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TOPIC: frigtened by possible severe irreversible side effects

frigtened by possible severe irreversible side effects 1 year 6 months ago #21937

  • countless
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I been diagnosed during routine scan ( I am a healthcare worker) 20 days ago. I had to immediately stop working (as I perform exposure prone procedures at my work). I could not tell coworkers or friends what exactly is wrong with me as this information in public domain could easily be the end of my career. Today I had a fibroscan with readings of 12.4 and 12.6 (doctor had 2 goes at it as he was surprised by so high reading given all my blood tests are normal) which puts me I believe between "severe" and " significant " fibrosis.
I was so happy there are medications with high success rate, I had a hope I will take them , wait for 6 months to have SVR and will be able to get back to work and all this will be behind me as if it was a bad dream and then I come across this lloydwright.org/messages/Vision-Loss-Gro...-Side-Effect-Sovaldi
on the internet. They say relapses are far more common than declared and side effects are far more severe including vision loss.
Please please someone tell me something that will make me feel better...
Diagnosed September 2016.
1b
ALAT in 40s.
VL 460 000
Fibroscan 12.5
Start of treatment 18/10/16
Wk 2 VL 145
Wk 4 VL detected unquantifiable
Wk 8 VL detected unquantifiable
Wk 12 undetected
week 30 after eot - undetected
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frigtened by possible severe irreversible side effects 1 year 6 months ago #21938

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countless wrote:
I been diagnosed during routine scan ( I am a healthcare worker) 20 days ago. I had to immediately stop working (as I perform exposure prone procedures at my work). I could not tell coworkers or friends what exactly is wrong with me as this information in public domain could easily be the end of my career. Today I had a fibroscan with readings of 12.4 and 12.6 (doctor had 2 goes at it as he was surprised by so high reading given all my blood tests are normal) which puts me I believe between "severe" and " significant " fibrosis.
I was so happy there are medications with high success rate, I had a hope I will take them , wait for 6 months to have SVR and will be able to get back to work and all this will be behind me as if it was a bad dream and then I come across this lloydwright.org/messages/Vision-Loss-Gro...-Side-Effect-Sovaldi
on the internet. They say relapses are far more common than declared and side effects are far more severe including vision loss.
Please please someone tell me something that will make me feel better...


lloydwright is a scam artist. He is in the business of selling useless supplements. His videos, blog etc are filled with half truths, exaggerations and outright lies. I hate that SOB. He is preying on ignorant and desperate people. All medications have side effects. They have to list all of them. Some maybe severe but maybe less then 1% of the tens of millions that take it will get that side effect but they have to tell you about it.
Genotype 1A
ALT 473
AST 226
Virus Load 3,119,030
Results as of May-2016
5 week viral load/undetected as of 12/02/2016
Liver Biopsy Results from Feb 2013
Portal/Periportal chronic inflammation and mild interface hepatitis (Grade 2)
Focal Lobular chronic inflammation (Grade 1)
Portal/Periportal fibrosis (stage 1-2 trichrome and reticulin stains utilized)
Negative Iron stains.
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frigtened by possible severe irreversible side effects 1 year 6 months ago #21939

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Hi Countless, I am so sorry to read about your diagnosis and loss of work. I'm sure there are quite a few of us here that are in jobs that we can't tell them about our condition and understand your concerns.

Re vision loss, I have never read anything like this re the new medicines. I had a fear of this when healthcare authorities were still doling out Interferon, but this has not been reported by anyone on here on the new medicines as far as I know.

Do you have an eye condition such as Glaucoma or something that concerns you? This were definate concerns regarding eyes with the old meds I know.

Hopefully, someone more qualified to calm your fears will drop by soon .

Meanwhile, I would try to relax a bit if you can? I know, having been there myself, you must be still shocked from your diagnosis, Thousands have taken these new medicines and as I say, I haven't heard anything to this effect thus far.

Warm wishes to you and hoping you have your fears calmed soon.

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
Last Edit: 1 year 6 months ago by LondonGirl.
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frigtened by possible severe irreversible side effects 1 year 6 months ago #21941

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Most people who complain about severe side effects have taking the medication for 6 months versus the standard 3 months of dosing. Especially with the complaint to the eye issues.
Believe me I am not dismissing your concerns. Just watch where you get your information from. I hate seeing people taking advantage of.
You tend to hear only of the handful of people who had severe side effects. The millions who do treatment with very minimal side effects just go back to there daily lives. You'll always hear from the people who are not feeling well.
I would weigh the risk and rewards of using the medication. If your liver is very damaged as the fibroscore says I would risk it all to get rid of the virus.
Genotype 1A
ALT 473
AST 226
Virus Load 3,119,030
Results as of May-2016
5 week viral load/undetected as of 12/02/2016
Liver Biopsy Results from Feb 2013
Portal/Periportal chronic inflammation and mild interface hepatitis (Grade 2)
Focal Lobular chronic inflammation (Grade 1)
Portal/Periportal fibrosis (stage 1-2 trichrome and reticulin stains utilized)
Negative Iron stains.
Last Edit: 1 year 6 months ago by Tommy.
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frigtened by possible severe irreversible side effects 1 year 6 months ago #21942

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Hi countless,

I did manage to relapse being GT 3 which is a drag to say the least.

