Hepatitis C: Post Treatment Issues Community
Hepatitis C Triggered Sjogren's Disease
About This Community:

This forum is for those who have taken HCV treatment, and have been off treatment for at least 6 months, to discuss any lingering or new health issues that may have been caused by the Hepatitis C virus itself or may be related to treatment for Hepatitis C. Some examples are autoimmune conditions, previous medical conditions exacerbated by the virus or the treatment, liver damage, and inflammation of the joints.

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Hepatitis C Triggered Sjogren's Disease

I was probably infected in 1974-75 from a Gamma Globulin Injection. I was not diagnosed until July 2011. So I had Hep C for about 37 years.

I had multiple extrahepatic manifestations prior to diagnosis. These are the symptoms I attribute to being triggered by or caused by Hepatitis C: Systemic Vasculitis with Pericarditis, Pleuritis, & Hemolytic Anemia (1993-94); Severe Fatigue; Unexplained and Gradually Increasing Blood Glucose; Unexplained Weight Gain; Sudden Onset Unexplained Allergies and Asthma; Dry Eyes; Dry Skin; Peripheral Neuropathy; Joint and Muscle Aches and Pain; Sjogren's Disease.

Starting in Sept. 2011, I treated for 48 weeks with Interferon, Ribavirin, and Incivek (Incivek for 12 weeks). I attained SVR. The fatigue is completely gone. I have tons of energy. My Blood Glucose is trending down. My Asthma is greatly improved. My Allergies seem improved.

My joints and muscles seemed considerably improved following treatment but then gradually started to ache again. My skin remained dry and I had lingering rash issues, especially psoriasis type rashes. (I did not have rashes prior to treatment, but I had major problems with all sorts of rashes during treatment.) The peripheral Neuropathy seemed improved after treatment but then gradually worsened again.

Since I know that Hepatitis C can cause autoimmune disorders, I was very concerned that Hepatitis C had left me with an autoimmune disorder. So, I consulted a Rheumatologist at the University. She tested me for everything in the book. They drew almost a unit of blood, LOL.

During Hep C treatment, my ANA was elevated (January 2012). It was still elevated in April of 2013. In July 2013 when I had all of the tests the Rheumatologist ordered, the Sjogren's antibody (SS-A) came back positive. That, and my plethora of Sjogren's Disease symptoms, clinched the diagnosis. In addition, I had a low Vit D level (something that is frequently seen in people with Sjogrens).

Sjogren's is most likely triggered by an infection of some sort. For me, it was Hepatitis C. I had no other infections of any sort. So Sjogrens, for me, was another extrahepatic manifestation.

Gauging from the duration of the Sjogren's symptoms that I have, I have had Sjogrens for years and years, decades. So there is no doubt that it was triggered by the Hep C virus and NOT the Hep C treatment.

Below are the symptoms of Sjogren's that I had/have:

Dry Eyes  (since 2009 - 2010)
Eyelid Inflammations  (since July 2012)
Dry Mouth   (years)
Dry Throat   (years)
Difficulty Swallowing  (difficulty swallowing dry food without liquids) (years)
Dry Lips  (chapped)  (6-7 years)
Sinus Congestion  (since 1979)
Dry Nose  (thick mucous)  (years)
Dry Cough  (x years)
Shortness of Breath on Exertion  (years)
Dry Skin  (years but much worse for past 7 years)
Erythema of Nose and Cheeks  (few years)
Annular Erythema with scales   (since July 2013)
Rash (various types) (since Dec. 2011)
Psoriais (since July 2012)
Joint Pain, Aches, and Stiffness (several years) (gradually getting worse and more widespread) (Bilateral Hips, Knees, Wrists, Hands, Fingers … Left Shoulder…coccyx)
Muscle aching in thighs (2 years)
Peripheral Neuropathy  (Bilateral  feet and toes burning and tingling for several years; Bilateral toe numbness since about April 2013)
Interstitial Cystitis, with symptoms of frequency, urgency, and nocturia, (since 1990s but gradually worsening every year)  (no dysuria)
Suprapubic Pain; Irritated Bladder

In early August I started on Vit D 50,000 IU weekly. (Plus, I was already taking 1250 IU daily and continue to do that too.)
In August I also started taking Turmeric (Super Bio-Curcumin 400 mg) every day.
In Sept., after returning from my trip, I started taking Plaquenil (treatment for the Sjogren's).

