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Author Topic: new on Harvoni and could really use advice.  (Read 5233 times)

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Offline Mikey87

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new on Harvoni and could really use advice.
« on: December 06, 2017, 12:06:07 pm »
Hello everyone, I've been browsing on here for years and recently just started Harvoni. I'm on day 8 of 12 week treatment, and been having muscle pain and burning on my hands and arms and doctors say it's not a known side effect and I don't know what to do :( I'm 30 years old Have genotype 1A my viral load was at 1.5 million and my fibro score is f3. the pain and numbness started on day 2 and comes and goes been to the E.R twice and they referred me to a neurologist, they think it may be neuropothy, has anyone gone through this or have any tips?
« Last Edit: December 06, 2017, 12:42:29 pm by Mikey87 »

Offline andrew j

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Re: new on Harvoni and could really use advice.
« Reply #1 on: December 06, 2017, 09:19:06 pm »
Hi Mikey,

Our bodies go through a profound transformation during treatment, after years, or even decades of illness.
This transition can cause problems for some people, esp. for the immune system, as it tries to deal with, and then adjust to such radically and quickly-changing conditions.

Most people have few, and mild side-effects (typically a bit of joint pain, and the odd transient headache).
Usually these side-effects can be managed effectively by eating well, and drinking plenty of water.
Unfortunately though, some do, or have, experienced adverse or allergic-type reactions.
I have certainly heard of neuropathy-like symptoms like the ones you are describing.
Looking at 'Peripheral Neuropathy Fact Sheet', 'Medication Toxicity' is listed as one of the causes.
It mentions antiretrovirals in particular - which are not entirely dissimilar in their action to DAAs (these Hep C drugs).

Only you know how you feel, and how serious it is.
It sounds as if you are getting good advice and guidance from your medical advisers.

Hoping that these side-effects calm down for you soon.
If they don't - or if they get worse - you might report a possible adverse reaction to the FDA, and Gilead (the drug's manufacturer).
They might be able to offer you some advice.

Best wishes,
A.

Offline KimInTheForest

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Re: new on Harvoni and could really use advice.
« Reply #2 on: December 06, 2017, 10:35:10 pm »
Hello everyone, I've been browsing on here for years and recently just started Harvoni. I'm on day 8 of 12 week treatment, and been having muscle pain and burning on my hands and arms and doctors say it's not a known side effect and I don't know what to do :( I'm 30 years old Have genotype 1A my viral load was at 1.5 million and my fibro score is f3. the pain and numbness started on day 2 and comes and goes been to the E.R twice and they referred me to a neurologist, they think it may be neuropothy, has anyone gone through this or have any tips?

Hi Mikey. What you are describing does sound like peripheral neuropathy. If you have never experienced this before - especially the numbness - but only since starting Harvoni, I think you should see a doctor a.s.a.p. It may not be serious. But if you are having some sort of neurological reaction to the Harvoni itself, then that should be addressed sooner rather than later. Can you phone the office of your prescribing doctor?

good luck!
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 Mikey87

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Re: new on Harvoni and could really use advice.
« Reply #3 on: December 06, 2017, 11:23:55 pm »
Thank you guys for taking the time and replying, I have been in contact with my specialist as well as gilead and get the simple it's not a known side effect I go to see a neurologist tomorrow hopefully to get some answers I really don't want to quit treatment but I also don't want life long pain either so conflicted :( it seems to come and go through out the day and really bothers me at night at bed time. I take my pill at 3 in the afternoon and go to bed around 11 sometimes later. Thank you guys for taking the time and replying truely appreciate it.
« Last Edit: December 06, 2017, 11:30:42 pm by Mikey87 »

Offline KimInTheForest

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Re: new on Harvoni and could really use advice.
« Reply #4 on: December 07, 2017, 01:01:50 am »
Peripheral neuropathy (including numbness in hands/feet/limbs) can also be a sign of vitamin B12 deficiency. Maybe your B12 level was borderline and something about harvoni depleted it further? Just a thought. Why not ask for a B12 test while you're at the doctor's.

good luck!
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 andrew j

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Re: new on Harvoni and could really use advice.
« Reply #5 on: December 07, 2017, 03:57:38 am »
Mikey,

The trouble is - these drugs haven't been around for that long, which results in certain difficulties:

There are no clear pathways for the management of people who might be having difficulties with treatment (just as there is no prior screening carried out yet to pick up people who might have resistances to some of these drugs) - and to make matters worse - there is still considerable denial that adverse reactions to these drugs happen at all.