My 'severe' side effects during treatment were these:

a) a slight dent in the wallet paying for generic medications.
b) Undetected HCV during treatment.
c) AFT and ALT levels back to normal.
d) fatigue gone.

As for these side effects, now back on treatment and bring it on.

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 16 May 2016: 4 ref <11
6. AFP 11 June 2016: 4 ref< 11
7. VL 4th July 2016: DET
8. ultrasound 12th July 2016 - OK
9. Oct16 start treat - June17 UND
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frigtened by possible severe irreversible side effects 1 year 6 months ago #21943

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Welcome countless,

As Tommy points out Frank Lloyd is in the business of selling supplements. He appears to do so by attempting to instil FUD (fear, uncertainty & doubt) about pharmaceutical medicines in his customers. The Canadian Sovaldi monograph that Marcee quotes in your link does include some vision issues but it is an old monograph from when all the clinical trials used Sovaldi in combination with ribavirin and/or interferon, both of which were known to cause vision problems. So much so that when I participated in a clinical trial using those two (but not Sovaldi) in 2013 I was required to have a full eye checkup for any problems prior to commencing the trial. As with any drugs we take these newer DAAs may have some side effects but so does living with HCV. My experience has been that the reduction in my complications of HCV has greatly outweighed the side effects of the medication.

As far as relapses go, like sabrecat I am one of those but was always considered a difficult to treat patient due to genotype, prior treatment and extent of cirrhosis. I am currently planning my next treatment. :)
But the overall figures for success both on this site and elsewhere are in line with expectations at greater than 90% overall although slightly less than the initial clinical trials indicated. Here is the latest data fixhepc.com/forum/experts-corner/1316-ha...dy-n-4365.html#21770
The thing is, most people move on and start living a life free of hep C and forums once they achieve SVR so those of us who need to retreat can seem to be a greater percentage than we really are.
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
:cheer: :cheer: :cheer:
Last Edit: 1 year 6 months ago by Gaj. Reason: Add data link
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frigtened by possible severe irreversible side effects 1 year 6 months ago #21945

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Thank you for sharing your story and the rather traumatic shock Countless. #love
You are not alone in that experience and yes there are many here who have to be private because of professional reasons sadly. :(
I'm sorry you have heard misleading information about this amazing opportunity to be cured.
I'm a success story of FixHC. I was once a sick and very worn down relapser from interferon and so on, yet these amazing GENERIC medicines have done the job, I am absolutely 100% rebuilding my life HCV free, you can read many people's "signature" at the bottom of our posts to get a snapshot.
Regarding eyes:
In my personal experience and we are all different
Post peginf I was 23 on the pressure test which is borderline to see a specialist
After generic Harvoni I measured 10 and my eye doctor can't believe it!
My eyes have become more healthy!!
On tx I found my eyes were sensitive to harsh sunshine but I just wore sunnies and goggles for water sports.
I wish you well and hope you are treated asap
All the best 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
Last Edit: 1 year 6 months ago by Ariel.
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frigtened by possible severe irreversible side effects 1 year 6 months ago #21949

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Hi again Countless,

Just thought I'd add, that I was on treatment for 26.5 weeks in total and didn't have any eye issues. I'm a very small build too and took 3 medicines for the last 4 weeks, I was prone to tiredness and would nearly pass-out when I needed to sleep, but nothing more. Amazing really I had insomnia pre treatment, so this was also a bonus, In fact, I was nervous about stopping the medicines if anything! I used to get ' eye ache' pre treatment and that has now completely gone.

My Doc told me inflammation can cause alot of issues, when you start taking the medicines they reduce inflammation within a few weeks and so many feel much better quite soon into the treatment because of this.

I was warned that the first week, I may feel midly fluish and was nervous about that, but it never came. I did get a chest infection mid treatment, but I have always been prone to these and we were mid winter in the UK and many people without the virus had chest infections and flu around here.

I found the first month I improved so much and got a spring in my step (previously suffered joint pain) , then as I say a chest infection, antobiotics cleared this up, then the rest if my treatment a gradual improvement, especially noticable was my improvement in mood and I slowly started to engage in life again after being totally withdrawn from life for the last few years.

