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Author Topic: Just finished treatment and symptoms seem worse  (Read 10947 times)

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Offline Kristi R

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Just finished treatment and symptoms seem worse
« on: January 07, 2017, 06:34:11 pm »
My husband just finished Harvoni a month ago. His side effects seem to be getting worse. Bloating , gas, full feeling when eats very little, irritability, no appetite, etc. All bloody work and liver sonograms seem to be fine. Anyone else feel like when you eat you are full after only two bites?  Help!

Offline lporterrn

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Re: Just finished treatment and symptoms seem worse
« Reply #1 on: January 07, 2017, 08:56:45 pm »
Did he have cirrhosis prior to Harvoni? Has he had an upper endoscopy?
« Last Edit: January 07, 2017, 09:46:55 pm by lporterrn »
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline Kristi R

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Re: Just finished treatment and symptoms seem worse
« Reply #2 on: January 08, 2017, 12:30:01 am »
No, he did not. He was perfectly fine. No symptoms at all. My first post should have read "blood" not "bloody."

The Harvoni has changed him completely. Mood, energy level, and appetite has all gotten worse.

Offline Lynn K

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Re: Just finished treatment and symptoms seem worse
« Reply #3 on: January 08, 2017, 01:18:48 am »
Have you discussed these symptoms with his doctor?
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 Kristi R

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Re: Just finished treatment and symptoms seem worse
« Reply #4 on: January 08, 2017, 09:57:00 am »
Yes, we have discussed with nurse and doctor. That is why they ordered the sonogram and it was normal. They put him on Prevacid. All bloodwork is normal as well. We don't want anything to be wrong, of course, but the symptoms are real. I am curious to know if anyone else had these symptoms post treatment with clear tests results.

Offline Lynn K

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Re: Just finished treatment and symptoms seem worse
« Reply #5 on: January 08, 2017, 10:02:16 am »
Just wondering what kind of diagnostic testing has been done so far.

Have they considered an upper GI where you drink some barium and they take x rays or an upper endoscopy where they give the patient a sedative and use a slender cable with a camera attached look inside the stomach?
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 Kristi R

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Re: Just finished treatment and symptoms seem worse
« Reply #6 on: January 08, 2017, 10:12:48 am »
We will ask

Offline andrew j

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Re: Just finished treatment and symptoms seem worse
« Reply #7 on: January 08, 2017, 08:46:08 pm »
... In answer to your question, Kristi - the answer is Yes.

Others have reported adverse reactions to Harvoni - both during, and after treatment.

Perhaps some of those folks will chime in soon.

Offline Lynn K

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Re: Just finished treatment and symptoms seem worse
« Reply #8 on: January 08, 2017, 09:16:22 pm »
I am just thinking some sort of gastrointestinal problem maybe.

I don't recall anyone reporting symptoms of feeling bloated and not wanting to eat but I could surely be mistaken having not read every single post here.

Did he have any stomach problems before treatment, did these problems start on treatment or did they start after he finished?

If I had a lot of gas and bloated stomach I likely would not want to eat much as the bloated stomach would make me feel full. All that in mind with feeling badly from stomach problems it would have me feeling irritable with all the symptoms you described happening. I hope his medical team can determine the reason for his discomfort what ever the cause and can help him to feel better.
« Last Edit: January 08, 2017, 09:20:13 pm by Lynn K »
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 lporterrn

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    • LucindaPorterRN
Re: Just finished treatment and symptoms seem worse
« Reply #9 on: January 09, 2017, 10:13:44 am »
The Prevacid is a really good place to start and if it works, will save a lot of unnecessary testing. Perhaps reinforce the healing process by learning a bit more about GERD. The piece that many people don't tend to follow is not to eat anything 3 to 4 hours before going to bed (or lying down). This makes a huge difference. I can't even eat a piece a fruit or something small without paying for it. For me, it wasn't the medication but being over 60 that sent me down that road...
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline Lynn K

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Re: Just finished treatment and symptoms seem worse
« Reply #10 on: January 09, 2017, 12:28:38 pm »
I also have GERD due to a hiatal hernia. That was how I was diagnosed with an upper GI. I get upper endoscopies every year because of my cirrhosis but that can be another way to diagnose GERD and see how much damage has happened to the esophagus from acid in the throat.

But all this is best determined by his doctor to determine the best way to diagnose and treat what is going on.

