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Author Topic: Why Does Harvoni Cause Headache?  (Read 20164 times)

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Offline Lukey

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  • Posts: 319
  • Let Thy Food Be Thy Medicine
Why Does Harvoni Cause Headache?
« on: January 13, 2015, 05:17:35 pm »
Can any of you shed any light on this? I'm curious as to why Tx seems to give many people a headache and flu or cold symptoms.

Thank you.

Joe
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Male -  HCV since 1982 - Born 1951 ~ Geno 1a

Did 8 weeks of Harvoni in 2015. Got normal AST & ALT and undetected VL by week 5, then relapsed 4 weeks post.
-----------------------------------------------------------
July 5, 2018 : began 12 weeks of Vosevi with a VL of 540,000 and AST & ALT of 65 and 105.
2 weeks in : AST 19, ALT 20
5 weeks in : AST 18, ALT 12, VL "<15 detected"
10 weeks in : AST 19, ALT 14, VL "<15 not detected"
4 weeks post : "<15 not detected"

Offline Lynn K

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Re: Why Does Harvoni Cause Headache?
« Reply #1 on: January 14, 2015, 12:13:47 am »
I personally haven't seen anyone say anything about flu like symptoms except when talking about interferon.

As far as headache the prescribing information says 11, 14, & 17% depending on the length of treatment.

I guess it is what it is which is better than feeling like you had been run over by a bus for 6 months of interferon treatment
Logged
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 Lukey

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Re: Why Does Harvoni Cause Headache?
« Reply #2 on: January 14, 2015, 08:46:53 am »
Quote from: lporterrn on January 14, 2015, 12:11:04 am
I don;t know, but I've been told that drinking at least an ounce of water every hour helps tremendously.

Hi,

An ounce of water per hour is not enough, IMHO. That's only 24 oz per day. I'd say about 1/2 your weight in ounces per day would be much better, especially on Tx. For me, that would equate to about 85 oz, which is between 2 & 3 quarts daily.

I've found that water helps quite a bit. I was drinking 3 glasses per day but have increased to at least 5 or 6 glasses per day, plus I get a lot of fluid in vegetables and broths.
---------------------------------------------------------------------------------
I agree Lynn, this sure must be better than Inf therapies as far as SFX are concerned.

Joe
« Last Edit: January 14, 2015, 09:10:05 am by Lukey »
Logged
Male -  HCV since 1982 - Born 1951 ~ Geno 1a

Did 8 weeks of Harvoni in 2015. Got normal AST & ALT and undetected VL by week 5, then relapsed 4 weeks post.
-----------------------------------------------------------
July 5, 2018 : began 12 weeks of Vosevi with a VL of 540,000 and AST & ALT of 65 and 105.
2 weeks in : AST 19, ALT 20
5 weeks in : AST 18, ALT 12, VL "<15 detected"
10 weeks in : AST 19, ALT 14, VL "<15 not detected"
4 weeks post : "<15 not detected"

Offline Lukey

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  • Posts: 319
  • Let Thy Food Be Thy Medicine
Re: Why Does Harvoni Cause Headache?
« Reply #3 on: January 14, 2015, 09:09:35 am »
I'd say about a cup, or 8 oz of water every waking hour would be better.


Joe
Logged
Male -  HCV since 1982 - Born 1951 ~ Geno 1a

Did 8 weeks of Harvoni in 2015. Got normal AST & ALT and undetected VL by week 5, then relapsed 4 weeks post.
-----------------------------------------------------------
July 5, 2018 : began 12 weeks of Vosevi with a VL of 540,000 and AST & ALT of 65 and 105.
2 weeks in : AST 19, ALT 20
5 weeks in : AST 18, ALT 12, VL "<15 detected"
10 weeks in : AST 19, ALT 14, VL "<15 not detected"
4 weeks post : "<15 not detected"

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: Why Does Harvoni Cause Headache?
« Reply #4 on: January 14, 2015, 03:07:48 pm »
Oh bless you - I don't know why I wrote that since I knew better!  One "rule" of thumb that patients suggest is to divide how many pounds you weigh in two - that equals the # of ounces you should aim for. A 150 lb person would drink 75 ounces.

There is no science behind this - just patient reports. (I am a fan of looking a urine color - very pale yellow or clear urine suggests one is drinking enough.)

Constant sipping is the key, rather than loading up at once.

I am going to remove that incorrect post - don't want bad info out there. Thank you!
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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 Lukey

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Re: Why Does Harvoni Cause Headache?
« Reply #5 on: January 14, 2015, 04:26:09 pm »
You're welcome. :)

If not on Tx, I'd drink less water but right now on my first weeks of Harvoni I think it's very important that I do.

