- This topic has 109 replies, 40 voices, and was last updated 7 years, 6 months ago by
.
-
ps My very best wishes to everyone ending treatment for the very best results
”Lynne-Francis-facebook” wrote:Hi Not sure if this is the right place to be for my question…I have five days to go before I finish treatment. The past week I have felt incredibly down and unhappy….not my usual demeanor……very teary. Very anxious about my post 12 week blood test….not sure if it is maybe being anxious about the result……
Has anyone else experienced this?Hi Lynne, I am not far off finishing TX as you mention you are, I too have had nagging thoughts and all kinds of anxieties around stopping taking the meds. I have a slight chemical taste in my mouth and can’t wait for that to go away but part of me doesn’t want to stop taking the sof/dac ever. I wan’t to get VLs done on a weekly basis but know its pointless until 4 and 12 weeks after TX, I think my worry is irrational, and try to hang onto the science which I trust a lot more than my damaged mind, And the depression and isolation as well, the not being able to talk about this with anyone, not being able to express our hopes and fears etc, its a whole psychological burden on its own.
As for nagging symptoms I have a few, but I think I had medical stuff going on way before I was infected with HepC, some gastric and psychiatric issues, an inability to put on weight, excema, depression was probably my worst pre infection issue. So for me, a lot of the issues which I had before infection became amplified by HepC it seems, meaning just because I have cleared(hopefully) the virus I still need to watch my diet(avoid foods I was intolerant of before infection) and watch my mental state to avoid falling back into the pit of depression I lived through during childhood.
I found the best guide to my health is the Bristol Stool Chart, when I am in the middle, I am happy and have energy, as Hippocrates said I think all disease begins in the gut, which goes on to effect the mind and the rest of the body,
A subject no one likes to talk about but its been mentioned by inference in a few posts here,
https://en.wikipedia.org/wiki/Bristol_stool_scaleWhen my gut is happy my skin tone improves, I start to sweat again, my BO stinks like it should, and most anxieties go away, but yes I too am quite anxious about the end result, and I am not the best patient. No wonder so many doctors told me I was untreatable, being born with so many allergies did not make early life easy, my poor mom was at a wits end trying to feed me at all. When tested for allergies I was apparently showing reactions to the “control” test, so they gave up trying to figure out what I was allergic to,, just gave me a long list of foods and substances to avoid, almost impossible to adhere to in this world.
So long as I eat right, my gut is happy and so generally is my head. In my case I think I have food intolerance totally unrelated to HepC and so watch my diet very carefully. I can apparently eat a lot of the foods I used to avoid, but choose not to rock the boat so to speak, always my guts are my guide, literally.
As for Tx itself I had virtually no sides apart from disturbed sleep punctuated by lurid and weird dreams, but I guess I normally dream like this and just don’t recall the dreams when I sleep more deeply,
Hope this helps somewhat,
good luck and regards
Jim
”Lynne-Francis-facebook” wrote:Hi Not sure if this is the right place to be for my question…I have five days to go before I finish treatment. The past week I have felt incredibly down and unhappy….not my usual demeanor……very teary. Very anxious about my post 12 week blood test….not sure if it is maybe being anxious about the result……
Has anyone else experienced this?As an interferon relapser I was even scared of starting any new tx…I am scared of relapsing…I am scared of sx, I am scared of a lot of stuff BUT I think this is completely normal.
After all, I realise I have not been well for a darned long time, in my case Lynne, I was not told of any sx going into peg/inf, in fact when I asked I was told about people who ‘worked all the way through peg/inf’, and how they ‘breezed’ through it, no no truth was told. I was NOT told about fibroscan and not given one. I am F0! I was urged in fact to commence tx immediately.
I was not gene tested, I was not told about this and when I finally was taken off tx at 43 weeks with heart trouble by a locum while the Gastro person responsible for this failed duty of care was away, I relapsed within four weeks.These and the last four years of rebuilding my completely destroyed body have made me nervous.
I agree with LG, I have decided to praise myself, and that is; focusing on the triumph of reinventing myself, of taking the bit between this old nags teeth and giving this a go…of never giving up hope, and of just accepting baby steps are my thang.
