Psychoemotional ups and downs. Their associations with hepc

[rightsaidfred]

Hello everyone,
This is a sort of meditation on the psychological aspects of hepc. As we all know there’s a strong association between hepc and anxiety/depression. Now why is that and what does it mean for us? What impact, if any, does treatment have on this? If it does, how do we distinguish the positive feelings we have at a hopeful result from a remission in our hepc and the consequent reduction in anxiety or depression?
I am warning you here that this gets worse: Quite often I read someone’s post about their symptoms and find myself thinking that what they describe could all be attributed to anxiety, which turns up as physical symptoms very often. Depression does too. Very often people go to see their GPs complaining of physical symptoms such as palpitations, sweating, headache, joint pain, chest pain, back pain, diarrhoea, constipation etc. And after tests are told that physically they are alright but are, you’ve guessed it, anxious/depressed.
I had better declare a personal interest here. For much of my adult life I have intermittently suffered from a/d and for nearly all of it I have had hepc. I can’t help wondering what the relationship has been between the two, and what life may have been like if the virus hadn’t infected me. The next period will be very interesting, obviously.
Before anyone is tempted to be dismissive about all this and say that all that matters is to treat the virus and then take up the business of living healthily again, I want to have my tuppenceworth: I take it as a given that the first issue is to slay the dragon but this forum is almost as valuable for providing emotional support as it is for factual information. This may involve negotiating our own psychoemotional issues and everyone else’s…….
So I feel disinclined to be apologetic and shall be really interested to hear what you have to say.
And if you ignore this I am going to have a fit and wonder if you’ve all seen through me and realised what a worthless individual I really am and then I’m going to be sick!!!
RSF

---

G3a. Probably infected 40 years ago.
Diagnosed July 2015
7/7/2015: ALP 69, ALT 209, WBC 5.8, VL 40,000. Fibroscan 9.5 Kpa.
Commenced treatment Sof/Dac (Natco Pharma) 24 wks in Feb 16
VL UND @ 4 wks, 12 wks

EOT 6/7/16
SVR 12
SVR 24

PHEW! Thank you so much Dr James, Monkmeds and all at Fixhepc

[Greedfighter]

I guess I have a related response to this; I am finding that since being cured I am drinking more. I was sick for over 30 years and though I never had significant liver damage, I was run down and tired much of the time.

I am now finding the increased energy and alertness overwhelming. I don’t drink every day, but now more than I used to, in order to calm down. I was sick for more than half my life

[splitdog]

Me, too. To the future! illy:' />

---

splitdog@roadrunner.com

Genotype 3
VL 4,100,000
ALT 101 AST 71
Treatment Naive
Started Sof/Dac Jan 12, 2016
VL= <15 4 weeks in. AST/ALT normal.
VL=UNDETECTED 8 weeks in.
SVR4= Virus back. 3,300,000

Started generic Epclusa Sep. 23, 2017

4 weeks in <15 *Detected.
12 weeks in <15 *Not Detected.
16 weeks in <15 *Not Detected.
Finished 24 weeks treatment 3-17-18
SVR5 <15 Not Detected.
SVR 20 <15 Not Detected.
SVR 44 <15 Not Detected.

Thank you Jesus.
Thank you Dr. James

[LondonGirl]

As we all know there’s a strong association between hepc and anxiety/depression. Now why is that and what does it mean for us? What impact, if any, does treatment have on this? If it does, how do we distinguish the positive feelings we have at a hopeful result from a remission in our hepc and the consequent reduction in anxiety or depression?

This is such a good post RSF.

I have no doubt at all that HepC brings heightened anxiety and /or depression. I also feel that it’s rather overlooked by many in the medical profession, especially in the UK as they only deal with ‘one part at a time’ and not the whole picture. (Remembering the consultant who told me the portal vein had nothing to do with the liver and to contact my GP and my GP who said my joint pain had noting to do with the virus etc etc )

I used to become extremely anxious before treatment, sometimes about the strangest things like booking a ticket, making arrangements or especially filling in an important form. It is hardly surprising that those who were still being offered the Interferon /Riba tx and those GT1s who had to add the dreaded Boc/Telap (Uggg) as the only option, with such low cure rates not so long ago, were anxious and depressed ! The NHS level of care was pretty bad too and even when the new medicines arrived the response of many NHS consultants was more times than not, less than supportive (polite version).

