy lives back.

Katie
« Last Edit: January 29, 2015, 07:49:38 pm by Katie »
1 year post treatment blood work done and I am FREE!
GT 1a (4/1/2016)
Dx 2005
VL 2.6 million (fluctuated from 2-16 million during the 9 years)
Started Tx 12/4/2014 for 12 weeks
4 week blood work  Detected 59 IU/mL
EOT Detected <12 IU/mL
7.5 weeks post  Undetected
16 week post Undetected
24 WEEK POST UNDETECTED (I made it)
Waiting to feel good but feeling blessed!
12 month post treatment.  All blood work absolutely perfect! VL, as expected UNDETECTED!

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Flu like symtoms
« Reply #6 on: January 29, 2015, 08:44:49 pm »
Hi Tommy,

Welcome and awesome news that you have started treatment, hang on, drink tons and water and before you know it that missing spark that you didn't even know was missing will come back! Just listen to your body during this journey, normally a headache means more water, if you are tired lay down and relax, nap or read a book. Eat healthy no other pills of any kind even antacids without investigating if it's ok. Ask here, ask your doctor :) Search the forum for your questions, they may have been answered by the Mods already (they are pretty well educated in this Beast) and have been through the ringer in treatments.

Hi SusySD,

Glad you found us, welcome! Don't just say ok because they didn't approve you the first time, honestly we have seen time and time again, the squeaky wheel gets the medication! Be firm and persistent but be nice. Keep trying, it's worth it not the get the Hep C blahs every few months. You don't want to get to where I am with Stage 4 cirrhosis and really sick before you start treatment. Fight for your life and your spark to come back, you deserve it!

Both of you keep posting and keep smiling, just finding this place will help get your through this journey!

Mel
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline JillLynn

  • Member
  • Posts: 205
  • contracted 1973/ peg/rib 1999 & 2004/on harvoni
Re: Flu like symtoms
« Reply #7 on: January 30, 2015, 08:07:41 am »
Susysd....thank you for your post.   I had those flu symptoms for years and years.   always blamed the Hep C but not really sure that was it or not.    My hepatologist always has said everyone has SOOOOOOO many symptoms.....yet he was never sure about anything either.     But I just wanted you and Diamond and Tommy to know I RELATE!!!!
    I just and hope and pray they go away.   I've been off harvoni for a few weeks.     My Dr says I should be feeling GREAT.......but I can't say i feel GREAT....but I'm living my life to the fullest everyday.  Keeping on keeping on.        I just can't give in to the body aches anymore........I do hurt though.   So I don't know.....maybe it's just being 60.

But I wanted to say I relate to the flu like symptoms....and it was NEVER the flu!   So I always thought it was the Hep C but still never 100% sure about anything.

I've been to my Dr. twice since I got off treatment because I just don't feel great....and like always (thank God) everything tests normal.   So, I don't know.........like I said.......I'm trying to ignore it and live each day in gratitude for another day.    Hoping time will heal all of us in everyway!!!
« Last Edit: January 30, 2015, 08:11:42 am by JillLynn »

Offline Tommync11

  • Member
  • Posts: 7
Re: Flu like symtoms
« Reply #8 on: January 30, 2015, 02:56:45 pm »
Thank you everyone!!!!     Well  sunday morning 2-1-15 is the big day!! first pill @ 730 am i am a little nervous however i'm also tired of living with this virus inside of me. i have a great wife who has always been there for me and has always taking care of me more than she knows.So im very blessed in that regard.I'm gonna whip this !!! no doubt in my mind. I am a fighter i'm a survivor life is great i must keep on keeping on!!:) .It helps to know you all are here to listen and share your experiences
Thank You

Tom

Offline Katie

  • Member
  • Posts: 784
Re: Flu like symtoms
« Reply #9 on: January 30, 2015, 03:12:47 pm »
HI Jill Lynn.  Sorry to hear you are still not feeling well.  Hope your doctor figures out what is going on as you have wolves and owls to check on!  Good news on all of your tests but would be better still if your health issues improved.

Keep up your spirits and you'll get through it all.  Sending you (((HUGS))) and best wishes!