I asked about relapsing going in, via a pm to Dr James, and I know if the worst happened it is not all lost and done and dusted for any of us. I think that this is a great issue you have raised.
We will be okay. After tx a nice cleansing lifestyle to detox these meds too…lots of swimming in the sea (not very close to Bendigo
) massages, walks, new hobbies, trying something we have never done before…these are great things to distract the mind. I feel your anxiety, and thank you for the honesty Lynne xxx
Ariel 
Jimmy6429 wrote:As for nagging symptoms I have a few, but I think I had medical stuff going on way before I was infected with HepC, some gastric and psychiatric issues, an inability to put on weight, excema, depression was probably my worst pre infection issue. So for me, a lot of the issues which I had before infection became amplified by HepC it seems, meaning just because I have cleared(hopefully) the virus I still need to watch my diet(avoid foods I was intolerant of before infection) and watch my mental state to avoid falling back into the pit of depression I lived through during childhood.
I found the best guide to my health is the Bristol Stool Chart, when I am in the middle, I am happy and have energy, as Hippocrates said I think all disease begins in the gut, which goes on to effect the mind and the rest of the body,
A subject no one likes to talk about but its been mentioned by inference in a few posts here,
https://en.wikipedia.org/wiki/Bristol_stool_scaleWhen my gut is happy my skin tone improves, I start to sweat again, my BO stinks like it should, and most anxieties go away, but yes I too am quite anxious about the end result, and I am not the best patient. No wonder so many doctors told me I was untreatable, being born with so many allergies did not make early life easy, my poor mom was at a wits end trying to feed me at all. When tested for allergies I was apparently showing reactions to the “control” test, so they gave up trying to figure out what I was allergic to,, just gave me a long list of foods and substances to avoid, almost impossible to adhere to in this world.
So long as I eat right, my gut is happy and so generally is my head. In my case I think I have food intolerance totally unrelated to HepC and so watch my diet very carefully. I can apparently eat a lot of the foods I used to avoid, but choose not to rock the boat so to speak, always my guts are my guide, literally.
JimThanks, I’m getting a lot out of reading everyone’s experiences and thoughts.
I’m about to end week 3 of Tx tomorrow so have awhile to go yet. But like you Jimmy I have a lot of pre-existing conditions and HepC has definitely exacerbated things – as to how much? I won’t really know until EOT/post-Tx. My gene pool has left me with a lot of allergies/food intolerances and hence gut issues. I absolutely agree with how my ‘mood’ is affected by my gut issues. I’ve been diagnosed with IBS but I’m also sure the HepC is messing me up more. Severe diarrhoea, that can go for days, unless I take medication – leaves me extremely dehydrated either way. Therefore more headaches, dry skin and mouth, dizzy spells etc. Alternating with constipation, being ‘blocked’ and bloated for days, makes me really cranky and depressed.
On Tx, my 1st 2 weeks were good, high energy, sleeping solidly, but sweating profusely, liver and kidney pain, sharp stabbing on/off headaches. Emotionally, a roller-coaster ride, very teary at times. But, noticed my usual persistent low grade anxiety isn’t there, I have high anxiety episodes still but they resolve faster. Depression still lurking and have had some real lows. Peripheral neuropathy still shocking and swollen painful joints – pre-existing arthritis – seems to flare up badly at times.
I still seem to be having gut issues, can’t digest meat properly – I end up with ‘pale, floating’ stools – sign of not digesting fats well.
I’m still very fatigued though and hope that lifts.I feel encouraged by those of you who have finished and started out with similar conditions/symptoms and are rid of some and less affected by the rest.
I’m trying to be optimistic but don’t want to put too much hope into improving – being ‘cured’ of the virus won’t necessarily mean ‘cured’ of all conditions – because I’ll be like others have mentioned and become anxious or depressed at EOT about ‘results’.
