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Author Topic: After Harvoni, is this normal?  (Read 22940 times)

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Offline Bestmomy

  • Member
  • Posts: 8
After Harvoni, is this normal?
« on: July 05, 2015, 09:17:08 pm »
Hello everyone,
I am new, in much need of support groups
I finished 12 weeks of harvoni 3/19/15
1b. Viral load 1.8 mil at time of treatment
Infection date unknown, may be as early as 1970
Have not drank alcohol for 30 years
27 day test while on treatment VL 20
Next test a week after end of treatment undetected
12 weeks post treatment undetected
I am grateful and elated, but am feeling so incredibly sad, with much anxiety and struggling in my closest relationships. I've lost close friends along the way, or hide my journey to many who mean a lot to me. As so many , I feel as it's all a nightmare.  Then I feel guilt that it could be worse, and yet may be, and is for many, and I'm beating myself up for not feeling better. My joints are more painful and have a host of minor ailments but feel no right to complain.  I have other unrelated med tests coming up and feeling fearful ,  while so angry that I'm not stronger and more confident.   I am retested for hep c the end of. the year.  I read others stories and admire the courage and stamina.  I wonder if this is a temporary mental challenge of sorts and ask for any input.  Thank you.

Offline GLCII

  • Member
  • Posts: 127
Re: After Harvoni, is this normal?
« Reply #1 on: July 06, 2015, 11:05:09 am »
Bestmomy

I would think you would be extremely excited after being undetected after 12 weeks EOT. Although I do know how you feel about keeping your journey to yourself. I told very few people after I realized the stigma associated with the virus. I had a Dental Hygenist refuse to clean my teeth once. Along with a few other snide remarks. After that, I vowed then to keep it to myself.Though I didn't and don't let it bother me. I figure health issues is one of the things you don't talk about with other people that aren't in the same boat as you. They don't understand.

As for feeling down, maybe you should talk to your doctor. It could be the meds or something else throwing your bodies chemistry out of whack and relief could just be a pill away. Maybe even just sitting down with someone who understands where your at and what you're going thru could help.

I do know that after 12 weeks EOT and undetected, you should be headed to Disney World  :D  Or Las Vegas  ;) 

If I hit 12 weeks undetected, I'm on the first thing smoking for atleast a week. I think if you look at the brightside and realize that you're probably going to stay undetected (cured) you're going to feel a whole lot better about things. But that's just my opinion. Your's is the one that really matters.
 I heard a phrase once that said "The better one feels about ones self, the better the rest of the world looks"

Good Luck!!!
Pre Tx (VL 12043488) ALT 52/ AST 39
Harvoni Start Date 03/12
2 Week in Tx Results HCV RNA Detected, less than 15 IU/mL. ALT 19 / AST 19
4 Weeks in Tx Results HCV RNA Not detected. ALT 21 / AST 18
12 Week in Tx Results HCV RNA Not detected. ALT 17 / AST 19
--------------------------------------------------------------
Post 12 Week EOT Tx ALT 19/ AST 19 (Undetected)
Post 24 Week EOT Tx ALT 19/ AST 15 (Undetected)

Offline Mr. Bob

  • Member
  • Posts: 37
Re: After Harvoni, is this normal?
« Reply #2 on: July 08, 2015, 05:34:54 pm »
From watching many including myself.....this seems often  normal   but totally unacceptable , the medicine was not supposed to cause  joint / muscle problems....

Offline Rexray

  • Member
  • Posts: 12
Re: After Harvoni, is this normal?
« Reply #3 on: July 13, 2015, 10:06:27 am »
I'm 12 weeks undetected. I've had joint pain since I was 40, I'm now 64.
I don't seem to have joint pain any worse than before and I ride offroad moorcycles and do hand thrown pottery. Yes, my pain is worse but I call that age, not worse since my Harvoni treatment.
Kinda depends on your age I guess...
I doubt you'd feel like a spring chicken just because your cured.
Best (positive) thing I noticed is my brain woke up, no more 'malaise' which in itself is a blessing.
Hang in there.

