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TOPIC: Red skin

Red skin 5 years 3 months ago #19913

  • JamesF
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Has anyone noticed a reddening of their skin on Harvoni?
I'm pale skinned and am on day 6 of treatment. Since day 3 I noticed my skin is red but apart from that I feel great

.
2 wk: VL UND, ALT 30
37K RNA, ALT 486
Tx begin 20 July 2016
Tx naive
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Red skin 5 years 3 months ago #19915

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Easily sunburnt. I experienced that
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Red skin 5 years 3 months ago #19917

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Forget to mention that I wasn't in the sun and it doesn't feel like sunburn.
2 wk: VL UND, ALT 30
37K RNA, ALT 486
Tx begin 20 July 2016
Tx naive
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Red skin 5 years 3 months ago #19924

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Interesting. What are the white lines all about?

If you're otherwise well I would not worry about it and just keep an eye on things. If it gets worse.....

Rashes and stomach upset are the two commonest drug reactions
YMMV
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Red skin 5 years 3 months ago #19927

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The White area is where I pressed my fingers in my skin. The white disappears in 2 seconds.
In the meantime my consultant has also advised that I monitor and let her know if I see a worsening or change.

Thanks for your advice.
2 wk: VL UND, ALT 30
37K RNA, ALT 486
Tx begin 20 July 2016
Tx naive
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Red skin 5 years 3 months ago #19928

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I started branded Harvoni treatment in the middle of March this year in Sydney Australia. Early autumn. I swim outdoors (in the ocean) in the early morning, early enough to not apply sunblock at that time of year (7am)
Did not experience any skin redness during my treatment
Genotype 1a
Diagnosed in 2004, had HCV for all my adult life. Until 2016!!!!
Harvoni treatment, started 19 March 2016
4 week results Bilirubin 12 down from 14 pre treatment,
Gamma 25 down from 52, ALT 19 down from 63, AST 19 down from 47,
VL <15 down from a lazy 6 million or so

EOT Results
Bilirubin 10, GGT 18, ALT 19, AST 21, VL UND

12 Weeks post EOT
Bilirubin 11, GGT 16, ALT 22, AST 20, VL UND
Cured baby
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Red skin 5 years 3 months ago #19933

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One of the doctors on Research Gate says that since sofosbuvir is a 5fluoro uracil- like compound (5FU is a chemotherapy drug) then you can expect that side effects would be the same although in a much lesser degree, all side effects listed for 5FU are likely to appear....(and side effects include skin redness, plus delayed cancers and cardiac problems.)

Here's the conversation
www.researchgate.net/post/any_suggested_...ffects_of_sofosbuvir

P
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Red skin 5 years 3 months ago #19935

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I'm questioning the value of your post, Price.
Your quote is very selective. Professor Ponzetto whom you are quoting says that the side effects are more likely in a certain compromised subset of individuals. He also says its a 5-FU like (as in similar to) compound with far lower side effects.
Enough of the scare mongering. Please. :angry:
Genotype 1a
Diagnosed in 2004, had HCV for all my adult life. Until 2016!!!!
Harvoni treatment, started 19 March 2016
4 week results Bilirubin 12 down from 14 pre treatment,
Gamma 25 down from 52, ALT 19 down from 63, AST 19 down from 47,
VL <15 down from a lazy 6 million or so

EOT Results
Bilirubin 10, GGT 18, ALT 19, AST 21, VL UND

12 Weeks post EOT
Bilirubin 11, GGT 16, ALT 22, AST 20, VL UND
Cured baby
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Red skin 5 years 2 months ago #19967

  • Price
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I see it a different way Beaches.
As Dr Ponzetto said sof IS a 5fluoro uracil-

"Sofosbuvir is a phosphoramidate prodrug that is metabolized in the liver to β-d-2′-deoxy-2′-α-fluoro-2′-β-C-methyluridine-5′-monophosphate."

www.dovepress.com/changing-the-face-of-h...eviewed-article-DDDT

Knowing exactly what you're taking can help prevent, identify and treat side effects. For example, the literature says that skin redness can be helped by Pyridoxine (Vitamin B6). Obviously, everything should be checked with your doctor.

books.google.com/books?id=CDADMzS0TKUC&p...s%20toxicity&f=false +toxicity&source=bl&ots=dNje7r1NGT&sig=RhgFPgLWtnXjAHO_po-
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Red skin 5 years 2 months ago #19968

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I'd like to know how to moderate the after effects...more than 8 weeks post treatment on Harvoni and I still have prickly skin nerve issues, joint and muscle aches and periodic headaches and exhaustion. Exercise seems to bring on side effects.
Feeling much worse still than I did before meds, and worse than I did during it, although I had some pretty unpleasant rashes and sx then too. At least I could deal with that being temporary. This seems to just go on and on. I am anaemic and Vit D deficient from the meds but my B12 is okay. Kidneys are under strain too. Quite painful!
Sweeping this kind of thing under the carpet doesn't help much. There's clearly a price to pay.
F49HepC25ysGT1a
"mild"
Harvoni 12 wks
Brisbane, Australia
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Red skin 5 years 2 months ago #19974

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Price wrote:
As Dr Ponzetto said sof IS a 5fluoro uracil-

No, he did not! He stated "since it is a 5Fluoro-Uracyl -like compound"

"Is" and "like" are not interchangeable words particularly in this sort of discussion.

"Sofosbuvir is a phosphoramidate prodrug that is metabolized in the liver to β-d-2′-deoxy-2′-α-fluoro-2′-β-C-methyluridine-5′-monophosphate."

www.dovepress.com/changing-the-face-of-h...eviewed-article-DDDT

I just want to make sure that readers realise that while the above quote and citation are fine they are not attributable to A. Ponzetto.

