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Author Topic: Hair loss after epclusa  (Read 15866 times)

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Offline bock

  • Member
  • Posts: 14
Hair loss after epclusa
« on: April 24, 2019, 10:31:51 am »
Hi all,

I recently finished 12 weeks of generic epclusa, and I'm waiting for 12 week after therapy to see if I am cleared. At end of treatment I was not detected.

I experienced some hair loss before treatment because I was in acute phase (very rare that someone is diagnosed in acute phase like my case) I have had hcv for only 8 months before treatment.
But after end of treatment my hair is falling a lot, thankful that I have a lot of hair and I see new one growing but it has been very extreme. It is now 2 months after EOt and it is still falling out.
I read on this board that people experienced it but it is not a side effect. Why it is not a side effect? I don't have anything other that could cause this.

Offline Nina Mae

  • Member
  • Posts: 71
Re: Hair loss after epclusa
« Reply #1 on: April 24, 2019, 03:40:42 pm »
Hi bock,

I am currently in tx (Epclusa and Ribavirin) so I can't say much but I wouldn't be surprised if it is a side effect.

My hair has been thinning out for many years:  mind you, I endured mass quantities of chemotherapy for breast cancer back in 2003 and it's been thinning out since. 

That said, I'm not sure whether it's attributable to chemo alopecia or liver disease.  I hope others chime in...it would be interesting to see what others experienced at EOT.

So happy to hear you're undetected!  Great Job and congrats!
Dx'ed HVC and cirrhosis Nov, 2018
GT: 1a; TN; F4-44
Started Epclusa and Ribavirin on Mar 2019
May 23:  EOT HCV RNA:  Undetected
Aug 15:  SVR 12:  Undetected
Nov 19:  SVR 24:  UNDETECTED!!!

Hep C Free!!!!

Offline lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: Hair loss after epclusa
« Reply #2 on: April 24, 2019, 04:21:51 pm »
Very likely the hair you lost during treatment was from before treatment, when you were already losing it. Generally hair loss occurs by an event that is 6 to 12 weeks prior to the loss, so if you were losing hair before treatment, that is about right.
HOWEVER, if the loss is still going on, you might want to get checked by your doc to rule out other causes, such as thyroid problems (common after age 40).
Generally, hair growth is noticeable about 6 to 12 weeks after the event that caused it ends. For instance, a high fever can cause hair loss, but it takes 6 to 12 weeks to notice it, then it goes on for about 12 weeks, and then it takes another 6 to 12 weeks for it to start growing again.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline bock

  • Member
  • Posts: 14
Re: Hair loss after epclusa
« Reply #3 on: April 24, 2019, 04:28:00 pm »
I didn’t know that. That is very helpful info. Thanks!
What is strange that I lost some hair before treatment then during treatment just a little and now 8 weeks after I am still losing it. But I noticed new hair sticking out.
I never had thyroid problems before and I had checked it out a couple of times but not recently. Maybe if it continues I will but  this is the only side effect from epclusa that I had.

Offline Nina Mae

  • Member
  • Posts: 71
Re: Hair loss after epclusa
« Reply #4 on: April 24, 2019, 04:29:58 pm »
I wish we could just click 'like' to a post like yours, lporterrn. 

Alopecia from chemo started w/i 2-3 weeks after first course; after chemo, it was about 2-3 weeks that it started coming back in as tiny stubbles.
Dx'ed HVC and cirrhosis Nov, 2018
GT: 1a; TN; F4-44
Started Epclusa and Ribavirin on Mar 2019
May 23:  EOT HCV RNA:  Undetected
Aug 15:  SVR 12:  Undetected
Nov 19:  SVR 24:  UNDETECTED!!!

Hep C Free!!!!

Offline andrew j

  • Member
  • Posts: 477
Re: Hair loss after epclusa
« Reply #5 on: April 27, 2019, 06:59:57 pm »
Hi bock,

I think I lost some hair around Tx time - in a similar way to what you are describing.
... I certainly remember wondering if I was losing hair?!