Offline scott51-can

  • Member
  • Posts: 5
Re: After Harvoni, is this normal?
« Reply #4 on: July 13, 2015, 07:21:53 pm »
Hello everyone,
I am new, in much need of support groups
I finished 12 weeks of harvoni 3/19/15
1b. Viral load 1.8 mil at time of treatment
Infection date unknown, may be as early as 1970
Have not drank alcohol for 30 years
27 day test while on treatment VL 20
Next test a week after end of treatment undetected
12 weeks post treatment undetected
I am grateful and elated, but am feeling so incredibly sad, with much anxiety and struggling in my closest relationships. I've lost close friends along the way, or hide my journey to many who mean a lot to me. As so many , I feel as it's all a nightmare.  Then I feel guilt that it could be worse, and yet may be, and is for many, and I'm beating myself up for not feeling better. My joints are more painful and have a host of minor ailments but feel no right to complain.  I have other unrelated med tests coming up and feeling fearful ,  while so angry that I'm not stronger and more confident.   I am retested for hep c the end of. the year.  I read others stories and admire the courage and stamina.  I wonder if this is a temporary mental challenge of sorts and ask for any input.  Thank you.
When i first started the harvoni my anger went away .... now im 6 weeks off and im angry again
im depressed because of my back problems i think are from the drug, so your not alone. i felt like crap the very next day that i stopped harvoni ,and i havnt had much improvment.
i guess time will tell.
« Last Edit: July 13, 2015, 07:24:11 pm by scott51-can »

Offline Katie

  • Member
  • Posts: 784
Re: After Harvoni, is this normal?
« Reply #5 on: July 13, 2015, 08:24:07 pm »
Hello everyone,
I am new, in much need of support groups
I finished 12 weeks of harvoni 3/19/15
1b. Viral load 1.8 mil at time of treatment
Infection date unknown, may be as early as 1970
Have not drank alcohol for 30 years
27 day test while on treatment VL 20
Next test a week after end of treatment undetected
12 weeks post treatment undetected
I am grateful and elated, but am feeling so incredibly sad, with much anxiety and struggling in my closest relationships. I've lost close friends along the way, or hide my journey to many who mean a lot to me. As so many , I feel as it's all a nightmare.  Then I feel guilt that it could be worse, and yet may be, and is for many, and I'm beating myself up for not feeling better. My joints are more painful and have a host of minor ailments but feel no right to complain.  I have other unrelated med tests coming up and feeling fearful ,  while so angry that I'm not stronger and more confident.   I am retested for hep c the end of. the year.  I read others stories and admire the courage and stamina.  I wonder if this is a temporary mental challenge of sorts and ask for any input.  Thank you.

I understand.  I felt better than I had in years on treatment and recently had my 16 week post treatment test come back Undetected.  All of my blood work was perfect (including thyroid) and I told friends, "for being so healthy, I should feel so horrible"!  The day after finishing Harvoni I immediately had severe vertigo, and fatigue.  The vertigo didn't last long but the weakness has gotten worse.  I was fatigued before treatment, for years most likely due to insomnia, but I am sleeping like a baby now (in fact I can't seem to get enough sleep) but I am so weak.  It is much different and more similar to after you have had a really bad flu where you break the fever but are so weak you can't even force yourself to do anything.  I force myself to accomplish one thing a day just to keep up with my daily housework and shopping. 

Anyone who has followed my posts for the past 6 months knows I am a worker and love my projects and gardening, woodworking etc, but all projects are on hold.  I started to build a bookcase in March and felt it too dangerous to run saws plus I couldn't deal with the lumber required so there it sits, in the middle of my shop.  Not stressed out by it as it will wait for me, just disappointed.

Since I have joint issues, I can't really put any of that blame on Harvoni, but this weakness is something I have NEVER experienced before.

I did call Gilead and reported it and am also going to report it to FDA.  Gilead Drug Safety & Public Health  (1-800-445-3235) and FDA Med Watch Program (1-800-FDA-1088) in case you'd like to report your issues.  It is probably a good idea.

