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Author Topic: feel horrible 5 weeks post tx anyone else  (Read 10873 times)

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Offline Karin

  • Member
  • Posts: 45
  • Hi Glad to meet all of you
feel horrible 5 weeks post tx anyone else
« on: November 16, 2016, 07:10:13 am »
 Is this site for everyone? or only Harvoni patients that have no side effects ???
genotype 1a
fibroscan f3
diagnosed April 2016
Began Harvoni July 19th 2016
4week blood test today Aug 16 2016
Negative for virus on 4 week check
finished Harvoni Oct 11tth 2016

Offline robertk1997

  • Member
  • Posts: 6
Re: feel horrible 5 weeks post tx anyone else
« Reply #1 on: November 16, 2016, 07:50:13 am »
That's not true I've read a lot of reports from people with bad experiences on harvoni. What's your side effects? I've heard of many feeling bad up until months afterwards its not abnormal

Offline Luna7

  • Member
  • Posts: 179
Re: feel horrible 5 weeks post tx anyone else
« Reply #2 on: November 16, 2016, 09:32:49 am »
Is this site for everyone? or only Harvoni patients that have no side effects ???

Hi Karin,

There are certain foods that are very effective for repairing mitochondria.
Mitochondria can be damaged by medications.
The following is what I found helpful, and it really is pretty much a diet that eliminates candida too.
I hope you feel better soon!
 
     GOOD FATS & LOTSA VEGGIES & OTHER STUFF

A tablespoon or more of coconut oil, lecithin, or olive oil (make sure it's real olive oil).
A blended green drink every day or at least a few times a week (kale, spinach, celery, avocado, lemon juice).
Minimize carbs (basically I try to get all my carbs from veggies & do not eat grains), and make up for those calories with more fat and moderate protein.
Organic as much as possible (to reduce pesticides used on non-organic food, and to make sure food has more nutrients as non-organic food is grown on poor soil).


     BONE BROTH

Bone broth is different from plain broth in that it's boiled for many hours and contains nutritious stuff from the bones & collagen that support brain health.
I can't emphasize enough how this stuff supports brain health. Grandma's chicken soup vindicated! lol  And in the old days they were smart and used to chew on bones.

You can do this in a slow cooker if you don't want to leave a pot on the stove for hours. Or get and Instant Pot that makes it in 2 1/2 hours (a new kind of pressure cooker).
Just add good bones to a pot (from organic, grass fed cows, or organic free-range chickens -- fed non-GMO food and raised with no growth hormones or antibiotics).
I cook a chicken then use the meat and save the bones for later.
It's getting easier and easier to find good sources now but you will probably have to search around or ask at the health food store. Butchers have soup bones too.
Add a few veggies (few carrots, onions, garlic - or look online for recipes) and cook, then strain and refrigerate.


      WHEY SMOOTHIE DRINK

Great brand here:
https://www.amazon.co.uk/dp/B007FCPUS8?psc=1
I linked to the vanilla variety but they have other flavors that are sweetened (supposedly not with bad stuff but best check. I get the plain and use Nustevia plus vanilla or almond flavoring)
It's organic, from grass-fed cows, GMO & antibiotics-free,non-denatured.
Look @ all the stuff in the last window -- those are what the brain needs to function well.

Sweeten with Nustevia as it has less of a bitter taste:
https://www.amazon.co.uk/Nunaturals-LSTEV-PLAS-2-NuNaturals-Clear-Stevia/dp/B00009Q95J/ref=sr_1_4_a_it?ie=UTF8&qid=1478198437&sr=8-4&keywords=nustevia

Recipe FOR WHEY DRINK
12 drops of Nustevia
Vanilla extract, cocoa, lemon extract, almond extract or whatever u want
1 scoop whey powder
Half cup water
5 or so ice cubes.
Blend for one minute, and the whey creates a thick yummy substance to eat with a spoon - like whipped cream

