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TOPIC: SVR but still not feeling right?

SVR but still not feeling right? 3 years 9 months ago #11789

  • dointime
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I'm not SVR yet but here's what's concerning me as I look forward to getting there.

There are many people like me who hope that when their hepC is cured their other unexplained symptoms will go away too, but that doesn't always happen. There's a tendency, especially in people like me who have been warehoused for years, to put all their hope in getting to SVR and being miraculously rejuvenated. Sometimes that happens but sometimes it doesn't.

It seems to me that there's a gap in the medical knowledge and care available to people who are post hepC but still not OK. Where can they then turn? What now? I'm almost certain that my hepC specialist will say to me at SVR - job done then, goodbye. That would be about the same as other specialists have said to me when I went to get certain symptoms investigated and it turned out that I didn't have the thing they specialized in. This includes a naturopathic doctor that I went to in desperation but to no avail. To a hammer, everything looks like a nail, (or not a nail). My GP singularly failed to find my hepC or anything else that might explain my various symptoms, so no good going back there. Now while I am glad that no horrendous and easily diagnosed medical conditions were found, it still leaves me with the 'what now' question.

So I think that there needs to be far more information and resources available to people who are post tx with the DAAs and/or interferon. Firstly I want to know what I can reasonably expect to happen during recovery post tx, as opposed to what might need medical follow up, ie. how long is it reasonable to still feel like crap? Next I want to know where I can get said medical follow up that's not my GP or the specialists, but somebody who has the ability to take a broad overview of my current health issues and also understand the implications of my history of hepC and the meds that I have taken to get rid of it. I don't have anything against going to a specialist for treatment if I am already fairly sure what is wrong, but I don't want to be bounced around from one to the other on spec. because nobody is taking into account the whole picture to get a proper diagnosis.

So how about it Doc Freeman? An international post tx service for people who are SVR but with persistent symptoms which are still unexplained. I can get blood tests, prescriptions and treatment in my own country. What I can't seem to get is a competent approach to diagnosis.

dt
Last Edit: 3 years 9 months ago by dointime.
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SVR but still not feeling right? 3 years 9 months ago #11790

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Good Points.
I think this is one area where the old adage "time will tell" is right on the money. The old tx caused so much damage its hard to tell where the lingering effects of HCV ended and the tx after effects began. As more and more people "come on line" as SVR after tx with the DAAs, the picture should begin to clear, hopefully. These drugs were fast tracked and we are all participants in a huge clinical trial. Maybe FHC's future lies in post tx monitoring and evidence collection as well as the complete eradication of HCV.
M
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G 1a F-1
Started tx 10/23/15 (Meso sof & led) ALT 48 AST 28 v/l 1.6 mil
11/17/15 4 wk lab ALT 17 AST 16 <15
11/18/15 Started Harvoni
12/16/15 8 wk lab ALT: 15 AST: 13 V/l UND
1/14/16 Fin. Tx
7/07/16 UND SVR 24
Last Edit: 3 years 9 months ago by mgalbrai.
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SVR but still not feeling right? 3 years 9 months ago #11791

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I'm not just concerned about the damage caused by the tx drugs or the hepC itself. I'm concerned to TELL THE DIFFERENCE. I think there's a tendency for people with hepC to assume that all their ills are rooted in having the virus. That might not be the case. But the rational goes that you need to eliminate the virus before you will know for sure. So fine, you eliminate the virus and you find out for sure that all your ills have not gone away with it. So you are left asking:

1.
Are my remaining symptoms a result of the various drugs that I took?
2.
Did the hepC itself set off some cascade of imbalances in my body that are not self-correcting now that the virus has gone?
(But might still be corrected with medical intervention if diagnosed.)
3.
Are my symptoms unrelated to hepC at all, but have been mistakenly attributed to hepC?

Of course, ultimately it doesn't matter how it came about so long as there's an accurate diagnosis and treatment. I just have the feeling that many of the mistakes made in diagnosis are because of wrong assumptions to start with. For example, if you are looking for something hepC or meds related you might not consider looking for coeliac disease or other conditions which might have been there all your life but gone undiagnosed. So I really think a big picture view is necessary, as well as a hepC specialist view. The trouble is, not many doctors have the breadth of skills to do that.

dt
Last Edit: 3 years 9 months ago by dointime.
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SVR but still not feeling right? 3 years 9 months ago #11792

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And then, you have the "age" factor. The last time I was "normal", was almost three decades ago. So, on a personal level, tracking and identifying HCV, HCV tx and age-related symptoms, both physical and emotional, is going to be a "work in progress".
M
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G 1a F-1
Started tx 10/23/15 (Meso sof & led) ALT 48 AST 28 v/l 1.6 mil
11/17/15 4 wk lab ALT 17 AST 16 <15
11/18/15 Started Harvoni
12/16/15 8 wk lab ALT: 15 AST: 13 V/l UND
1/14/16 Fin. Tx
7/07/16 UND SVR 24
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SVR but still not feeling right? 3 years 9 months ago #11793

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And then, you have the "age" factor.
Absolutely right M.

