Aa
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!
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!
"ANA, ESR, CRP, c-ANCA, and RF. How did those turn out?"
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The ANA was positive. The others were normal/negative.
"How did your ent know to get those tests?"
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I asked for a referral to the University ENT doctor from my Hepatologist because I had a nasal septal ulceration that I wanted an ENT to look at. The ENT doctor is competent. She knows that some autoimmune disorders
can cause nasal septal ulcerations. So she ordered some autoimmune screening tests.
When the ANA came back positive (which it had also been positive in Jan. 2012) I told her I wanted to see a Rheumatologist at the University and I asked her which one I should see. (I wanted to get a really good Rheumatologist so I wanted one at the University, not one in the city where I live.)
"The second set of tests look very expensive!"
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Well, they were. There were actually several more tests done than it appears because several of those ordered tests were actually comprised of several sets of tests, so they needed several tubes of blood for some of those tests. All of the tests were billed separately. Most of them were about $200 each, the cheapest one being $54 and the most expensive one being $459. I have good health insurance so my personal costs are minimal.
I don't think a regular doctor would know what to do with that lists of tests. Even if they ordered them, they would not know how to interpret all of them or figure out what is going on. My regular doctors (PCP and Derm here in my local clinic) did not even think I needed to have any more tests even though my ANA was positive in Jan. 2012. That is why I took the initiative to get a referral to the ENT and then ask the ENT which Rheumatologist I should see. If I had not taken the initiative and done that, I would still be sitting here with no tests and no diagnosis. It is imperative to have a Rheumatologist if one thinks there may be autoimmune diseases/disorders. In addition, my Rheumatologist is intelligent enough and competent enough to refer me to other appropriate specialists ..... Oral Surgery for the salivary gland biopsy, Dermatology for the skin issues (even though they are related to the Sjogren's), and Opthamology for the eye monitoring.
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The ANA was positive. The others were normal/negative.
"How did your ent know to get those tests?"
-------------------------------------------
I asked for a referral to the University ENT doctor from my Hepatologist because I had a nasal septal ulceration that I wanted an ENT to look at. The ENT doctor is competent. She knows that some autoimmune disorders
can cause nasal septal ulcerations. So she ordered some autoimmune screening tests.
When the ANA came back positive (which it had also been positive in Jan. 2012) I told her I wanted to see a Rheumatologist at the University and I asked her which one I should see. (I wanted to get a really good Rheumatologist so I wanted one at the University, not one in the city where I live.)
"The second set of tests look very expensive!"
------------------------------------------
Well, they were. There were actually several more tests done than it appears because several of those ordered tests were actually comprised of several sets of tests, so they needed several tubes of blood for some of those tests. All of the tests were billed separately. Most of them were about $200 each, the cheapest one being $54 and the most expensive one being $459. I have good health insurance so my personal costs are minimal.
I don't think a regular doctor would know what to do with that lists of tests. Even if they ordered them, they would not know how to interpret all of them or figure out what is going on. My regular doctors (PCP and Derm here in my local clinic) did not even think I needed to have any more tests even though my ANA was positive in Jan. 2012. That is why I took the initiative to get a referral to the ENT and then ask the ENT which Rheumatologist I should see. If I had not taken the initiative and done that, I would still be sitting here with no tests and no diagnosis. It is imperative to have a Rheumatologist if one thinks there may be autoimmune diseases/disorders. In addition, my Rheumatologist is intelligent enough and competent enough to refer me to other appropriate specialists ..... Oral Surgery for the salivary gland biopsy, Dermatology for the skin issues (even though they are related to the Sjogren's), and Opthamology for the eye monitoring.
I figured as much. I just saw it and wasn't certain if you were up on it.
Better safe than sorry.
Better safe than sorry.
You do not have to worry about anything concerning me or the drugs I am taking, Willy. I already know about all of that. Not sure why you think I would not know about it. I do my research very well. In addition, all of the monitoring is already in place.
And, my Rheumatologist is exceptionally competent. She has all of the monitoring, referrals, checks already in place, including scheduled on-going monitoring by an Opthamologist.
As for taking drugs, I am not afraid to take drugs to treat diseases that I have. If they work for a disease or disorder, I will take them. Of course all drugs have side effects, although one does not get all of the side effects. One has to weigh the consequences of not treating a serious disease. Not treating a serious disease can lead to extremely serious and debilitating consequences.
And, my Rheumatologist is exceptionally competent. She has all of the monitoring, referrals, checks already in place, including scheduled on-going monitoring by an Opthamologist.