It should sort itself out in the sort of time-frame Lucinda has outlined.

Looking back (I am 3 years or so post - Tx) there were some fairly profound [re]adjustments taking place, following many years of serious unwellness.

Long story short - you seem to be doing just fine!

Best of luck with the results!

A.

Offline dandyindeed

  • Member
  • Posts: 14
  • Retired in Colorado *hits blunt
Re: Hair loss after epclusa
« Reply #6 on: May 06, 2019, 02:14:50 pm »
Took my last epclusa 4/30/19 and today after bathing I was surprised to see so much hair under my arms.    Top of my head is visibly thinner  and has been for 3 years or so.    I am I my 60s tho 
Type 1
Dx'd 1995

No liver damage
Started Epclusa 2/6/19

Offline Nina Mae

  • Member
  • Posts: 71
Re: Hair loss after epclusa
« Reply #7 on: May 06, 2019, 03:08:10 pm »
You're doing great! 

Best wishes for continued improvements!
Dx'ed HVC and cirrhosis Nov, 2018
GT: 1a; TN; F4-44
Started Epclusa and Ribavirin on Mar 2019
May 23:  EOT HCV RNA:  Undetected
Aug 15:  SVR 12:  Undetected
Nov 19:  SVR 24:  UNDETECTED!!!

Hep C Free!!!!

Offline FinleyMorse

  • Member
  • Posts: 7
Re: Hair loss after epclusa
« Reply #8 on: January 24, 2023, 05:59:24 am »
Oh, I feel you. Epclusa didn't work well for me and caused severe hair loss and low appetite.

Offline ColemanHarryw

  • Newbie
  • Posts: 1
Re: Hair loss after epclusa
« Reply #9 on: January 24, 2023, 06:11:48 am »
My husband’s hair began falling out about five weeks into treatment. He was trying to grow his hair long. At that time, we were thinking to try hair transplant, as we discovered a reliable clinic in our region. But, suddenly he was hit with diarrhea that eventually caused heavily bleeding hemorrhoids. We visited more doctors that confirmed he had Hepatitis C. After four weeks after completing the treatment,  the diarrhea subsided. His thick hair began coming back about three months after the treatment. So, my advice is to be patient and wait for the effects. They're definitely going to appear.
« Last Edit: January 27, 2023, 12:09:55 pm by iana5252 »

Offline Askinator

  • Newbie
  • Posts: 1
Re: Hair loss after epclusa
« Reply #10 on: February 03, 2023, 03:09:13 pm »
First, you need to make sure that hair loss is the result of epilepsy treatment. Sometimes people confuse it with seasonal hair loss or hair breakage, which can be overcome with strengthening products. My wife knows how to take care of her hair, and I can ask her what balms will help you in such a case. But if you know it's alopecia, try consulting a trichologist. He may be able to prescribe you a good treatment or recommend a great hair transplant clinic. I've had a forehead hair transplant, and I can share my experience.
« Last Edit: February 03, 2023, 03:43:58 pm by iana5252 »

Offline KevinK

  • Newbie
  • Posts: 1
Re: Hair loss after epclusa
« Reply #11 on: February 10, 2023, 05:07:53 am »
So sorry for your hair loss!

Offline FinleyMorse

  • Member
  • Posts: 7
Re: Hair loss after epclusa
« Reply #12 on: February 18, 2024, 06:21:18 pm »
First off, congrats on finishing your epclusa treatment! That's a big accomplishment. As for the hair loss, it can be super worrying, especially when it feels like your locks are doing a disappearing act.
So here's the deal: while it might not be listed as a side effect, lots of folks have reported experiencing hair loss post-treatment. It's like your body's still adjusting, ya know? I had a similar thing happen to me after my treatment, and I was scratching my head (literally) trying to figure out what was going on.
But hey, if you're still on the hunt for answers, I stumbled upon something called protein overload during my research. It's this sneaky issue where your hair gets too much protein, making it look thinner than it actually is.
« Last Edit: February 20, 2024, 01:16:38 pm by jberlin »

 


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