I am grateful and delighted I am no longer a bio-hazard and I celebrate that but can't wait to feel better!

Hope everyone feels better soon.

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 Cure4life

  • Member
  • Posts: 13
Re: After Harvoni, is this normal?
« Reply #6 on: August 16, 2015, 11:56:03 pm »
Wow  I thought I was the only one feeling that way after treatment. I did 16 weeks of harvoni which included 5 weeks of riba. Literally the day after I took the last pill I felt so tired with no energy what so ever. Not even before treatment I felt so bad. This was 9 weeks ago and although I have a bit more energy I still feel really tired, emotionally flat and occasional brain fog. I will do my 12 weeks eot blood test on 8 September so let's hope it worked. I also have joint pain mostly a night but I did have some discomfort before treatment so I can't attributed to harvoni. Best wishes. 

Offline Katie

  • Member
  • Posts: 784
Re: After Harvoni, is this normal?
« Reply #7 on: August 17, 2015, 12:09:53 am »
Hi Cure4life:  Please consider reporting your post treatment side effects to Gilead.  I submitted a question online and they called both me and my doctor.  The more information they get the better.

It's been almost 6 months post for me, and I am slowly getting better but not even close to where I was.  No endurance and tired all of the time.  Totally not my norm.  I am weak.  I've been pushing myself and it about kills me but I know you gotta keep moving.  What I call pushing myself these days was a relaxing day in the past though.

I know it will pass and little by little I'll get there.  Hope you feel better soon and you get the all clear news with your September test!

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 KimInTheForest

  • Member
  • Posts: 1,972
  • Believe in yourself
Re: After Harvoni, is this normal?
« Reply #8 on: August 17, 2015, 12:17:04 am »
I too felt quite a bit worse after completing treatment than I did while on treatment. And I was NOT expecting that.

But that may be turning a corner for me (let's hope). I am just 3 weeks post-tx and it feels like some of the issues are starting to settle down. I know it takes a while for hemoglobin to rebound after ribavirin. But that wouldn't explain why I got so much worse post-tx.

Treatment itself was not difficult. Side effects that got enormously worse post-tx but  were minor issues during treatment include:

-insomnia
-muscle cramps in calves and feet
-oral lichen planus
-dry cough (sometimes for 2 hours straight)
-asthmatic breathing (I have no history of asthma or allergies)
-appetite suppression
-my body behaving like it is allergic to everything
-deep headaches (zero during treatment or prior)
-burning up at night (101.2 F last night - no I am not sick with some illness, absolutely no other cold/flu symptoms, just a crazy night fever)

I think it just takes time for the body and the immune system to find its new balance  after living for decades with a virus that is then gone overnight.

I am sure we will all get there. And the virus is gone! That's the important thing. I feel blessed to have gotten access to this cure when so many are denied it.

kim :)
« Last Edit: August 17, 2015, 03:08:34 am by KimInTheForest »
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline sickpuppy

  • Member
  • Posts: 51
Re: After Harvoni, is this normal?
« Reply #9 on: August 17, 2015, 08:17:06 am »
I'm sorry to tell you but there's no such thing as a "crazy night fever". If you have a fever and are off the TX, something's definitely up inside you. Whether it's HCV related or not, that's another story.

Fever is the body's way of reacting to a foreign object inside your body. Usually bacteria, but can also be a myriad of other things. Don't ignore it. Even a very low-grade, prolonged fever (which usually comes with muscle aches and joint fatigue) can indicate something life threatening.

In fact, all of the symptoms you describe are associated directly with a fever (i.e not necessarily caused by the problem itself, thus even more difficult to diagnose the problem, because of the fact that these other symptoms cause confusion on the correct diagnosis).

Fever comes with:

Abdominal pain or cramping
Cough
Diarrhea
Fatigue
Muscle aches, joint aches, headaches, or earaches
Low appetite or nausea
Rash
Redness or tenderness of the skin
Shortness of breath

Don't mean to scare you, but lymphoma (and other cancers as well) usually come with low-grade fevers.