     KOMBUCHA
This can be found in the health food store if you don't make it yourself. Must be raw and usually will say so on bottle (don't want pasteurized as that removes the good stuff). It's kind of pricey but I just have half a bottle every other day (8 ounces).
It provides the enzymes that digests the bone broth and whey drink, among other things that support gut/brain health.
Our gut -- all those micro-organisms - is the biggest part of our immune system, and there is a connection between gut health & brain health.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

        FERMENTED VEGGIES (not part of the morning ritual, but taken here and there throughout the day with food)
   
KIMCHI or Fermented veggies from health food store (I use fermented cabbage, but it must be in the refrigerated section and not something in a can as it has to have the live stuffs in it).
I take a bit here and there with meals, and it supports digestion, provides enzyme creation, and helps the gut/brain thing with lots of micro-organisms that help the immune system.
Yogurt has probiotics too, but there are loads of them and fermented veggies have many more varieties.

I am finding that fermented veggies is working as well as the kombucha for me, taken with each meal.

Luna :)
« Last Edit: November 16, 2016, 09:36:21 am by Luna7 »
Between F2 & F3
Alt & Ast nearly 100
Viral load over 8 million
Gt 3a

Treated 12 weeks with Sovaldi & Daklinza, start date mid-April 2016
Undetected at 4 weeks into treatment
Alt & Ast  normal
Treatment completed July 14
Most likely will be undetected at 12 weeks (mid October 2016) as symptoms are gone

Offline KimInTheForest

  • Member
  • Posts: 1,972
  • Believe in yourself
Re: feel horrible 5 weeks post tx anyone else
« Reply #3 on: November 16, 2016, 01:02:17 pm »
Is this site for everyone? or only Harvoni patients that have no side effects ???

This thread: https://forums.hepmag.com/index.php?topic=2053
("Finished 12 weeks of Harvoni Jan 8 and Not Feeling Good") began nearly 2 years ago and now has more than 500 replies posted. So you are definitely not alone, Karin. There are many threads on this site about feeling like crap after completing treatment. It's different for everybody. But people are posting quite freely here about post-treatment problems problems.

Good luck, and let us know how you progress.

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 Lynn K

  • Global Moderator
  • Member
  • Posts: 4,543
  • Get tested, get treated, get cured, fight Hep c!
Re: feel horrible 5 weeks post tx anyone else
« Reply #4 on: November 16, 2016, 05:01:12 pm »
Hi have you discussed your problems with your doctor and have they offered any advise or help? Also on your prescribing information sheet you should have received with your prescription there is information where to report side effects I have copied here:

To report SUSPECTED ADVERSE REACTIONS, contact Gilead Sciences, Inc. at 1-800-GILEAD-5 or FDA at 1-800-FDA-1088 or www.fda.gov/medwatch.

https://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_pi.pdf

Please let them know what sort of problems you are having
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 Karin

  • Member
  • Posts: 45
  • Hi Glad to meet all of you
Re: feel horrible 5 weeks post tx anyone else
« Reply #5 on: December 01, 2016, 10:39:49 am »
Hi Kim, i went to the page u left for me to see but the last post was from 2015. Were they not allowed to post anymore because they too were sick from Harvoni??? where did they go? Strange the sick people kinda disappear on this forum??????
genotype 1a
fibroscan f3
diagnosed April 2016
Began Harvoni July 19th 2016
4week blood test today Aug 16 2016
Negative for virus on 4 week check
finished Harvoni Oct 11tth 2016

Offline andrew90

  • Member
  • Posts: 71
Re: feel horrible 5 weeks post tx anyone else
« Reply #6 on: December 01, 2016, 10:41:57 am »
maybe they died... or cleared up and living healthy life and no more need to update

look around please their is clearly many posts about post tx symptoms

maybe in the correct section you would find more information "Post Treatment" and not the forum for people Currently on treatment.
5/1/17 UNDETECTED!

EOT Blood Testing 1/25/17
UNDETECTED!

