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Poll

Has anyone experienced hair loss after Harvoni treatment?

yes
20 (74.1%)
no
7 (25.9%)

Total Members Voted: 27

Author Topic: Hair loss post harvoni  (Read 31725 times)

0 Members and 1 Guest are viewing this topic.

Offline rdd1956

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  • Posts: 4
Hair loss post harvoni
« on: November 06, 2015, 08:18:10 am »
I completed the 12 week course of Harvoni in June 2015. The side effects while under treatment were minimal and easily managed and all my post treatment blood work shows the virus is no longer detectable.  However, almost immediately upon completing the treatment, I began to experience hair loss, which continues to this day, 5 months post treatment.  Has anyone else experienced this?  How long will it continue?

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Hair loss post harvoni
« Reply #1 on: November 06, 2015, 09:46:18 am »
rdd, welcome to the forums, but sorry hair loss is why you are posting. You have done exactly the right thing by setting up a poll. It will be difficult to figure out whether the timing implicates Harvoni or is simply coincidental. A middle schooler up the block from me suddenly lost all of his hair, and his doctor said that alopecia unfortunately does sometimes come out of the blue, and in some people it is temporary, whereas in others it is permanent.
   I recall reading that many years ago Oprah Winfrey's hair fell out after a sudden major stress (job loss, if I remember correctly); hers grew back. A number of people on these forums have mentioned unexpected negatives post-treatment, and we have hypothesized that the immune system might need time to adjust to the major rapid change that Harvoni has achieved. Congratulations on your status as officially cured of HCV. Best wishes getting answers and ideally a solution to your current dilemma.

Gnatty
whose "medical adventures" over the years have resulted in visible mementos :-\
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline Bree

  • Member
  • Posts: 576
  • "Today is a good day for a great day!"
Re: Hair loss post harvoni
« Reply #2 on: November 06, 2015, 01:48:19 pm »
rdd welcome.  I am almost 6 weeks EOT and I have noticed very mild hair loss.  I have fine thin hair already (on past interferon treatments I lost A LOT of hair, some came back but not all but that was a completely different ball game). 

When I wash my hair, there will be hair on my hands and little on the drain.  I definitely think it is some type of physical change brought on by treatment or afterward. I'm hoping it self corrects with time...
Dx 1997 Geno 1a
2002-2003 PEG Intron/riba (48 wks) respond/relapsed
Pre-Harvoni - Viral Load: 13.5 M - Log 7.1
Fibrosure Score F1-2  Pre-Treatment:  AST 73 / ALT 88

7/6/15 Started Harvoni (12 weeks)
10/5/15 HCV NOT DETECTED (One week post EOT)
11/9/15 NOT DETECTED!!! (6 wk post)
12/21/15 NOT DETECTED (12 wk post) 
3/14/16  NOT DETECTED (24 week post)AST 26 ALT 18
SVR ACHIEVED!!! 
CURED YES!!!

Offline BDK

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  • Posts: 58
  • "Appeal, Appeal, Appeal!"
Re: Hair loss post harvoni
« Reply #3 on: November 06, 2015, 02:38:07 pm »
Thanks for starting this thread.  I'm EOT 4 weeks, and am definitely getting some hair thinning, to I think it was goign on during treatment too.  Of course, my hair is the thin fine type that really needs all the help it can get!  I lost a lot when I was on interferon and riba (15 years ago), had it cut really short, and it grew back OK.  I didn't equate it with Harvoni this time around, but it's interesting to see other people's perspectives on it.  Of course, hair loss can occur under all kinds of conditions, but Harvoni seems to be the big change in my recent life.
Genotype 1a
Diagnosed 1992
Liver biopsy 1998 stage 0-1.
Peg inf + riba 1999, stopped at 25 weeks due to side effects-undetected then but reappeared within 3 months.
Liver biopsy 2006 - stage 0-1.
Fibroscan 2015 - stage 0-1.
VL >12 million.
AST, ALT high normal range.
7/17/15 Started Harvoni for 12 weeks.
8/4/15   VL 70, AST 19, ALT 11
9/17/15 VL Undetected (<12), AST 19, ALT 16
11/10/15 EOT +5 weeks VL Undetected (<12), AST 16, ALT 14
1/12/16 EOT + 14 weeks VL Undetected (<12)

Offline KimInTheForest

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  • Believe in yourself
Re: Hair loss post harvoni
« Reply #4 on: November 06, 2015, 03:12:05 pm »
I have been noticing minor hair loss, starting near end of treatment and continuing ever since (but tapering off, I like to think!). I am now 14.5 weeks post-tx. It is mainly just a matter of shedding a few more individual strands than usual, and seeing more come out when I brush or shampoo. It's not coming out in clumps, and I don't think it is actually noticeable to anyone but me.

