Is Anybody Else Experiencing Arthritis Pain in Joints After Harvoni ? Help

[lavilla1970]

I have completed a 12 week treatment of Harvoni a little over a month ago, and I have been experiencing very bad symptoms of arthritis that started in the 7 th week of treatment . It's been non stop problems since then , so almost 10 weeks of pain now. I first had a pain in my lower back , quite bid I thought it might be  a herniated disc - nut after feeling the nodule on the facet  of my spine, I am sure it is some form of rheumatism . It started with the back , and then last month became a problem with my right  index toe, so bad I could not walk , (I thought it was capsulitis) and then at the same time joint pain in my big toe of my left foot , and then left ankle was sore, and then left knee quite sore. 

I woke up this morning to see one of the knuckles on my left hand is starting to swell and be sore - absolutely arthritis happening .  I had the HCV virus for over 20 years without ANY symptoms whatsover  - mild inflammation in my liver . Now they tell me congratulations that the virus is undetectable , and suddenly I am developing very serious arthritis all over . I am praying this isn't Rheumatoid Arthritis .

Docs tell me I probably have the arthritits form years of Hep C, but it really doesn't make sense that I never had a symptom until my body is rid of HCV - so basically the cure is worse than the disease. I am rid of HCV , but I could be crippled with RA and still die 10 years sooner .  I am a 47 year old man who has been extremely fit my entire life, until taking Harvoni .

Now I am trying to get lab work through the VA to test for RA , but they are slower to do this then they were for my Harvoni blood results.

Please tell me if anyone is experiencing anything similar, and how long does it last - will this ever get better ?

[Mugwump]

The answer is a definite yes to your question. Our best guess is that many of us have a sudden upswing in the natural antibodies count against HCV when we are cured.

I am F4 cirrhotic compensated... and will stay that way, touch wood. It took almost a year for things to settle down to a level of comfort where working long shifts on my feet again became doable frequently. I am 65 and semi retired as are many of us who are being treated for HCV, so I did not and do not expect other miracles to occur other than the one that did, I am completely SVR cured of HCV and my quality of life has certainly improved since treatment.

However, and it is concerning, we have seen on this forum those with much less liver damage experience post treatment effects somewhat akin to an immunity caused arthritis and myalgia of the muscle groups and associated connective tissues. 

This precisely why the study of the differences in how successful treatment outcomes curing the liver of HCV effect the human immune system is very prudent line of research IMO.

Either way I do not tend to blame specifically Harvoni or other DAA treatments for this as many have come to recently.

HOWEVER if components of these drug can be found to linger or do excessive damage to human cells other than half dead liver cells which are the necessary target of treatment, in future my opinions of certain facts about DAA's based on Sofia's magic bullet method might change.

[KimInTheForest]

Hi Lavilla1970. A number of members have had an experience similar to what you describe during & post-Harvoni. It might be worth googling "cytokine storm" and "cytokine cascade" to see whether this might be part of the issue. Harvoni and other new direct-acting antivirals knock out Hep C very quickly. Most of the work occurs in the first 7 days of treatment. So that's pretty fast. Yet the body is surely producing the antibodies and other disease-fighting mechanisms it has grown accustomed to doing for years & decades. Perhaps a cytokine storm can result from this.

https://en.wikipedia.org/wiki/Cytokine_storm

Would also be worth reading up on foods that are inflammatory, and foods that are anti-inflammatory. Change diet as needed. Body will thank you in any case.

Good luck!
kim

[Mugwump]

Well done Kim! That could very well turn out to be the cause. I just had my flu shot this year and did react to it much more than in past.

So it seems my immune system is much more aggressive than it was when the damage caused by HCV was constantly eating away at my liver's ability to create the essential elements needed for a normal human immune system.

The human immune system is a double edged sword it can certainly do damage if it goes out of whack.

Again the study of how DAA treatments effect the production of HCV antibodies and what extra hepatic damage they actually do if suddenly created in large numbers again, perhaps is the only way to ascertain why some individuals are having these specific issues with treatment. 

[abolden]

Yes, I am after 12 weeks Harvoni treatment, I am 57, however I have arthritis symptoms before starting Harvoni, but I would not change anything. 90 days post Harvoni treatment I am cured, I had chronic Hep C for over 30 years, Interferon injections and pills did work for a short time, however, the virus just exploded.  Blessed to be cured.

[CureSeeker]

Hi guys!

Lavilla, what are your genetic factors for arthritis?  Has anyone in your family ever claimed to be arthritic or been diagnosed with Rheumatoid Arthritis?

Just like abolden, I had slight symptoms prior to treatment.  Post treatment, those symptoms have increased.  Osteoarthritis is a normal part of the aging process for anyone over 45 or that has ever fractured bones.  Prior to treatment I was tested and have a high RA factor.  RA runs in my family back to at least a grandmother. 

Then we have anemia, either regular or hemolytic, that deprives the blood of oxygen, which is damaging to bones. 