As for taking drugs, I am not afraid to take drugs to treat diseases that I have. If they work for a disease or disorder, I will take them. Of course all drugs have side effects, although one does not get all of the side effects. One has to weigh the consequences of not treating a serious disease. Not treating a serious disease can lead to extremely serious and debilitating consequences.
(you wrote)
After my diagnosis with Sjogren's, I was started on Plaquenil, and I am already seeing improvement in symptoms.
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I don't know much about this drug, so I did a quick google.
I recognized something and so I clicked one of the top google links;
http://webeye.ophth.uiowa.edu/eyeforum/cases/139-plaquenil-toxicity.htm
I hope you'll do a quick read and make sure you monitor the use of this drug.
=======================
This also caught my eye;
. However, there have been case reports of patients with hydroxychloroquine toxicity as early as 1.9 months of treatment [8]. Hydroxychloroquine is cleared by both the kidney and liver, and therefore any renal and hepatic impairment can increase the risk for retinal toxicity. Elderly patients (>60 years old) may be at increased risk for retinal toxicity. Lastly, previous retinal and macular disease may place patients at higher risk and may mask signs of early toxicity.
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You are probably already aware of this, but it just caught my attention.
I also have a friend who suffered extreme issues from 2 doses of a cipro type antibiotic, from the Fluoroquinolone Antibiotics group.
Taking steroids in greatly enhanced her risk.
I mention this since this thread references auto-immune diseases which may involve steroids I thought it one more reason to bring up this "heads up".
see also;
http://www.medhelp.org/user_journals/show/16135/Fluoroquinolones-increase-risk-of-tendon-rupture-in-elderly--transplant-recipient--steroid-users
(not the same drug but the point is increased risk w/ steroids.)
After my diagnosis with Sjogren's, I was started on Plaquenil, and I am already seeing improvement in symptoms.
=====================
I don't know much about this drug, so I did a quick google.
I recognized something and so I clicked one of the top google links;
http://webeye.ophth.uiowa.edu/eyeforum/cases/139-plaquenil-toxicity.htm
I hope you'll do a quick read and make sure you monitor the use of this drug.
=======================
This also caught my eye;
. However, there have been case reports of patients with hydroxychloroquine toxicity as early as 1.9 months of treatment [8]. Hydroxychloroquine is cleared by both the kidney and liver, and therefore any renal and hepatic impairment can increase the risk for retinal toxicity. Elderly patients (>60 years old) may be at increased risk for retinal toxicity. Lastly, previous retinal and macular disease may place patients at higher risk and may mask signs of early toxicity.
========================
You are probably already aware of this, but it just caught my attention.
I also have a friend who suffered extreme issues from 2 doses of a cipro type antibiotic, from the Fluoroquinolone Antibiotics group.
Taking steroids in greatly enhanced her risk.
I mention this since this thread references auto-immune diseases which may involve steroids I thought it one more reason to bring up this "heads up".
see also;
http://www.medhelp.org/user_journals/show/16135/Fluoroquinolones-increase-risk-of-tendon-rupture-in-elderly--transplant-recipient--steroid-users
(not the same drug but the point is increased risk w/ steroids.)
Willy I went to that forum and got a lot from it! Seems we are not alone at all. Thanks for your suggestions!
Pooh, On your first set of tests from the ent ANA, ESR, CRP, c-ANCA, and RF. How did those turn out? How did your ent know to get those tests? The second set of tests look very expensive! I do have insurance so I will get in there and get started. I just have to find a Rheumatologist! I copy and pasted the list to give to my doc.
Otterwatcher Thanks for your thoughts! First time I have heard of Post Viral Fatigue syndrome can you elaborate.
Pooh, On your first set of tests from the ent ANA, ESR, CRP, c-ANCA, and RF. How did those turn out? How did your ent know to get those tests? The second set of tests look very expensive! I do have insurance so I will get in there and get started. I just have to find a Rheumatologist! I copy and pasted the list to give to my doc.
Otterwatcher Thanks for your thoughts! First time I have heard of Post Viral Fatigue syndrome can you elaborate.
I could've written that! I have very similar sides to you-I did the interferon/ribavirin treatment so it must be the interferon. my consultant said approx 4% of his patients have suffered the same sides but we'll never really know will we? The Hep C Trust found the figure to be somewhat higher in their post treatment survey but that's dated 2007.
maybe we could do a poll on the main hepc forum? I was diagnosed (by my GP) with Post Viral Fatigue syndrome pre the Post Interferon diagnosis-both make sense.
maybe we could do a poll on the main hepc forum? I was diagnosed (by my GP) with Post Viral Fatigue syndrome pre the Post Interferon diagnosis-both make sense.
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Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
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.