I was on Harvoni+ribavirin, so no way to know which might be the culprit.

I recall Lucinda saying that any significant stress to body (including drugs/medications) can cause hair loss. And that when caused by medication, it will usually begin 8-12 weeks after onset of the stress/medication, which is when the medication reaches the follicles. (Do I have this right? I hope Lucinda will correct me if I am getting this wrong.) And that it lasts about 12 weeks after the stressor stops.

So in other words. It would begin around EOT (12 weeks), and last for about 12 weeks. And my own hair-shedding now is certainly less than it was several weeks ago, so it seems to be following that pattern.

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline rdd1956

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  • Posts: 4
Re: Hair loss post harvoni
« Reply #5 on: November 06, 2015, 07:06:40 pm »
I would like to thank all who answered my question.  Hair loss seems a minor concern in the face of the larger issue here (hep c) and I appreciate that no one chastised me for a seemingly shallow problem.  As someone else said, I suspect no one but me (& my hairdresser who originally pointed out the loss) has noticed but it does impact my self image. 
Again, thank you for your input. 

Offline marybarter

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  • Posts: 10
Re: Hair loss post harvoni
« Reply #6 on: November 07, 2015, 05:53:37 pm »
Hair loss is usually very traumatic and no one should ever label it as a "minor" problem.  I hope your hair stops falling out and that it grows back soon.

Offline Mugwump

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  • Posts: 778
  • My number of posts means nothing, piscor ergo sum!
Re: Hair loss post harvoni
« Reply #7 on: November 08, 2015, 07:20:04 am »
I am in the same camp as Gnatty and will attribute any hair loss to the stress of waiting for PCR tests and the fears and uncertainty about taking a medication which is so powerful.

And welcome to this group!

Harvoni by itself is not capable of inducing hair loss. It does not and cannot effect the way in which the cells grow in the scalp. If anything the increases in effective blood and body waste control by the cardio vascular system and the liver due to the removal of the virus and damage to the liver might increase hair growth is some younger individuals who have HCV and are now cured.

Stress, fear and decreased liver functions that come with HCV can definitely cause hair loss but there is no way that Harvoni can. Harvoni does not act the same way as chemo therapies that damage cell production and do cause severe hair loss in some individuals. The chemical mechanism that Harvoni uses to block replication of HCV does not effect other cells the way some anti cancer drugs including some interferons do.

There were absolutely no reports of hair loss attributed to Harvoni during all the clinical trials and I am certain that if any did happen it was only in individuals who were also on other medications that do cause hair loss.

All that being said the cycle of liver cell replacement does create natural interferons in the human body and is a part of aging, this is a part of hair thinning and cell replication aging and slowing that we all experience as a natural part of aging.

So if your liver suddenly does create more interferon then yes it might cause you to thin you hair more quickly. But if you have normal levels of interferons in your system post treatment and your liver functions are normal then there should be no pronounced increase in hair loss either during or after Harvoni tx.

EDIT
as a foot note I am experiencing rapid growth of the hair on and in my ears, my eye brows and toes of all places. I take it that I am turning into a curmudgeon post Harvoni treatment,
I say bring it on! 
Even if my dear wife tries to pluck my ears and get me to trim my nose and eye hair before we go out in public together!
« Last Edit: November 08, 2015, 07:41:34 am by Mugwump »
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Hair loss post harvoni
« Reply #8 on: November 08, 2015, 04:22:40 pm »
Mugwump/Eric, thanks for the cogent exculpation of Harvoni. RE: your newly hairy toes, you seem to be too bearded to be turning into a hobbit, so curmudgeon it is.
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,545
  • Get tested, get treated, get cured, fight Hep c!
Re: Hair loss post harvoni
« Reply #9 on: November 09, 2015, 01:26:47 am »
I have lost the majority of my body hair and the hair on my head also seems to be receding somewhat.