It has long been known on these forums that Ribavirin (either used separately or as a component of other drugs) can aggravate RA, and patients have long been reporting joint pains during and post treatment, but reality is we could all be experiencing the 'side effects' of simply aging or our family genes as well.

Personally, I've seen what happens when HCV is ignored or treatment unsuccessful.  I'm happy to be experiencing a little more joint pain, regardless of its origin - in comparison.

[CureSeeker]

P.S.  Most of us are at an age where we should be supplementing Calcium, vitamin D and vitamin K.

[lavilla1970]

Thank You for responding to my post. As far as I know , no one in either side of my family suffered from RA or much arthritis. I am currently awaiting the results of some blood tests to determine my RA factor, as well as my ESR and CRP levels to help diagnose the problem.

As for my age being a factor, I really am a young 47 (very athletic and I look at least 10 years younger) so I moved around as I had in my early 20's right up until the 7th week of Harvoni treatment when the problems started in the lower facet of my spine .

Since then I now have sever capsulitis in my right index toe, pain in my left big toe, pain in both ankles, pain in my left knee, and discomfort in both of my hip flexer muscles.  Basically , for the past 3 months things have gotten steadily worse and migrating very quickly , and I am taking up to 2000 milligrams of ibuprofen a day just to remain somewhat mobile enough to walk , although now I limp severely .

So far the VA doctors are very reluctant to say this has anything to do with the Harvoni treatment, which is absolutely absurd because I never had a single problem for 47 years until 4 weeks after taking these pills, and now I am crippled with pain .

I am not suggesting that this is a direct side effect of the drug per se, but this is definitely connected to the treatment as an autoimmune response to treatment

This is absolutely not a coincidence

[KimInTheForest]

Any time I hear mention of big toe pain, I think gout. Even if you have no history of gout, maybe Harvoni is affecting the uric acid level in your blood resulting in gouty symptoms. Might be worth have a blood test for your uric acid level.

kim

[lavilla1970]

I wish this was gout - I am experiencing very serious arthritis all over my body - both feet in multiple toes , both ankles, one knee , lower back .....this is not gout .

[Mugwump]

I wish this was gout - I am experiencing very serious arthritis all over my body - both feet in multiple toes , both ankles, one knee , lower back .....this is not gout .

Personally I cannot say that I have experienced exactly the same symptoms post treatment with a cure. However I did also have the test for RA factors and fortunately for me it came back negative. My problems post treatmen was with mild ongoning myalgia in the major muscle groups and fairly noticeable joint pain at times.

But before successful DAA treatment with Harvoni in 2015 the knuckles in my hands had swollen to the point that the athleticism necessary for playing concert classical guitar was compromised to the point that I had given up playing.  So in my case I had pre existing arthritis in my joints and my mother had RA.

Post treatment 2.5 years, I still have swelling in the distal phalanges at the joints of both my right and left hands. An old industrial accident injury that broke L4 and caused progressive scoliosis of L4-5 in my lower spine with fairly severe compromised function of my left leg when on my feet for long periods of time due to nerve pinching and a bulging L4-L5 disk. I frequently had to use a cane for several years after interferon treatment in 2004-5.

But I am now back studying concert masterpieces on the classical guitar and my hands no longer hurt, or cramp up the with extremely fast and controlled complex movements necessary for the successful playing of the music I love most.

During treatment when my liver functions finally normalized, for me it was like walking on clouds! So I have to an extent experienced the complete opposite effect and can with all honesty claim that the problems I still have are largely due to being over weight, smoking some... (I am still an addict) and what I call OMS or a general case of Old Man Syndrome. So for me a successful DAA treatment was indeed a miracle.

I truly hope you find a resolution as to why you have experienced the complete opposite of what I have with Harvoni treatment. I fully know that this might seem somewhat smug but I am being fully truthful here.

There must be a reason why some of us do experience more problems post treatment and it begs a more thorough investigation into the cause(s). Yes, post treatment it took a fairly long time for my system to settle down and there was a definite increase at first of the symptoms that are known to be associated with the extra hepatic manifestations of HCV infection.

To date the only antibody level studies undertaken into the post cure effects of HCV treatment were done in Europe and Japan and are outdated due to the advent of DAA treatments.

Here is one known fact about a change in HCV antibodies that is rather telling, it seems that their effects upon the modulation of our immunity can indeed be much more diverse than is currently understood. Not at all the same as how AIDs attacks and kills immune cells but to an extent almost as concerning if it is proven that either an increase or decrease in hcv antibodies can in ways effect our immune system key functions.

"Hepatitis B (HBV) reactivation associated with severe hepatitis flare has been increasingly recognized as a potential adverse event associated with HCV DAA therapy. Previous reports have described HBV reactivation after interferon-based therapy, but in these prior cases, clinically significant hepatitis was rare. Chronic HCV has been known to suppress HBV replication in persons coinfected with HCV and a reciprocal interaction between these viruses has long been postulated. The elimination of HCV can result in a potential loss of immunologic control of HBV infection and HBV reactivation."