Good Luck to those who have finished, are about to and the rest of us with many weeks to go
QLD Australia ☀️
G3a HCV 35 yrs Tx naive
Started Sof/Dac 13/01/16Dec ’15
AST 70
ALT 89
GGT 124
Fibroscore 8.5
F1-F2
13 Feb’16 VL UND
AST 24
ALT 26
GGT 50HWell, it seems that while a lot come here and gather info, do their Tx and leave; some complete EOT but stay to offer guidance and be part of the support network. It appears that most of the soul-searching and reflection process goes on during treatment and some share this but doesn’t appear to be much in the way of post-tx – if this section is any guide, which is a shame really.
Anyway, I’ve appreciated what has been shared.
QLD Australia ☀️
G3a HCV 35 yrs Tx naive
Started Sof/Dac 13/01/16Dec ’15
AST 70
ALT 89
GGT 124
Fibroscore 8.5
F1-F2
13 Feb’16 VL UND
AST 24
ALT 26
GGT 50HHi Chejai, I know what you mean about some finishing up, and moving on not to come back. For a little bit, I had that going on, thinking, well, that’s that, done with that.
But, after a little while I find myself drawn back to this place, to check on those still here, to see who else is looking for answers, keeping in touch, and doing my best to inflict my bad tastes in music on the rest of the world via the Party Playlist,
What’s encouraging is to see the people stepping up as some leave, others taking up the baton, to help those who come after. Not sure I’ll ever totally be away from here…its too good a thing.
I suspect that some of the lack of comment is due to the few who have so far completed treatment mostly still awaiting their SVR results. In my imagination I can see that wait taking forever when it becomes my turn and wonder how I would comment on that at the time?
……but then again, I was always awake by 4am on Xmas day and talking to my brother about the anticipated presents, even though we weren’t allowed to get out of bed and start unwrapping until six!
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
Yeah Gaj, 2B, Chejai, Lynne, and all of you here, 3 months more waiting, it’s like counting every second as it goes bye. Still 10 days away from EOT myself, getting sides from the dac, Doc has suggested cutting it in half for the last 10 days or whatever is left. then the wait starts,, I’ve met so many amazing people in here. I used to mod on Dalnet many years ago, it was nothing like this. I’ve rarely met such a bunch of caring people in here, and so informative, the club just blows me away (and I’ve been to some weird places).
The discussions here have been robust without the put downs or any abuse from my observation. If nothing else we have been able to show a little window into this issue. Perhaps we have set an example for those in power, I don’t know yet, seems like too much money is involved with disgusting examples like Gilead showing how not to help people. Too many emotions to relate, so much happening inside and nobody around me has any idea at all. Such a gift to have this forum, such a rare gift,,thank you to everyone who has been and is part of it
I’d guess a lot more people here are currently on Tx rather than finished. As time goes by there may be more post-tx reflections.
Also there are a lot of Looky-Loos in here but that’s normal for lots of forums. Compare FixHepC forum 9 Members and 169 Guests Online, with Bleeping Computer forum 73 members, 6639 guests.
2b said –
“But, after a little while I find myself drawn back to this place, to check on those still here, to see who else is looking for answers, keeping in touch, and doing my best to inflict my bad tastes in music on the rest of the world via the Party Playlist,What’s encouraging is to see the people stepping up as some leave, others taking up the baton, to help those who come after. Not sure I’ll ever totally be away from here…its too good a thing.”
Yeah, 2b that’s true, seeing some remain and some people return to check how others are doing and keep up the support, hey even if it is to ‘party’. That’s one of the great things here it doesn’t matter our taste in music, our pet obsessions, our anxieties and discussing all the weird shit happening in our bodies – literally
Jimmy –
“I’ve met so many amazing people in here. I used to mod on Dalnet many years ago, it was nothing like this. I’ve rarely met such a bunch of caring people in here, and so informative, the club just blows me away (and I’ve been to some weird places).
The discussions here have been robust without the put downs or any abuse from my observation.”Exactly Jimmy, I bet a lot of us would agree, having had experiences on other forums, FB etc. There’s no ‘trolling’ or ‘flaming’ here -Thank Goodness!! Doesn’t mean there aren’t plenty of passionate discussions, which is great.
