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TOPIC: Worried about treatment

Worried about treatment 1 year 4 months ago #26286

  • hopey1
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Greetings,
I am new to this forum and I am on my 2nd day of Harvoni. I was wondering if anybody here knows what is the %age of Harvoni patients that are doing well 1-2 years post treatment and what's the %age that have serious health issues that they did not have prior to treatment?
I have read multiple complaints from patients (on various websites) that have undergone treatment who have cataracts, heart problems, serious depression etc. .... that they did not have pre treatment. Many seem to say they wish they had just lived as long as they could with the hepC and never started treatment. I am concerned not only for myself but for my 23 y/o daughter who is scheduled to start treatment in about a week or so. There is so much that we dont know about this drug and what it might do.
I understand the perspective that our bodies take some time to readjust after the treatment however...
eyesight? heart problems? I'm just concerned and ...what are some of the lingering effects of this treatment?
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Worried about treatment 1 year 4 months ago #26291

  • DrJames
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Hello hopey1,

The vast majority of patients - as in 95%+ are the same, or significantly better after treatment. Most patients over 50 say "I have not felt this good in 20 years"

Lucinda Porter and I did an analysis of the FDA FAERS database which covers 48,000+ side effect reports for these drugs. There is nothing unusual (or hidden).

I have about 3000 patients which is almost certainly the biggest independent sample of any doctor in the world and have seen nothing of great concern.

A significant problem with online forums is selection bias. If you look at this forum and search for posts before 2016 what you will see is hundreds of names of people you don't see here now. They have been cured of their Hep C and moved on so their voices are lost.

Another significant problem is "post hoc ergo propter hoc" which is Latin for: "after this, therefore because of this"). It is a logical fallacy that states "Since event Y followed event X, event Y must have been caused by event X." - the average age of patients being treated is 55 so there is an inevitability that the diseases of ageing are going to appear before/during/after treatment.

You may find this post of mine from last year useful as it goes into much more detail:

fixhepc.com/support-forum/media-news/155...ebbie-romesburg.html
YMMV
Last Edit: 1 year 4 months ago by DrJames.
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Worried about treatment 1 year 4 months ago #26298

  • Mar
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Very good explanation Dr James, makes a lot of sense :+1:
Last Edit: 1 year 4 months ago by Mar.
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Worried about treatment 1 year 4 months ago #26299

  • Songbird
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Hello hopey

Welcome andCongrats on starting your treatment and your daughter too.
The Doctor certainly makes a good point about folks being cured and they move on with their lives hepc free with no lasting side effects, not to be heard from again

People that do possibly have some issues will often post on forums to see if there are others having the same so therefore it looks to someone new that everyone struggles with these issues.
Personally , I am doing my second treatment(1st one lasting 48 wks. and now just finishing 16 and have no adverse issues to really speak of).
Having said that the long term effects are somewhat unknown as these meds being relatively new there has been no “long term” yet.
However as we all know the side effects of not curing HCV can adversely affect one terribly

Good luck!

S
Diagnosed: 2001 GT1a , HCV since mid-70's.
Biopsy 2010 F1
Fibroscan and Fibrosure 2018 F2

Treated in trial 2010 with Dac/Peg/ Riba and Relapsed.

Resistance test 2017. Have Ns5a Rav Q30r/H58d enhanced from doing Dac.

Start Tx. Jan 18th/18 w/ Vosevi /Riba 12wks. plus 6 wks.Viekira Pak +Sof/Riba(From Dr Freeman @GP2U)

VL start: 1.6mill.ALT 125 AST 88
Wk. 4 Det @LLOQ <15.
VL Wk.8 UND Alt &Ast 22
Wk. 12 UND
EOT:UND

EOT+12 >>>UND (SVR12)! ALT11 AST13
Nov6/18 SVR 24!
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Worried about treatment 1 year 4 months ago #26305