Citation https://www.hepatitisc.uw.edu/go/treatment-infection/monitoring/core-concept/all

These findings alone clearly indicate that there are significant immunologic changes in some individuals who undergo successful HCV treatment. This in turn begs the question: is there an increase in antibodies to HCV in some people, or does a sudden loss of antibodies in some way remap the human immune system and cause unexpected secondary problems?

This is all just speculation until more science is done but your problems and the specific RA like problems many other people who are cured with DAA treatment need to be investigated much more thoroughly.

I HIGHLY ENCOURAGE YOU to delve into this possibility with your trusted health care professionals, every fact that can be gleamed about how HCV effects human immunity is very important to medical science.

All the best at finding a simple resolution to your problems and the best of the season and a new beginning in the next year and better years to come for all of us who have lived with the nightmare of HCV hanging over our lives.

Eric   

[Tommy E]

5 months hepC free and some increase in joint arthritis (nothing painful or very bothersome) but then I am 70. No problems with my flu shot this year. No post Harvoni negative side effects that I can see.

[Angelica]

Thank You for responding to my post. As far as I know , no one in either side of my family suffered from RA or much arthritis. I am currently awaiting the results of some blood tests to determine my RA factor, as well as my ESR and CRP levels to help diagnose the problem.

As for my age being a factor, I really am a young 47 (very athletic and I look at least 10 years younger) so I moved around as I had in my early 20's right up until the 7th week of Harvoni treatment when the problems started in the lower facet of my spine .

Since then I now have sever capsulitis in my right index toe, pain in my left big toe, pain in both ankles, pain in my left knee, and discomfort in both of my hip flexer muscles.  Basically , for the past 3 months things have gotten steadily worse and migrating very quickly , and I am taking up to 2000 milligrams of ibuprofen a day just to remain somewhat mobile enough to walk , although now I limp severely .

So far the VA doctors are very reluctant to say this has anything to do with the Harvoni treatment, which is absolutely absurd because I never had a single problem for 47 years until 4 weeks after taking these pills, and now I am crippled with pain .

I am not suggesting that this is a direct side effect of the drug per se, but this is definitely connected to the treatment as an autoimmune response to treatment

This is absolutely not a coincidence

lavilla1970,

I have experienced RA symptoms since a little after EOT and I do not mean just joint pains. I too do not have anybody in my family with this condition or indeed any autoimmune condition. My symptoms are not as bad as yours but my recent blood test returned a positive RA factor. I have been referred to a rheumatologist.  I have been taking very good care of myself by following the advice Luna7 has given in a couple of posts regarding bone broth, diet and supplements and this is the way I have tried to fight this. I have kept active as much as possible, and I will continue do to so.

I do not know what kind of life I would have had, had I not gone for treatment. However, hep c is a serious condition and I am not questioning my decision, despite my suspicions regarding this treatment. I cannot change the past, so I am focusing on the present.
 

[BattleTheBeast]

Just a side not and something to check on. I ended up during (and got worse) serious muscle/body pain and 4 different doctors told me it was Fibromyalgia however I also had after treatment very high cholesterol. What was actually wrong was clogged arteries were blocking the oxygen all over my body. I had 2 stents put in and major body pain left.  Something to look into if you haven't already

[Lynn K]

Hi Mel!

Nice to hear from you hope you are doing well these days

[hope2bcured]

OMG YES!!!  I finished Harvoni in 2015  and am still HCV free, however I suffer horribly with pain I never had before since taking it. I am also having issues with nerves in various parts of my body, have had hearing loss and tinnitus since harvoni, have gained a ton of weight since, that I cannot lose, and my body is just a box of pain. The only difference I feel that is better since taking that drug is I no longer get Liver pains, to be honest, had I known that I would end up in all this pain, I NEVER would have taken Harvoni. I thought my life would get better and I would be able to go back to work, and that has NOT been the case.  I think Gilead was very dishonest in regard to the side effects especially long term side effects.

I have completed a 12 week treatment of Harvoni a little over a month ago, and I have been experiencing very bad symptoms of arthritis that started in the 7 th week of treatment . It's been non stop problems since then , so almost 10 weeks of pain now. I first had a pain in my lower back , quite bid I thought it might be  a herniated disc - nut after feeling the nodule on the facet  of my spine, I am sure it is some form of rheumatism . It started with the back , and then last month became a problem with my right  index toe, so bad I could not walk , (I thought it was capsulitis) and then at the same time joint pain in my big toe of my left foot , and then left ankle was sore, and then left knee quite sore. 

I woke up this morning to see one of the knuckles on my left hand is starting to swell and be sore - absolutely arthritis happening .  I had the HCV virus for over 20 years without ANY symptoms whatsover  - mild inflammation in my liver . Now they tell me congratulations that the virus is undetectable , and suddenly I am developing very serious arthritis all over . I am praying this isn't Rheumatoid Arthritis .

