POST HARVONI ARTHRITIS - HOW LONG WILL THIS LAST ?

[lavilla1970]

Hey folks - I have recently completed successful Harvoni treatment for HCV . I started on July 27 and did 12 weeks of Harvoni finishing on October 20th.  The blood panels so far shwo that I have cleared the HEP C virus. That is the good news. However, I have been having very bad problems in my joints , starting approximately 7 weeks into the 12 week treatment.  I believe after Harvoni killed the HCV that my immune system went haywire and is now in autoimmune response causing a form of rheumatism. I had the HCV in my system for at least 20 years before treatment , and  while I had absolutely no symptoms and very mild liver inflammation , I do recall having a very painful episode similar to what I am experiencing now - very bad rheumatism , around 17 years ago , which was misdiagnosed as  fibromyalgian (I did not know I had HCV back then) . Now I know that HCV does cause Rheumatoid Arthritis and or ARTHRALGIA . I suspect that these arthritis pains are directly connected to the Harvoni treatment . Harvoni did what it was supposed to do by killing the virus, but what the doctors did not tell me was that now my immune system will give me Rheumataiod Arthritis or Arthralgia . I must determine which it is because the RA treatment is especially toxic to my liver.

The pain started between the L4 L5 joint in my cervical spine. which at first I thought was slipped dic, until I realized the lumpy nodule that was painful to the touch.  Within 4 weeks the pain has now migrated to my index toe in one foot causing capsulitis , and joint pain in my my big toe of the opposite foot . So now both feet are very painful to walk on, so I am becoming disabled.  I am also having pain in both ankles, and one knee.

As grateful as I am for the Harvoni treatment and clearing the HCV virus, I am not sure yet if the cure is worse than the sickness . Before Harvoni I felt fine and had no symptoms. I am a very healthy , very fit 47 year old male. But for the past 9 weeks I have been in constant discomfort and pain as a result of what appears to be arthritis .

My question to this community is - How long can I expect these symptoms to last ?  Has  anyone else out there had any similar problems of post Harvoni arthritis, and does it go away eventually ?  I realize that ever person is different , but there must be some similar situation out there .

What I don't understand is how is it that I had no arthritis during the HCV infection, but the moment it is cleared is when I get the worst symptoms of having HVC ?  I would think that now that the virus is killed I would feel better, not worse .

Please help

[Lynn K]

Most feel more or less fine while infected with hep c. I developed liver cirrhosis after 30 years of infection but never really would have known except I was being closely monitored since I was diagnosed with hep c in 1990. That is the insidious nature of hep c infection and why it is called a silent illness.

For me I still feel fine maybe had a few extra aches on treatment. Hopefully others will have more insight for you. Wishing you a speedy recovery from your symptoms.

As for the arthritis hard to say about that and islikely a questions best answered by your doctor or rheumatologist as to your diagnosis and prognosis.   

[gnatcatcher]

lavilla1970, there is a lot of similarity in our medical histories and what we are experiencing, right down to the L4 L5. (In my case, that is supposedly "anterolisthesis . . . likely degenerative in nature", a problem first noted in 2004). My earlier joint pains were thought (in the 1990's before anyone knew I had HCV) to be lupus or mixed connective tissue disease. I started having the foot and toe pains, as well as my calves periodically seizing up, during the year before I took Harvoni, but they were more frequent afterwards.

You already know HCV itself can cause a whole bunch of other things: the technical term is Extrahepatic Manifestations (EHMs) of HCV. You, and many of us on these forums, suspect that being treated with something as strong as Harvoni confuses the immune system big time. Add to those two factors a third: getting older. And then there's the spinal problem which can cause nerve-related pain in legs, feet, and toes.

I trust your doctor or a rheumatologist is ordering the blood test to find out whether you do or don't have RA. Every time I was tested for RA, I was found NOT to have it. Plaquenil (generic=hydroxychloroquine) enabled me to have much milder and less frequent pain, although I went off it (with my doctor's okay) after being on it for many years because my eye doctor said it can affect eyesight if taken for a very long time. Because I went off it soon after I finished the Harvoni treatment, it makes it harder for me to tell how much the Harvoni (or, perhaps, the way Harvoni's effectiveness confused my immune system) contributes to the pain.