Best of luck
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 Kristi R

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Re: Just finished treatment and symptoms seem worse
« Reply #11 on: January 09, 2017, 12:45:20 pm »
Thanks everyone! We appreciate your advice! Prayers for all who have to endure health issues. God bless

Offline steven_myers

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Re: Just finished treatment and symptoms seem worse
« Reply #12 on: January 16, 2017, 12:49:07 pm »
I believe pushing water is important even after treatment ends. It helps rid the body of toxins and should help eliminate the lingering side effects.

Offline Jorah

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Re: Just finished treatment and symptoms seem worse
« Reply #13 on: March 30, 2017, 08:21:24 pm »
I believe pushing water is important even after treatment ends. It helps rid the body of toxins and should help eliminate the lingering side effects.

What does water do that they recommend so much of it during treatment?

Offline lporterrn

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Re: Just finished treatment and symptoms seem worse
« Reply #14 on: March 30, 2017, 10:09:01 pm »
We have no idea but so many people (including me) find that it makes a significant difference.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline Jorah

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Re: Just finished treatment and symptoms seem worse
« Reply #15 on: March 31, 2017, 08:48:47 am »
We have no idea but so many people (including me) find that it makes a significant difference.

Ok  :)...could it be possible that with all that water ...we're urinating out a lot of the medication and feeling better because we have less of it in us? Just theorizing.... :)

Offline lporterrn

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Re: Just finished treatment and symptoms seem worse
« Reply #16 on: March 31, 2017, 11:56:29 am »
Actually, I thought it was because all the bathroom trips turned urinating into an aerobic activity.  ;D
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline Jorah

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Re: Just finished treatment and symptoms seem worse
« Reply #17 on: March 31, 2017, 03:42:47 pm »
Actually, I thought it was because all the bathroom trips turned urinating into an aerobic activity.  ;D

LOL, I hope I could do some aerobics once I get started on Ep. We know the washroom ones are going to happen for sure....   :)

Offline Lynn K

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Re: Just finished treatment and symptoms seem worse
« Reply #18 on: March 31, 2017, 07:30:34 pm »
Actually, I thought it was because all the bathroom trips turned urinating into an aerobic activity.  ;D

Lol :)

I just think it is drinking the amount of water we should normally be drinking anyway
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 Llorona

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Re: Just finished treatment and symptoms seem worse
« Reply #19 on: August 10, 2017, 07:40:50 pm »
I know this thread is a couple of months old, but I thought I'd chime in.
Drinking twelve  8oz glasses of water, as well as eating a vegan diet, has seemed to keep side effects completely at bay for me.
I had some major gastrointestinal stuff going on for several years. About four times a year, I would get the most extreme stomach pain, followed by about 24 hours of vomiting and diarrhea. Looking back, I really do believe that this was caused by my Hep C (the liver and gal bladder work in conjunction with each other to break down fatty oils).
I have since stopped cooking with canola oil or eating anything naturally high in oil (raw pumpkin seeds are a huge trigger for me). I haven't had an attack since.
I am now vegan (no animal products at all) and I drink about 100 oz of water a day.
This may seem extreme, but it is totally doable.
Prior to going vegan, my favorite foods were steak and my favorite dessert was full fat ice cream. I also drank whole milk daily. I live in Texas where beef is pretty much a staple food.
Maybe have him start small? Try cutting out dairy (Dairy is really bad for us and hard to digest. We're not meant to consume milk that is made for a calf that will grow into a 3 ton cow).
My father used to have really bad acid reflux (He is 64). Since cutting out dairy and eating (mostly) vegan, he has had no issues. And he's a big ol beef loving Texas guy, so I have faith that if he can do it, anyone can.
Have your husband start by cutting out the dairy and making sure to drink LOTS of water everyday (if it gets annoying, just squeeze some lime in the water and that will help make it less boring).
From there, if he still feels bad, he should definitely try being a vegetarian for a while.
If he still feels bad, cut out all animal products completely.
Good luck!
« Last Edit: August 10, 2017, 07:42:48 pm by Llorona »

Offline Gaj

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Re: Just finished treatment and symptoms seem worse
« Reply #20 on: August 11, 2017, 11:05:54 pm »
Lol :)

I just think it is drinking the amount of water we should normally be drinking anyway

This is very true, a large part of the population (see link) are often dehydrated for various reasons that include only drinking at certain times such as meals, midmorning breaks, etc. or only when they feel thirsty by which time their fluid levels are already too low.