Having said that, I believe the virus itself also causes anxiety and depression. Now SVR24, I still have bouts of anxiety, over any stresses in life, maybe having had them for so long, it takes a while mind and spirit to also repair? but they are much less often and not so bad any more.

I must thank Dr Debasis from Monkmed, who has a rather more holistic view and who used to call me and manage to calm me down and inspire confidence, hope, and didn’t ‘poo poo’ my ideas, this was definitely good medicine in itself.

When people say “It’s all in your mind” dismissively it kind of bugs me somewhat, as surely, the mind rules all?

and find myself thinking that what they describe could all be attributed to anxiety, which turns up as physical symptoms very often

I have no doubts about this. Anxiety causes physical tension which will spread to other parts, it makes perfect sense to me. I believe it can cause actual physical problems that become real co-morbidities..

For much of my adult life I have intermittently suffered from a/d and for nearly all of it I have had hepc. I can’t help wondering what the relationship has been between the two, and what life may have been like if the virus hadn’t infected me.

I believe it has very possibly played a large part in your a/d RSF – I also think our minds and bodies have very likely ‘got used’ to this reaction to stress and it will take some time to improve, but I do think it will improve. I guess the longer you have had the virus, the longer the memory will take to repair? but with the acknowledgement of this possibility, that time could well be shortened .

LG

---

GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 ‘In the slow lane’
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC

[Greedfighter]

Splitdog and Gaj, you will be cured, just a matter of time. You have Dr. Freeman helping you! I recommend Yard’s Thomas Jefferson Ale to calm down. Seems to have a low sugar content combined with a high ABC (8.0%), That’s what I drink illy:' /> Stick with Dr. Freeman for the cure! I’m just posting this for the newbies…..I know that you both know that Dr. Freeman is a Saint. If he is never recognized for his efforts ( which I believe he will be, eventually for a Pulitzer prize or something equivalent ) there is still the God Karma which will recognize him, if she has not already.

[rightsaidfred]

Hi Greedfighter,

Thanks for your post. I think you may have intended it for another thread as this one is primarily about anxiety and depression related to hepc but hope you will continue to enjoy Yard’s Thomas Jefferson Ale for many years to come.

Hi also to LG,

Glad you liked that. I think the issue I have identified is really important and hope to see what a few other people think. It seems timely now as well because every day brings the good news that another of us is free from the virus and we have to pick up the pieces of lives that have been taken over by hepc. It’s good if we do that mindfully rather than drifting. It is a curious thing to say, perhaps, but we have been given an opportunity to make a fresh start and review our lives to date in the light of what we have learned.

Lots of love,

RSF

---

G3a. Probably infected 40 years ago.
Diagnosed July 2015
7/7/2015: ALP 69, ALT 209, WBC 5.8, VL 40,000. Fibroscan 9.5 Kpa.
Commenced treatment Sof/Dac (Natco Pharma) 24 wks in Feb 16
VL UND @ 4 wks, 12 wks

EOT 6/7/16
SVR 12
SVR 24

PHEW! Thank you so much Dr James, Monkmeds and all at Fixhepc

[Gaj]

Hi GF,

I’d like to say thanks for thinking of a couple of rather anxious people. I appreciated it and share your sentiments about Dr F even if my liver isn’t so thrilled by the Yard’s Thomas Jefferson Ale recommendation. (Damn, its past midnight here and still over 30°C) You of course should relish and enjoy a cold Ale or two due to your good liver status and I feel sure you will find a fulfilling channel for your improved energy and alertness. This is something I feel many of us will need to do post treatment.

Hi RSF,

Thanks for raising what I believe is an important topic. I’ve been struggling to put down my thoughts for the last couple of days and I’m still not quite sure that I’ve worked out how to express it yet but would like to add a couple of comments.