Five week blood testing 12/8/16
DETECTED
Viral Load: 35(IU/mL)
AST: 34

Started Epclusa 10/2/16

Genotype 3a

9/19/16
Fibrosis: F2/3
ALT: 459
AST: 189
Viral Load: 6415894 (iU)/mL

Offline Karin

  • Member
  • Posts: 45
  • Hi Glad to meet all of you
Re: feel horrible 5 weeks post tx anyone else
« Reply #7 on: December 01, 2016, 10:50:25 am »
yes Andrew i know they are out there, a LOT of them. I am one of them,and we all have resorted to private messaging on this forum so that we can help each other with tips,experiences,ect... if we try to post about any of our issues we are shut down, made to feel less then, ect.... not sure if you have post tx bad ,life changing effects but if you do feel free to pm me ,i care and i have an ear and many more do we just are not to not speak about it on HEPMAG
genotype 1a
fibroscan f3
diagnosed April 2016
Began Harvoni July 19th 2016
4week blood test today Aug 16 2016
Negative for virus on 4 week check
finished Harvoni Oct 11tth 2016

Offline andrew90

  • Member
  • Posts: 71
Re: feel horrible 5 weeks post tx anyone else
« Reply #8 on: December 01, 2016, 11:18:58 am »
are you trying to say HEPMAG will close your post if your openly posting about your post TX issues? im lost and this is what it seams and i doubt that..
5/1/17 UNDETECTED!

EOT Blood Testing 1/25/17
UNDETECTED!

Five week blood testing 12/8/16
DETECTED
Viral Load: 35(IU/mL)
AST: 34

Started Epclusa 10/2/16

Genotype 3a

9/19/16
Fibrosis: F2/3
ALT: 459
AST: 189
Viral Load: 6415894 (iU)/mL

Offline Mike

  • Member
  • Posts: 999
Re: feel horrible 5 weeks post tx anyone else
« Reply #9 on: December 01, 2016, 05:06:21 pm »
This is an open forum. However, we do have several rules, which include no solicitation of members, no harassing or menacing of members and no threatening of members.

We understand that topics can be 'lively;' but we strive for civility as well.

We also strive to make sure medical information shared on this forum is based on science, medical research and clinical data - not speculation and conjecture.

We are a shared community and benefit collectively from each, individual member.

Best wishes, Mike

Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline andrew j

  • Member
  • Posts: 477
Re: feel horrible 5 weeks post tx anyone else
« Reply #10 on: December 01, 2016, 09:03:18 pm »
Hi Karin,

I think I might have been partly responsible for that other thread going pear-shaped - yesterday, was it?

I was trying to check with both you and Morab that everything that could be done, was being done.
It may have come across that I was suggesting that [one or other of] you guys should be doing more.
That wasn't my intention (of course).
My intention was (again), just to check that everything that can be done, is being done (?!) - and also to check - you know - that you guys are OK - or OK enough - today - and on a day-to day basis.

I hate to think of you suffering.

You sent me blessings, Karin.
I am now sending some back to you (and to Morab, of course - if you are there M).

We are dealing with intimate and personal things all the time here.
[Because of that], things are going to go wrong every once in a while.
We are only human, and we are all different.
It's amazing to me that things stay on an even keel as consistently as they do.
If a bit of bark flies once in a while - so what?!
It shows that we care.

Best regards, eh?
Andrew.
« Last Edit: December 02, 2016, 02:54:53 pm by andrew j »

Offline KimInTheForest

  • Member
  • Posts: 1,972
  • Believe in yourself
Re: feel horrible 5 weeks post tx anyone else
« Reply #11 on: December 01, 2016, 11:11:26 pm »
Hi Kim, i went to the page u left for me to see but the last post was from 2015. Were they not allowed to post anymore because they too were sick from Harvoni??? where did they go? Strange the sick people kinda disappear on this forum??????

Karin, that link I gave you that you went to was for the very start of a thread. It goes on for 500+ comments. Last post at this point in that thread is June 2016. It was never locked and could still be added to.

At the top (or bottom) of each page of comments, you have the option to continue to next page of comments if there is another page.