Docs tell me I probably have the arthritits form years of Hep C, but it really doesn't make sense that I never had a symptom until my body is rid of HCV - so basically the cure is worse than the disease. I am rid of HCV , but I could be crippled with RA and still die 10 years sooner .  I am a 47 year old man who has been extremely fit my entire life, until taking Harvoni .

Now I am trying to get lab work through the VA to test for RA , but they are slower to do this then they were for my Harvoni blood results.

Please tell me if anyone is experiencing anything similar, and how long does it last - will this ever get better ?

[morab]

Thank You for responding to my post. As far as I know , no one in either side of my family suffered from RA or much arthritis. I am currently awaiting the results of some blood tests to determine my RA factor, as well as my ESR and CRP levels to help diagnose the problem.

As for my age being a factor, I really am a young 47 (very athletic and I look at least 10 years younger) so I moved around as I had in my early 20's right up until the 7th week of Harvoni treatment when the problems started in the lower facet of my spine .

Since then I now have sever capsulitis in my right index toe, pain in my left big toe, pain in both ankles, pain in my left knee, and discomfort in both of my hip flexer muscles.  Basically , for the past 3 months things have gotten steadily worse and migrating very quickly , and I am taking up to 2000 milligrams of ibuprofen a day just to remain somewhat mobile enough to walk , although now I limp severely .

So far the VA doctors are very reluctant to say this has anything to do with the Harvoni treatment, which is absolutely absurd because I never had a single problem for 47 years until 4 weeks after taking these pills, and now I am crippled with pain .

I am not suggesting that this is a direct side effect of the drug per se, but this is definitely connected to the treatment as an autoimmune response to treatment

This is absolutely not a coincidence

Post tx 2 years
increase of skin cancer, basil cell removed from forehead and heading in to months of skin treatments, my skin rash began during tx along with extreme dryness that has not stopped, the itching is horrible. All of a sudden after tx I was covered in pre cancerous skin lesions, i finally got an insurance plan so that i can finally deal with the symptoms that have wreaked havoc on my body for 2 years now
to date.........severe back pain, toes and feet numb and hurting, leg cramps that don't stop. skin cancer, head aches daily, tinnitus, vision much worse, chronic fatigue and I have not been able to return to work since tx,
I am not saying it was the drug per say,,,,but it was either the drug or my immune systems reaction to the drug or attacking other parts of my body after getting rid of the hep c.
I would gladly go back in time and do more research ,,,my life now is just pain, physical pain every day all day, 24/7
I would not recommend this drug for anyone after the way i feel now.
Morab
I know I was not missed on this forum, so many people here think those of us symptomatic after tx are just nuts,,,,,,,I am not crazy, I am suffering

[Daisychain58]

A resounding YES.
SEE BELOW MY POST
Hi all
I had Hep 3 geno 3a for 40 years and am now 60. Kept pretty well, worked, liver enzymes fluctuated between a tad elevated and normal.  Fibroscan score was 1. Couple of liver cysts and fatty liver.  I felt not too bad just fatigue but could function normally.
Well I had the 3  month treatment, SOLVADI AND DAKLINZA, pretty unremarkable, bit of insomnia.virus cleared.  Had depression for a while, like suicidal thoughts, NEVER before have I felt this way.
I have never felt so unwell and unmotivated in my life.
List of symptoms that are new and are not going away.
Disturbed sleep
Constant fatigue
Overheating
Fatty liver and cysts
Enlarged liver.. new
Gallstones
Now fatty pancreas
Brain fog
Joint pains and aches
Arthritis in ankles can barely walk
Depression badly, never in my life have I suffered this
Dermatitis on hands and scalp, really bad like a psoriasis, had this for about 9 months
Weight gain 10 kg
High cholesterol... was always good with a high good count
High blood pressure .. was always on the low side
Don’t want to talk to anyone and just not happy, I was a happy bubbly full of life person before this.

I eat well, drink a little, drinks heaps of water.
Have had my thyroid checked, normal
All blood tests come back normal

Now I’m freaking out about this fatty pancreas, next step in type 2 diabetes.
I have modified my diet, and am taking high doses of milk thistle and liver herbs again. In two weeks the side pain has improved thank goodness, it was unbearable but doctor said gallstones not bad enough to remove gallbladder.
I am so depressed over this, I wish I had never had the treatment,  my liver was in good shape really prior to treatment.  I just don’t feel like the same person in the head and psychically I’m way worse.
I live in Australia and would be very interested if anyone else has or is experiencing similar.  So much for the virus being cleared and a cure, why do I feel like I’m dying.

[FutureThinker]

Kim's suggestion of researching the "cytokine storm" link was interesting, I have never heard of this; however, there has to be something going on where some people have all these bad responses post-treatment, and others don't, or much less in scope. I sincerely hope the researchers are digging into these post symptoms. Keep telling your doctors and Gilead, or whichever company, about this!  FT

[andrew j]

I agree.

It's appalling that you guys have been left with these sorts of debilitating side effects.
Surely the drug co.'s - or medical science - or somebody? - is working on - or has come up with, some answers - some insights for you guys, by now?!!