While I wonder and wouldn’t be too surprised if this virus itself physically manifests as anxiety and depression I am sure that the stigma and ignorance associated with it is a very significant factor. For many there is little opportunity to talk about our worries as we would want to and even when there are those we can confide in they often don’t truly understand this virus or comprehend how we feel, yet empathy and understanding are so important when dealing with and alleviating anxiety and depression. Probably not news to those reading but I do want to distinguish between ignorance which we can all help reduce in some small way even amongst some in the medical profession and stigma….for which there can be little excuse.

After SVR? For some it probably will be a case of ‘getting on with the rest of your life’ but for others there will be a need to take stock of what you have been through and how that has affected you and then decide ‘where to from here?’ I don’t have any answers myself (yet) but suggest to those who are in this situation that you now have plenty of time to figure it out. I know you will, so take joy in life and savour it while you are doing so.

Well, enough from me for now, I look forward to hearing others thoughts.

---

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

[coral]

I can fully relate to your post RSF and to the points in everyone’s comments. I have no doubt now that the virus, that I refused to acknowledge and couldn’t talk about for so long, has been closely linked to my mental well being. I agree Gaj that the inability to talk about HepC (and for me at times the feeling that I had a “dirty little secret” feeds the feelings of a/d.

I fought this for so long but as the physical symptoms of the virus increased in more recent years so did my lack of motivation and tiredness until I can look back now and see that I was feeling increasingly depressed. When it brought along a new friend for me, anxiety, it caused a bit of a perfect storm and meant that something had to give – which ended up being my much loved but stressful career.

This got tested again when I had my relapse. Understandably this made me sad but when I felt the physical symptoms return I also felt the greyness return as a physical thing. I have no doubt about the links. I think there is still a bit of a battle once the virus has gone to find a way back to normal but I think being stronger physically has to give us a bit of leverage. Coral

[rightsaidfred]

Hello Gaj, Coral and everyone,

Thanks for your thoughtful responses. Ignorance is a huge issue: I’ve talked to a few people I know about what has been going on with me and have been surprised to find out that hepc is something most people simply seem to know nothing about. This is scandalous since as we all know it is very widespread. There seems almost to be a conspiracy of silence. I was pleased to see that they had something about it on the rolling screen at my GP surgery the other day. It said “Get tested, get treated” (!). I was forcibly struck by the irony of this, given NHS rationing.

As to the stigma; that’s just inexcusable but worse for me, I suppose, I just don’t understand. Illness is illness. We’ve been through the whole AIDS thing and the tabloids have given up on “The gay plague” or the wrath of God etc. so I naively thought that that way of thinking was dead and buried. From what you and others have said it evidently isn’t, and people can’t help internalising hatred and prejudice so I feel the pain that is being expressed acutely. This is a lot because I am a gay man of a certain age…..All I have ever come to about it is that people need to work some internal alchemy on themselves and realise that they are actually perfectly okay and come to that normal. From that point things are much better and you find out that most decent folk just don’t care. As for those that do, perhaps they are best left to go to hell in their own way?

I can readily see that such feelings of alienation may worsen anxiety and depression but feel that the ‘answer’ lies within ourselves. As to the rest of it: I still have a/d to deal with myself but have been a little better since the positive results of treatment have become known to me. I also take strength and encouragement from the good stories of others, but feel humble in the face of more difficult histories, and have little to offer but love and the knowledge that the odds are in favour of struggling sufferers: Vox is on its way etc. Sheer bloody minded determination to get well helps with almost anything too!

RSF

---

G3a. Probably infected 40 years ago.
Diagnosed July 2015
7/7/2015: ALP 69, ALT 209, WBC 5.8, VL 40,000. Fibroscan 9.5 Kpa.
Commenced treatment Sof/Dac (Natco Pharma) 24 wks in Feb 16
VL UND @ 4 wks, 12 wks

EOT 6/7/16
SVR 12
SVR 24

PHEW! Thank you so much Dr James, Monkmeds and all at Fixhepc

[rohcvfighter]

Hi RSF,

you opened a very good thread .
In brief my own experience:
– no emotional ups and downs until I finished the interferon+ribavirin treatment
– the hell started one week after I finished the interferon treatment. It lasted quite long. Words cannot describe how it is to feel that way, but “feel like hell” is a pretty good description. Strange is that in all this hell situation, the eagerness to live became stronger and stronger.

