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Hepatitis C: Post Treatment Issues Community
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789911 tn?1368640383

So glad to have this new forum! I am having "issues"

Thanks for this new place for people with Post Treatment problems and hopefully for some good news of things resolved! I for one, post treatment for 18 months, have great days and some really crappy strange days as far as my health is concerned.  Before I treated with incivek I was pretty healthy with the ocasional sore muscle or cold. I was very active, worked in the yard, hiked, always on the go.  Since I stopped treatment after 48 weeks for the first year I was just so glad to be off the meds.  I figured that anything strange I felt physically was just the meds getting out of my system.  My issues seem to flare.  I have a lot of joint pain,  Never ever had anything like joint pain.  When I sleep I have to change positions. 5 or 6 times a night.  Too painful to stay in one position.  The pain just grows.  I dont know how else to explain it.  
When I was on treatment I had a lot of bone pain.  Never had that before.  Now, Some days I can barely open a jar of mayonnaise or jug of oj for example My wrists and hands hurt so much.  When I stand up I feel like my hip joints catch.  When Iam walking and turn direction, my knees feel like they could pop out of joint.  feels like all my joints crack.  Very stiff.  But then I will have the days when everything feels fine for several hours or a couple of days.  Very strange .  Ive gotten to the point where i dont go far without a tylenol or some other kind of pain reliever.  I dont do that.  I have probably taken 1 whole bottle of over the counter pain meds in my life.  Ususally because i had a fever or somthing. maybe the Ocassional headach.  Im going in for a bone density test this week, possibly an RA factor test, I want to look into other things, fibromyalgia or ????  I dont know what to ask about.   I called the hepatologist that was the head of the North Texas Research Center in Arlington Texas to discuss some of the things I might have looked into.  They kept steering me to my family doctor who knows nothing about the effect of what I have been though.  I am getting No post treatment support from the research center or the hepatologist whatsoever!  Heck Im only 54. Up until now I have been blowing it off as old age.  But 54 aint old.  Not for me!
18 Responses
1815939 tn?1377995399
I am sorry that you are having these health problems.

I agree with you that the family doctor is probably not going to know anything about Hep C extrahepatic manifestations, Hep C treatment, or Hep C post treatment issues. I would not even bother going to one about it as it will probably just waste time and money.  

We know that both Hep C and Her C treatment can cause autoimmune disorders as well as other disorders. Personally, I think a Rheumatologsit at a large medical center, preferably a university affiliate medical center, would be a good place to start. If you can self refer, that would be great. If you need a referral, maybe you can get your Hep C doctors to at least do the referral to the Rheumatologist.

When I went to see my new Rheumatologist at the university medical center, I had a list of my symptoms which I brought with me. Plus I had made out a list of everything else that was going on with me, including my entire health history and the health history of my family.  

When asked what was my reason for the appointment that day, I specifically stated that I wanted to know if Hep C had left me with any lingering autoimmune disorders or any other disorders. That was my reason for the visit. My secondary reason was all of the symptoms I was having.

You said that you did not know what to ask about. Well, you could ask the Rheumatologist the same thing I asked mine. "Do I have any autoimmune disorders?"

I don't know if you have any autoimmune disorders or not, but since we know both Hep C and Hep C treatment can trigger them, it is certainly a good place to start looking for the causes of our symptoms. Many of the autoimmune disorders can cause joint and muscle problems, so one needs to get tested for all of the disorders, not just one. Plus, you may have symptoms that you do not realize are symptoms of some disorder. Sometimes we get used to things or we don't pay a lot of attention to things until we realize that what we have been experiencing is actually a symptom of a specific disease or disorder.

A good Rheumatologist is going to order a host of tests. Some tests are positive in certain autoimmune disorders. Sometimes it is combinations of tests that are positive. They have to get the results and see which disorders are most likely. They also go by symptoms and they will probably get some X-Rays. They may get other tests in addition. You can even have negative tests and still have the disease because sometimes it takes a while for the test to show up positive. I am going to tell you which tests my doctors odered. Maybe that will give you an idea of how many things they have to test for in order to rule out or rule in a disease.

I originally had these screening tests, ordered by my ENT doctor at the University:

ANA, ESR, CRP, c-ANCA, and RF.

2 months later, when I saw my Rheumatologist, she ordered the following tests, some of which contain several specific tests for specific diseases. There were several tubes of blood drawn for several of those listed tests. When I got the results, I had results for about 39 tests:

•Complement C3
•Complement C4
•CRP inflammation
•Cryoglobulin quantitative
•Cyclic Citrullinated Peptide IgG IgA
•Rheumatoid factor
•DNA double stranded antibodies
•ENA antibody panel
•Erythrocyte sedimentation rate auto
•UA with Microscopic reflex to Culture
•Protein electrophoresis
•Vitamin D Deficiency
•Comprehensive metabolic panel
•Thyroid peroxidase antibody
•Anti thyroglobulin antibody
•Anti neutrophil cytoplasmic aby confirm
•Histone antibody IgG
•Anti treponema EIA
•Lupus panel
•Beta-2 glycoprotein antibodies IgG IgM
•Cardiolipin antibody IgG and IgM
•Aldolase
•CK total
•JO 1 antibody IgG
•Direct antiglobulin test

She also ordered X-Rays, a salivary gland biopsy, and a Dermatological consult. The salivary gland biopsy is for the Sjogrens and she ordered that after my SS-A Sjogren's test came back positive.