FWIW Morab,I  had a rash of skin cancers appear a few months after Tx.
I hadn't linked it to the meds before - but I have to say - it was odd how they all suddenly appeared like that.
... Maybe they were already there in latent form before?

My recovery has been otherwise normal (I think?), except for a deep [and constant] residual tiredness - and some jabbing pains in my liver area, that I'm just too freaked out to have checked out?!
I should do that, I think.

Hoping for some progress for you guys! - and lots of love,
A.

(P.S. My computer has died, so I'm only getting to check in here once a week).

[strangerbynight]

One month after eot i had develope shortness of breath, its getting worst now, and now i have extreme anxiety, start to have depression too, i was a perffect normal health before treatment, i woke up everyday and hoping to feel better but no i am not feeling better, i went for two x-ray two heart EKG and all normal, blood work normal, so what is wrong with me, i am loosing my motivation of life now, i am scare, am i one of the rare that have side from harvoni? god please help me, my liver was at F0-1 and my doctor told me i have no scar or damage, i know this because i had ultrasound, CT scan and fibroscan, does anyone have similar symtoms?

[andrew j]

Hi Stranger,

I have recently been diagnosed with high blood pressure.
Apparently it's common post-Tx (esp. in reln to. Harvoni) - and might explain some of what you're going through.
Certainly, I can relate to most of what you describe.

It might pay to have that checked out with your Dr.

Otherwise - it's about taking care of yourself, and finding whatever support you need.

Hoping that you're doing OK today.

A.

[strangerbynight]

Hi Stranger,

I have recently been diagnosed with high blood pressure.
Apparently it's common post-Tx (esp. in reln to. Harvoni) - and might explain some of what you're going through.
Certainly, I can relate to most of what you describe.

It might pay to have that checked out with your Dr.

Otherwise - it's about taking care of yourself, and finding whatever support you need.

Hoping that you're doing OK today.

A.

Thanks for sharing the info, i was recently at the doctor and he did check my blood pressure and he said its normal, i now have a digestive issues, bloated, foods want to go back up after eating, he thought i had a acids reflux and i have been taking strong acid reducer and doesnt seems to help at all, my breathing has been borthered me the most, its feels like my lung is irritated all the times but not too extreme to make me cough yet, imy doctor thinks i have anxiety and now he want me to see psychologist to evaluate me, i dont know anymore whats really wrong with me, can you share me other symtoms that you have? sorry i dont want to scare anyone whos about to getting treatment for the hep c, i think i am one of the very rare person with bad side effect.

[andrew j]

Um - For me it's mainly just the tiredness / energy issues (as above).
I figure it's mainly down to 1) aging; 2) 20 years of incessant stress with full-blown Hep C, and 3) another 20 years of 'asymptomatic' Hep C before that!
(... There was that strange flush of skin cancers that appeared soon after finishing Tx (again - as above) - and that slight edginess / breathlessness / high blood pressure stuff).
Basically, though - I just feel so much better than I did before, that I literally have to thank God every minute of every day.

These adverse reactions seem to mostly hit those that were largely asymptomatic before?
No doubt a dumb generalisation.

Maybe it's worth talking to a counsellor.

I don't think people generally imagine feeling unwell - or out of sorts.

Keep exploring - and ... sorry I can't be of more help.

A.

[Mugwump]

Um - For me it's mainly just the tiredness / energy issues (as above).
I figure it's mainly down to 1) aging; 2) 20 years of incessant stress with full-blown Hep C, and 3) another 20 years of 'asymptomatic' Hep C before that!
(... There was that strange flush of skin cancers that appeared soon after finishing Tx (again - as above) - and that slight edginess / breathlessness / high blood pressure stuff).
Basically, though - I just feel so much better than I did before, that I literally have to thank God every minute of every day.

These adverse reactions seem to mostly hit those that were largely asymptomatic before?
No doubt a dumb generalisation.

Maybe it's worth talking to a counsellor.

I don't think people generally imagine feeling unwell - or out of sorts.

Keep exploring - and ... sorry I can't be of more help.

A.

It is hard to walk in someone else shoes when it comes to HCV post treatment. But Andrew the statement you just made sums up my experience with HCV and the final resolution and cure in a nutshell. The ongoing hell it created in my life prior to being cured was much worse than what curing HCV is doing to me.

I too try to treasure every moment of life now that I am free from the physiologic and psychological stress hell that having early extra hepatic effects 40 years ago then going on to an active chronic HCV leading to cirrhosis did to me.

Perhaps those of us who did not experience the horrible side of HCV as dramatically as we did might find it difficult to believe or adapt to the physiological changes that HCV can create. And only realize how sick they really were after this devil of a disease is gone.

I know that I have had twinges of survivors remorse at times when I realize exactly how lucky I am to have gotten all the way to age 65 and cured, when others I have know have succumbed to the side effects of this disease at much earlier ages. Only one person I have know actually jaundiced and died from liver failure due to HCV but several others I have know have succumbed to either HCC or other diseases like premature kidney failure made worse by a failing liver.       