Knowing exactly what you're taking can help prevent, identify and treat side effects. For example, the literature says that skin redness can be helped by Pyridoxine (Vitamin B6). Obviously, everything should be checked with your doctor.

books.google.com/books?id=CDADMzS0TKUC&p...s%20toxicity&f=false +toxicity&source=bl&ots=dNje7r1NGT&sig=RhgFPgLWtnXjAHO_po-

Very true but "knowing exactly" is the important point and Sofosbuvir is not exactly 5Flouro-uracil so you should not be extrapolating treatment from one to the other. Your advice about checking with a doctor is sound.

I would also like to point out that in your original citation A. Ponzetto goes on to comment about the toxic excretions of bacteria (h.pylori) that at least 50% of the human population carries in our digestive systems and also about the levels of chemotherapy type molecules in the food and water most of us eat and drink. My reading of that is that he is not trying to scare us but to point out that many items we ingest carry some very, very small element of risk but many benefits and Sofosbuvir fits in that category.

We know that Sofosbuvir may have some side effects and very occasionally a patient may have more serious adverse events, that has been well documented. However, it does not mean that every event that occurs while on treatment relates to that treatment. In JamesF's instance he has a reddening of the skin, it may be from Sofosbuvir but then again millions of people worldwide get rashes everyday without taking Sofosbuvir. He has wisely sought medical advice and both his specialist and Dr James have suggested monitoring as appropriate at this point, I'll back medical opinion. :)
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: 5 years 2 months ago by Gaj. Reason: Remove "shouting"
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Red skin 5 years 2 months ago #19976

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Thank you Gaj for your very measured and considered reply.

We also need to remember that this is all relative (I mean relative to not having treatment or our only options being peginf which is no option at all), and also that the DAAs have been used for a relatively short time and no one knows what will happen 10 or 20 years down the track.

However.....
For many of us, access to the DAAs means that we DO have those 10 or 20 years and I'll take that any day.

Years I can spend with my family, and who knows, grandkids maybe.
Years I can spend working in my paid and unpaid work
Years of being a bold mermaid
Years of sitting around chewing the fat with my friends
Years of travelling the world and marvelling at the beauty and wonder of this rock in space
And much more besides

Anyone who has not spent many years staring down the barrel of greatly reduced quality of life and ultimately an early death by liver failure or a host of related complications cannot possibly understand what a gift these DAAs are.

We don't need any horsemen (or women) of the apocalypse trying to scare us with medical mumbo jumbo thanks very much.
Genotype 1a
Diagnosed in 2004, had HCV for all my adult life. Until 2016!!!!
Harvoni treatment, started 19 March 2016
4 week results Bilirubin 12 down from 14 pre treatment,
Gamma 25 down from 52, ALT 19 down from 63, AST 19 down from 47,
VL <15 down from a lazy 6 million or so

EOT Results
Bilirubin 10, GGT 18, ALT 19, AST 21, VL UND

12 Weeks post EOT
Bilirubin 11, GGT 16, ALT 22, AST 20, VL UND
Cured baby
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Red skin 5 years 2 months ago #19979

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So if you've got issues with symptoms and side effects and want some suggestions on how to moderate them, then go elsewhere, because this is the land of the magic cure for which we should all be eternally grateful?
I guess I'm not part of the royal We because I'd like to know what the hell to do to pull myself back out of this back slide.
I'm doing all the obvious stuff. I can't see me working again any time soon if I don't improve.
Maybe Price doesn't have any answers but at least she doesn't imagine we've all been eating candy floss.

As for suggesting the side and after effects are a coincidence...lol!
I can pay GPs to look at me like I'm crazy...I don't need that from fellow travellers.
F49HepC25ysGT1a
"mild"
Harvoni 12 wks
Brisbane, Australia
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Red skin 5 years 2 months ago #19983

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Hey FF

I didn't mean to rub it in and if that was the impact of my post I'm sorry.

The vast majority of forum members are not doctors and while they might have compassion they don't have answers unfortunately. Conjecture and guesses, but you don't need that.

Why don't you send a PM to Doctor James or make an appointment with GP2U? I know what you mean about doctors who look at you like you're crazy and that shits me to tears as well, but I don't think you will get that from Doctor James or anyone at GP2U.

I hope that these issues will resolve soon and that all your HCV woes will disappear and you too can dance in the sunshine and rainbows.

#flower #duck
Genotype 1a
Diagnosed in 2004, had HCV for all my adult life. Until 2016!!!!
Harvoni treatment, started 19 March 2016
4 week results Bilirubin 12 down from 14 pre treatment,
Gamma 25 down from 52, ALT 19 down from 63, AST 19 down from 47,
VL <15 down from a lazy 6 million or so

EOT Results
Bilirubin 10, GGT 18, ALT 19, AST 21, VL UND

12 Weeks post EOT
Bilirubin 11, GGT 16, ALT 22, AST 20, VL UND
Cured baby
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Red skin 5 years 2 months ago #19986

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Hi flyingfox66,

I'm sorry to hear you are having issues post treatment. None of my post was in response to yours as I am not qualified nor have the experience or knowledge to to make suggestions regarding your particular symptoms.

However, I do have experience of disbelieving doctors as I am sure do many others here. My suggestion based on that experience would be to seek another, more empathetic opinion.

Edit: beaches probably states it better than me.
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: 5 years 2 months ago by Gaj.
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