This started a couple of years ago and it is either getting older or maybe I have read cirrhosis can mess with hormone levels so I am thinking that could be it. Also I am taking Spironolactone for edema and that could also have a hand in my not so hairy situation.

Maybe if my liver gets better I can go back to my overly hairy legs and etc...

Thinking fuzzy thoughts
Lynn
« Last Edit: November 09, 2015, 01:28:48 am by Lynn K »
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Mugwump

  • Member
  • Posts: 778
  • My number of posts means nothing, piscor ergo sum!
Re: Hair loss post harvoni
« Reply #10 on: November 09, 2015, 03:44:09 am »
I have lost the majority of my body hair and the hair on my head also seems to be receding somewhat.

This started a couple of years ago and it is either getting older or maybe I have read cirrhosis can mess with hormone levels so I am thinking that could be it. Also I am taking Spironolactone for edema and that could also have a hand in my not so hairy situation.

Maybe if my liver gets better I can go back to my overly hairy legs and etc...

Thinking fuzzy thoughts
Lynn
Lynn in that case in Italy you could become a goddess, no less. The hairier the legs the better!

I should have my 24 week eot hcv rna results soon but as usual the *^*^%*(  waiting will again cause me to lose some more of my hair, of this much I am certain!

I see you changed into Amelia. I hope you are not considering a sky diving expedition to find her plane, you might get a little wet!

I think I will morf into a fish (a rainbow trout) this time around just for good measure. I always wondered what it is like to be an O. mykiss or S. confluentus or worse a nasty mean tooth toting S. namaycush like the really old ones in Great Slave Lake!  If I can't go fishing then perhaps becoming one for a while is the next best thing.  But using an animated avatar like this one might be a little over the top IMO, so perhaps my mug is better in some ways.


Cheers
Eric
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,545
  • Get tested, get treated, get cured, fight Hep c!
Re: Hair loss post harvoni
« Reply #11 on: November 09, 2015, 04:01:20 am »
You comments about wanting to be a fish made me think of the old song "Would you like to swing on a star" ..... Or would you rather be a fish lol
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline janne325

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  • Posts: 12
Re: Hair loss post harvoni
« Reply #12 on: November 09, 2015, 09:32:16 am »
Hi:
I finished up 12 weeks Harvoni the end of August and also notice considerable hair loss.  I do, however, also have thyroid issues and of course, the stress.  The other factor is that I stopped most all supplements during treatment to put less strain on liver and only took thyroid meds.  My normal gentle iron (ferritin level) and muti and hair, skin & nails, etc. got put on hold for 12 weeks, so it could be a number of factors.  I think it is finally slowing down now after a couple months of being back on my vitamin routine.  I empathize and don't think it is shallow at all.  That alone will add to stress and cause even more hair loss (I know from experience). Just breathe.......it will grow back......

Offline CE

  • Member
  • Posts: 147
  • Genotype 3. Sovaldi & Ribavirin 24 weeks.
Re: Hair loss post harvoni
« Reply #13 on: November 09, 2015, 12:25:01 pm »
Hi RDD1956,
I started to experienced a lot of hair loss 2 weeks after completing my treatment. I took Sovaldi and Ribaviron for 24 weeks. It continued for at least 5 months to the point that I lost at least 1/3 of my hair volume. It has now stopped and is growing back. I might add that I have shoulder length hair with 2 inch spikes of hair growing out. It looks funny, but at this point I am thankful to be cured and to see that hair growing. Good to see you are cured too! Hope your hair soon returns and may you have an enjoyable hep-free life! Take care.
Chris
Chris :)
Diagnosed July 2014
Genotype 3
Viral load of 950,000
Most likely from blood transfusion in 1978
Treatment started November 2014
Sovaldi and Ribavirin for 24 weeks
End of treatment April 2015
SVR12 July 2015!!!!!!
SVR24 October 2015!!!!!
Cured!!!! Praise the Lord!!

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: Hair loss post harvoni
« Reply #14 on: November 09, 2015, 04:36:06 pm »
When medication-related hair loss occurs, it usually happens about 3 months after the medication is started (plus/minus 2-4 weeks). This is about the time HCV treatment is done, so it can be confusing. In the old days, it happened while we were just getting started.

The range of loss can be anywhere from a little to a lot. We all react differently to it. I have thin hair, so each time I lost it (3 in all), it was a temporary drag. However, I had a patient with very thick hair, and she loved her hair loss. She told me she wished she could keep this side effect.