Cheers,
RHF

---

In fiecare an HCV ucide peste 500000 oameni.Medicamentele generice pentru hepatita C functioneaza. Nu deveni statistica! Cauta pe Google “medicamente generice pentru hepatita C”.
HCV kills more than 500000 people every year. HCV generic drugs work. Don’t become a statistic.
By sharing this Youtube video you might save someone’s life!
My TX: HEPCVIR-L[generic Harvoni]-India
SVR52 achieved

[Matt-Kenney-google]

Hi RSF,
Very thoughtful and thought provoking sentiments expressed here.

One lesson that I feel we can all take away from Dr. Freeman and FixHepC, is that our life matters to others—It not only includes our family members or friends who may already have expressed concern for us after learning of our serious condition, but also includes people, some whom you may never have met, like most of us posting here. Many have shared research that has involved perhaps, a great deal of time and effort on their part, and we all appreciate the time the staff and moderators put in, all voluntarily. We’ve shared both the joys and sorrows, the ups and downs, the very real and at times gut wrenching life stories of those living with the dragon even life after slaying it. It has, for many of us, wielded an extreme and seemingly unshakeable influence over us. What has helped us to persevere?

What we’ve found is what studies indicate, that those who volunteer to help others have been found to suffer from fewer aches and pains and less depression. Overall, they enjoy better health. Generous giving even improves the health of some who suffer from chronic health problems, such as multiple sclerosis or HIV. (Dare we add Hep C to this list?) It has also been shown that recovering alcoholics who help others become significantly less depressed and can improve their odds of avoiding a relapse.

As to why this is so, it is suggested that, “feelings of compassion, benevolence and kindness leave less room for negative emotions.” That’s a definite health advantage. Giving may also lower stress and blood pressure. And people who lost their spouse in death recovered from symptoms of depression sooner if they offered support to others.

I truly believe that it has been the support we’ve both received from here and have given here, that is part of the healing process experienced by so many. (I include myself mostly in former group). That requires trust and a willingness to open up to complete strangers and share.
I’m constantly amazed at the uplifting comments of all of you, some who are on multiple go-rounds with the beast, and I wish to take this opportunity to thank you for your willingness to reach out to any and all who come here hopeless and depressed, desperate for a helping hand.
You’ve been a huge part of my prescription for dealing with the anxiety and depression that accompanies life with the dragon.
You are part of my family of “volunteer” friends whom I’ve never met.

Maybe that can be remedied some day,

Matt

---

GT1a; Got it some time in the 70’s; Diagnosed @1976
Tx naive
METAVIR: A2-F2
SOT May 18, 2016: CMP: AST 162 ALT 241 VL 13000000
3 weeks after SOT: AST 27 ALT 31 VL 138
Reached EOT Aug. 10, 2016 / Received svr4 results Sept. 20, 2016: AST 22 ALT 24
Hep C RNA NOT DETECTED”

[sabrecat]

Matt, this made me remember the ‘circle of kindness’ youtube my daughter was shown in Kindy last year.

May have been posted here before, but what made me think is that when I started playing it, she came racing over and said:

“I know that, I love it ,,,,,, I hope I can be like that”.

Sure she will.

https://www.youtube.com/watch?v=VcBkgKrVaiU

Jeff

[rightsaidfred]

Hello Matt,

Thanks for that post, and if I may return the compliment, it is also very thoughtful. More than that it is both warm hearted and practical.

It’s an extraordinary phenomenon, this forum. The kindness of strangers is something very valuable and probably what makes us human. In a world that can look troubled and unstable it’s vital to hang on to that understanding. It is probably critical to the long term survival of our species, and if that seems like a very big statement it isn’t my fault!

I believe that love is the answer to all problems by which, though I LOVE YOU ALL MY DAAAHLINGS, I mean to say something which is common sense and not (very) gooey. I wish I remembered all this more often but posts like yours remind me, so thanks.