My feeling is, any side effects are much less severe than having the virus attacking your system all round, untreated things could and most likely will, get worse.

I am so grateful to the good people here, I am waiting on my 12 weeks post tx results, even if I were to relapse, I am SO much better than those dark days pre treatment and my liver function is all within range and fibrosis has gone from 8.7 pre treatment to 4.7 - 5.7 at end of treatment, there's no doubt I am also a much happier person all round too.

I hope this info gives you the short version of how the treatment has been for me, there is much reading in patient experience here, and can take some time to get through :)

Best wishes, 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
Last Edit: 1 year 6 months ago by LondonGirl.
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frigtened by possible severe irreversible side effects 1 year 6 months ago #21954

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Thank you all
Just to clarify - treating it is the only option I have considered. It just is s scary thing to face - loosing one's eyesight.
I understand about forums from which people who put the issue behind them move on. Exactly 12 years ago(there must be something about that Chinese zodiacal 13 year cycle !) I was diagnosed with cancer of stage 3 being single mother of 2 yo child, no savings and no right to public funds (could get medical help for free though). I swear it was easier for me back then! Or may be I forgotten just how bad it was... I digress - so back then I been on the forum of fellow unlucky ones for quite a few years. Then they changed something with the website so I could not log in with my username so I never got back and stopped replying questions , suggesting options and giving hope that that fully functional happy survival for many years is there.
Thank you again for your kind words , I guess you all been in similar situation , I been sobbing for the last couple of hours(a very unpleasant phone call re possible other job for me to do was the last straw) and that with me being " as hard as nails" and " as determined as a train" does not happen often so sympathetic ears are very appreciated.
Diagnosed September 2016.
1b
ALAT in 40s.
VL 460 000
Fibroscan 12.5
Start of treatment 18/10/16
Wk 2 VL 145
Wk 4 VL detected unquantifiable
Wk 8 VL detected unquantifiable
Wk 12 undetected
week 30 after eot - undetected
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frigtened by possible severe irreversible side effects 1 year 6 months ago #21956

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Mr Wright is 100% in business to sell supplements. Please understand since theDAA's came onto the scene Mr Wright had to move from Malibu to Arizona, 2-3 years ago, as the downfall in business hurt his company. This is due to HVC medications hitting him hard and at 60 something years old he faced big dangers of losing his standard of life and too old to make a comeback to previous standards of living.
Mr Wright was a pioneer in HCV but it turned from a happy story of helping people to a business story of making money. I feel very sorry for Mr Wright in a way. His legacy could have continued forward telling and writing books about his way to eradicate this ugly disease and he just got caught up in his own hype and took it to a business which IMO, was his downfall. He could have made just as much by writing and telling his story, again IMO.
I hope he can "wright" the ship and stick to other areas of supplements or by selling supplements to enhance the liver and it miraculous rebuilding process unlike any other organ in our body.

Moral: you cannot mix business with a moral duty to protect and serve the people whom you've intended to help. That leads to an agenda mixed with money, which most always ends up on the wrong end of you goal.

In good health to you.
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!!!
Last Edit: 1 year 6 months ago by Sven. Reason: Grammar
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frigtened by possible severe irreversible side effects 1 year 6 months ago #21961

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#flower #flower #flower #flower #flower

A bunch of flower for countless
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
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frigtened by possible severe irreversible side effects 1 year 6 months ago #21964

There are very few side-effects to the DAAs and the mild ones that some people get are short-lived. Success rates, as Dr F points out elsewhere on this forum, are around 95% in both clinical trials and real world treatment. This is most unusual in science - clinical trials nearly always have higher success rates than real world treatments for a range of reasons. This says to me that DAAs work. Period.

Why have you had to stop your job? Isn't there employment law that protects you against this discrimination. I've heard of surgeons with HCV continuing to work. As long as your employers know, your occupational health team know and you take precautions (i.e. wearing surgical gloves) the chances of you getting cut and blood making contact with the patient's blood are tiny. And, beyond that, surely there are other non-patient contact roles you could fill in the meantime.
45 yo male; UK; HCV since 1996; G4; F2-3 (fibroscan score 9.1);
Null responder interferon/ribavirin 2008;
4/16 Harvoni 8 weeks; Pre-tx VL 2.1 million; week 4 VL 269; EOT UND; but...
6/16 Tx extended w/ generic sof/dac x 12 weeks due to concerns around my slow response to Harvoni. UND at end of 2nd round of treatment and EOT+4.
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frigtened by possible severe irreversible side effects 1 year 6 months ago #21969

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Hello Countless,

Your concerns are valid.