But see, I'm getting this quiet but insistent voice in my head which is saying:
"but what if the hepC and your advancing age are just red herrings?" -
and all they've done for the last several years is distract you from finding out what is really up with you?

Many people go on fit as a fiddle to a ripe old age.
Many people recover from hepC and never look back.
Why not me?
(if indeed that is how it goes for me. At the moment the jury is still out on that one.)

dt
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SVR but still not feeling right? 3 years 9 months ago #11794

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I have no answers.
If I were a researcher wanting something worthwhile to research, I might try to locate a bunch of identical twins, one of whom was a long-time HCV sufferer who achieved SVR using DAAs. Now, there is a bone with some meat on it....
M
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G 1a F-1
Started tx 10/23/15 (Meso sof & led) ALT 48 AST 28 v/l 1.6 mil
11/17/15 4 wk lab ALT 17 AST 16 <15
11/18/15 Started Harvoni
12/16/15 8 wk lab ALT: 15 AST: 13 V/l UND
1/14/16 Fin. Tx
7/07/16 UND SVR 24
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SVR but still not feeling right? 3 years 9 months ago #11795

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I have no answers.
I have no answers either M.

But I'm thinking that it's time the questions were asked and ways of getting the answers might be thought about. For myself I will have to wait and see what my outcome is down the line. Irrespective of that, the issue of post hepC unexplained symptoms is not going away any time soon. For sure there will be people to whom it applies.

So if PlanA is to get rid of the virus and all will be rosy in the garden - but that doesn't work - then a PlanB is needed. At the moment I don't see any PlanB out there and I'd feel a whole lot better if I did,

dt
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SVR but still not feeling right? 3 years 9 months ago #11796

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Hi there,
I don't know how bad your liver damage is, but if you are not F0 than your liver will have to heal as well as it can. I am no expert but anything that is damaged and has to heal isn't necessarily a pleasant process. Thinking of burns, broken bones, recovering from surgery etc. Maybe time to stop thinking about hep c symptoms and start looking up liver disease symptoms?
HCV 35 yrs G1a F3 Tx naive
started Lesovir-C 15/12/2015
pre tx: VL 5,250,000 ALT 374 AST 208
FIBROSCORE 10.4

4 weeks tx ALT 29/ AST 33. VL < 12 UI/mL
8 weeks tx ALT 29/ AST 34. VL UND
4 weeks after tx UND. SVR4. ALT 24/AST 18
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SVR but still not feeling right? 3 years 9 months ago #11812

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I think this is an important topic to explore. I've noticed on the Facebook page, a lot of post treatment people who didn't have fibrosis getting quite unpleasant symptoms a month or so after finishing...its very perplexing. In spite of the fact these meds have few sides, maybe they still have significant effects on the body. Maybe there are things we can do to mitigate them.
As for the intelligent overview, DIY has been the only way to get that over the years for me. Not that it was super intelligent, but seemingly better than any of my assorted medical practitioners could manage. We live in a toxic, stressful world and self protection is mandatory. Being aware of the virus in my system for twenty five years has made me keen to investigate all options for self care. Honestly I think what has saved my liver and my sanity, above all things is an hour of Qi Gong by a creek every morning for almost twenty years now. Qi Gong is a kind of meditative Chinese yoga, and I noticed almost straight away that my excessive levels of anger (no doubt liver inflammation) disappeared soon after I started it.
F49HepC25ysGT1a
"mild"
Harvoni 12 wks
Brisbane, Australia
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SVR but still not feeling right? 3 years 9 months ago #11813

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dointime wrote:
I'm not just concerned about the damage caused by the tx drugs or the hepC itself. I'm concerned to TELL THE DIFFERENCE. I think there's a tendency for people with hepC to assume that all their ills are rooted in having the virus. That might not be the case. But the rational goes that you need to eliminate the virus before you will know for sure. So fine, you eliminate the virus and you find out for sure that all your ills have not gone away with it. So you are left asking:

1.
Are my remaining symptoms a result of the various drugs that I took?
2.
Did the hepC itself set off some cascade of imbalances in my body that are not self-correcting now that the virus has gone?
(But might still be corrected with medical intervention if diagnosed.)
3.
Are my symptoms unrelated to hepC at all, but have been mistakenly attributed to hepC?