In some ways being an HCV survivor can become a lonely road to travel, but only if you allow it to become one.

[andrew j]

Thanks, Eric.

Yes ... You know - this last week I've been thinking: It's weird - I'm actually feeling - at least a little - like a normal human being [again]!
Until recently, it's felt like a time-warp - like 'What's happened to my life?!
Forty years have just disappeared!!'

I know you suffered big-time - esp. physically.
For me it was mainly psychological, I think.
On top of that endless, shitty, claggy, viral feeling - the constant desperation of being unable to think straight.
What's the term [for brain fog (and hepatic encephalopathy)]?  - 'impaired consciousness'.
= screwed relationships; lost money; blown opportunities; accidents etc etc.
You know?
I know you know.

Anyway - this thread is for people who are suffering adverse reactions post-Tx - so I'd better get back on topic!

Thanks for touching base.

A.

[Vasi]

Has been 2 weeks since my 12 weeks of Harvoni was completed.

Got results from bloodwork this morning. The HCA RNA
Hepatitis C Quantitation
<12                  HCV RNA detected
HCV log10
Unable to calculate result since non-numeric result obtained for  component test.
Test Information:
The quantifiable range of this assay is 12 to 100,000,000 IU/mL for genotypes 1-6 and the limit of detection of the assay is 12 IU/mL.

My question: Is this the same as "undetectable?"

Also, arthritis really came on strong during the 12 weeks. Right hip in awful pain. But is horrible one minutes and maybe the next, no pain whatsoever.....or might last all day. Right pointer finger joint swelled up on Monday...but has since returned to normal. Still have crying spells....not wanting to end my life, but still cry lots. Any reason will work. (Anyone else with emotional issues?)

My hepatic 7 function panel: All is normal. AST & ALT had been high 40s, low 50s before Harvoni...now 22 and 25 (mid normal) respectively.

Still don't know when or where my infection came from. All Hepatic functions were normal in 2009. Didn't have them tested again until 2016, and the AST, ALT were slightly high...in 40s.

[Lynn K]

Unfortunately you result indicates weakly detected withno viral load as the quantity of virus is below the LLOQ (Lower Limit of Quantification) of the test which is less than 12 IU/mL. The test should say “NOT DETECTED”

However, this has happened to a few people here most notably dragonslayer. He was detected at EOT, and at 4 weeks post treatment but he went on to achieve SVR12 and is now cured.

Don’t lose heart the only test that matters is the 12 week post treatment test. The important thing is you don’t have a viral load. When I did relapse on Solvadi and Olysio on the 12 week post test my viral load was back up to pretreatment levels of 2.4 million and my EOT test said not detected.

I had a liver enzyme test done when I left the military in 1988 and all my results were normal. I believe I contracted hep c 10 years earlier in 1978. I found out I had hep c in 1990 when I donated blood and learned I had a positive antibody test with elevated liver enzymes. Not everyone will have elevated liver enzymes with hep c infection. Unless you have something you suspect was a risk you will likely never know how you became infected.

Are you going to have a HCV RNA test done at 4 weeks post? If that test shows not detected your odds of having been cured are at 98.5% but the only test that matters is the 12 week post the test for SVR12.

Best of luck please let us know your 12 week post treatment test results.

[Vasi]

I return to my doc on June 13. On my March appointment, he had given me a script to have test done (may 17) following the completion of my meds on May 11, and also mentioned the 12 week post test that I will need to do, but did not mention a 4-week post test.

My husband just had his done same day at the same lab, same time...and his says "not detectable." His body cleared his and he has never had to take any meds for it, of which I am glad because he is a diabetic.

[Lynn K]

Yeah different labs use different phraseology. The lab my doctor uses results are reported as “DETECTED” or “NOT DETECTED”

The 4 week post test is not required. I was more often done in the clinical trials and when the meds were first approved some doctors were following that protocol. When I treated with Solvaldi and Olysio I did not have a 4 week post treatment test but on my next treatment we decided to do a 4 week post test because of my prior treatment results. You could ask your doctor about your detected result and if they would want to to a 4 week post treatment test. It could give you a better indication on what is going on or just wait until the 12 week point and then you will know for sure one way or the other.

There have been a few here who did relapse and later retreated with Epclusa. I think so far as I know everyone here who treated again was cured.

[andrew j]

Hi Vasi,

As Lynn says - you're still in with a really good chance.

12 weeks can be  long wait, eh?

As to feeling emotional - it's perfectly normal.
We've been through a profound transformation during Tx - our whole beings.

I know I felt emotional for months following treatment, and still often do.
For me it's a good thing - a healing thing - but then having Hep C was some kind of nightmare for me (as above).

Good luck with the results - and with the wait - if that's what you're in for!

A.

[Vasi]

Thanks. I appreciate all your experiences and encouragement.

[Vasi]

Had appointment with gastro doc this morning. He wanted to start up new meds immediately, Vosevi. The side effects of Harvoni are still hitting me hard so we finally agreed on waiting another 6 weeks, being retested, and then if HC is still detected, will start the new drug.