Big Pharma doesn't want reports of adverse reactions to it's drugs!

I do understand your conflict.

Most of the folks here - myself included - would advocate trying to hang on in there.
Most (but, it has to be said, not all) people recover reasonably normally after they finish treatment.

Keep doing what you are doing - and get all the medical help you can.

I hope that these side-effects ease up for you soon!

(P.S. You could Google 'Harvoni and Peripheral Neuropathy').

Offline Mikey87

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Re: new on Harvoni and could really use advice.
« Reply #6 on: December 07, 2017, 02:09:28 pm »
Just got back from the neurologist and passed all the sensory tests so she wasn't too concerned and thinks it could be a b12 deficiency so just waiting for the results but picked up some b12 just to see if it helps.

Offline KimInTheForest

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Re: new on Harvoni and could really use advice.
« Reply #7 on: December 07, 2017, 02:39:30 pm »
Just got back from the neurologist and passed all the sensory tests so she wasn't too concerned and thinks it could be a b12 deficiency so just waiting for the results but picked up some b12 just to see if it helps.

Great! The best, most-effective B12 is one that you can take sublingually, either as tablet or liquid - i.e., let it dissolve under your tongue rather than swallowing it so that it goes directly into your bloodstream without going through the GI system. I use methyl-cobalamin rather than the cheaper cyano-cobalamin.

Good luck!
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 Ella

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Re: new on Harvoni and could really use advice.
« Reply #8 on: December 07, 2017, 08:06:16 pm »
Hey Mikey,

During treatment with Epclusa, I felt like I had a mild to moderate sunburn at night after I took my pill. I would get the feeling on arms, upper back, stomach and neck. My doctor's office had never heard of that as a side effect either, by the way. I used ice packs for relief.

I had some weird nerve issues before treatment including burning feet (not diabetic), and for a period of time a feeling like sparks were showering over my head and upper body. Really weird.

I had an MRI, B12 tests, and lots of auto-immune testing, but all was negative. After getting diagnosed with HCV, I found an association between HCV and small fiber neuropathy, which can cause burning in hands or feet and skin. Or perhaps an unrelated issue.

For what it's worth, I felt like Epclusa exacerbated my existing nerve issues and increased side effects for some of my other meds (like Prozac, which I had to discontinue during treatment). Since completing treatment, all the symptoms have backed off, but it's still my body with its issues. :) I figured I'll give it six months or a year before assessing what symptoms may have been caused by the virus and what is a separate issue I may still need to pursue.

My biggest post-treatment oddity is that I have a lot of buzzy energy I'm not used to  and insomnia! I was super tired before treatment and on treatment, so it's kind of great, but I'm having to get used to it (and cutting down on coffee for sure!).

Anyway, if your neuro isn't worried, hopefully your symptoms won't interfere with your treatment.

Keep us posted about the B12. I had a friend who was severely deficient, and his hands and arms were completely numb. Glad you asked about it!

~Ella
« Last Edit: December 07, 2017, 08:09:10 pm by Ella »
Pretreatment: Genotype 3A; Fibrosure F1-F2; VL 2.8M; ALT 93; AST 76
Began treatment Sept 1 2017
4 weeks (Oct 2): ALT 29; AST 20; VL Not done
8 weeks: ALT 58 (6-29); AST 36 (10-35); VL <15 IU/ml DETECTED
EOT + 5 days: Fibrosure F0-F1; ALT 32 (6-29); VL NOT DETECTED :D
EOT + 8 weeks: ALT 17 (6-29); AST 16 (10-35); VL not done
EOT + 12 weeks: VL NOT DETECTED = SVR12 :D :D
EOT + 24 weeks: VL NOT DETECTED = SVR24 I'm DONE! :D :D :D

Offline Mikey87

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  • Posts: 15
Re: new on Harvoni and could really use advice.
« Reply #9 on: December 11, 2017, 07:20:31 pm »
Just to update you guys, after starting b12 all my symtoms are gone!