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 Karin

  • Member
  • Posts: 45
  • Hi Glad to meet all of you
Re: feel horrible 5 weeks post tx anyone else
« Reply #12 on: December 03, 2016, 01:44:16 am »
Andrew J, No problem, that was not your fault. You are a very kind and caring person on the boards glad you are here. Hope you are well :)

Kim, Ok i will go back and take a look. But still where did they go, if they stopped posting and were as sick as some of us are I hope they are ok????
genotype 1a
fibroscan f3
diagnosed April 2016
Began Harvoni July 19th 2016
4week blood test today Aug 16 2016
Negative for virus on 4 week check
finished Harvoni Oct 11tth 2016

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,543
  • Get tested, get treated, get cured, fight Hep c!
Re: feel horrible 5 weeks post tx anyone else
« Reply #13 on: December 03, 2016, 01:58:36 am »
Many folks have left ones with no problems as well. They just picked up with their lives and moved on to other things I expect.
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 Philadelphia

  • Global Moderator
  • Member
  • Posts: 1,157
  • It only looks like I know what I'm doing
Re: feel horrible 5 weeks post tx anyone else
« Reply #14 on: December 03, 2016, 02:07:52 am »
If I had to guess, I'd say that once cured people often leave the forum because it no longer has a significant use for them. They don't have HCV and they aren't doing treatment so they don't have as many questions.

I know of a large number of people who went through treatment when I did. One by one, they fell away as their "real life" took over. This was no longer their lived reality.

I stick around not because I'm sick (although of course with cirrhosis I do have significant health issues) but because I believe I have something of value to contribute.
CURED SVR24  Class of 2015
Wk 12 post EOT 30.11.15: ALT 14 AST 22 GGT 22 VL UND
Week 19 07.08.15: ALT 17 AST 23 GGT 25
Week 12 18.06.15: ALT 21 AST 23 GGT 28
Week 8 25.05.15: ALT 23 AST 27 GGT 30 VL UND
Week 4 20.04.14: ALT 30 AST 36 VL 40
Treatment start 23.03.15: ALT 137 AST 185 VL 342,600
Cirrhosis Child-Pugh A, Genotype 1a - Viekira Pak + riba 24 weeks
Total failure interferon/ribavirin/boceprovir Mar 2013
https://www.hepmag.com/blogger/grace-campbell

Offline Mugwump

  • Member
  • Posts: 778
  • My number of posts means nothing, piscor ergo sum!
Re: feel horrible 5 weeks post tx anyone else
« Reply #15 on: December 03, 2016, 02:33:01 am »
If I had to guess, I'd say that once cured people often leave the forum because it no longer has a significant use for them. They don't have HCV and they aren't doing treatment so they don't have as many questions.

I know of a large number of people who went through treatment when I did. One by one, they fell away as their "real life" took over. This was no longer their lived reality.

I stick around not because I'm sick (although of course with cirrhosis I do have significant health issues) but because I believe I have something of value to contribute.
Ditto on that Philly!
Karin I truly do not think that this forum censors or permits the castigation of some who post about their difficulties with treatment. I had some serious issues which thank heavens have subsided post treatment but it took many months to start to get my life back.
All throughout the journey this forum has been informative and accurate about what people are going through. Some have had a really rough time post treatment and this is not to be taken lightly. I certainly do not take the possible dangers of what HCV has done to my system over the years for granted or the fact that removing the disease with a strong drug might cause other issues.

We are all in the same boat and truly I believe that the people and the principles of this forum reflect a truthful and accurate attitude toward what people write about here not a careless attitude toward the pain and troubles some who have had a rough time with treatment are going through.

I can fully understand how this topic can become difficult for some and truly hope that you achieve a healthy resolution to your problems post treatment.

In kinship having once had HCV and still having problems post treatment. I still have an enlarged liver that grumbles and causes abdominal discomfort, occasional problems with digestion, no doubt some other effects like muscle fatigue and above all marked biliousness.

So to humor myself I just consider myself to be a bilious old curmudgeon and except this as part of dealing with the debilitating effects of HCV caused liver disease for far too many years.

We can only hope that some other unexpected thing does not happen to us post treatment and trust that todays medicine can catch and treat it in time if serious.

All the best in healing post treatment and a happier healthier life for all post treatment.

Eric
« Last Edit: December 03, 2016, 02:39:30 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!

 


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