[Lynn K]

That is a good choice to wait until you are 12 weeks post treatment to retest before further treatment. It is still entirely possible you are cured but won’t know until 12 weeks post treatment.

When I relapsed after treating with Sovaldi and Olysio my viral load at 12 weeks post had returned to pre treatment levels at 2.4 million in just those 12 short weeks. If you relapse Hepatitis c comes roaring back. I received my liver enzyme test results back a couple of days before my viral load. My liver enzymes has gone back to slightly above normal which was my first clue I might have relapsed.

Will you be having a liver enzyme test also?

[Vasi]

Am not sure if he ordered another liver enzyme count or not as I haven’t looked at the blood work form. My last ALT/AST (May 17) were low 20s.

[Lynn K]

Yeah I had a viral load test and liver enzyme panel done at the 12 week post test. I got the liver enzyme test back a couple of days before the viral load as pretty much always will happen because the viral load takes longer.

If you have a liver enzyme test done weeks after you finished treatment and even one has returned to above normal that could be a sign of relapse.

On treatment and immediately after treatment has ended, your liver enzymes will be normal because you don’t have hep c around to be injuring your liver.

[Diane12345]

I took Mavyret, I am experiencing debilitating pain in my back, hip and wrist. While the Hep C is gone, I am worse off now than before. I had no symptoms. I had the disease for 40 years
I wish I did not take this. I can't find any information. anywhere about it. But I know my body I was an Active healthy person, 60 years old. I really don't know what to do. now.

[Lynn K]

Hi Diane
So sorry to hear you are having a hard time.

What has your doctor recommended?

[Vasi]

I found a great website www.hepctrust.org.uk

Only website I have found that addresses most of the issues we have discussed on this forum, like side effects that none of the official Harvoni or other drug websites address. Issues that even my doctor, who has the best bedside manner, very positive and all, seems to know nothing about and thinks I am the exception rather than the rule.

Reading this, making note of the Mental and Emotional section as well as Good Herbs and Toxic Herbs really had a profound positive impact on me late Saturday night.

Hoping that some of you will be encouraged in some way from this information, even if it is just the fact that what we are feeling, experiencing doesn't mean we are ready to be committed or odd man out in any way.

[Mugwump]

I took Mavyret, I am experiencing debilitating pain in my back, hip and wrist. While the Hep C is gone, I am worse off now than before. I had no symptoms. I had the disease for 40 years
I wish I did not take this. I can't find any information. anywhere about it. But I know my body I was an Active healthy person, 60 years old. I really don't know what to do. now.

Yes there is mounting evidence that some of us develop debilitating myalgia to a much greater extent after undergoing DAA treatment. It very well could be that a rapid rebuilding of the liver creates metabolic changes that effect connective tissue adversely.

I know it was a long time ago but when I was in my early teens and even pre pubescent (10-13) I remember having more growing pains than other children my age. This was before I was infected with HCV.

There have been studies done that indicate immune changes can create so called "growing pains" in young adults.

So to speculate here:
My immune system somehow remapped itself, this metabolic process change in the liver created proto proteins and other substances that attack connective tissues. And this is the reason why I too experienced more arthritic like pains post treatment.
This possibility needs research all by itself and could glean a great deal about the human metabolism that is not completely understood. I have been saying this for a very long time and unfortunately there seems to be very little study being undertaking on this subject, at least in North America. We seem to be falling behind in medical science in some ways, however the Japanese medical community is active on this subject so is the Northern European groups that are less connected with the US and Canada.
As far as herbal remedies go, unless you know exactly what they do and what quantities to take they are little more than snake oil and a fools gambit. That being said tiger balm does do strange things to certain parts of my body. Careful how and where you use it! But does seem to relieve joint pain in my hands and does help me study classical guitar more effectively. My wife makes me wash it off before I come to bed thought

[Diane12345]

Thank you Lynn K and Mugwump,

I went to HSS, x-ray shows loss of cartilage. They gave me a cane and said use it. I do, even though it doesn't match any of my outfits. LOL. 

She recommended acupuncture for pain management and PT, and weight loss, I put on 20 lbs during the treatment, I am by no means overweight, Just over my normal weight.   

There is a Site FDA  where you can report adverse symptoms or complaint.  here is a link
https://www.fda.gov/Safety/ReportaProblem/ConsumerComplaintCoordinators/default.htm

Mugwump, I completely agree with your analogy, it makes so much sense to me.
I use the tiger balm. I am now and always have been aware of changes in my body. cause and effect, eating something, drinking something and recognizing the change. It would be nice if a doctor would validate, but I know, that something changed immediately after stopping the drug. It is directly associated.     

On one hand, I hate to say anything negative because it did do its job. I am "Not Detected" after three months, but maybe they can improve the medication if people would speak up and don't suffer in silence.