http://www.medicaldaily.com/75-americans-may-suffer-chronic-dehydration-according-doctors-247393

Male - 61 years
Genotype 3a (since 1978?)
Diagnosed 2012
Treated 2013 PEG/Riba/Dac (Relapsed)
F4 - HCC#1 Resected 06/15 - #2 RFAblated 11/15
11/18/15 Commenced Generic Tx - Sof/Dac/Riba (24wks)
Pre Tx = ALT: 270  AST: 209  ALB: 31
05/05/16 = ALT: 34  AST: 32  ALB: 40  VL: Undetected (EOT)
06/16/16 = Relapsed
06/23/16 = ALT: 92  AST: 59  ALB: 40  VL: 290,770
01/12/17 3rd Tx - Zepatier + Sofosbuvir (16wks)
05/03/17 EOT und
06/22/17 SVR7 und
07/27/17 SVR12 UND!
10/26/17 SVR24 UND & Cured!!!

Offline Lynn K

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Re: Just finished treatment and symptoms seem worse
« Reply #21 on: August 12, 2017, 02:12:04 am »
Yep basically I am probably always dehydrated. I drink 1 medium coffee in the am and a glass of water and an ice tea with dinner basically is my fluid intake daily maybe a sip of two from the water fountain. That's about it.
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 andrew j

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Re: Just finished treatment and symptoms seem worse
« Reply #22 on: August 12, 2017, 07:58:19 pm »
I used to drink hardly any water, like you, Lynn - but that was a long time ago ... before I had Hep C.
Drinking a lot of water seemed to help with the symptoms (which in my case were bad) ...
I guess there was a lot of toxicity action going on in my liver.

I still seem to want to drink a lot of water now, though.
I don't know - maybe 3 litres or so a day?
It seems to help keep things smoothing along.
The water is nice where I live, too. I think that helps.

I don't seem to be able to manage vegetarian or vegan diets, though.
I can't seem to get the balance right.

Since finishing Tx I want to eat more and more animal protein.
It's still not much in real terms, and mostly consists of [esp. oily] fish - but without some form of animal protein, things rapidly become unmanageable.
I find myself obsessing about food all the time, and eating huge amounts - presumably to try to get the protein I need.

Maybe my body needs animal protein for healing at the moment?

... But the vegetarian thing is good, I think - if you can do it.

P.S. I just noticed that you're clear, Gaj!
Man - that's fantastic news!!

Offline jester

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Re: Just finished treatment and symptoms seem worse
« Reply #23 on: August 21, 2017, 03:48:01 pm »
Drugs always have side effects. I'm not one to believe that reducing stomach acid with proton pump inhibitors such as Prevacid is normally a good idea, since proper digestion requires stomach acid. Without sufficient acid you will have bloating, and indigestion as well as lack of proper nutrient absorption, which will bring more problems of its own such as pernicious anemia and osteoporosis to name two. Stomach acid also acts like a buffer to kill pathogens such as bacteria and parasites that you may ingest. In case of acid reflux due to hiatal hernia don't overeat or eat close to bedtime. I also had severe stomach pain on and off as you described, as well as feeling of fullness when eating, indigestion etc. I addressed this problem by taking a protease enzyme (Natto kinase) with my meals and with it three teaspoons or more of apple cider vinegar or a tablet of Betaine Hydrochloride to increase stomach acid. In between meals, I take raw cabbage off and on as it's high in glutamine which in case you have ulcers, promotes fast healing, not only of the stomach but also of the entire gastrointestinal tract. So cabbage and especially cabbage juice are good for such as Crohn's and colitis.
Back to the protease Natto kinase. Any protein dissolving enzyme such as Natto kinase and many herbs, have a blood thinning effect, so you have to be careful if on  prescription blood thinners such as warfarin (coumadin) or the newer types for which there isn't even an antidote in case of bleeding as I understand.  Jester
« Last Edit: August 22, 2017, 04:24:17 pm by jester »

Offline jester

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Re: Just finished treatment and symptoms seem worse
« Reply #24 on: August 22, 2017, 12:11:51 pm »
Llorona,
Jester here, I would be careful going vegan. It has its good points, but you will be missing out on some important nutrients that come from animal products alone. One that comes to mind is vitamin B12, which is needed for making red blood cells, brain health and absorption of folic acid. There are many other nutrients that you will be doing without as a vegan. Check it out.       Jester
« Last Edit: August 22, 2017, 04:13:24 pm by jester »

 


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