Go check it out. Again.
GT1a - TX-naive

Baseline:

16.2 kPa
ALT: 61 iu/L
ALP: 74 iu/L
Albumin: 38g/L
Bilirubin: 27 umol/L
Platelets: 80
VL: 792,000
History of 4 violent varices bleeding episodes and splenomegaly present.

21/07/15 - TX start - Harvoni + Ribavirin 12 weeks.
Week 2 - UND
Week 4 - UND
Week 8 - UND
13/10/15 Week 12 - UND
19/11/15 - SVR4
8/1/16 - SVR12 !!!!!

Offline KimInTheForest

  • Member
  • Posts: 1,972
  • Believe in yourself
Re: After Harvoni, is this normal?
« Reply #10 on: August 17, 2015, 01:15:54 pm »
sickpuppy, there are all kinds of reasons why the body runs a fever - including menopause and even allergy (as in overactive immune system). my point is the immune system has not reset itself post-virus but is in process of doing that.

believe me I know my own body (and medicine and biology) better than you.

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline sickpuppy

  • Member
  • Posts: 51
Re: After Harvoni, is this normal?
« Reply #11 on: August 17, 2015, 01:20:08 pm »
Yes, clearly you do. Lymphatic massage and immune system reset. Nice ones. Listen honey, just because it's called a system doesn't actually have anything in common with a TV, which you can reset.

Why don't you do some Tai Chi breathing to prevent the common cold too. Might work.
GT1a - TX-naive

Baseline:

16.2 kPa
ALT: 61 iu/L
ALP: 74 iu/L
Albumin: 38g/L
Bilirubin: 27 umol/L
Platelets: 80
VL: 792,000
History of 4 violent varices bleeding episodes and splenomegaly present.

21/07/15 - TX start - Harvoni + Ribavirin 12 weeks.
Week 2 - UND
Week 4 - UND
Week 8 - UND
13/10/15 Week 12 - UND
19/11/15 - SVR4
8/1/16 - SVR12 !!!!!

Offline dragonslayer

  • Member
  • Posts: 873
Re: After Harvoni, is this normal?
« Reply #12 on: August 17, 2015, 02:26:57 pm »
I repeat this often, but its hard for some people to grasp:

Correlation does not imply Causation!
Paul

DX 2008
Started Harvoni 11/26/14 for 8 wks
Completed 8 wks Harvoni 01/20/15
EOT RNA Quant result:  Detected 29
7.5 wk post tx: Detected < LLOQ(12)
11 wk post tx: UNDETECTED SVR12
24 wk post tx: UNDETECTED SVR24; AST 26; ALT 22; ALP 73
48 wk post tx: UNDETECTED SVR48; AST 18; ALT 18; ALP 70
GT 1a
vl 2.4mil
2008 bpx: Stage&Grade 0
2013 bpx: Stage&Grade: 0-1
IL28B: TT
likely infected early '70s

Offline dchawaii

  • Member
  • Posts: 3
Re: After Harvoni, is this normal?
« Reply #13 on: August 17, 2015, 11:48:09 pm »
Been off Harvoin for 1 month and have little bit of anger and depression but getting better with time.

Offline dchawaii

  • Member
  • Posts: 3
Re: After Harvoni, is this normal?
« Reply #14 on: August 17, 2015, 11:55:42 pm »
anyone having problems with your vision after harvoni 24 weeks treatment

Offline dchawaii

  • Member
  • Posts: 3
Re: After Harvoni, is this normal?
« Reply #15 on: August 18, 2015, 12:07:20 am »
been off 1 month getting back to normal slowly,but my vision at night is bad.anyone else ?Im still having anxiety and tired but should pass with time,I hope !