I like to add Real salt or Celtic salt to my water. It seems to increase hydration.

I'm not much of a fan of distilled and RO water. I use filtered water. :)

Joe
Logged
Male -  HCV since 1982 - Born 1951 ~ Geno 1a

Did 8 weeks of Harvoni in 2015. Got normal AST & ALT and undetected VL by week 5, then relapsed 4 weeks post.
-----------------------------------------------------------
July 5, 2018 : began 12 weeks of Vosevi with a VL of 540,000 and AST & ALT of 65 and 105.
2 weeks in : AST 19, ALT 20
5 weeks in : AST 18, ALT 12, VL "<15 detected"
10 weeks in : AST 19, ALT 14, VL "<15 not detected"
4 weeks post : "<15 not detected"

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: Why Does Harvoni Cause Headache?
« Reply #6 on: January 14, 2015, 04:44:11 pm »
Hi Joe,
How much salt do you use? Kidney failure is a huge issue for HCV patients, so just want to use your post as a segue to remind members to watch their sodium intake - 1500 or less is best.
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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 Lukey

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  • Let Thy Food Be Thy Medicine
Re: Why Does Harvoni Cause Headache?
« Reply #7 on: January 14, 2015, 05:00:43 pm »
Hi,

I add 1/4 to 1/2 tsp of Celtic salt to my morning bowl of soup. I don't measure sodium b/c I don't eat processed foods, and I take magnesium which helps balance sodium. Plus Real salt has 70+ minerals. :) I eat a lot of organic vegetables and the salt seems to balance well with all the potassium in the veggies. I think what screws up a lot of people is that they eat too much salty processed, canned, and fast foods. I do't eat that stuff, I haven't for 32 years.

Last blood test in October '14 my AST was 123 and my ALT was 155.
Everything else was normal except for my BUN / Creatinine ratio which was 23 (10-22) Is that bad, and does it have to do with my kidneys?

Thanks,

Joe
Logged
Male -  HCV since 1982 - Born 1951 ~ Geno 1a

Did 8 weeks of Harvoni in 2015. Got normal AST & ALT and undetected VL by week 5, then relapsed 4 weeks post.
-----------------------------------------------------------
July 5, 2018 : began 12 weeks of Vosevi with a VL of 540,000 and AST & ALT of 65 and 105.
2 weeks in : AST 19, ALT 20
5 weeks in : AST 18, ALT 12, VL "<15 detected"
10 weeks in : AST 19, ALT 14, VL "<15 not detected"
4 weeks post : "<15 not detected"

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: Why Does Harvoni Cause Headache?
« Reply #8 on: January 14, 2015, 07:07:06 pm »
I can't say if that is good or bad (I'm not a doc and this is only one lab test), but I can say that this may be an indicator of kidney problems.   1/4 teaspoon of sea salt has 400-590 mg sodium, so per se isn't an issue. 1/2 tsp is high - the issue is total sodium. Online trackers and aps can help you see if you have too much sodium
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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 Lukey

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Re: Why Does Harvoni Cause Headache?
« Reply #9 on: January 14, 2015, 08:38:22 pm »

OK thanks. I tend to crave salty foods like olives and sea salty popcorn. I'll cut back some on the sea salt. I usually salt the soup to taste, so nothing I ever eat is very salty unless I decide to eat several olives. I may quit popcorn because it can be a problem with damaging my teeth.

Joe
Logged
Male -  HCV since 1982 - Born 1951 ~ Geno 1a

Did 8 weeks of Harvoni in 2015. Got normal AST & ALT and undetected VL by week 5, then relapsed 4 weeks post.
-----------------------------------------------------------
July 5, 2018 : began 12 weeks of Vosevi with a VL of 540,000 and AST & ALT of 65 and 105.
2 weeks in : AST 19, ALT 20
5 weeks in : AST 18, ALT 12, VL "<15 detected"
10 weeks in : AST 19, ALT 14, VL "<15 not detected"
4 weeks post : "<15 not detected"

Offline CHepCFree

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  • Posts: 66
Re: Why Does Harvoni Cause Headache?
« Reply #10 on: February 26, 2016, 10:01:51 am »
The questions was.....Why Dos Harvoni Cause Headache?   I do not see any response that answers that.   There are many who are reporting headache long past the end of treatment.  It would be helpful to know what causes this in order to relieve it.    Is it mitochondrial toxicity, which anti-virals can cause?    I loss of nitric oxide...also a side of Harvoni?    Does anyone have any knowledge of WHY?   
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Offline FutureThinker