Of course what’s above doesn’t mean we should be tolerant of stupidity, ignorance, prejudice etc. and the cruelty that inevitably follows them. That’s another very good thing about the forum: Myths are regularly debunked, the piss is regularly taken……

I’d love to crack a joke here, but they get misunderstood especially when English may be the common language here but isn’t the mother tongue of all. Anyway, most of my favourites are so politically incorrect, black and utterly tasteless that I tend to be mean with them. Not sure you really would like to meet me at all!

RSF

---

G3a. Probably infected 40 years ago.
Diagnosed July 2015
7/7/2015: ALP 69, ALT 209, WBC 5.8, VL 40,000. Fibroscan 9.5 Kpa.
Commenced treatment Sof/Dac (Natco Pharma) 24 wks in Feb 16
VL UND @ 4 wks, 12 wks

EOT 6/7/16
SVR 12
SVR 24

PHEW! Thank you so much Dr James, Monkmeds and all at Fixhepc

[Matt-Kenney-google]

Thanks backattchya,
As regards wanting to meet you or any of the motley crew that I’ve come to know and love here …. I’d love to have the chance to take my chances

---

GT1a; Got it some time in the 70’s; Diagnosed @1976
Tx naive
METAVIR: A2-F2
SOT May 18, 2016: CMP: AST 162 ALT 241 VL 13000000
3 weeks after SOT: AST 27 ALT 31 VL 138
Reached EOT Aug. 10, 2016 / Received svr4 results Sept. 20, 2016: AST 22 ALT 24
Hep C RNA NOT DETECTED”

[Sven]

Very good reading thank you all.

Here is my take on the HCV psyche after treatment.
I remember one of my posts to another fixhepc member who had just passed SVR 12 and was determined to be cured or very well on their way to it.
I said “enjoy your life you have achieved the ultimate goal” or something like that is what I tried to convey through a post.
The return response was not good and I ended up editing my response and apologizing, we have since moved on and really are good.
My point is once you’re cured it is like “ok your good, take care”! This is a huge change of situations and yes it is good, but after I just spent the last 10 years trying to control my HCV and watching all my brothers die of HCV associated issues, I was like “ok I think I’m good, now what do I do”?
The sudden change of situations, in 6 months, very much affected me in a way that I am still trying to iron out. I set up everything for my wife, so she could live a normal and good life after I was gone. I did this for 10 straight years. Now they say your ok, and it is time for me to move on? What the hell!
The mental part of being cured of a disease that has a stigma is that the stigma out weighs the right to spread the good news about your cure, is 100% mind bending to say the least. In fact the only one I could tell was my wife and trying to contain my enthusiasm amoung coworkers & friends is weird and very debilitating.
So since I was “cured” I have been going through this, how do I act and what the hell do I do now? Yes yes yes I know I need to be grateful, I am. But it is still very confusing trying to live a normal life after going through death rituals for 10 years.
So this is a wake up call that mental therapy is very much needed for those “too” after successful treatment. After all I’d imagine if you asked a few SVR people they may agree after thinking they have planned to die or be debilitated by this disease they are now “good to go”, they’d possibly agree with this scenario.
Note: please keep in mind that those whom are going through therapy for this frign disease, we are all with you 1000% and if there is anything we can do we’ll be here for you. This is just the possible side affects after SVR 12 and beyond: after being told “your good to go now have a great life”
All the while having to keep it secret. Hmmmm, interesting indeed.
Thanks for listening.

---

Contracted HCV 1980’s
Geno Type 1a
F3 ( doc says once treated I’ll be F2 maybe F1)
Meds shipped 6/17/2016 arrived early 7/2016

Viral count – 3,471,080

4 week quantitative bloods: August 17, 2016. I have been diagnosed as <15 (told undetected)

8 week quantitative bloods: September 14th. I have been diagnosed as <15 (told undetected)

11 week PCR RNA Qualitative bloods: September 26th 2016 – Undetected

December 19th 2016: Cured!
Viral count: zero!!!
2018 viral count: still zero!
Cured!

[Author]

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