Well, after 2 weeks of Plaquenil, the urinary symptoms are almost completely gone (frequency, urgency, and nocturia, suprapubic pain, irritated bladder). Considering that I have had these urinary problems since the early to mid 1990s, that is indeed incredulous. And a welcome relief. I feel like a new woman. I know it is not a coincidence or a fluke. They have been present since they started during the 1990s. Never once let up. And now, they are almost completely gone.

I also believe the Super Bio-Curcumin 400 mg daily as well as the Plaquenil is helping with the muscle and joint problems. The Peripheral Neuropathy has improved some.

The dry eyes are treated with Restasis (since July 2011) and the rash is treated with good skin creams and lotions, such as Eucerin (and hydrocortisone cream if needed).

I reiterate my post treatment health issues anecdote because, for me, the problems were triggered by Hepatitis C and NOT by treatment. I know this because I had the symptoms and the problems long before I even knew I had Hep C and long before I treated the Hep C.

In addition, for several years, I told all of my doctors about these problems every year at my annual exam and every time I saw them. None of them took me seriously or thought my symptoms were anything important. My eye doctor is the one who checked my eyes and ordered the Restasis. After I moved from SF in 2000, none of my new regular doctors would even check my liver enzymes, even though they had been elevated in the 1990s. I had to insist. Then, after treatment, when I wanted to be tested for autoimmune disorders, none of my regular doctors thought I needed to be tested. So I referred myself to a Rheumatologist at the University. Bingo!

I mention this because sometimes/often, as we know, the doctors don't really know what is going on with us and so they ignore out symptoms or downplay them. We need to be our own strong advocates, if necessary, and see specialists who can and will test us, diagnose us, and treat us appropriately. If we are correctly diagnosed, we can be treated for our health issues. Appropriate treatment can improve our quality of life, avert complications,  and improve our prognosis.
3 Comments Post a Comment
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317787_tn?1373214989
Your story is amazing!  I also know that I had things wrong before treating.  Like the globulins that seem to have gone away but I see now that I need to get retested to make sure.
It could still be there even if I do not see evidence of it on my legs.
I also think I got the HCV from the gama shot in 77. I can't be sure I was tested for HCV in the 90's 3 different times it came back negative.  In 2003 I tested positive before an operation but no one bothered to look at my blood work so it was almost 2008 before I was diagnosed.  I felt better than I had in years, I had been diagnosed with diabetes right before, had lost 30 lbs, had so much energy, then 4 months I found out about the HCV at 5 months the dx of cirrhosis, the 6th month I was treating.  It took me a very long time to recover from the operation, years, I lost a lot of hair, had no energy etc.
The cyro showed up in 2005-6
I appreciate you sharing, I also still have dry eyes mouth, I am planning on finding a rheumatologist, so happy you are finding relief, going to get the turmeric.  I remember HR used to recommend this.
My best to you
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789911_tn?1368640383
sounds like a rheumatologist might be a place for me to start...  thanks for posting
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1815939_tn?1377995399
Update:

I have been taking Super Bio Curcumin 400 mg since August 1 and Plaquenil 200 mg twice a day since Sept. 22. I continue to improve in terms of symptoms. My bilateral knee and hip pain is now minimal. My right shoulder pain is gone. My other joints have minimal pain. The bilateral lower leg, ankle, and feet edema and erythema is gone.  My mouth is less dry. My bladder symptoms very remain minimal. The thigh muscle fatigue is gone. So treatment is working. Overall I feel very good. I have my life back and I am elated.

I am thankful that I found such a good Rheumatologist and I hope everyone is as fortunate as I was in finding a good doctor and obtaining appropriate diagnosis and treatment.
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