After my diagnosis with Sjogren's, I was started on Plaquenil, and I am already seeing improvement in symptoms.

I offer my suggestions in the hopes that they will somehow help you in your quest to find out the cause of your problems and to get appropriate treatment.

It is extremely important that we get diagnosed accurately and treated appropriately. Left undiagnosed and untreated, autoimmune disorders can cause severe complications in people, affecting both their quality of life and their longevity.

I sure hope you find the help you need and get the treatment you need. Best of luck.
Avatar universal
Understand, do not take this as a recommendation,
but it has some ideas in it.

It also shows that you are not alone in your experience, and if you read some of the issues other members of this AU forum have (and many are old MH members too) you will see that they share a very similar pattern to your sides.

I know several members who have had trigger finger/ hand issues, and you'll note that one has a shoulder issue, which kind of reminds me of Dee,
and many have general pain and joint issues.

http://hcvsociety.org/forum/viewtopic.php?f=6&t=515
(note this is a 3 page thread)
(also note there are other POST TX issues in this forum; it has it's own post TX sub forum.  For instance there is also a thread on Tendons.

I'm recently having some neuropathy in my feet, and some of these issues could also be related to inflammation, lower HGB meaning that anemia of TX could stress our systems.
I end up noting that sometimes it's that further away area (feet/hands) that has issues.

One of the past members of that forum took some supplements and reported feeling better after some time, meaning perhaps that there was damage that got worse during and particularly post TX, but that he was able to get better.

It's hard to know positively what "fixed" this issue;
was it the supplements?
was it his new healthier body healing in the absence of the HCV?

I'm off to get up in the middle of the night and drive 4-5 hours to my trial center.
I thought I would give you something to read, but I cannot vouch that it is "the ticket" but it is something to ponder and if we had more such type posts we might be able to piece things together to make some sense of some of these issues.  
I think I know of about 5 members with hand tendon issues......

I'm sorry for your pain but I am glad that you posted.

willy
789911 tn?1368640383
thanks willy
747988 tn?1396540478
hi-yes fibromyalgia is said to be linked to hcv altho like you I only developed it post treatment-I successfully treated 7years ago and developed problems 3 months after the last pill.I've given up chasing my tail between GP and consultant,they bat you back and forth with no resolution until you get forceful with them and DEMAND a diagnosis-it took me 5 years to be diagnosed with Post Interferon Syndrome by the liver consultant but still no help or information forthcomimg-we're left in limbo.It's the fatigue,joint pain and the constant temperature irregularities that are hardest for me to deal with-and the lack of motivation because every little thing tires me out and I can't sleep for more than a few hours(pain,fever,vivid nightmares) but sleep all the time-I'm sure many here have the same sides.I do feel that it's an immune response,as if the interferon knocked out our body's interferon and when it was asked to produce it again it was out of kiltre and over responds leaving our systems in a constant state of heightened response.My glands are permanently swollen,I have sicca syndrome.I would've liked to have been informed that such side effects were a possibility pre treatment and I would like to see some help/advice from our doctors.I have lost the tiny shred of trust I had in the medical profession-and I don't trust the NHS's employers at all.Most of the blood tests I had came back normal except my platelets which are still low-I feel far from normal,as you said I feel frail and OLD. My 82year old mother has bags more energy than I do.
789911 tn?1368640383
Yes, the joint pain is just one thing.  On the bad days, I feel sometimes like Im getting ready to start a fever but dont.  At times I feel like Im getting ready to loose my balance. I think its because something is going on with my vison.  I will all of a sudden feel  like I have no energy and feel sick.   I have brain fog where I cant process a lot of information.  I cant call a name of a person, a thing a place.  The noun thing.  I might call a fork a stick out of frustration ect.   My driving a car ability is horrible.  Sometimes I feel like I just loose concentration my mind could just wander off looking at something. It just doesnt come naturally to me anymore.   I get in a car to drive I have to tell myself to stay on task and remind my self as I go along.  I cant believe sometimes I havnt just plowed into the back of someone.  Then another day comes and I feel like my ole self and could juggle multitasking and could drive a tractor trailer with one pinky.  solve anyproblem do calculus or whatever is thrown at me.  If I get stressed and tired I just mentally spin out. It is a yo yo .  Then the depression fight comes in because I cant figure out what is going on.  Wonder if it is going to end.     Just learning ways to cope.  Learning to define my post treatment life.  I think If I can figure out what is going on I would be fine  then I begin to wonder if it is something more serious and begin to stress about that.  So Starting a myriad of doc appointments today to find out which way to go with all of this.  Im not one to just sit back and let it devour me.  18 months is long enough to sit back and wait.  
747988 tn?1396540478
thanks for the info pooh-I saw a rheumo and tested negative for sjogrens and lupus a few years ago but am still sure there is something like that going on-I dropped 10lbs over summer (sleeping) now a bit too skinny.also had a bone density test-some thinning but not osteoporosis-yet.
I'll try for another rheumo referall next time I speak to my ineffective gp.
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