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,543
  • Get tested, get treated, get cured, fight Hep c!
Re: After Harvoni, is this normal?
« Reply #16 on: August 18, 2015, 01:29:42 am »
Yes, clearly you do. Lymphatic massage and immune system reset. Nice ones. Listen honey, just because it's called a system doesn't actually have anything in common with a TV, which you can reset.

Why don't you do some Tai Chi breathing to prevent the common cold too. Might work.

This forum is to be a safe place where we can express our feelings and concerns with hep c and treatment. Different people have differing experiences that does not make their feelings and concerns less valid.

We should come here to share a supportive and respectful environment.

Or as my mother said "If you can't say something nice don't say anything at all"
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Mugwump

  • Member
  • Posts: 778
  • My number of posts means nothing, piscor ergo sum!
Re: After Harvoni, is this normal?
« Reply #17 on: August 19, 2015, 09:37:23 am »
Perhaps part of what you are going through is because many people find it difficult to discuss this or any disease for that matter. I have learned to limit my discussions about having this disease and frequently only answer direct questions or only interject if I hear someone repeating a blatant falsehood about HCV infection.

For this very reason the friends that I do have are very clear about what is going on with me and why.  I do not need to discuss my current health status with them, I only answer if they ask. This attitude has helped me in the work I do as well as personal dealings on a one to one level.

That being said constantly dealing with and fretting over whether or not to tell someone you have HCV is perhaps not so much of an issue as one might think.

The flip side of this attitude toward your status is;
If someone is ignorant about the true facts of HCV and fears to have dealings with you because you have HCV and treats you like Typhoid Mary if you tell them, do you really want to maintain a relationship with this person? I certainly would not!

This disease can and does destroy relationships but it can also bring people together if dealt with in a compassionate way, This compassion starts within yourself as the one who was infected and can lead to a better way to deal with what HCV has wrought in your psyche and also the wide spread ignorance and intolerance it has spawned in some places.

This situation very much reminds me of a friend that I once had for a very short time when I was in my teens. Her parents had one of their show dogs put down because it had cross bred with a mutt. She explained to me that the dog would never again "breed true". They firmly believed this to be true and rebuffed my objection to their belief as if they were stating scientific fact! We very quickly became estranged when I insisted upon the scientific falsehood of their beliefs. Later on I found out that many so called "professional show dog breeders" still believe this myth. Ignorance is a very hard thing to combat especially when it becomes accepted by many as fact. 

Perhaps it is going to be hard for some of us to stop thinking of ourselves as a walking bio hazard with constant worries about how much liver damage is currently going on and indeed many will not believe it when we tell them that we are no longer such a risk.

We cannot really forget that we had the disease and we should not do so, but we really need to learn to grow emotionally beyond how this affliction has effected us and will continue to effect us in our relationships.

Your post truly underscores why we need to discuss this rationally and with open minds!
 
Now that I am SVR 12 I know that I can slowly remove the constant worries and fear that inflicted itself upon my soul since 1993 when I was first diagnosed with HCV. Perhaps this is all many here and elsewhere need to do as well.

I am slowly learning to find happiness again as others smile and laugh. Perhaps we all need to seek out the simple joys in life to effectively deal with the years of fear, remorse and self doubt that HCV has brought down upon us.

Best wishes to you and all who are learning how to deal with the hell that this disease has created. Truly, I do not believe that even a trained psychologist could answer your question as to whether or not what you are experiencing post Harvoni treatment is normal indeed we are all slowly finding our way out of this horror.

Eric
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline Waman

  • Newbie
  • Posts: 1
Re: After Harvoni, is this normal?
« Reply #18 on: August 19, 2015, 02:26:44 pm »
Hello Eric.  My name is Waman.  I was diagnosed just 2 years earlier than yourself.  Your note has touched my heart.  It has brought back so many memories from years gone by.  Ones own mental anguish never stops.  As you go thru the torments of earlier treatments such as interferon with Rib every second day only to find out after 3 months it didn't do a thing.
You thank your Dr and go home thinking "I just lived thru the 3 hardest months of my life to achieve what?  Nothing.  So then there is a period of time to get over what you self inflicted to your body and mind.