Offline KimInTheForest

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Re: new on Harvoni and could really use advice.
« Reply #10 on: December 11, 2017, 07:37:21 pm »
Just to update you guys, after starting b12 all my symtoms are gone!

Fantastic Mikey! Glad it was that simple. :)

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 andrew j

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Re: new on Harvoni and could really use advice.
« Reply #11 on: December 11, 2017, 11:39:34 pm »
Gosh - that really is fantastic!

Every time I think about this I break out into a smile.

You're right, Kim.
Rarely is it so simple!
Well spotted - and well done - all of you!!



« Last Edit: December 12, 2017, 01:25:47 am by andrew j »

Offline Mikey87

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  • Posts: 15
Re: new on Harvoni and could really use advice.
« Reply #12 on: February 03, 2018, 02:15:58 am »
Hey everyone just wanted to pop in and let you know how things are going, I have 18 days left ! Got my 4 weeks blood work back and it was undetected! The symptoms I was having still come and go maybe once a week and had a week of zero symptoms it was amazing, but sadly a new one has popped up. For the past two weeks I have been having ringing in my ears (tinnitus) never had it before and it worries me because i've seen some posts online about it not going away :( went to an E.N.T to get answers but they found that I have an ear infection so i'm treating that for 10 days then in 3 weeks having a hearing test. Please tell me this too shall pass. Has anyone else had tinnitus while on Harvoni? Thanks in advance and hope you all are well!

Offline KimInTheForest

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Re: new on Harvoni and could really use advice.
« Reply #13 on: February 03, 2018, 03:30:45 am »
Congrats on being undetected at 4 weeks Mikey! I had an increase in tinnitus on Harvoni, which persisted a while after I finished but eventually subsided. I have heard a number of others members here mention tinnitus while on Harvoni. It should go away at some point after finishing.

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 Lynn K

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Re: new on Harvoni and could really use advice.
« Reply #14 on: February 03, 2018, 03:40:51 am »
I had tinnitus for several years before treatment and still do today. But I worked as a mechanic or in machine shops most of my life.

Although I constantly hear several tones all day and night they don’t really bother me and unless I am thinking about them I can easily ignore the sounds.
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 Mikey87

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  • Posts: 15
Re: new on Harvoni and could really use advice.
« Reply #15 on: February 03, 2018, 04:20:44 am »
Thanks for the replies kim and Lynn! Kim thanks for always chiming in , you've been a great comfort through my treatment! I've never had tinnitus so it really freaked me out and broke me down...I had a moment of what did I get my self into but I am truly blessed that this treatment is working and kim your words bring me some relief that it will go away, my liver specialist said the same thing but lately I feel like I get no answers when I tell them my symptoms and get brushed off with the " we never heard of that in office or in trials" and then they tell me to stay off the internet but in times like these who else to get better insight then someone who's going through the same thing you know? So thank you for the advice !

Offline Type0Negative

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  • Posts: 59
Re: new on Harvoni and could really use advice.
« Reply #16 on: February 05, 2018, 11:14:42 pm »
Mikey

Medicines that damage the ear and cause hearing loss are known as ototoxic medicines. They are a common cause of hearing loss. Usually, when tinnitus begins, medication should be discontinued. This is not good news, actually very scary.

There also such thing as "Palmar Erythema". Feel free to research and see if it describes your burning hands symptom. This condition is frequently related to liver cirrosis but also associated with Hep. C. I personally not on treatment, but have this problem. It triggered with certain foods for me. Most often I noted it being triggered by Chineese food and spices (such as italian). 

Offline Mikey87

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Re: new on Harvoni and could really use advice.
« Reply #17 on: May 28, 2018, 12:38:52 am »
Just wanted to pop in and let everyone know I am finally cured!!! I reached svr 12 on friday! hope everyone is doing well!

Offline Lynn K

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Re: new on Harvoni and could really use advice.
« Reply #18 on: May 28, 2018, 12:17:27 pm »
Hi Mikey!!