Now for the good news - if this was caused by HCV treatment, the loss should stop at about 12 weeks, and you will begin to notice new growth shortly after. Note that other things can cause hair loss - I lost it when I was on an acid-reducing agent. So if you are still taking other meds, you may want to look in to those to see if they may be the cause. 
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 CE

  • Member
  • Posts: 147
  • Genotype 3. Sovaldi & Ribavirin 24 weeks.
Re: Hair loss post harvoni
« Reply #15 on: November 09, 2015, 07:00:57 pm »
In my case, I would have to say that my hair loss was directly related to the Solvadi/Ribavirin due to the fact that I never took any other meds and still don't. I view it as a shock to my body rather the same way that there is hair loss after giving birth. My body was drying up and losing red blood cells at an alarming rate. Then the meds were stopped cold turkey. The doctor said it would take 6 months for the ribavirin to totally leave my body.
It amazes me how these very powerful meds affect everyone in so many different ways. The hairloss was upsetting to me because I have very thin hair to begin with and my scalp was showing through. But that was a minor sacrifice to be rid of HCV.
Chris :)
Diagnosed July 2014
Genotype 3
Viral load of 950,000
Most likely from blood transfusion in 1978
Treatment started November 2014
Sovaldi and Ribavirin for 24 weeks
End of treatment April 2015
SVR12 July 2015!!!!!!
SVR24 October 2015!!!!!
Cured!!!! Praise the Lord!!

Offline hope2bcured

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  • Posts: 26
Re: Hair loss post harvoni
« Reply #16 on: November 10, 2015, 08:35:11 am »
I completed the 12 week course of Harvoni in June 2015. The side effects while under treatment were minimal and easily managed and all my post treatment blood work shows the virus is no longer detectable.  However, almost immediately upon completing the treatment, I began to experience hair loss, which continues to this day, 5 months post treatment.  Has anyone else experienced this?  How long will it continue?

I took Harvoni for 12 weeks and I had hairloss in the beginning (I was treatment naive) The hair loss stopped about 8 weeks in. I am now 8 weeks post tx and no more hair loss, but, I feel way worse than when I started. I feel so horrible, that I am pretty sure the virus is back :( I will know next month for sure. I am perplexed when I do searches on the internet and folks say their energy is back their heads feel clearer. Which only leads me to believe I have not cleared the virus.

Offline Mugwump

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  • My number of posts means nothing, piscor ergo sum!
Re: Hair loss post harvoni
« Reply #17 on: November 10, 2015, 11:03:09 am »
I took Harvoni for 12 weeks and I had hairloss in the beginning (I was treatment naive) The hair loss stopped about 8 weeks in. I am now 8 weeks post tx and no more hair loss, but, I feel way worse than when I started. I feel so horrible, that I am pretty sure the virus is back :( I will know next month for sure. I am perplexed when I do searches on the internet and folks say their energy is back their heads feel clearer. Which only leads me to believe I have not cleared the virus.
Hang in there. If you are clear at EOT then you have the very best chance that you will reach SVR 12 which is now considered cured by most specialists. It is obvious that the costs of testing is having an effect and many insurance companies are putting pressure on the specialists to not do 4 week VL testing. There was a shortage of test kits a few months back and many people who had treatment last year had long wait times for results.

Many people seem to be having a harvoni hangover, as I call it. My speculation is that the situation is created in individuals who create large amounts of antibodies suddenly as the HCV is removed quickly from the system and the liver heals and does the important job helping to create antibodies better than it did pre treatment. This would explain a great deal of why some of us that are SVR 4, 8 and 12 still feel like hell even though we are cured of the virus. YOU ARE NOT ALONE!!!

All the very best
Eric
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline rdd1956

  • Member
  • Posts: 4
Re: Hair loss post harvoni
« Reply #18 on: November 11, 2015, 03:45:48 pm »
So glad to read that the hair loss will stop.  Luckily, I have fairly thick hair so the loss is not catastrophic but, if it were to continue it could become so.  As CE wrote,  I have to pin this on the Harvoni since I did not and do not take any other medications or supplements and do not have cirrhosis.   