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Re: Why Does Harvoni Cause Headache?
« Reply #11 on: February 26, 2016, 11:10:43 am »
As I sit here on day 3 of my Harvoni train ride and have my first mild HA, perhaps a call to Gilead, the mfgr., would shed some light?  FT
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Treatment naive
Likely contracted mid-70s
Diagnosed 1a, 2011
F1-2
Harvoni X 12 weeks, completed 5/17/16
Pre-treatment: VL 3 mil, AST 64, ALT 84
4 week labs: VL 30, AST 21, ALT 14
8 week labs: VL UD!!!, AST 22, ALT 16
12 week labs: VL UD, AST 23, ALT 14
2 wk EOT: VL UD
12 wk EOT: VL UD, AST 22, ALT 13 =  SVR 12! Yay! 
Last hep appointment: VL UD, AST 19, ALT 12 = SVR 39! I AM DONE!

Offline slats1056

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Re: Why Does Harvoni Cause Headache?
« Reply #12 on: February 26, 2016, 02:00:21 pm »
 Still wondering Myself. Had some Migraines once or twice a week during Tx. The same post Tx. Until mid January. During Tx. had My eyes checked. No vein or pressure problems. Blood pressure was 135-145 over 75-85 all during Tx. Blood work has not shown any glaring abnormalities. Post Tx. My blood pressure spiked to 190-195 over 90-95 for some reason. Internist put Me on a low dose of Amlodipine to control it. Have been losing weight on purpose for My health. About 20 lbs. since starting Tx. in July 2015. Lots of neck stiffness & pain post Tx. that aggravates headaches. No one seems to be able to answer what the cause is. Hospital, G.P. ,Gastro. , Internist , Optometrist , Opthamalogist!!!!!Lots of questions and question marks , but no answers!!!! :o ??? ::) Been watching what I eat, drinking plenty of H2O, Eating more fruits & veggies , monitoring blood pressure. The most relief has come from Chiropractor and Massage Therapist since New Years. Ask the Doctors, pharmacists, and Gilead and they all seem to shrug their shoulders >:( >:( >:( >:( It got so bad over the holidays that I was taking muscle relaxers and Opioids to control the pain. I hate that crap with a passion , but it works! :( :( To this day I am still trying to figure it out and get some answers to no avail :P :-X ::) :(

  Reading about the long timers gradual recovery helps Me and gives Me hope. This is to good of an opportunity to squander. What with the miracles of modern medicine to eradicate the virus You would think that a headache cause/ cure would be an easy one! If You have never had I Migraine , more power to You. I never had one until treatment. I AM NOT BLAMING HARVONI. It's great to be free of the virus. I will bide My time and be proactive concerning My personal health!!
Logged
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline Lynn K

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Re: Why Does Harvoni Cause Headache?
« Reply #13 on: February 26, 2016, 03:33:57 pm »
I doubt a mild side effect as headaches has been investigated as to root cause. It is not a life threatening side effect and hasn't caused anyone to discontinue treatment because of them.

So not much cause to spend the effort.

Heck they don't really know what causes many headaches or even migraines.
Logged
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 CHepCFree

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Re: Why Does Harvoni Cause Headache?
« Reply #14 on: February 26, 2016, 03:41:58 pm »
There are a group of us that have a constant headache/migraine since taking Harvoni and it has been almost a year since we ended TX.    How nice of you to dismiss our issues.   That is why I seldom come to this site.
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Offline Lynn K

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Re: Why Does Harvoni Cause Headache?
« Reply #15 on: February 26, 2016, 03:56:26 pm »
I am just suggesting the perspective of the government and the drug company scientists sorry if I offended.

Have you reported this issue to the number on the prescribing information sheet to make the drug company and the FDA aware? If they have reports of serious side effects I am sure they would investigate.

https://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_pi.pdf

To report SUSPECTED ADVERSE REACTIONS, contact Gilead Sciences, Inc. at 1-800-GILEAD-5 or FDA at 1-800-FDA-1088 or www.fda.gov/medwatch.

I was commenting on the predicted and referenced in the information sheet about mild headaches not chronic post treatment migraines.