A few years later you hear the injection program has been upgraded to just one shot weekly.  Now the question. Do I want to go through this again? You decide to attempt the second treatment only to find out the side effects are exactly the same.  At least this time my Dr indicated a blood test would be done after 1'month the treatment isnt working.  So once again your hopes are smashed and you keep on keeping on.

You think about the disease and see the world in such disarray and the pain other people loved ones and realize how many are so worse off than you.  The world can bring you down or you can allow it to motivate you, beat down your own insecurity and help others.

I am now on this new Harvoni treatment.  Six months to deal with this then hopefully I will be free. Normal as I can make it. I'm so happy you have rid yourself of this debilitating disease Eric.  To all others out there please don't give up.  This drug will be made available to all who need it.  One way or another the financial hit will be covered by provinces or states or a new cure will be made available at a much cheaper cost.  Do not give up the fight.  Read Eric's note.  Waman

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,543
  • Get tested, get treated, get cured, fight Hep c!
Re: After Harvoni, is this normal?
« Reply #19 on: August 19, 2015, 05:51:06 pm »
Well said Eric

Time to move forward with what we have lost and what we have gained and live the best lives we can now that so many of us are free from this burden we have been carrying for so long.

Best to you
Lynn
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline chino1969

  • Member
  • Posts: 117
Re: After Harvoni, is this normal?
« Reply #20 on: August 23, 2015, 05:11:07 pm »
Hello everyone,
I am new, in much need of support groups
I finished 12 weeks of harvoni 3/19/15
1b. Viral load 1.8 mil at time of treatment
Infection date unknown, may be as early as 1970
Have not drank alcohol for 30 years
27 day test while on treatment VL 20
Next test a week after end of treatment undetected
12 weeks post treatment undetected
I am grateful and elated, but am feeling so incredibly sad, with much anxiety and struggling in my closest relationships. I've lost close friends along the way, or hide my journey to many who mean a lot to me. As so many , I feel as it's all a nightmare.  Then I feel guilt that it could be worse, and yet may be, and is for many, and I'm beating myself up for not feeling better. My joints are more painful and have a host of minor ailments but feel no right to complain.  I have other unrelated med tests coming up and feeling fearful ,  while so angry that I'm not stronger and more confident.   I am retested for hep c the end of. the year.  I read others stories and admire the courage and stamina.  I wonder if this is a temporary mental challenge of sorts and ask for any input.  Thank you.

Hi Bestmomy.
You just described how I am feeling right now.  I'm thinking that this is all part of the healing process along with the realization that you are now cured.  My feelings are all over the place.  I just finished 24 weeks of Harvoni, was SVR 4, 12 & 16 weeks.  Am now waiting on my EOT bllod work and then my 12 week EOT which will be the 1st week of November.  I see my Dr. Sept. 1st and will ask if other patients report the same.

Offline chino1969

  • Member
  • Posts: 117
Re: After Harvoni, is this normal?
« Reply #21 on: August 23, 2015, 05:19:15 pm »
Perhaps part of what you are going through is because many people find it difficult to discuss this or any disease for that matter. I have learned to limit my discussions about having this disease and frequently only answer direct questions or only interject if I hear someone repeating a blatant falsehood about HCV infection.

For this very reason the friends that I do have are very clear about what is going on with me and why.  I do not need to discuss my current health status with them, I only answer if they ask. This attitude has helped me in the work I do as well as personal dealings on a one to one level.

That being said constantly dealing with and fretting over whether or not to tell someone you have HCV is perhaps not so much of an issue as one might think.

The flip side of this attitude toward your status is;
If someone is ignorant about the true facts of HCV and fears to have dealings with you because you have HCV and treats you like Typhoid Mary if you tell them, do you really want to maintain a relationship with this person? I certainly would not!

This disease can and does destroy relationships but it can also bring people together if dealt with in a compassionate way, This compassion starts within yourself as the one who was infected and can lead to a better way to deal with what HCV has wrought in your psyche and also the wide spread ignorance and intolerance it has spawned in some places.