I like what Mugwump wrote about the Harvoni Hangover.  I have noticed increased bouts of melancholy and "the blahs" since finishing treatment but it didn't occur to me to make the connection.  I am looking forward to the day that all the post treatment issues subside & I can look back and take full stock of all that happened.   As this treatment becomes more readily available and more widely used, our experiences will become part of the protocol and that makes me feel like I am part of something big. 

Offline janne325

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Re: Hair loss post harvoni
« Reply #19 on: November 11, 2015, 06:26:07 pm »
When I first started experiencing hair loss and also had rashes on my legs, I called the pharmacy that I got Harvoni from to ask if it was from Harvoni.  They directed me to call Gilead and report my experience.  They were great and thanked me for calling as that was the only way they could compile a complete list of possible side effects.  So, I think it is a good idea for everyone to call and report their experiences.  You can be anonymous if you like.  I found out the rashes were relatively common for a lot of people over all parts of their body and also hair loss.
My hair is just now beginning to stop shedding and I finished 12 weeks of treatment end of August, so it has been 12 weeks since I stopped treatment.  Hair loss started just a few weeks into treatment though, so it has been going on for a while.  I have lost about 1/3 of normal volume.  Trying not to stress out too much.

Offline rdd1956

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Re: Hair loss post harvoni
« Reply #20 on: November 11, 2015, 08:24:19 pm »
Thanks janne325.  Calling Gilead is a great idea.  I will do this.

Offline BG

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Re: Hair loss post harvoni
« Reply #21 on: November 14, 2015, 02:13:19 pm »
All I could think when I noticed lots of falling hair was, "What next?" I am so grateful that so many have shared their experience with this. Seems petty to complain after curing a 40+ year, potentially fatal infection, but for gosh-sakes, just let me hang on to as much normal as I can. The scary thing is the feeling that changes come at you so fast--no matter how determined, it's hard not to have panicky days when things pop up that you don't understand. 

Offline CHepCFree

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Re: Hair loss post harvoni
« Reply #22 on: April 28, 2017, 07:26:06 pm »
Two years+ post treatment and loss of hair on my head. Used to be very thick now can easily see my scalp.  Also lost all the hair on my arms and upper legs.   There is no regrowth.  And no I did not have cirrhosis and my liver blood work before treatment was fine.    On another site, many of the ladies and men have lost hair as well and they too are years out.   

Offline I fightis thetitis

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Re: Hair loss post harvoni
« Reply #23 on: April 28, 2017, 08:33:48 pm »
Perhaps a small price for us to pay..
M59  56@start of TX. date infected:1976
diagnosed 1997 - asymtomatic
Genotype 1a
AST 111 -ALT 124 - AFP -89
Viral Load 1900000 - Log 6.28
Fibro Test F4 ActiTest A3
Harvoni 24 wks - start date 11/24/15

6 Week Labs VL Undetected!
104 weeks EOT Undetected.

8/25/17 Fibrosure score 80 = F4
11/10/17 Fibroscan 7.5 mean 1.6 m/s = F2
8/2018 Ultra sound normal.

Offline CHepCFree

  • Member
  • Posts: 66
Re: Hair loss post harvoni
« Reply #24 on: April 29, 2017, 12:46:14 pm »
Guess it would be a small price to pay if I didn't also have a 24/7 headache, tinnitus, severe small fiber neuropathy, lungs that only work at 50%, irregular heartbeat,vision issues and fatigue in addition to hair loss, none of which I had pre-treatment.  But guess I am lucky to be alive as many have lost their lives to Harvoni and there are people who were active before and bedridden now.   I have heard from six people in the past week who had a loved one with a healthy liver and after Harvoni developed an aggressive form of liver cancer or other cancer and they are no longer with us.  If you only had some hair loss, you are lucky.   