Of course, ultimately it doesn't matter how it came about so long as there's an accurate diagnosis and treatment. I just have the feeling that many of the mistakes made in diagnosis are because of wrong assumptions to start with. For example, if you are looking for something hepC or meds related you might not consider looking for coeliac disease or other conditions which might have been there all your life but gone undiagnosed. So I really think a big picture view is necessary, as well as a hepC specialist view. The trouble is, not many doctors have the breadth of skills to do that.

dt

Hi dt
I can vouch that peginf riba has permanently damaged my hearing and many nerves plus left me intolerant to many food
I also have PTSD and anxiety diagnosed from peginf and have learned to deal with the ongoing issues
I was affected deep into my bones resulting in OxyContin therapy which I quit prior to stsrting the DAAs
I don't know if the current sleepless nights at almost week 8 on sofled due to vile belchy nausea are part of the peginf legacy or that the sofled is now really toxifying my little frame
But I am up all night belching and in gastro discomfort and look forward to EOT
There are many questions to be answered
I have granuloma severe and am hopeful it will continue to subside thus preventing the predisolone which was the standard treatment for same. I hate taking a pill to fix any symptom or hcv or tx legacy. You raise a great conversation here.
As all our livers, kidneys and bloods are in different states as all our tx experiences are so varied it's a huge area which definitely needs research.
I'm following this thread Thankyou dt
Ariel x
Gen 1a
Peg/inf/riba 2012(!) stop @ Wk 43 potassium low +issues (rlps week 4 post tx, VL120,000) scnds eg. adenomas.
pre sof/led VL 240,000 Fibsc F0
Day 25 <30
Day 32 UND
Week 10 UND
EOT UND ALT11AST17GGT19
SVR4 UND ALT10 AST16 GGT13
SVR8 UND ALT <9 AST16 GGT15
SVR12 UND ALT14 AST19 GGT12 Bili 5
EOT +18 ALT13 AST20 GGT9 Bili 5
EOT +21 ALT11AST15
Cured SVR12
Dysplasia Adenomas RemvdAug '16
SVR24 UND ALT11AST16
ColonoscopyClear Nov17
LumpectomyClear ‘18
LithotripsyCytoscopyBiopsy 4/18
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SVR but still not feeling right? 3 years 9 months ago #11816

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While not wanting to detract from an important discussion, I think we need to be careful how we define some of these issues. Many (most?) people who treat and achieve SVR will just want to forget about their past illness and move on with their new life, never to post again. That is their right and entitlement but it does mean that those few who do have problems post treatment will appear to represent a larger proportion than they actually do. Also, a month post treatment is probably not really representative of final outcomes for SVR as with most illnesses and injuries we expect a post recovery period when while no longer actually ill we are still not back to our former selves. Given that most of us have had HCV for several decades, my own thought is that it likely to take months or even years for some to fully recuperate. And as Mike points out, we have aged since we aquired this virus so can no longer expect to feel like in our teens.

Having said that I also believe we all need to be mindful of our health going forward and have follow ups as necessary taking into account our HCV medical history particularly if we had high fibrosis/cirrhosis. And if we have health issues that don't correlate with our peers in the general population then we should investigate those as and when they occur.

edit: Ariel's post above reminds me that those who had unpleasant experiences with interferon need to be particularly mindful of follow ups in the future.
G3a since '78 - Dx '12 - F4 (2xHCC)
24wk Tx - PEG/Riba/Dac 2013 relapsed
24wk Tx - Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx - 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 - 22/06/17 UND
SRV12 - 27/07/17 UND
SVR24 - 26/10/17 UND
:cheer: :cheer: :cheer:
Last Edit: 3 years 9 months ago by Gaj.
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SVR but still not feeling right? 3 years 9 months ago #11818

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Hear Hear Gaj
Yup
I am so with you on this
That's why I made it clear my main issues are peginf related no not these minor DAA sx like an upset gut or a headache or sinus etc
Actually
Since my UND I now view my tablet as a lolly not a tablet its a psychological trick I am using
You make a darned good point
I'm all for getting on with life too
And yes Mike my knees are where the nerve damage is already and these DAAs are a biatch on my knees