Now I change shoes frequently because no pair is pain-free (clogs come closest, maybe because it is so easy to slip them on and off when I'm at my desk), and I have learned how to use either distraction (taking my mind off the pain by getting engrossed in something else) or mindfulness (working with the pain to help the episode pass more quickly). Unless the pain is so bad that exercise would exacerbate it, I find that exercise is beneficial, so most days I do my entire exercise routine. I'm now more than 2 years past the end of treatment and believe the episodes are less frequent. They are also briefer, whether because I've learned how to relieve the seizures more quickly or because things are actually improving I cannot tell.

Sorry that the Harvoni isn't a cure-ALL but glad you are rid of the HCV.

Best wishes,

Gnatty

[lavilla1970]

Thank You so much for your reply . I received Harvoni treatment through the VA , and I now live in Europe (Poland) where I teach English to kids and have lived a very active lifestyle . I do not drive a car and do a lot of walking and spend most time on my feet . I have not seen any specialist and I don't even have a primary care doctor, as I only came back to the US for six months to do the Harvoni treatment . 

I must stress that up until treatment I really had no serious problems with my liver - my elastogram showed only moderate inflammation of the liver , and my enzymes would fluctuate - but apart from an abrupt flare up of what was apparent arthritis almost 20 years ago, I have not showed a sign of any problems what so ever. 

It has only been during this treatment that I am experiencing crippling pain of what I am assuming is arthritis in my joints. I will absolutely get a blood test to determine if I indeed have RA, but I still don't understand how it was possible to have RA for 20 years with no outbreak, and as soon as the virus wis killed off the RA comes back with a vengeance .

It has only been 9 weeks of this , just over two months. The spot between my L4L5 seems to have gotten better although it feels tight like there is scar tissue from the ligaments . But the feet are a serious menace - so far I am taking over the counter ibuprofen for the pain and it seems to make a notable difference . But I don't want to take more than 800 mg a day of the stuff, and no longer than maybe a month because I don't want to develop ulcers.

I am aware of immunosuppressive drugs on the market , but I am very wary of compromising my immune system this way even if they are effective. I am actually wary of all pharmaceuticals at this phase because it seems that you start taking some pill for a cure and then need to take 5 other pills fro other problems.

I realize how grateful everyone is to Harvoni and ridding HVC - but I can't help but wonder what I just did by taking it- if I bought another 5 or ten years of life at the expense of living those years in a lot of pain and not being able to walk , I am not sure I would have done it.

All I know is that I was fine before , and now I am definitely  not  - so I really hope this is a temporary thing (6 months or one year tops) . Otherwise I will have to become reliant on pain drugs and not being mobile for the rest of my life (I'm a very young 47) which is a terrifying notion - frankly a lot scarier than dying in my mid late 60s of hep c /liver cancer.

But thanks for the hopeful message , I greatly appreciate it .

[gnatcatcher]

One thing to keep in mind: HCV tends to get much more aggressive as you get older. My liver enzymes were normal for the first few decades of having HCV, but by my mid-50's, they were noticeably above the top of the normal range and climbing rapidly; the FibroScan I had before starting treatment came back F4 (cirrhosis even though I don't drink alcohol). So, you really don't know what life would have been like in a few years if you hadn't cured the HCV. But I can understand your regret and frustration.

It sure would be helpful if you can see a doctor who can reach a diagnosis, so you know exactly what you're dealing with. The fact that you had an episode around 17 years ago could be significant.

Question: Are the inflamed areas red and swollen? If that's always the case, gout is another possibility. It's not well known that gout can affect feet, ankles, and other joints (not just the big toe). While there can sometimes be redness and swelling with arthritis, there always is with gout. The pain from RA can vary from mild to severe, but gout is always accompanied by intense pain. Another confusion about gout has to do with what foods cause it: the actual culprits are purines, which are found in most meats (especially organ meats and turkey), most fish and shellfish, some vegetables, and even wholegrain breads and cereals. There are probably yet other potential causes of your pain that a doctor would consider.