Offline mario555

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  • Posts: 226
Re: Hair loss post harvoni
« Reply #25 on: May 19, 2017, 01:37:43 pm »
It has been 2 years since I finished a 24 weeks treatment with Harvoni and I would definitely say that my hair was affected. In my family we have very thick hair and we tend to keep them! My mother is 92 and still has most of her hair.  I had lost lots of hair during my 2 attempts with Interferon but the hair grew back rapidly those 2 times.  Since taking Harvoni, I have lost 30% of my hair and the rest is noticeably thinner and a have a receeding hair line.  This developed during and after my treatment but I can't say when it stopped. 
This is a very small problem compared to what was in store for me if Harvoni wouldn't have been invented.  I have all kinds of other ailments with dizziness, ear problems, joints and other but the reason it is so much more troubling is that when I had Hep C (didn't think I'd write that one day...), all my health efforts were directed towards the disease!  Now that I am cured, all the other ailments are now more important because I don't have to think about Hep C anymore! 
I am not discounting other people's health problems but when I took Harvoni, I knew I was part of the first batch of ''real people'' to take this medication and I knew there were risks involved due to the lack of long term experience with this new revolutionary medication!  What if I go crazy 5 years after the end of treatment? Nobody knew!  We are lucky this medication has been provided to millions of people suffering from this scourge and that no ''major problems'' have arisen for the vast majority of the subjects.  The company did their best to finance and investigate this miracle drug and to bring it to market as fast as possible to help people like me.  They could have waited 10-15 years analyzing some more but I would have been dead by the time they would have fully investigated it.  Harvoni like any new medication has a certain amount of risk! It is the doctor's responsibility to weigh the benefit against the risk and to tell his patient.  It is the patient responsibility to make the last call before swallowing the first pill.  In some cases like mine, I was fully aware of the risk and the benefit and was willing to do whatever was needed to get a cure ASAP!
All those who have lost hair, don't worry because you're there to see it happen in an otherwise healthy body.  Good luck to everyone
60 years old. Likely infected 1975. Geno 1a
F4  8 millions VL,  AST 140  ALT 140
Generally in good health except problems are creeping up rapidly!
2 failed attempts Inf 2000 and Inf-riba 2010
Harvoni 24 weeks
Start 11/13/2014   EOT 4/27/2015
VL2 - UND
VL4 - UND (may 25)
VL12 - UND
VK24 -  UND
Hopefully cured forever!

Offline Mugwump

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Re: Hair loss post harvoni
« Reply #26 on: May 19, 2017, 04:14:35 pm »
Mario; I must agree that harvoni treatment or any DAA treatment for that matter when one has significant liver damage is going to do things that we cannot possibly anticipate. The question is however, for those of us who have cirrhosis or advanced liver damage, how well would we have faired if not treated and cured?

Hair loss for one is exacerbated by liver dysfunction and is part of advanced liver disease in general.

We were on the edge of going down hill with cirrhosis, how well we do without HCV causing further damage is what we need communicate. Now if my eyebrows, toes and ears would only listen and stop sprouting hobbit like hairs and my wife would stop trying to pluck and trim them! ::)
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline mario555

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Re: Hair loss post harvoni
« Reply #27 on: May 19, 2017, 04:55:28 pm »
I'll bet it's the wife "plucking away" that is the worst! Haha... Actually you are right! Some of us had run out of time and were willing to accept the additional risk related to the new types of drugs being used. On the other hand, the patients who were less advanced with their disease (f1, f2?) should have waited a bit in order to assess the ramifications of the treatment. It is true that the company realized that many people could be cured with only 8 weeks of treatment therefore reducing the risks but even then, DAA's are a leap in the unknown for now.
Finally I also think I have lingering amounts of that treatment in my body and it could probably be the reason I still have some side effects. On the other hand, I thank the Lord for the invention of Harvoni, one of the only treatment for viruses in existence. How lucky for me?
60 years old. Likely infected 1975. Geno 1a
F4  8 millions VL,  AST 140  ALT 140
Generally in good health except problems are creeping up rapidly!
2 failed attempts Inf 2000 and Inf-riba 2010
Harvoni 24 weeks
Start 11/13/2014   EOT 4/27/2015
VL2 - UND
VL4 - UND (may 25)
VL12 - UND
VK24 -  UND
Hopefully cured forever!

Offline Mugwump

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  • My number of posts means nothing, piscor ergo sum!
Re: Hair loss post harvoni
« Reply #28 on: May 26, 2017, 05:02:36 am »
This thread is interesting in that it shows that treating with DAAs will effect us all quite differently. And I hope this thread becomes one that is read more frequently by those who want a better handle on why they might experience some unexpected issues with their treatments.

However it seems that the internet now has a huge number phony medical sites that scoop a side effects search and create a reply made up to simulate a factual set of values based upon your search terms.

For instance the side effect of Death is created by this nonsense medical information scoop site when you use the specific search terms HARVONI CAUSES DEATH.

