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TOPIC: The Horror of Interferon: WARNING: Very Disturbing Content!

The Horror of Interferon: WARNING: Very Disturbing Content! 5 years 6 months ago #14920

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MODERATOR ADVISORY NOTE: Those who have previously treated with Interferon/Ribavirin may find watching this video a confronting experience which could trigger unwanted memories. Please exercise caution as to whether viewing is appropriate for your circumstances.


Not a fun song at all but if you're on tx you can likely appreciate that you don't have to go through the old tx of Interferon and Riba.

G1a dx'd in 1992, Biopsy F2 VL 8mill +. Tried tx with Interferon/Riba, back in 2008 didn't last long it felt horribly ugly!! I stopped tx, after 5 weeks!!
Started tx 6/1/16 with Harvoni.
12 Month Labs= UND
Last Edit: 5 years 5 months ago by Gaj. Reason: Advisory added
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The Horror of Interferon: WARNING: Very Disturbing Content! 5 years 5 months ago #14979

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I will never know what it was like to undergo the hell of interferon-based treatment.
In keeping with FHC's "no censorship" policy, this topic is being moved out of the party thread to an educational venue for those who, for whatever reason, wish to know more about the "Bad Old Days".
Personally, I wish to forget them-but I didn't "live" them- so my opinion really doesn't matter.
The facts are not always pleasant.
m
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forums.delphiforums.com/generichcvtx

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: 5 years 5 months ago by mgalbrai.
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The Horror of Interferon: WARNING: Very Disturbing Content! 5 years 5 months ago #14981

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I have somewhat fond memories of using Interferon first time round. I was practice teaching at that time (change in career thing that never really went ahead long term). All very odd for me injecting this stuff into my self around my belly.

Main side effect was feeling like I had a hangover. Not a bad thing as I had well practiced this in my earlier youthful days anyway. The main problem was my appearance as being that of a man sweating like a pig in front of primary aged school kids. Continued this for a number of weeks until the medicos discovered it did not make any difference to the virus at all, so I quit.

The combination stuff was quite different to say the least. Side effects that much I very soon wondered if I could keep holding down a job! I DO NOT have fond memories of that stuff at all. Found I could not cope, and quit - for better or worse.

Mike, you being a teacher of things past, you may try to think this is combo stuff as (hopefully now was) probably the modern day chemical equivalent of medical practices during the American Civil War.

Yours

Jeff

P.S. They also tried me out on these Chinese herbal pills. They had a rather nice coating and were the size of a marble. The trick was to suck on them only just long enough to still have some coating to insulate your taste buds from the inner bits that both looked and tasted like dried dog shit. Taking them also turned my own shit into little pebbles as well. Eventually they found this made no difference and the medicos swiped what was left so I had to buy Mentos as a sugar hit replacement. I will be forever grateful to Hep C for giving me the opportunity to experience all this.
GT3a 1990 Failed Inter 1998, comb in 2000. HCC 2012
Started 24/52 Sof/Dac 27th October 2015.
1. Bloods 2 October 2015: AST - 165 (20-40), ALT - 265 (5-40), GGT 189 (5-50)
2, Bloods 20 November 2015: ALT etc normal; VL 19
3. Bloods 8 January 2016: AST - 40, ALT - 59, GGT 48 VL RNA UND
4. EOT 12 April 2016 - blood tests: all is well, CT scan: okay
5. AFP 11 June 2016: 4 ref< 11
6. VL July 2016: DET
7. Oct16 start treat - June17 UND
8. Jun 18, lfts okay, platelets a bit low.
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The Horror of Interferon: WARNING: Very Disturbing Content! 5 years 5 months ago #14982

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Hi Fretboard,

I replied to Mike's post first while my black sense of humour was still beating.

Don't know where you fished this clip out from, but THANKS, THANKS THANKS!

Made me feel that I was not alone.

As an accomplished 'non coper' I never wanted sympathy, just understanding.

Yours

Jeff
GT3a 1990 Failed Inter 1998, comb in 2000. HCC 2012
Started 24/52 Sof/Dac 27th October 2015.
1. Bloods 2 October 2015: AST - 165 (20-40), ALT - 265 (5-40), GGT 189 (5-50)
2, Bloods 20 November 2015: ALT etc normal; VL 19
3. Bloods 8 January 2016: AST - 40, ALT - 59, GGT 48 VL RNA UND
4. EOT 12 April 2016 - blood tests: all is well, CT scan: okay
5. AFP 11 June 2016: 4 ref< 11
6. VL July 2016: DET
7. Oct16 start treat - June17 UND
8. Jun 18, lfts okay, platelets a bit low.
Last Edit: 5 years 5 months ago by sabrecat.
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The Horror of Interferon: WARNING: Very Disturbing Content! 5 years 5 months ago #14990

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mgalbrai wrote:
I will never know what it was like to undergo the hell of interferon-based treatment.
In keeping with FHC's "no censorship" policy, this topic is being moved out of the party thread to an educational venue for those who, for whatever reason, wish to know more about the "Bad Old Days".
m

Cool! Much appreciated!! Yeah I only lasted 5 weeks on that nasty ass tx, I felt like a wuss for having to stop but I was glad I did, Riba on top of the Interferon was driving me bonkers!!!