Says a lot about the Mods of this forum – a Big Thank You there
I also think that, as a group, we’ve experienced being social pariahs – for those who have made it known about their HCV status – and also feeling like one because of the stigma attached. We’re used to carrying this ‘dirty little secret’ – it shouldn’t be like that, we shouldn’t feel ‘shame’ or embarrassment – but there’s an isolation attached to feeling that way.
Many of us are also experiencing emotional and psychological reactions to treatment that is making us feel vulnerable, which is why those that stay here seem to have the empathy and compassion for others and that keeps the forum a safe place, a haven to come to share, vent and offer kindness and lots of ‘Elove and Ehugs’ to others who feel the same.
Even for those who have finished Tx and are celebrating their UND but remaining cautious as they wait for SVR’s they still probably have a lot going on in their head, as Gaj commented on, and not really feel like treatment is over, done, ended or finito!
So, it’s great that everyone can still check in – it’s like going on a journey and returning to home base now and again I’m truly grateful for all those that make this place feel so comfortable and reassuring.
I have this image in my head of Dr James having this big shed out the back of his place where anyone can stop in and stay over, have treatment or just hang out, share stories, retreat from the world and then leave when we’re ready and know we can drop in anytime Feel the Looooove everyone
QLD Australia ☀️
G3a HCV 35 yrs Tx naive
Started Sof/Dac 13/01/16Dec ’15
AST 70
ALT 89
GGT 124
Fibroscore 8.5
F1-F2
13 Feb’16 VL UND
AST 24
ALT 26
GGT 50HWell, I’ve kind of finished (in my head anyway)
In so far as I ordered 24 weeks but think I could have gotten away with 12 (sof/ dac)
So I hardly even think about it anymore (week 14 now)
I just take my pills in the morning like a vitamin and just go about things as usualI had a bit of a low feeling around Xmas but that is not unusual as it is a ‘family time’
It was the double whammy of having hep on my mind that led me to dwell on past family experiences that I feel contributed to my drug use and self loathing which led to my hep
But with a holiday i felt heaps better and back to not giving the whole hep or family thing much thought at all – a much better state of mindI have been virus undetected since week 4 but have felt no different during the treatment at all
I can honestly say I feel no better or no worse than before i started – I was even worried they were placebos initially lol except for the taste
I originally was taking them at night as I thought they could make me nauseous
As they didn’t i changed to mornings so I could drink more water after taking them (a bit dehydrating)I guess my biggest reflection has been the belief that the hep has overall been a positive in my life
It has forced me to concentrate a lot on my health and wellbeing
i have never actively thought about the complications, only about what i can do to lead a normal healthy life
The only time I have actively thought about a hep death is during tx when i researched how to get my hands on Nembutal in case I do ever need to die on my terms rather than some medical practitionersI’ve seen a few people die, and some quite young, some quite unexpected
Go into any high care facility and look at all the living corpses that aren’t allowed to die – it’s a fate worse than death
Death can happen anytime and anywhere so I’m not going to give it any more thought than ‘what will be will be or pass me the Nembutal’And lastly…when I first read about the buyers club and Dr Freeman it all sounded too good to be true – I am extremely cynical about such things
I swore that after the last tx debacle i would never do tx again unless i could be guaranteed the sides were insignificant enough to warrant it
I went straight to this website and checked it out – it seemed legit with lots of people undertaking tx with little or no sidesNot having given any thought to my hep for 12 years i had no info or blood tests and didn’t know where to start
I finally spoke to the doc who said, doesn’t matter G1 or G3,, liver damage, or VL – start immediately and get yourself cured – here’s a script and what to do to get it filled
i had not previously, and probably will never again hear such practical advice from someone with Dr in front of their name
How lucky am I/ we that we have the monetary and practical means to cure ourselves on our terms – it’s incredible reallyAnyhoo, as I’ve been scorned for before, I do like a drink and it’s fast approaching beer o clock
So if you excuse me i’m going to smoke a reefer to get the thirst going Love to all
Sure are some great people on this site and behind the scenes so thanks for everything!
- You must be logged in to reply to this topic.