Fear of being healthy again

[EC2]

Hi Everyone,

I am few days ahead of starting my HCV treatment with generics and I am a little bit anxious about it.
My story with HCV sounds perhaps a little bit strange:
I have HCV for more than 13 years. 6 years ago I made the IF+RIBA treatment which had manageable side effects, yet after 3 months I was still having a viral load of ~1000 and at 6 months it was UND. After the IF+RIBA I went through a moderate depression or anxiety: felt alone, isolated from others (family, kids), etc. 6 months after the IF+RIBA treatment I made another viral load analysis and the result was positive, the HCV was back. In the very moment I received the result of HCV being back, the anxiety/depression went away: I was having my life back under control.
Knowing that I have HCV for such a long time acted as a control mechanism on me: do not drink (once in a while a small beer), eat healthy, do exercise, get rest, etc….
I am aware I need to get rid of HCV and I am sure I will, however I find strange to have such feelings fear and sadness thinking on no longer having the HCV.
Does this sound familiar to other people too?

Cheers

[Hit The Road Jack]

Hi Serb

I too felt anxious when I first started treatment but for different reasons. I was concerned I had purchased sugar pills or worse POISON !! (I can confirm – I’m still kicking plus at the 4 week point I was undetected , just my imagination working over time my desire to rid myself of HCV is very high so I can’t Say I can relate to you with this. However, I do recall an interesting bit of info Dr Freeman posted on this subject. I just tried to source it for you, but couldn’t find it. For memory it was in response to a similar post to you that Arial put up (sorry Arial if I’m mixed up and it wasn’t you)

Dr Freeman touched on Stockholm Syndrome . To give some insight into why you are feeling like you r , Basically it is a syndrome by which the captive person or victim comes to sympathise & at times fall in love with the captor (in this case HCV)…sounds odd, I know, but it’s a recognised syndrome.

Try googling or looking back through to find Dr Freemans post..I’m sure both will explain a lot more eloquently.

Wishing you all the best

---

Tx naive. GT3a
Female
Diagnosed 1996

Start 25/2/16
VL 62700
F0
hb 141
ALT 36
ALP 81

4 week test
VL UND
ALT 18
ALP 70

Additional 4 weeks Tx
Start 19.5.16

[tweakmax]

U are not alone in being depressed and sad “strangely”

Hcv affected the neurons in our brain

[Hit The Road Jack]

Ps sorry I spelt Ariel wrong

---

Tx naive. GT3a
Female
Diagnosed 1996

Start 25/2/16
VL 62700
F0
hb 141
ALT 36
ALP 81

4 week test
VL UND
ALT 18
ALP 70

Additional 4 weeks Tx
Start 19.5.16

[Tina-Hill-facebook]

Hi Serb

I can understand that anxiety you have described – its scary to allow hope to re enter and when you have already had to go through so much.
I wish you all my best wishes for the journey. This time round is a different ball game and you have the best team behind you

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SVR 24

[pat1]

Hi Serb, I think that this time round and after Tx you may find the courage to live life with some positivity. I say this even though I didn’t treat previously and haven’t had your experience. Progressing through the Tx process with these DAA’s may be different for you. Also recognising and knowing we are supporting you here is incredibly significant .

---

gt 1a VL 6m
F2/3 FibroScan – 9KPa in 2011 and 7KPa in 2015
sof/dac 10 December for 12 weeks
pre tx alt 85 ast 51
4 wk alt 34 ast 31 UND <35
8 wk alt 29 ast 32 UND <15
12wk alt 25 ast 25 EOT 3.3.16
SVR24 UND KPa5.3 F0 in normal range
I am well
.forever grateful to fixhepc

[Dr James]

Hello Serb and welcome. I guess I was the opposite with my diagnosis…very anxious and depressed when I found out I had the virus. Was incredibly happy when I reach SVR4 and I am very close to my post 12 week bloods which should see the end of the virus for me. You are certainly in the right place for support and expert advice.

These DAA’s are fantastic with very few side effects too. Good luck with your treatment.

Cheers Lynne

---

YMMV

[Chester]

I think there are at least two threads about this. I’ll have to keep looking for the other one. But here is one.

FWIW, experiencing a speedy feeling on the meds is a quite common (positive) side effect. I had it. Don’t get too excited. It probably won’t last.

I didn’t have any hesitation with taking the drugs either. But I’ve been a little let down by the level of improvement once the drugs were well and truly out of my system. But after tests for other causes by the doc which were all ok, and given I’d had the virus for close to 30 years, it seems it’s most likely just me getting old. Which is a bit of a bummer.

Anyway, I think you have to look at this by saying to yourself that you know you have to get well – and it’s clear from your post that, rationally, you do know that’s what you have to do. So you’ve got to get on with it and seek out the support as your anxieties arise along the way. As you’ve found this place, you no longer need be worried about being alone and isolated when and if that situation arises.