[BattleTheBeast]

Hi Diane, I am going through this myself. I can tell you for me the specialists just said it was Fibromyalgia however my cholesterol went through the roof while on treatment and even worse post treatment. I ended up having a heart attack almost 2 years post treatment exactly and had to have a couple stents put in. It's a huge battle for me to get my cholesterol down and I am now completely anti any prescription medications so working with natural solutions and a clean diet. Please get yours checked and make sure this isn't happening to you. The minute my arteries were unclogged my entire body felt relief. I still have some pain but it's livable compared to what it was. Good Luck with your journey and feel free to message me.

[Jenniferd619]

I completed treatment and was cleared of Hep C 4 years ago. Im not sure if the joint pain worsened right after but 1 1/2 years ago it became debilitating. I had no idea that it could be linked to the treatment. Ive been reading its a possibility. I am wondering if anyone else has the same symptoms. I have been tested for everything under the sun. I tested positive for lupus and then further tests said I did not have it. No RA either...It makes no sense. My joints swell up and it moves around all the time. From my wrists to me knees to me elbows etc etc. Its driving me crazy. At the moment my right knuckles are so swollen that I cant see them. The doctor said maybe Im just old??? Im 50, I have hep C for 20 years. Never had any symptoms really except liver pain at times. If its the treatment im very concerned about what else could go wrong...it seems the drug companies would say something!!

[Mugwump]

Jenniferd619
I am going for an xray tomorrow and am 3 plus years post cure with Harvoni. I have had slow but progressive hip pain in the past 2 years which is most likely caused by hip joint deterioration.  I also have swelling in my knuckles, but if anything since treatment with Harvoni my hand pains have eased somewhat. The difference with me is that I do practice classical guitar and play almost daily and am keenly aware of changes to the flexibility of my hands. Before treatment I had all but given up playing the instrument my flexibility was that compromised.

I know that I am harping on this topic. BUT it seems that some of us do have extra hepatic reactions post treatment with Harvoni, until the cause(s) of this are properly investigated it is silly to blame the problem solely on Harvoni. HOWEVER if any of the components in Harvoni are found to not be excreted during treated and linger for long periods of time my opinion on this issue will change.
Still my best guess is that some of us have unknown immune reactions to being suddenly freed from HCV and become symptomatic of extra hepatic immune troubles from having had HCV in the first place. This theory would in part explain why HCV antibody production slows faster in some who clear the disease or are cured with treatment but others still have high levels of antibodies to HCV years after being cured of the disease.
The numbers of those who treated with Harvoni later going on to develop joint issues is concerning and needs investigation IMO. Finding out how HCV manages to screw around with the human immune system is even more important for the future of HCV treatment.

I am sure the American legal eagle/vulture ambulance chasers are already on the case looking to scare the crap out of the victims of HCV even more than we do all by ourselves! 
Cheers Eric

[Jenniferd619]

Hi Mugwump,

Thank you for your response . I am just trying desperately to understand where all this pain is coming from. It could possibly be that the Hep C already damaged the joints but I just dont know.

[Mugwump]

I just got some blood test results back today. It seems my immune system might indeed be attacking me again because I have low levels of Immunoglobulin A. Normal levels are 0.70-4.00 g/L my level is currently slightly below minimum average at 0.67.

Although this reading means little unless repeat tests indicate continued low levels of IgA protein. When I was misdiagnosed with Graves disease in 1988 my IgA levels were also down. (Graves disease) is a very serious autoimmune disorder that causes the human immune system to attack the thyroid gland. This disorder, in mild manifestations is sometimes referred to by endocrinologists as non-clinical Graves disease. It is quite common amongst those who either have HCV or have it in the past.
Therefore perhaps tests for reduced levels of IgA might be in order for those who seem to suffer more from any of the extra hepatic manifestations of HCV.
If indeed it is your immune system attacking your joints then perhaps the common Serum Protein test(s) might help in determining if a non clinical autoimmune reaction are at least partly causing issues post treatment.
I know that I might be grasping at straws here, but sometimes that is the way to bale the most hay. Especially when it comes to understanding the extra hepatic manifestations of HCV and the strange reactions it seems to be leaving in its wake seemingly more so with new DAA treatments.
However if HARVONI or any DAA has left any components that interfere with the production of essential human proteins long term then my story might change.

All my best
Eric

[Angelica]

I found a great website www.hepctrust.org.uk

Only website I have found that addresses most of the issues we have discussed on this forum, like side effects that none of the official Harvoni or other drug websites address. Issues that even my doctor, who has the best bedside manner, very positive and all, seems to know nothing about and thinks I am the exception rather than the rule.

Reading this, making note of the Mental and Emotional section as well as Good Herbs and Toxic Herbs really had a profound positive impact on me late Saturday night.

Hoping that some of you will be encouraged in some way from this information, even if it is just the fact that what we are feeling, experiencing doesn't mean we are ready to be committed or odd man out in any way.

Hi Vasi, I am familiar with the hepCtrust but I cannot find anything about treatment unofficial side effects. Could you put a link to the page you found? thanks