I can see where living in another country and not having a doctor can add to the stress of dealing with this unexpected development. Unfortunately, stress intensifies pain, so I hope you can find a good professional and get a diagnosis soon.

[lavilla1970]

Once again I am grateful for your thoughtful response.  I doubt it is gout ( never thought I would make this rhyme) . There is no redness around or heat around the joints or throbbing pain, and the pain in the feet started as soon as he pain in the back subsided . My right index tow join has is swollen , like capsulitis . And I have sore ankles but no swelling. And I have a specific spot on my knee that is quite sore as if injured like pulled connective tissue. You are absolutely right that I will go directly into the Veterans Administration Hospital as soon as I  arrive back in the state where I am registered. Unfortunately I must wait until January 1 to do this because I have no other means of seeing a doctor , and I am traveling for work until then . But as soon as arrive I will ask for the test for RA to try to at least eliminate that possibility .

AS for you , you have said that your test for RA showed you do not have it, yet you still have symptoms of arthritis and joint pain - could it be arthralgia and not RA ?

[gnatcatcher]

RA is only one of over 100 types of arthritis. Osteoarthritis is more common than RA. Lyme disease is a type of arthritis.

Arthritis means painful inflammation of one or more joints.
Arthralgia means pain in one or more joints.
Arthropathy means any disease or abnormal condition affecting a joint.
Myositis means painful inflammation of muscle tissue.
Myalgia means pain in a muscle or group of muscles.
Myopathy means disease of muscle tissue.
Neurositis means inflammation of a peripheral nerve or nerves.
Neuralgia means intense, typically intermittent pain along the course of a nerve.
Neuropathy means disease or dysfunction of one or more nerves.

I mention all nine terms because while you wait for January, you could be logging the characteristics of each day's pains, so that you can help the doctor know what tests to run and what diseases to consider en route to a diagnosis. In my case, some of my pain involves muscles and nerves, which may not be your case.

Specific things to notice:
Exactly where and how severe each day's pains are;
Whether the problems are most severe in the morning or worsen as the day goes on;
On especially bad days, what you ate during the previous 24-36 hours;
Whether cold or warmth hurts or helps;
Whether changes in gait or posture (or any other techniques) lessen the pain.
This kind of mindfulness can lessen the pain if done in a spirit of curiosity.

Hope this helps. Thanks for the rhyme

Gnatty

[lavilla1970]

This is absolutely a great help. Thank you for taking the time to respond with this information .

[lavilla1970]

I have been reading the comments from this link about legal problems associated with Harvoni - it's terrifying .  A long long list of comments from people who say Harvoni has ruined their life and is killing them with cancer .  Please someone tell me this is false - I just finished 12 weeks of this stuff and I am experiencing pain I did not have before .

 https://www.lawyersandsettlements.com/articles/harvoni-denied-insurance-claim/harvoni-lawsuits-denied-insurance-claim-3-20791.html

[gnatcatcher]

There is a forum here called "Hepatitis C Research News and Studies" that includes threads about the latest research on long-term effects of Harvoni and the other DAAs (direct acting antivirals). Here are some recent threads relevant to your concern:
https://forums.hepmag.com/index.php?topic=5140.0
https://forums.hepmag.com/index.php?topic=5079.0

It is now less than four years since the FDA approved Harvoni (after completing all phases of the clinical trials), so the research into long-term effects is continuing. Overall, results are favorable (cancer seems to be tied to cirrhosis/advanced fibrosis rather than to the medicine). The FDA subsequently approved Harvoni for three additional populations including an April 2017 approval for children age 12 and up:
https://www.drugs.com/history/harvoni.html

As with any medicine, unfortunately some people experience strong side effects. Zantac (ranitidine) is well tolerated by probably millions of people, but when I took it, it caused my brain to press against my skull, something so excruciating, I couldn't lie down to sleep. As for Harvoni, iIf I hadn't begun experiencing the calf and toe spasms a year or so before I took Harvoni, I would be suspecting the Harvoni -- it's human nature, even though scientists remind us over and over that correlation isn't causation.