  • beahavan
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I finished treatment with Harvoni in Nov 2016. My numbers kept getting better and my Creatinine dropped from .93 to ,83. Suddenly the numbers began to climb over 6 months to 1.04 and I had a 6 wk bout of diarrhea. I had a difficult time eating with jaw pain. I had an infected tooth root! I have just finished a root canal and am about to get my permanent crown. I had no idea my tooth was going bad. I had been to the dentist several months before. I didn't know what was wrong and my imagination went wild. I will be tested for Creatinine again in June. I hope it will go down. I am 67 and am dealing with aging issues. From Nov 2016 to August 2017 my numbers kept getting better. That's when my tooth problem began. The Harvoni turned my heath around but don't lose sight of other heath issues.
G4
F0-F1
diagnosed in 2006
Tx naive
Treatment started 8/12/16, Ledipasvir/ Sofosbuvir (Harvoni) supplied by Monkmed
8/1/16 ALT 36 AST 40
1/4/17 ALT 17 AST 21
7/13/17 ALT 17 AST 25
12/28/17 ALT 22 AST26
2/22/18 ALT 19 AST 25
7/10/18 ALT 26 AST 32
1/8/19 ALT 16 AST 28
7/2/19 ALT 16 AST 26
Hcv Rna, Quantitative Real Time Pcr <15 NOT DETECTED (IU/mL) NOT DETECTED
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Worried about treatment 1 year 4 months ago #26307

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but don't lose sight of other heath issues

This is really good advice beahaven. Treatment for Hep C provides zero protection from every other disease under the sun (except Hep C) so if you've stopped the pills and are SVR and there is something odd happening it should be checked out.
YMMV
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Worried about treatment 1 year 4 months ago #26308

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I would like to point out that the dental cost for this one tooth is $1,650. This is roughly the same as the Harvoni from Monk Med that saved my life. I will be eternally grateful to everyone here at fixhepc.
G4
F0-F1
diagnosed in 2006
Tx naive
Treatment started 8/12/16, Ledipasvir/ Sofosbuvir (Harvoni) supplied by Monkmed
8/1/16 ALT 36 AST 40
1/4/17 ALT 17 AST 21
7/13/17 ALT 17 AST 25
12/28/17 ALT 22 AST26
2/22/18 ALT 19 AST 25
7/10/18 ALT 26 AST 32
1/8/19 ALT 16 AST 28
7/2/19 ALT 16 AST 26
Hcv Rna, Quantitative Real Time Pcr <15 NOT DETECTED (IU/mL) NOT DETECTED
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Worried about treatment 1 year 4 months ago #26318

  • Ariel
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Dear Beahaven
I’m sporting very beautiful expensive chompers a bridge on one side post tx and yep a couple of root canals that were emergency and some other fix up stuff. After all the meds, peginf, riba, corticosteroids, Sof/led I had mouth thrush treated for ages and then bam! Abscesses times two! I paid for my smile and no falseys I am younger than you but I don’t think it matters about age. I’m very proud of my beautiful smile back and every time I smile it’s a reminder of how lucky I am! Yes it cost about $10,000 AUS but I have health insurance which covered half and I am just happy to be HCV free. I haven’t had any further teeth issues since this happened shortly after SVR 24.
I’m sure others have had teeth issues well actually I know they have!
Good luck paying for the dentists next overseas five star holiday haha we all know that feeling huh!
Sending goodvibes from Ariel
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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Worried about treatment 1 year 4 months ago #26319

  • Ariel
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DrJames wrote:


A significant problem with online forums is selection bias. If you look at this forum and search for posts before 2016 what you will see is hundreds of names of people you don't see here now. They have been cured of their Hep C and moved on so their voices are lost.

ml

Yes so true! Apart from a few of we first group of patients of FHC who just keep swimming on by and checking in on this school of fish, cos it’s cool as a dish, and I have no wish to forget this ‘mish’, to free all peeps from the tidal wave and encourage all their lives to save.

Rest In Peace my dear dear GAJ in your honour I will always swim by the FHC ocean and always follow your impeccable example to the best of my mermaid ability.

The time to treat is NOW it’s important and FHC is the place you can save your life. I did. You can too.

Happy Splashes
Ariel
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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Worried about treatment 1 year 3 months ago #26435

  • Jimmy6429
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Im 2 years post tx, all good, didnt use harvoni, sof/dac 3 months, im an old fart, no issues apart from expected things at my age, getting rid of the virus has let the rest of my body reveal what i need to address is all, generics are gift, cheers, jim,
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