I strongly encourage those who use the internet to search for possible issues with DAAs to be very cautious because the scam artists are really having a field day with the victims of HCV and many other diseases.

Medical law suit sites are also starting to pop up everywhere you look for drug interaction information on DAAs. In fact the internet is becoming awash with gibberish and automated search grabbing booby trap phony medical info sites.

Please be very wary of what you read on the internet regarding side effects, especially when you are in reality talking to automated sites that are programmed with search jumping bias logic!

I AM NOT A ROBOT

 
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline lporterrn

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Re: Hair loss post harvoni
« Reply #29 on: May 26, 2017, 01:59:15 pm »
Just a reminder to people who have lingering side effects - be sure to rule out other causes of hair loss before you completely ascribe it to your hep C treatment. I've had hair loss that I blamed to various factors that turned out to be completely different than what I thought the cause. Both were due other things I was taking to manage medication side effects. The real surprise was my Brazil nut addiction, which was adding too much selenium into my diet, and causing hair loss. Took me some time to figure that one out.
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 dragonslayer

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Re: Hair loss post harvoni
« Reply #30 on: May 26, 2017, 02:20:08 pm »
I'll bet it's the wife "plucking away" that is the worst! Haha... Actually you are right! Some of us had run out of time and were willing to accept the additional risk related to the new types of drugs being used. On the other hand, the patients who were less advanced with their disease (f1, f2?) should have waited a bit in order to assess the ramifications of the treatment. It is true that the company realized that many people could be cured with only 8 weeks of treatment therefore reducing the risks but even then, DAA's are a leap in the unknown for now.
Finally I also think I have lingering amounts of that treatment in my body and it could probably be the reason I still have some side effects. On the other hand, I thank the Lord for the invention of Harvoni, one of the only treatment for viruses in existence. How lucky for me?

Im my case, Id have to disagree.. I was Stage 0-1 as I began treatment with Harvoni over 2 yrs ago, and was thrilled to have been given the opportunity to get treated with it. No way would I have waited.  Of course, thats easy for me to say as Ive had no bad side or after effects from taking it.. At least, none that I can be sure were caused by it.   Sure I have  little ticks and tweaks, but who among folks in the baby boomer age group doesnt?!   There's not enough money in the world that I would have accepted to not be treated when I was.   The psychic anguish I went through every day was debilitating.  Every unusual or problematic 'feeling', or ache or pain I experienced  I was sure was a sign that I was going to die of liver disease soon.    Having great biopsies were of little solace when the mind is convinced they must have been wrong, and the disease was winning.    The peace of mind that comes from being cured, to me, is the greatest benefit of being cured.. Other than being physically cured, that is, of course!!
Paul

DX 2008
Started Harvoni 11/26/14 for 8 wks
Completed 8 wks Harvoni 01/20/15
EOT RNA Quant result:  Detected 29
7.5 wk post tx: Detected < LLOQ(12)
11 wk post tx: UNDETECTED SVR12
24 wk post tx: UNDETECTED SVR24; AST 26; ALT 22; ALP 73
48 wk post tx: UNDETECTED SVR48; AST 18; ALT 18; ALP 70
GT 1a
vl 2.4mil
2008 bpx: Stage&Grade 0
2013 bpx: Stage&Grade: 0-1
IL28B: TT
likely infected early '70s

Offline Mugwump

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Re: Hair loss post harvoni
« Reply #31 on: May 27, 2017, 01:48:19 am »
Lucinda, I certainly did loose some hair during my treatments however I am starting to ascribe it all to the aliens. For this guy it seems to work in reverse however!

Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline I fightis thetitis

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Re: Hair loss post harvoni
« Reply #32 on: May 27, 2017, 02:47:34 am »
That's known as the Harvoni high..
Is that a Selfie Eric?? lol
M59  56@start of TX. date infected:1976
diagnosed 1997 - asymtomatic
Genotype 1a
AST 111 -ALT 124 - AFP -89
Viral Load 1900000 - Log 6.28
Fibro Test F4 ActiTest A3
Harvoni 24 wks - start date 11/24/15

6 Week Labs VL Undetected!
104 weeks EOT Undetected.

8/25/17 Fibrosure score 80 = F4
11/10/17 Fibroscan 7.5 mean 1.6 m/s = F2
8/2018 Ultra sound normal.