This situation very much reminds me of a friend that I once had for a very short time when I was in my teens. Her parents had one of their show dogs put down because it had cross bred with a mutt. She explained to me that the dog would never again "breed true". They firmly believed this to be true and rebuffed my objection to their belief as if they were stating scientific fact! We very quickly became estranged when I insisted upon the scientific falsehood of their beliefs. Later on I found out that many so called "professional show dog breeders" still believe this myth. Ignorance is a very hard thing to combat especially when it becomes accepted by many as fact. 

Perhaps it is going to be hard for some of us to stop thinking of ourselves as a walking bio hazard with constant worries about how much liver damage is currently going on and indeed many will not believe it when we tell them that we are no longer such a risk.

We cannot really forget that we had the disease and we should not do so, but we really need to learn to grow emotionally beyond how this affliction has effected us and will continue to effect us in our relationships.

Your post truly underscores why we need to discuss this rationally and with open minds!
 
Now that I am SVR 12 I know that I can slowly remove the constant worries and fear that inflicted itself upon my soul since 1993 when I was first diagnosed with HCV. Perhaps this is all many here and elsewhere need to do as well.

I am slowly learning to find happiness again as others smile and laugh. Perhaps we all need to seek out the simple joys in life to effectively deal with the years of fear, remorse and self doubt that HCV has brought down upon us.

Best wishes to you and all who are learning how to deal with the hell that this disease has created. Truly, I do not believe that even a trained psychologist could answer your question as to whether or not what you are experiencing post Harvoni treatment is normal indeed we are all slowly finding our way out of this horror.

Eric

Eric,
Fantastic post.  Thanks for sharing.

Offline nicole_1234

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Re: After Harvoni, is this normal?
« Reply #22 on: August 24, 2015, 10:29:42 pm »
Yes thank you for that Eric. Its a nice post and what I needed to hear.
Genotype 1a
TX interferon/riba 2007 (relapsed)

TX Harvoni 12 week start Dec 3 2014
Starting vl 650,000  ALT 55 AST 63
2 week  vl <15
4 week vl UND
8 week vl UND
12 week EOT ALT 11 AST 18
6 week post tx UND ALT 15 AST 20
12 week post tx UND (CURED!!!!) ALT 11 AST 20
24 week post tx UND ALT 11 AST 18

Offline hepcme

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Re: After Harvoni, is this normal?
« Reply #23 on: August 30, 2015, 07:39:51 am »
Katie
  good to hear how you are doing but saddened that you are still fatigued...I too have found it a struggle with good days and bad days yet...I am now 28wk post tx and was afraid the virus was back...I go Sept 1 for bloodwork again to see a full bloodwork...I am fatigued after eating and still have some itching...I think it could be my thyroid...I get fatigued right after breakfast and could go back to bed but i just lay around until the energy kicks in (4pm) I am turning into a nightowl...but I still go to bed at 10-11pm...I force myself to do stuff with the Twhouse here but the motivation is low.....I mainly do it to sweat, it is in the 100's here in AZ so , I get a good work out but slow mo...try to get those toxins out...I still get waves of vertigo also...I find myself looking for a wall sometimes...I started taking drops of iodine with water and going to see if that helps...I did have ,on my labs during TX and while HCV = hypothyroidism but it was not alarming to Doc...I feel like when I first found out about this monster..well not that bad but always tired...not the zoom zoom zoom...well that wasn't normal either on TX...like white crosses..LOL...I too think the immune system and other organs are finding a balance...I think a year will show results of balance...
Looking forward to results on labs this month...  I feel it is gone..
My eyes are doing better now the sun is back..we just had monsoons for two months so I could not do the sun-gazing...I had my eyes checked and doc said they are better than check up in May...I risked this sun-gazing thing cause my eyes were so bad...the sun has high content of vit a and d...it is dangerous if not followed stickly by instructions...only in earliest AM or sunset PM...I thought it a hoax but had to do something docs are not helping...they just keep silent and take the money...anyway take care ...one day at a time..we can do this..even though it has taken me 3 days to replace two elect. outlets on walls..still don't work , in fact now they don't work at alllll...time for an electrician...
anne

Offline hepcme

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Re: After Harvoni, is this normal?
« Reply #24 on: August 30, 2015, 07:41:27 am »
We share experience , strength and hope...