G1a dx'd in 1992, Biopsy F2 VL 8mill +. Tried tx with Interferon/Riba, back in 2008 didn't last long it felt horribly ugly!! I stopped tx, after 5 weeks!!
Started tx 6/1/16 with Harvoni.
12 Month Labs= UND
Last Edit: 5 years 5 months ago by fretboard. Reason: Added info
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The Horror of Interferon: WARNING: Very Disturbing Content! 5 years 5 months ago #15010

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Let's not forget the medicos who underwent so much training in their profession on the way though, almost like some 'rites of passage' thing as Residents in hospitals, catching every disease known to man from patients coughing and wheezing along the way, seeing things we would not want to see, just to reach a 'pinnacle' of their chose speciality within their profession; And then having to prescribe that stuff - and watching it not work a lot of the time.

Hope the new DAA's make it a distant memory for everyone that can be assigned to the dustbin ASAP.

Jeff
GT3a 1990 Failed Inter 1998, comb in 2000. HCC 2012
Started 24/52 Sof/Dac 27th October 2015.
1. Bloods 2 October 2015: AST - 165 (20-40), ALT - 265 (5-40), GGT 189 (5-50)
2, Bloods 20 November 2015: ALT etc normal; VL 19
3. Bloods 8 January 2016: AST - 40, ALT - 59, GGT 48 VL RNA UND
4. EOT 12 April 2016 - blood tests: all is well, CT scan: okay
5. AFP 11 June 2016: 4 ref< 11
6. VL July 2016: DET
7. Oct16 start treat - June17 UND
8. Jun 18, lfts okay, platelets a bit low.
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The Horror of Interferon: WARNING: Very Disturbing Content! 5 years 5 months ago #15013

I am so grateful that I did not have to do interferon - it scares me so much, kudos goes to all the warriors here that had no choice but to tread this path of nightmares and pain. Im so happy that these new drugs are around to treat us. Shame on Gilead and their pricing that people are STILL having to be treated with interferon.
SVR 24
Last Edit: 5 years 5 months ago by Tina-Hill-facebook.
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The Horror of Interferon: WARNING: Very Disturbing Content! 5 years 5 months ago #15017

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It WAS a nightmare treatment, pure hell, I persisted though because I was so determined to get rid of the virus.
Over many years I did four treatments on the evil stuff. :sick:

The after affects aren't good either.
But at least I'm finally hep free, but at a cost.

I had some friends whose livers came out worse from the tx, it was that toxic.
Horrible memories from those desperate times.

it was so hard putting that needle into your tummy knowing how it was going to make you feel.


That's why I was so against my young son J having it, I knew how bad it was.

My son's liver guy seemed frustrated with me because I kept saying "no" to the Ifn & Ribas.

....Then along came Dr Freeman....Our night in shiny armour :cheer: :cheer:

SO WORTH the wait.
Thank God for Dr James. :)
My J is now hep free & about to have his post tx 12 wk bloods. :P

x
J the young dragon slayer is:
HepC 1a since birth
Male aged 15
VL 2000000
Started Twinvir/ 10-11-15-then Sof/led.
NO sides so far !
after one week VL : 37
after 4 wks VL : UND !
EOT 2/2/16 UND.!
4 wks. post tx results....pending....
7/3/16 VL result : 4 week post tx: SVR !
12 weeks SVR !
24 wks SVR yeeaa!!
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The Horror of Interferon: WARNING: Very Disturbing Content! 5 years 5 months ago #15025

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Agreed the Peg/Ifn was scary stuff but for me it was the ribavirin that wore me down. Being a slow responder I proceeded to up my riba dose from 1000mg to 1500mg daily at 12 weeks. By that point Id lost 10kg and was all of 68kg so overdosing riba big time. The IFN wasnt too bad until 72 hours after shot, then it was flu like. By the end of my 63 week tx I had a neut count of 0.2 and haemoglobin of 8. I was mentally and physically twisted and relapsed soon after. Really took 12 months to recover, i lost my short sight and any remaining youthful glow lol. Mate there were folk over at medhelp doing 72 weeks up to 108 weeks and multiple times. Fuck it would never have done that shit again. Em
Geno 1b F2/3 snce early 80s. Treated in 2008_9 for 63 weeks on INF/Riba. Commence Sof/Dac on 6 October 2015 and completed 18 weeks of tx. UND at 4-6 weeks, UND at EOT, SVR 2, SVR 6 and SVR 12 on 6 May 2016.
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The Horror of Interferon: WARNING: Very Disturbing Content! 5 years 5 months ago #15026