Hope this helps.

Gnatty

[Lynn K]

At least in my case all I can say is Harvoni literally has saved my life and that I had no side effects since treatment and only a few mild headache on treatment.

My likelihood of progression of my cirrhosis has diminished as has the odds of developing HCC. All my liver enzymes are normal my AFP test is almost normal and less than half of what it was before I treated. My platelet count has risen to over 100.

Three years since I started my 24 weeks of treatment with Harvoni

[alenw803]

I have been on Harvoni for six weeks.   I began to develop sharp arthritic pain in my right knee.  It’s so painful that at times I can hardly walk.    I called in and asked my nurse about it and she told me she had not heard about this issue.     I know that it’s a side effect of the medication, but I am hoping it will clear up after I stop taking the medicine.  Not everyone experience the same side effects, but for some severe joint pain is a reality

[colaa4]

some people have reported actual nerve damage. I'm afraid I may have nerve damage. its mostly leg pain. omega 3's are said to possibly prevent or even reverse nerve damage! (?)

[colaa4]

also want to add that I had very mild muscle spasms/twitching in upper leg first week or so on harvoni. maybe only one-two days. that may have been a precursor/warning sign of the pain and possible nerve damage(?) my viral load was not very high--in case there's any correlation with these numbers and susceptibility to various side effects(?)

[colaa4]

people have said leg pain got worse after treatment ended; and did nOt go away

[elizabethfaraone]

I contracted the hepatitis C virus in 1987 and was cured in 2015.  I am 57 years old.  I experience post exertional pain and fatigue, burning sensation in the muscles, arthritis, momentary pain causes a flare of pain that lasts for days, hamstrings are very tight and can’t be significantly loosened no matter how often I stretch, low back pain, bone loss.  I need to use memory foam because harder surfaces have become painful (bed, props, seat, shoes).  I had my first migraine a month ago and it was disorienting.  All of my blood tests indicate I don’t have identifiable health problems.  You would never know from my bloodwork that I had hepatitis C for so long.

The beach always makes me feel better.  Gentle exercises in a therapeutic pool keeps me from getting too weak.  Self-massage with a theracane and with a buffer is helpful.

Tell me how you are doing.

[andrew j]

Hi Elizabeth,

Everything you describe points to stress - and yet you seem able to treat yourself gently (e.g. in the pool etc.).
Is that right?

Conscious breathing.
That can help in slowing down and centering (if necessary).

Arthritis: It's often hereditary - and often comes on at about our age (around 60).

Those are my immediate impressions from your post, anyway.

I would explore further.

Hopefully you don't get any more migraines?

There are lots of people here, with all sorts of experience, and wisdom.
Have a look around!

Hoping that you are doing OK today.

A.

[elizabethfaraone]

The arthritis and lack of flexibility started after taking Harvoni and, although two things can occur at the same time and be unrelated, I believe there is a relation here. It was a sudden onset, not gradual.

I’ve always been a calm person.  Stress certainly increases the symptoms and so over the past 26 years, I’ve learned to be very detached.

I suspect, based on my many and varied symptoms, that, in some people, Harvoni causes bone loss, osteoarthritis, rheumatoid arthritis and nervous system damage resulting in fibromyalgia.  Once we reach a certain age, it is hard to recover from the damage caused by both the virus and the treatment.

Floating in water takes the gravitational pull off the body, decreasing the pain. It also is easier and less painful to exercise in water.

I think there is a need for the medical establishment to deny the long term side effects motivated by the need to eradicate the virus by any means necessary and the need for the doctor to feel he/she has done no harm.  If there was a real interest in identifying side effects, bone density scans would be done before and after the patient undergoes treatment.  Arthritis evaluation before and after.  Eye examinations before and after.  It is the simple scientific method.

[andrew j]

Elizabeth,

I always try the hopeful option first?!

I think you're right ... about just about everything.

A lot of people are reporting the sorts of things you are.