Offline Penniann

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Re: After Harvoni, is this normal?
« Reply #25 on: September 24, 2015, 02:21:51 am »
Hi. I am four weeks post Harvoni treatment. The virus is now undetected. Week one post-treatment was horrible. I felt weak and tired.  I also had really bad joint pains in every joint. Week two and three I felt not as tired, and still with the joint pain which I had before treatment, just not as bad. Well, now I'm on week four. I feel better. Not perfect, but improving. The join pain is not as bad either.

Lol, and now I have diarrhea. I can't be having this problem, I work in call center at the hospital. I had to keep going back and forth the restroom three and four times today. I finally told my manager the truth before she asks. I had this problem all through the treatment, it's just worse now. I'm going to give it some time and not get upset. Now I'm thinking of it in a different way. We had a serious disease. Then we took powerful medication. I feel that I'm probably recovering from the medication and the disease, which means I'm still in recovery. I feel that if I don't put a time limit on the recovery period, I will relax more.  I'm not going to let myself think what if the virus comes back. I think I'm going to have to take this recovery one day at a time.

Sorry, if I gave too much information. I just want people know they aren't alone if they are also feeling the way I am.

I'm very happy for everyone that is doing great.  I also wish the best for the ones not doing so good at this time.

Offline Mugwump

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Re: After Harvoni, is this normal?
« Reply #26 on: September 24, 2015, 10:35:38 am »
Hi. I am four weeks post Harvoni treatment. The virus is now undetected. Week one post-treatment was horrible. I felt weak and tired.  I also had really bad joint pains in every joint. Week two and three I felt not as tired, and still with the joint pain which I had before treatment, just not as bad. Well, now I'm on week four. I feel better. Not perfect, but improving. The join pain is not as bad either.

Lol, and now I have diarrhea. I can't be having this problem, I work in call center at the hospital. I had to keep going back and forth the restroom three and four times today. I finally told my manager the truth before she asks. I had this problem all through the treatment, it's just worse now. I'm going to give it some time and not get upset. Now I'm thinking of it in a different way. We had a serious disease. Then we took powerful medication. I feel that I'm probably recovering from the medication and the disease, which means I'm still in recovery. I feel that if I don't put a time limit on the recovery period, I will relax more.  I'm not going to let myself think what if the virus comes back. I think I'm going to have to take this recovery one day at a time.

Sorry, if I gave too much information. I just want people know they aren't alone if they are also feeling the way I am.

I'm very happy for everyone that is doing great.  I also wish the best for the ones not doing so good at this time.
Not too much info at all! I take it you had a 12 week or 24 week tx? There are many of us who felt like crap after treatment. I am beginning to suspect that it is because all of a sudden our livers are healthy!

The logic of this is that WHAM the liver and our immune systems in general are now capable of producing large quantities of antibodies again and the first one it is triggered to produce is the one that controlled HCV for all the years that we have survived this disease! The results are a swack of flu like symptoms including joint, muscle pain and even bowel problems for some.

I am completely going out on a limb here but there has got to be a reason why some of us feel like crap after treatment and others less so.

Regards and I am sure we will all get over it given time.
Eric
« Last Edit: September 24, 2015, 10:37:40 am by Mugwump »
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline hepcme

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Re: After Harvoni, is this normal?
« Reply #27 on: September 24, 2015, 05:35:40 pm »
I was the opposite at 5 weeks post TX...I was constipated but things are moving in a normal positive motion now...LOL   I drank Aloe Vera Jc and took a detox tea at night...

I gave brown rice and chicken to my cat and pumpkin for diareah  took three days but back on track  :}   just sayin

 


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