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Hep C Discussion Forum -> Post Treatment -> Painful post Harvoni skin issue!
Post Info TOPIC: Painful post Harvoni skin issue!
Canuck


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RE: Painful post Harvoni skin issue!
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Midnight wrote:

Not sure if anyone else has experienced something like this but ever since I ended my Harvoni treatment in March I have been having recurrent and what feels like cold sores inside my nostrils!

Really painful and far worse than a cold sore on the lip as at least I can put some zovirax on those.

I've read about others experiencing hives and other skin complaints following Harvoni but not this.

My hope is that this is just my immune system firing up now that the HCV is hopefully gone (12 week post EOT bloods next Tuesday)...

Anyone else have any post Harvoni issues?

Hi Midnight,

About you skin/nasal thing ... I have no idea, sorry, can't really offer you any thoughts on that, but I could offer to keep you company! Does misery love company? I can commiserate with you on experiencing bothersome "things" about the head and face. I do not think my series of small post-treatment maladies are directly related to my treatment drugs (different regime than you), but I too have been having some mild/minor but irksome post-treatment "things" happen, cold/flu(y) like episodes, then ongoing allergy-like coughs/wheezing and skin things, really annoying recurrent pustuales in my ears, then an ugly abscess smack dab on forehead, that had to be I&D'd, feels like I have become allergic to everything, including elastoplasts and steri-strips!! One small thing after another, with some overlap, some things persist stubbornly, and it gets tiresome. Latest, to join the (standing room only) crowd of nuisances, has been a nice stye on one eye, and (then just for good measure) conjunctivitis in both eyes too! (Some of the other maladies are now letting up tho, and my fingers are crossed that the ear pustuale thingys will finally stay finished). Maybe (in my case) it is just pay-back/karma for not drinking quite enough and not eating quite well enough for my newly cured body. Your nose thing, I don't know why, maybe just unlucky. I have a friend who has and gets herpes simplex regularly, mostly on her lips, but occasionally her nose. So I sympathize with your nose thing!! My hep doc is going to send me to a ENT guy, for what ever good that will do, but, worth an opinion I figure. I kinda liked my own opinion on my problems, which was that I just had an unlucky run lately, and I also really liked Tig's idea too - which went something like ... that my immune system was backfarting (heehee) or something technical like that. 

I do wonder tho, there must be some appropriate prescription ointment than can be ordered for you (to try) for your nose!  

Hopefully for both of us, these are just transient things, we are simply going to adjust and get over these things that plague us - if we can kill C, we can tackle anything! smile C.

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

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Tig


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Cheddy wrote:

 And yes, please! find a cure for Man Flu!

 Man Flu? That doesn't happen to affect the Prostate does it.... no



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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JimmyK


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Cheddy wrote:

  Funny what we learn about each other in this forum.  

 I attribute that to us being "nosy".

noI know I know...



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."
Cheddy


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Also, I agree with Jimmy about the shift in immune focus.  I think that's part of settling back out after treatment.

 And yes, please! find a cure for Man Flu!



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GT2a, VL 681,500, Less than F1, Treatment Naive

12 wks Sovaldi/Ribavirin, SOT 2/25/16, EOT 5/17/16

UND at 2,4,8 and 12 wks during treatment but ribavirin crazy.

ALT/AST normal EOT

SVR12 8/13/2016!!!!!!!!!  I WON!!

EOT 6 Months 11/12/2016  CURED

 
Cheddy


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Hi Midnight.  Funny you should mention it, I don't think I would call my condition cold sores, but I did have a tender and sometimes bloody spot on the inside of my nose, in that funny little pocket at the front.  Sometimes, especially in morning, I still detect a sort of sour smell.  Occasionally, I would have some bleeding.  That could suggest a sinus infection, which may explain my white counts are a little bit off.  I was on ribavirin and that affects blood, and platelets, and bleeding issues. More than two week EOT,  I still get that, though not all the time.  If I really keep up with a saline rinse, it goes away.  I use the rinse/flush called AYR.  Nety pots don't agree with me.  So there you have it, a report on the inside of my nose.  Funny what we learn about each other in this forum.   Keep flushing.



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GT2a, VL 681,500, Less than F1, Treatment Naive

12 wks Sovaldi/Ribavirin, SOT 2/25/16, EOT 5/17/16

UND at 2,4,8 and 12 wks during treatment but ribavirin crazy.

ALT/AST normal EOT

SVR12 8/13/2016!!!!!!!!!  I WON!!

EOT 6 Months 11/12/2016  CURED

 
Midnight


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JimmyK wrote:

You know personally I believe it does have more to do with the immune kicking in and no longer being side tracked by the Hep-C Virus. That is a logical conclusion in my opinion.