Splashes
Ariel :+1: :+1:
Gen 1a
Peg/inf/riba 2012(!) stop @ Wk 43 potassium low +issues (rlps week 4 post tx, VL120,000) scnds eg. adenomas.
pre sof/led VL 240,000 Fibsc F0
Day 25 <30
Day 32 UND
Week 10 UND
EOT UND ALT11AST17GGT19
SVR4 UND ALT10 AST16 GGT13
SVR8 UND ALT <9 AST16 GGT15
SVR12 UND ALT14 AST19 GGT12 Bili 5
EOT +18 ALT13 AST20 GGT9 Bili 5
EOT +21 ALT11AST15
Cured SVR12
Dysplasia Adenomas RemvdAug '16
SVR24 UND ALT11AST16
ColonoscopyClear Nov17
LumpectomyClear ‘18
LithotripsyCytoscopyBiopsy 4/18
Last Edit: 3 years 4 months ago by Ariel.
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SVR but still not feeling right? 3 years 9 months ago #11819

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See, that is how crazy this liver crap is! Six months before my diagnosis, I suddenly came down with exactly what Ariel is describing: horrible, bloating, hiccups with dry heaves with only this white, tasteless foam as a result from the toilet hugging. Lost 50 lbs. in 12 months. I mean, I had a "cast iron" stomach-until that night. In fact, that sudden onset and chronic inability to properly ingest and digest even the blandest foods led to my HCV diagnosis.
All of that ended two weeks into tx. So it wasn't stress from knowing I had HCV that caused it. Since it disappeared about the time the virus did, I can only conclude the two are related somehow.
Weird.
M
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G 1a F-1
Started tx 10/23/15 (Meso sof & led) ALT 48 AST 28 v/l 1.6 mil
11/17/15 4 wk lab ALT 17 AST 16 <15
11/18/15 Started Harvoni
12/16/15 8 wk lab ALT: 15 AST: 13 V/l UND
1/14/16 Fin. Tx
7/07/16 UND SVR 24
Last Edit: 3 years 9 months ago by mgalbrai.
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SVR but still not feeling right? 3 years 9 months ago #11831

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Can relate here too Mike. The number of abdominal ultrasounds I had trying to find the possible cause for my significant stomach pain, the bloating etc. And I lost about 7kg in as many months....you know its noticeable when doctors receptionists point it out to a packed waiting room lol

3 weeks into tx and I had stopped losing weight and my face lost its haggard-drawn out look. And no more crippling addominal pain either.


That said you are right on the money that after decades of battling the virus we cannot expect to rebound into feeling as we might have when we were young (and hey, my memory of that is tenuous at best anyway :P )
GT1a since 1988, diagnosed 1990
F0, tx naive
VL 262,000 ALT 40 AST 26 GGT 13 Fibroscan 04/12/15 - 2.9
Started Mesochem sof/dac 12 weeks 01/01/2016
11/02/2016 - 6 weeks UNDETECTED
AST 26
ALT 26
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SVR but still not feeling right? 3 years 9 months ago #12057

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Agree with everyone here, good thread DT :+1:

I haven't wanted to put too much stock into my HCV-free self. I'm trying to be realistic with a shade or 2 of optimism! The last couple of years have been 'frightening' for me regarding a rapid progression of certain conditions and a show of new symptoms. All the endless tests, scans and medicos I've seen but no real answer - things either lumped together as 'polyarthritis' and its varying effects or dismissed as 'age-related.'
OMG! Even the scary fluoro orange explosive diarrhoea - my toilet bowl wearing a safety vest :P - that would last 5 days p/m - still told 'nothing to do with your HepC!' (BTW this hasn't occurred since Tx)

Actually it's been interesting that NO-ONE I saw thought anything was related to HCV (including the Gastro Specialists), it was only when I came on here and did some research, spoke to Dr James etc and discovered many off these symptoms/conditions I have are related to HCV.

As DT says, I look forward to months down the track when I've completed Tx and have hopefully sustained SVR and see what has changed and what I'm left with. Afterall, isn't it possible to have some permanent damage to our bodies from decades of constant viral attack, constant inflammatory response? Maybe, my joints are too damaged and my nervous system is too because given our age now (those of us who've had it for decades) our bodies just don't bounce back and repair themselves as well as they did even 10 yrs ago. Hell, for me it's even 3 yrs ago!

So far, on Tx, I'm ending week 7, the only improvement (other than the orange thing) has been the absence of my usual persistent daily low-grade anxiety and agitation. I won't know of this is actually a lucky side effect until after EOT. The energy I had in the 1st month has gone, so I'm back to dragging myself around every day to get things done. Acute anxiety attacks still happen and everything else is there with days of exacerbation.

It really is still a 'WAITING GAME' :(
QLD Australia ☀️
G3a HCV 35 yrs Tx naive
Started Sof/Dac 13/01/16

Dec '15
AST 70
ALT 89
GGT 124
Fibroscore 8.5
F1-F2
13 Feb'16 VL UND #woohoo!
AST 24
ALT 26
GGT 50H
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