If anyone is experiencing significant or not listed side effects the need to report them to the above contacts


Logged
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 slats1056

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  • SVR to all and to all a good life!
Re: Why Does Harvoni Cause Headache?
« Reply #16 on: February 26, 2016, 04:51:30 pm »
 I contacted both Gilead and FDA with respect to the Migraines as well as other side effects that I was having regarding My treatment. Wouldn't classify a Migraine in the mild side effect category as they can be debilitating to the person that has one. My experience has been to shut out the sound, turn out the light, try to clear the mind, medicate as needed , and hope that the headache is short lived. Once or twice I have actually been physically ill during the worst part of the headache. I do not wish this on anyone and do not diminish the effects of those that suffer from them. CHepCFree, I don't think that Lynn K was trying to dismiss Your issue . That is why I try to choose My words carefully when posting so as not to be misconstrued or taken in the wrong vein as there is no way to judge, explain , or rebut a statement on the spot.
 I do hope You are getting better day by day. I know first hand that these issues can be very trying and hope sincerely that Your quality of life is improving.
Logged
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline Mugwump

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Re: Why Does Harvoni Cause Headache?
« Reply #17 on: February 26, 2016, 04:53:48 pm »
Lukey; in answer to your original question. Here is what I suspect is happening. The headache does not instantly occur upon taking the med so most likely the headache is somewhat akin to having a hangover.


Ergo:


When your liver has a bump of cells die off for any reason you get a headaches. A headache from a hangover is double trouble because alcohol also reduces the ability of the liver to metabolize glucose and you become hypoglycaemic. But even as your liver recovers from the insult and sends out more sugars to the brain the hangover stays because there are still semi toxic by products of the cells being broken down by the body and then discharged.


So in conclusion what is most likely happening with Harvoni is that there is a sudden increase in the by products of dead liver cells that the renal system needs to flush. That is precisely why being properly hydrated during treatment helps ease the headaches, and more to the point exactly why people who have kidney failure are not good candidates for treatment.


CHepCFree


I am very much puzzled as to why you are experiencing what you are going through!
To have headaches long after treatment as you are reporting is not something that any of us has experienced and should really be sorted as to cause.


I still have tinnitus, but it was even worse before treatment. I still have some pain in my hepatic region especially if I develop gas, which seems to put pressure on my liver and cause it to hurt distal to the far right lobe of the liver. BUT this problem has been with me for over 15 years and is most likely due to having a liver the size of Texas that has little border tolerance in a bilious old fart like me. My bp is all over the map but I can relax and get my heart rate down into the 70s now, whereas before treatment it was up in the 80s resting!


If you are experiencing systemic respiratory difficulties and are on the verge of heart failure I truly hope and pray that you find relief from these conditions and soon!


Lukey and all who are not doing well:
You are in my thoughts, all my hopes and prayers go out to you as well as all those who are not yet SVR and cured or are having troubles post treatment.


Eric
Sorry slats I did not know you were having them! Ditto on the hopes and prayers.
« Last Edit: February 26, 2016, 04:57:33 pm by Mugwump »
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https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline FutureThinker

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Re: Why Does Harvoni Cause Headache?
« Reply #18 on: February 27, 2016, 11:05:23 am »
Very interesting discussion here.  Since this drug is only 1.5 years on the market, there will be a lot more info gathered about it as more and more of us get on this train -- the cure train.  I do hope answers come in the near future! FT
Logged
Treatment naive
Likely contracted mid-70s
Diagnosed 1a, 2011
F1-2
Harvoni X 12 weeks, completed 5/17/16
Pre-treatment: VL 3 mil, AST 64, ALT 84
4 week labs: VL 30, AST 21, ALT 14
8 week labs: VL UD!!!, AST 22, ALT 16
12 week labs: VL UD, AST 23, ALT 14
2 wk EOT: VL UD
12 wk EOT: VL UD, AST 22, ALT 13 =  SVR 12! Yay! 
Last hep appointment: VL UD, AST 19, ALT 12 = SVR 39! I AM DONE!

Offline slats1056

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  • Posts: 765
  • SVR to all and to all a good life!
Re: Why Does Harvoni Cause Headache?
« Reply #19 on: February 28, 2016, 12:14:58 am »
 Eric,

  Thanx for the good wishes! I always look forward to Your posts and thoughts. Very mind provoking and insightful. Makes one explore issues not always in the fore front. It's good to read posts from the earlier Tx'ers that are now the old timers as it were.
 Keep on pickin' and grinnin' Man ;D
Logged
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline chino1969

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  • Posts: 117
Re: Why Does Harvoni Cause Headache?
« Reply #20 on: February 28, 2016, 12:07:27 pm »
I went through 24 weeks of Harvoni with minimal side effects.  I drank at least 1 gallon or more of water a day.
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