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!
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.
(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.
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.
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.
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:
•Cyclic Citrullinated Peptide IgG IgA
•DNA double stranded antibodies
•ENA antibody panel
•Erythrocyte sedimentation rate auto
•UA with Microscopic reflex to Culture
•Vitamin D Deficiency
•Comprehensive metabolic panel
•Thyroid peroxidase antibody
•Anti thyroglobulin antibody
•Anti neutrophil cytoplasmic aby confirm
•Histone antibody IgG
•Anti treponema EIA
•Beta-2 glycoprotein antibodies IgG IgM
•Cardiolipin antibody IgG and IgM
•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.
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.
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.
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.
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 . 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".
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.
"ANA, ESR, CRP, c-ANCA, and RF. How did those turn out?"
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 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"
Not all people with autoimmune diseases test positive for the antibodies. Plus, a person can test negative at one point and then a year or two later can test positive.
Hi, I am so sorry for what you are experiencing. I have been trying different things for my pain. I still drink a lot of water. I have started taking glucosamine and chondroitan for the joint pain.
A daily vitamin without iron. I do think that exercise and/or stretching can help
I am having a case of frozen shoulder and realize some of my problems are due to inactivity. As I do the PT exercise I can see huge improvement. As I sit here typing I can see that I am putting that shoulder in a position which is adding to my pain and perhaps even scar tissue.i.e. arms too close to the body as I type sometimes for long stretches of time.
I also take calcium, magnesium, Vitamin D to try to help my skeletal system.
At times I take extra magnesium as that can relax the muscles.
I think Pooh's idea is good, if I can not get improvement by moving more, exercising, stretching, then I will go get tested.
I was given Plaquenil before I treated and decided that for the few times I had pain I was not going to take something all the time.
Now that I am SVR I may change my mind however I want to exhaust everything else first.
Thinking of you always
Hi yeah, me again, is the pain in all your joints? In hips and shoulders?
Just curious as I have been reading a lot about the shoulder and hip joint and how they can become frozen and it is a long process that starts with a few twinges and escalates until 6 months later you can barely move.
If I had known this 5 months ago I could have done something about it.
Just a thought. Also, years ago I read that hip pain can be a sign of calcium deficiency. It was in Adelle Davis's book on vitamins and what a deficiency of each can cause in the way of problems. Old but good book.
I dont have too much trouble with my shoulders. More hips, knees, hands, wrists, neck, back. Ha, seems like everywhere but my shoulders. It is so weird because like I said. some days Im fine and other days Im almost crippled. It is very frustrating!
Wow! I just happenned to log on to medhelp today (almost 2 yr post tx - relapsed) and I found this new forum. Everything you talk about is like an exact description of what I am experiencing! It blows me away that it could be so similar. Some days I have a few hours where I feel like my old self and then Bam! headache, sickness, fatigue and all the rest. It definitely flares and cycles as some days are so bad I am sure I must be dying of cancer. Nice to know I am not crazy but this is truly scary. I wish I knew what to do to get better. Nothing I have tried so far seems to help. Hope to try a tx without interferon in the near future since I feel alot of my problems could get better when I kill this nasty virus.
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