Offline julu49

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Re: Hair loss post harvoni
« Reply #33 on: June 12, 2017, 02:05:11 am »
Yes. I have hair loss and none to spare. I wished I'd left well enough alone considering all of my other troubles before and worse after treatment. Also when I have ALT and AST tested, the numbers are so low, it's weird. Like 1 rather than my old reports of 35. Can't remember which of the tests are like this but it makes me uncomfortable to see this. Anyone else?
 :-[

Offline Lynn K

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Re: Hair loss post harvoni
« Reply #34 on: June 12, 2017, 09:16:41 pm »
Almost everyone with hep c has only slightly elevated liver enzyme test results. Liver enzyme tests have no relationship to amount of liver damage occurring even only slightly elevated liver enzymes mean something is irritating your liver. In the case of hep c something is irritating and injuring your liver each and every day you are infected.

If you have treated and are cured that is what you want to see low liver enzyme tests. Liver enzyme tests show something is bothering your liver so low enzymes equal Happy liver

Currently I have normal liver enzyme test results however I have liver cirrhosis. My liver is no longer being irritated by hep c but the damage of 37 years of infection has been done.

I treated with interferon mono therapy when I was F1 back in maybe 1994. A few years later when I was F2 I treated again when ribavirin was approved along with the new improved interferon that was only one shot a week. I treated again in a clinical trial with interferon ribavirin and a clinical trial drug even though the odds of it working were not good but again I had no success in getting rid of the virus.

I wanted to be rid of the virus before it could harm my liver unfortunately I was not successful.....
« Last Edit: June 12, 2017, 09:19:29 pm by Lynn K »
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Wiglaf

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Re: Hair loss post harvoni
« Reply #35 on: June 21, 2017, 06:40:29 pm »
I experienced hair loss during and after Harvoni treatment. My hair was thinning on top of my head. Did some research and discovered fenugreek stimulates new hair growth. I ingest one Fenugreek 610 mg capsule after every meal. Fenugreek has been effective in terminating hair loss. One peculiar side effect is you well smell maple syrup when you perspire or urinate. Fenugreek is similar to clover and is a member of the pea family. It is high in vitamins, minerals, and has strong antioxidant effects. Do an internet search: Fenugreek for Hair Loss. I'm so impressed with the results I buy organic powder Fenugreek seed by the pound and fill my own capsules using a device that fills 24 capsules at a time.
« Last Edit: June 22, 2017, 01:28:57 pm by Wiglaf »
Contracted: 1969
Treatment: Naïve
Geno 1A
VL: 15,900,000
ALT 38, AST 37
Belirubin 1.3
TX start date: Mar 2, 2015
Harvoni and Ribavirin (1200 mg)
EOT (24 weeks) 5/25/15 undetected
6 mths post TX: undetected 11/24/15
ALT 10, AST 17
Belirubin 0.8

Offline KimInTheForest

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Re: Hair loss post harvoni
« Reply #36 on: July 14, 2017, 02:56:27 pm »
...The real surprise was my Brazil nut addiction, which was adding too much selenium into my diet, and causing hair loss. Took me some time to figure that one out.

Brazil nuts! Wow! I had no idea. I eat Brazil nuts daily (just a few) because of the selenium. Have been experiencing minor hair loss lately, which I was ascribing to something else. Garlic also high in selenium, and I eat that daily as well. Crikey, this is hard!

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline NotToday2017

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Re: Hair loss post harvoni
« Reply #37 on: August 30, 2017, 11:30:05 pm »
Hi fellow hepc warriors,

I am about to finish my 5th week on Harvoni. My 4 week labs came back UND! Hooray! I was super worried about the side effects, but the only one I have really noticed since SOT has been the hair loss. After washing my hair, I wonder if there is going to be any hair left after I get out of the shower! So, that's a super bummer. After I finish tx, I am going to start taking biotin to see if that helps. Or maybe some of the other suggestions below. Please keep me posted if any of you see a difference with the supplements.

Unfortunately, I didn't get any of the "positive" side effects like the Harvoni high or weight loss. I'm still extremely fatigued (Dx CFS in 2002) and still can't get out of bed without adderall. I've had a lot of weight gain (10lbs) but I attribute that to not counting my calories right now; my focus has been on getting through treatment. Overall I'm grateful tha the Harvoni has been easy and so far, successful.

Best,
NotToday



 


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