With your level of fibrosis, which is cirrhosis level your prognosis is not good. The 10 year mortality with SVR is under 10% and plateauing, whereas without SVR it is nearly 30% and still rising. That in an off itself is probably more than enough reason to treat.




From the professional point of view you need to be cured to work, so that is a reason to treat unless you want to change out of exposure prone procedures which may or may not be practical or desirable.

In terms of cure rate we know that the trial results always exagerate the success rates when compared to what we see in the real world. The VA did a study of over 4000 treatment naive patients taking Gilead branded Harvoni and despite the assertion from the ION trials that the success should have been 97% the VA (an independent umpire if you like) found that cure rates were 91-92%.

fixhepc.com/forum/experts-corner/1316-ha...va-study-n-4365.html

So the real failure rate is more like 9% than 3% in the easiest patients to treat when it's done on a large scale real world population. We see similar results with generics, and this is the worldwide experience. Still a 1:11 chance of failure is 10 chances of success, 1 of failure. Good odds.

The DAA drugs have now been given to 1 million in Egypt (Pharco generics) and 1 million in the rest of the world. If there were any common adverse effects we would know about them now. The experience here is that almost all people have very few issues either on treatment or after treatment. There have been over 2000 people here report their personal experience and there is no censorship to hide the truth.

A Freedom of Information request to the FDA 6 months or so ago turned up this list of adverse drug reactions:

fixhepc.com/forum/experts-corner/786-off...-effect-reports.html

20.8% (158/759) Headache
18.1% (137/759) Fatigue
5.9% (45/759) Insomnia
5.7% (43/759) Nausea
5.7% (43/759) Diarrhoea
3.7% (28/759) Rash
3.2% (24/759) Anxiety
2.8% (21/759) Vomiting
2.0% (15/759) Nasopharyngitis
[snip]

Which is a near perfect fit with the "gut feel" we see in the real world. So while some patients do get side effects these are mostly low grade and transient. We observe that for almost all drugs we give if a patient is having problems with that drug taking them off it allows for resolution over time. This certainly seems to be the case for DAAs.

But for me, ultimately I apply the mum test. If this patient was my mum what would I recommend? For you the reasons to treat are the professional implications of not treating, and your current advanced stage of fibrosis.

There will always be better drugs in the future. Pick any disease, at any time in history and you can see that's the case. While the new drugs may be better in terms of results we don't know until a large group has taken them just how well they work, and what, if any, long term issues, or unusual issues will happen. What we have now works well and is generally safe. The risks of you treating now are almost certainly minuscule compared to the risks of just waiting around - physical health risks, mental health risks, professional risks.

The decision to treat can be lonely and must sit comfortably with you, but if you were my mum.....
YMMV
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frigtened by possible severe irreversible side effects 1 year 6 months ago #21971

  • countless
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Thank you very much for your clear and informative post, james freeman.
Rememberdecember , I had to stop work immediately because of department of health policy. There is no arguing with that one. On top of it I am self employed so sick payment is doubtful and not going to be for long.
Nature of my work is such that eliminating EPPs would present a major drag for proper functioning of one company I work for and would been plain impossible with two others. Besides the level of publicity the issue would get while organising limited duties would be catastrofic as well . Apart from it it would mean arguing with a department of health that the directive they have can be twicked if EPPs eliminated. Even if I am successful in it which is a no mean fit as you imagine it will take so long to achieve I would likely either be SVR by that time or dead. By the way the rules say I have to wait 6 months after finishing treatment and achieving negative pcr to have another negative test and only then I would be allowed to work...
Diagnosed September 2016.
1b
ALAT in 40s.
VL 460 000
Fibroscan 12.5
Start of treatment 18/10/16
Wk 2 VL 145
Wk 4 VL detected unquantifiable
Wk 8 VL detected unquantifiable
Wk 12 undetected
week 30 after eot - undetected
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frigtened by possible severe irreversible side effects 1 year 6 months ago #21973

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It's a toughie Countless isn't it, especially when you are still in shock from diagnosis.
When self-employed it's extremely hard to be off sick.

I'm sure once you're on treatment, you will feel improved and will be able to deal with looking for new work and all that comes with it better. I was a big time hermit after diagnosis, mostly my communication was just the good folk here, also SE and managed to keep working throughout with fake smiley face! I'd get out of bed some days, work, and then go straight back to bed immediately after, as time went on, on treatment, things slowly improved and now, 12 weeks post treatment I am slowly starting to engage with the world once again. Thankfully.

I also felt like I needed to rest and help my body heal during treatment, I hope you can find some work that isn't too physically taxing? but really, work was very physically doable during treatment. The good thing was, that working really took my mind of it all, prior to treating, during and after :)

Wishing you all the very best to get started soon with treatment and find something suitable to keep the pennies coming in.

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
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