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But hey sof/dac was like a vacation to me and could live on that shit if needed. Probably end up growing a tail or titties or something lol. Em
Geno 1b F2/3 snce early 80s. Treated in 2008_9 for 63 weeks on INF/Riba. Commence Sof/Dac on 6 October 2015 and completed 18 weeks of tx. UND at 4-6 weeks, UND at EOT, SVR 2, SVR 6 and SVR 12 on 6 May 2016.
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The Horror of Interferon: WARNING: Very Disturbing Content! 5 years 5 months ago #15036

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Can relate to both posts Emilio, I won't watch the film, it is fresh enough in my mind, bits of me broke but it didn't kill me and made me strong! No regrets. For me in ways it was easier to manage life on the old style every second day interferon, although the sides were more intense, because I could time the onset of the symptoms pretty well exactly from taking it- shiver and shake through the night when kids were in bed etc. But the peg/intf, I was never quite sure when it would hit. I never got used to either sort, every dose was like the first.
But like you, sof dac is no problem, I could live on it happily, I hope I feel this good when I finish next week!
Genotype 3 30 years, 2x treatment interferon/ribavirin non responder. Cirrhosis 17 years. Fibroscan, decompensating, 40 down to 22 by 29/3/16- now down to 6.5, normal, no cirrhosis. Started Buyers Club Sof/Dac 14 Nov 15. SVR 12 29/0716
Last Edit: 5 years 5 months ago by Hazel.
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The Horror of Interferon: WARNING: Very Disturbing Content! 5 years 5 months ago #15061

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Hi Hazel

Definitely no regrets. It was a 50/50 chance and i wanted to roll the dice. Em
Geno 1b F2/3 snce early 80s. Treated in 2008_9 for 63 weeks on INF/Riba. Commence Sof/Dac on 6 October 2015 and completed 18 weeks of tx. UND at 4-6 weeks, UND at EOT, SVR 2, SVR 6 and SVR 12 on 6 May 2016.
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The Horror of Interferon: WARNING: Very Disturbing Content! 5 years 5 months ago #15669

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Yes. :) I relapsed after 48 week of peg-rib at 2006 with compensated F4 and 1b. Fortunately, there were no very serious side effects during therapy. There was an opportunity to undergo peg-telaprevir-riba therapy several years ago and many people recommended me to do this due to F4... My doc said like that - "if you want, you may try peg-telaprevir-rib, but your case is hard to treat". Liver function was stable and i decided did not undergo this therapy... Some clinical trials show substantional mortality at therapy with telaprevir and F4 and there was not clear for me - whether possible benefits of treatment with telaprevir outweigh its risks of harm or not. Unfortunately, one guy died on russian-spoken forum during telaprevir-based therapy, probably without cirrhosis. Dr.Koretz wrote in 2013, before the wide acceptance of interferon-free regimens:
Given the natural history of chronic hepatitis C, as well as what we know therapy accomplishes, it is very difficult to justify a policy for routinely treating such patients to prevent decompensated liver disease. The surrogate outcomes were not valid in the one occasion when validation information was available. The treatment has not been proven to be efficacious with regard to preventing clinically important disease, it is expensive, and it causes substantial morbidity (including death). It is an inappropriate clinical decision to prescribe a toxic therapy (especially an expensive one) that has never been shown to provide clinical benefit in properly-done randomized trials.
(www.news-medical.net/health/Hepatitis-C-...d-possible-harm.aspx)

Now planning to try treatment with indian generics. :)
Probably infected in 1977
2005 - diagnosed with HCV 1b, compensated F4, 15 mln viral load, ALT 320
2005-2006 - PegIFN/rib 48 weeks treatment, relapse
2016 - compensated F4, MELD 8-9, ALT 100-160
2018 - compensated F4, MELD 8, ALT 91
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The Horror of Interferon: WARNING: Very Disturbing Content! 5 years 5 months ago #15672

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Sof+Led cure rates are very good for 1b, but with cirrhosis and past failure longer than 12 week treatment might be wise.
YMMV
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The Horror of Interferon: WARNING: Very Disturbing Content! 5 years 5 months ago #15675

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Yes, i am planning 24 weeks. Some negative predictors may slightly lower SVR rate for me - for example, SVR rate for sof-led with IL28b TT is near 90%, instead of near 100% for IL28b CC, according to one report from EASL-2016.
Probably infected in 1977
2005 - diagnosed with HCV 1b, compensated F4, 15 mln viral load, ALT 320
2005-2006 - PegIFN/rib 48 weeks treatment, relapse
2016 - compensated F4, MELD 8-9, ALT 100-160
2018 - compensated F4, MELD 8, ALT 91
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