That is fantastic news congrats and thanks for letting us know :)
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 Ella

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  • Posts: 34
Re: new on Harvoni and could really use advice.
« Reply #19 on: May 28, 2018, 01:48:53 pm »
Congratulations, Mikey!!!!!   :D
Pretreatment: Genotype 3A; Fibrosure F1-F2; VL 2.8M; ALT 93; AST 76
Began treatment Sept 1 2017
4 weeks (Oct 2): ALT 29; AST 20; VL Not done
8 weeks: ALT 58 (6-29); AST 36 (10-35); VL <15 IU/ml DETECTED
EOT + 5 days: Fibrosure F0-F1; ALT 32 (6-29); VL NOT DETECTED :D
EOT + 8 weeks: ALT 17 (6-29); AST 16 (10-35); VL not done
EOT + 12 weeks: VL NOT DETECTED = SVR12 :D :D
EOT + 24 weeks: VL NOT DETECTED = SVR24 I'm DONE! :D :D :D

Offline colaa4

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Re: new on Harvoni and could really use advice.
« Reply #20 on: June 30, 2018, 01:31:41 pm »
a fair number of people have reported muscle/joint pain. sometimes its nerve damage. sometimes gets worse after treatment and doesn't go away. omega 3s may help. i've had the 'sunburn sensation' as well. I am also scared to continue treatment in case of permanent nerve damage and worsening, lasting leg pain. i'm about done with week 4 and having levels tested monday. maybe i'm clear of the virus.

Offline Lynn K

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Re: new on Harvoni and could really use advice.
« Reply #21 on: June 30, 2018, 02:46:30 pm »
Hi Colaa4 and welcome

Just wanted to give you a couple of suggestions.

No sure how much notice you will have by adding onto the end of older threads you could just try to pm the original posters. Also as several have made comments they may not be sure who you are addressing your question to.

You are welcome of course to start your own threads.

While sadly some people do have a more difficult time with treatment that has not been what the majority of patients experience. Sometimes through worry we can be on the look out for anything out of the ordinary and attributable it to treatment which may or may not be true.

My suggestion is expect good things. Also the 4 week on treatment test is not considered only that the virus is below the tests ability to detect the virus this does not mean all the virus is eridcated which is why your result will likely state “NOT DETECTED” which is not the same as zero virus.

Wishing you an easy go with your treatment :)
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 Nsncy

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  • Posts: 1
Re: new on Harvoni and could really use advice.
« Reply #22 on: July 01, 2018, 06:43:02 pm »
I used my cell phone and low and behold my name is nsncy but it is Nancy. I am on day 3 of Harvoni. My insurance approved 12 weeks. I am genotype 1a and had previous interferon tx way back to no success. My scan is F2/F3 and my enzymes are 2 times where they should be. My viral load at first was 350,000 somewhere in that ballpark and the last time I had it tested it was 153,000 somewhere around there. They were done twice because my doctor did not know to run the NS5A test prior to treatment. My insurance was good working with him. He is have 3 specialist also assist. I have my General Practitioner guiding my treatment. So far so good with no side effects and am drinking a lot of water and going to the bathroom a lot but that is it. I am grateful because we are in the middle of a heatwave. Not sure how many people still use this forum but I am trying to find somewhere for support on my journey. :)

Offline Lynn K

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Re: new on Harvoni and could really use advice.
« Reply #23 on: July 01, 2018, 11:58:46 pm »
Hi Nancy and welcome

I think you should be able to modify your screen name could be a problem if there is more than one other Nancy so you might have to go with Nancy1 or something.

I also treated back in the day with first interferon monotherapy which was 3 shots a week of interferon with nothing else. This was before ribavirin and the improved pegalayed interferon that could be taken one shot a week. I treated 3 times with interferon based treatment 6 months each time and wan a null responder my viral load actually increased on treatment.

I was infected for probably 37 years. I learned I was infected in 1990 after probably being infectedfor 12 years at that point. After 3 failed treatments and 30 years of being infected I learned via liver biopsy I was at F4 fibrosis. That was January 2008.

In 2014 the new drugs were being approved and in March 2014, I started with Sovaldi and Olysio for 12 weeks. Unfortunately I was found to have relapsed 12 weeks post treatment.

Then in October 2014 Harvoni was approved. In November my doctor started me in 24 weeks of Harvoni and a few weeks in we added ribavirin forsome extrainsurance because of my treatment history. I finished that treatment in May 2015 and have been free of the virus ever since.

So right now I am 38 months cured and cirrhosis for 10.5 years.

Still kickin still crazy after all these years!

Best of luck to you with treatment go slay that dragon!
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!

 


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