[Dr James]

The original thread on this common feeling was called “Why am I afraid to take the medications”

Here is a link

http://fixhepc.com/forum/experts-corner/320-why-am-i-afraid-to-take-the-medications.html?limitstart=0

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YMMV

[sabrecat]

Knowing that I have HCV for such a long time acted as a control mechanism on me: do not drink (once in a while a small beer), eat healthy, do exercise, get rest, etc….
I am aware I need to get rid of HCV and I am sure I will, however I find strange to have such feelings fear and sadness thinking on no longer having the HCV.
Does this sound familiar to other people too?

Hi Serb,

while having the virus and knowing it would stay that way, I knew my place in the world, and what the future probably held.

Finding out I had a HCC in 2012 did not particularly phase me as much as I imagined news like this without Hep C would. Not saying I shrugged he whole thing off, but my reaction was somewhat stoic if I could say that.

Now the possibility / probability of being Hep C free!

A sense of bargaining with the cancer now: “look, I have refrained from knocking myself around for a decade or two, and recently popped some pills to make the Hep virus piss off; can you consider giving me a break now too?”

Feelings in the future for me will vary wildly, I expect. Hope you find your cure both for the virus, and for any messing around with your feelings that occurs on the way through.

A specialist told me years ago that the virus would probably die with me; that is I would die from something else. The narcissist in me thinks it great that my dark passenger (thanks to Dexter series for that) will now cark it before me. Good f’ing riddance and I will chance the future.

Yours

Jeff

[Ariel]

Hi there Hit the Road Jack hi Serb
Well maybe it was just before I got my meds I said
“Thanks for this post I am just waiting my treatment to arrive and yes feeling anxious in fact I just wrote a private message about it then found this awesome page (I am a nwebie here and about to get my meds) . I think after relapsing post tx interferon it must be normal to be anxious! This is a great thread, thanks so much loving the affirmation. Happy New year to us all ”
on the link James posted.
I’m post tx now!!
EOT was over two weeks ago. I have so far been undetected since around Day 30ish. Anxiety is a part of the illness for sure, but I thank HCV for forcing me to reinvent myself rather than feel confronted by a well future; so I am lucky because I totally understand the fear. Peginf robs years yes it can and does. On reflection, over years of hectic professional life I can’t believe what I managed whilst ill but not knowing I was sick if that makes sense.
I’m keen for achieving SVR at my next bloods, but also follow James posts closely on retreating options and it’s all good. Waiting is part of this illness it’s a great test of endurance, trust, self education, survival and keeping positive against all odds.

Good luck with tx it’s fantastic and zero in sx rating compared to that other stuff. The results are nearly always optimistic and mine just got better whilst on the DAAs

Wishing you a smooth ride

Splashes from Ariel and ty Hit the Road Jack for following my story if it was me you were quoting still no idea anyway,
I hope to encourage others to tx

[Dr James]

Hi Jeff,

With your history of HCC you have a 1:3 chance of seeing it back, on average within 3.5 months so make sure you have an AFP every month for the next 6 months and an ultrasound, triple phase CT, or MRI if the is any substantial increase.

Don’t skip this!

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YMMV

[EC2]

Dear All,

thank you very much for your messages and encouragements that you wrote. You (we) are indeed a great FIXHEPC community, I am very happy that I heard about this website and it does contain a lot of useful information & experiences. Many thanks to you all for this. I used part of the information that posted on this website in order to convince people around me that my decision to use generics for HCV is a solid one. It also helped me in taking the decision.

I did read the article about Stockholm syndrome couple of days ago, perhaps this applies to me or perhaps I am more “affraid” about how I will be/feel in the future knowing that I will no longer need to control too much myself and have more “freedom”. What I find very surprisingly about the human nature, (a similar idea I was founding also in a writting of Viktor Frankl, an Austrian neurologist and psychiatrist who lived couple of years as prisoner in a concentration camp) is that during hard times, the humanity does not disappear rather it adapts and gets enforced. Sometimes I like to think that the only/single best outcome from having HCV is that it gives you a very strong motivation to live (survive)-> it motivates you to do everything you can to protect your health knowing there is (was) no cure available. Perhaps this “eagerness to survive” was the thing I was missing at the end of the previous treatment and not the HCV.

Cheers

[Hit The Road Jack]

Hi Serb

Really interesting points you’ve raise. Given me food for thought.

I can’t quite recall where or what I’ve previously read but I have come across Viktor Frankl somewhere before…thanks for reminding me of him..now I’m on a hunt to source

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Tx naive. GT3a
Female
Diagnosed 1996

Start 25/2/16
VL 62700
F0
hb 141
ALT 36
ALP 81

4 week test
VL UND
ALT 18
ALP 70

Additional 4 weeks Tx
Start 19.5.16

[Gaj]

”James-Freeman-facebook” wrote:

Hi Jeff,

With your history of HCC you have a 1:3 chance of seeing it back, on average within 3.5 months so make sure you have an AFP every month for the next 6 months and an ultrasound, triple phase CT, or MRI if the is any substantial increase.

Don’t skip this!

Thanks Dr James, I’m also already on three monthly scans for at least 12 months. Monthly AFP as well makes sense given this new information.

---

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

[Author]

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