Katie
1 year post treatment blood work done and I am FREE!
GT 1a (4/1/2016)
Dx 2005
VL 2.6 million (fluctuated from 2-16 million during the 9 years)
Started Tx 12/4/2014 for 12 weeks
4 week blood work  Detected 59 IU/mL
EOT Detected <12 IU/mL
7.5 weeks post  Undetected
16 week post Undetected
24 WEEK POST UNDETECTED (I made it)
Waiting to feel good but feeling blessed!
12 month post treatment.  All blood work absolutely perfect! VL, as expected UNDETECTED!

Offline morning_glory

  • Member
  • Posts: 104
  • This is the first day, of the rest of your life...
Re: Flu like symtoms
« Reply #10 on: February 10, 2015, 07:43:49 am »
susysd & others,
I feel your aches & pains. I go through 'pouts' of the same thing. The past few months it seems to be worst than in the past, not sure why.

I bought a heated mattress pad for my bed, which sometimes helps. The other thing I do (when I remember to), is to stretch before getting out of bed. Both these things seem to help, but not enough to say - "Wow, I feel so much better!". It just takes the edge off some.

On some days, I would prefer just to stay in bed... but then I can't seem to get comfortable. Flopping around like fish, trying to find the most comfortable position. UGH!

Last week, I was fighting a head cold & felt like I had been run over by a steam rolling. Thought I was coming down with the real flu, except I didn't have a high fever.

I hope anyone experiencing this, gets relief after treatment. Between fatigue and aches/pains... maybe the 'cure' will erase all this for us.

(Still waiting to get Harvoni, never treated.)

Blessings,
MG
Likely infected - mid 70's / Diagnosed - mid 90's
Geno type - 1a
AST - 45
ALT - 51
Viral Load - 435,120
Liver Biopsy 6/2004 - F1-2
Fibrosure 5/2011 - F1-2
Fibrosure 2/2014 - F-0
Treatment Naive, prior to Harvoni
Harvoni started on 5/16/15
8-week Treatment Completed (7/10/15)
4-week bloodwork (6/11/15) Undetected, AST 15, ALT 17
8-week bloodwork (7/13/15) Undetected, AST 14, ALT 16

Offline morning_glory

  • Member
  • Posts: 104
  • This is the first day, of the rest of your life...
Re: Flu like symtoms
« Reply #11 on: February 24, 2015, 07:26:57 am »
I am now taking Krill oil, it really seems to help with my joints and all over aches & pains.
I plan on not taking anything, once I'm on Harvoni.

I hope this helps anyone else needing relief from those flu-like symptoms.

Blessings,
MG
Likely infected - mid 70's / Diagnosed - mid 90's
Geno type - 1a
AST - 45
ALT - 51
Viral Load - 435,120
Liver Biopsy 6/2004 - F1-2
Fibrosure 5/2011 - F1-2
Fibrosure 2/2014 - F-0
Treatment Naive, prior to Harvoni
Harvoni started on 5/16/15
8-week Treatment Completed (7/10/15)
4-week bloodwork (6/11/15) Undetected, AST 15, ALT 17
8-week bloodwork (7/13/15) Undetected, AST 14, ALT 16

Offline rgr

  • Member
  • Posts: 9
Re: Flu like symtoms
« Reply #12 on: March 07, 2015, 11:15:02 pm »
Diagnosed with Hep-C over 20 years ago. Never treated. Monitored situation every 6 months by blood work (always within limits), two liver biopsies at 5 years intervals and recently a fibro scan which show a mild fibrosy. I am on Medicare and AARP and was told that the newest single pill treatment is not approved because my health state is not critical. My VL is now 1.6 M
Anyway, I suffer from flu like symtoms from time to time (every couple of months). Wondering if anyone has the same and if this happens because my immune system is fighting Hep-c and thus cannot work against viruses that go around or if it is the actual Hep-c virus that cannot be "contained" by my immune system.
Thank you for any feedback and like all of you, I want to get rid of this insidious and dangerous disease.

@Susysd There are a lot of people getting the Harvoni free from Gilead after they have been denied twice. No matter what stage your in.

Here is where you need to start.  SUPPORT PATH PROGRAM: http://www.gilead.com/responsibility/us-patient-access
Geno> 1a, Stage 3 fibrosis, Started 12 week Tx January 2015, VL 15 Million.

 


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