I do not believe it is a side affect of Harvoni in that all Harvoni does is stops the replication of the Hep C Virus. As long as the virus is active the immune system is taxed. Once rid of the Virus it is free to go find something else to beat up.  ;)

 

JimmyK

 I'm with you on this Jimmy and for my next trick I shall defeat Man Flu smile



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Genotype 1A, Fibroscan 14, enlarged spleen.
Failed 48Wk triple therapy (Telap) treatment Jan-Dec 2014. 12 Week Harvoni/Riba started 22/12/15...

Week 2; ALT 50 HCV 96
Week 4; ALT 41 HCV 20
Week 8; ALT 34 HCV UND

EOT +4 weeks; ALT 27 UND

SVR 12; ALT 25 UND

SVR 18mths; ALT 26 UND
wmlj1960


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My cold sores were not the result of Harvoni but rather of HSV-1. Since I've been taking Valacyclovir I haven't had any problems. You may want to have some test done to see if this is an issue? smile



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Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

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JimmyK


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wink

 



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."
JimmyK


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You know personally I believe it does have more to do with the immune kicking in and no longer being side tracked by the Hep-C Virus. That is a logical conclusion in my opinion.

I do not believe it is a side affect of Harvoni in that all Harvoni does is stops the replication of the Hep C Virus. As long as the virus is active the immune system is taxed. Once rid of the Virus it is free to go find something else to beat up.  ;)

 

JimmyK



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."
Tig


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I'm glad you were able to help with this information Jimmy. I hadn't heard about the nasal soreness to this degree before. Good to know Carol obtained some relief from the intervention. Saline sprays always help the mucosa and are generally safe to use anytime the urge strikes you. Neti Pots are another source of relief on that same level. 

I hope that provides you with some ideas to pursue, Tony. Good luck.



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Tig


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Hi Tony,

That hasn't been something I've heard from other Harvoni patients. It's possible it could be related to the Ribavirin though. I can't say for sure. It is well known for causing some skin problems and I suffered from oral rawness and rashes all through treatment. Have you spoken to your liver specialist about this? There may be a spray that they could prescribe to give you some relief. 

Hopefully you'll have an opportunity to talk to someone when you get your EOT +12 bloodwork next week. I wish you the best of luck with those results. I expect you'll be pleased with all the hard work you put into treatment. Let us know when you hear something.



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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JimmyK


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Hi Midnight.

Actually my wife Carolyn went through the same thing just prior to EOT. She was told to rinse with Saline and keep it clean.

LOL keep your nose clean is something teachers used to tell me all the time after getting in trouble LOL.

 

The saline helped sooth things and then she was give "Mupirocin Ointment USP, 2%. Gone after second treatment.

Hope this helps.

 

JimmyK



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Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."
Gracie


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Hi Midnight,

Sorry to hear about your cold sores. I never experienced anything like that with Harvoni. cold sores are caused by a different virus so the two could be completely unrelated. Best to see your doctor about it as I'm sure there is something you can use to clear them up quicker and stop them from hurting. They must be painful.

Best of luck in your upcoming post 12. Looks like you've got this from your numbers...

ps.. looks like we've had a similar path, I too failed Incevik, my initial Fibroscan was 15.5. My last one 6 months after successful treatment was 8.8....



-- Edited by Gracie on Saturday 4th of June 2016 05:58:28 AM

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  1. Gracie

1A. Previously treated non responder Rebetron in 2000 And Incevik in 2014 with a breakthrough at week 12. Fibroscan 15.5. VL 6,000,000. Finished 24 weeks harvoni on Dec. 19, 2015. SVR. Latest Fibroscan 8.8.
Midnight


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Not sure if anyone else has experienced something like this but ever since I ended my Harvoni treatment in March I have been having recurrent and what feels like cold sores inside my nostrils!

Really painful and far worse than a cold sore on the lip as at least I can put some zovirax on those.

I've read about others experiencing hives and other skin complaints following Harvoni but not this.

My hope is that this is just my immune system firing up now that the HCV is hopefully gone (12 week post EOT bloods next Tuesday)...

Anyone else have any post Harvoni issues?



__________________

Genotype 1A, Fibroscan 14, enlarged spleen.
Failed 48Wk triple therapy (Telap) treatment Jan-Dec 2014. 12 Week Harvoni/Riba started 22/12/15...

Week 2; ALT 50 HCV 96
Week 4; ALT 41 HCV 20
Week 8; ALT 34 HCV UND

EOT +4 weeks; ALT 27 UND

SVR 12; ALT 25 UND

SVR 18mths; ALT 26 UND
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