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I need some suggestions...

I found out I had Hep C about 3 yrs ago. I have not taken the treatments because everything I read tells me how bad it makes you feel. I have to work and would not be able to miss so much because of my illness. I also have rheumatoid arthritis. Which I have read could be caused by Hep C. Everyday it gets harder and harder for me to get up in the mornings to go to work. I have insurance but not short or long time disability insurance. Any suggestions?
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Avatar universal
I reccomend to treat.  Some people don't get any side effects, most people have some but manageable sides, and a small percentage have to stop treating due to sides.  All in all, get a dr you trust who is knowledgable, do your own research too, and give yourself a time frame to start.  Good luck!
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Avatar universal
Will rheumatoid marker show up in blood before a Hep C diagnosis.  If I was exposed to the virus - it has been just over 1 year.  3 months ago, a blood test was done because I keep waking up with very sore ankles.  The rheumatoid marker came back - I was not tested for Hep C (they were specificially looking for thyroid problems, as my mother has thyroid problems).  I have no other noticable symptoms that I could attribute to Hep C.  I get tired now and then and lately I have been very thirsty, but that could be just thirst and exhaustion from the summer.... Very scared.  Does Rheumatoid marker show up early or late in Hep C?  I am,of course, going to get tested - but needing some reassurance in the meantime
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Avatar universal
I really had to research and advocate for myself to get a diagnoses. I think it's important for all of us to know about the possible non-liver manifestations of long term HCV. Often there are no symptoms so people don't know they have these things.
Take Care-Dave
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1225178 tn?1318980604
Thanks for that info. I found it quite enlightening.

Diane
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Avatar universal
Hi-
I am sorry to hear you are suffering. I have hepc, cryoglobulinemia and Rheumatoid factor in my blood and I am treating currently and although I am only 6 weeks into it. I am not working right now, but feel I could be if it was not a physically demanding job. Symptoms as you might have read vary greatly in each individual and it is hard to know how you will feel.


I have read that many people with hcv and cryo also have a false positive rheumatoid factor. do you know what your rh factor number is and your rheumatoid arthritis number is. This is usually indicative of the severity.

I know you didn't ask for all this information, but I added some articles and links in case you are up for reading it. You may have the false RH factor and it may resolve with HCV treatment. Perhaps your doctor already knows this, but the problem is that often a rheumatologist or hepatologist, even good ones misdiagnose these things because they have not had a lot of experience with the combination of issues.  


You should probably ask your doctor about being tested for cryoglobulinemia which is often missed and comes with HCV and RH factor. The cryoblobulinemia test must be performed at a lab that is equipped to handle the blood properly which must be placed in special warmed test tubes and kept at the correct temperature for accurate diagnoses. Most labs and hospitals will test you for it but they don't do it correctly. Most major university hospitals have the equipment, and a lot of doctors, even good hep c specialists don't know how the blood needs to be treated. you have to advocate for yourself. I don't say this to scare you, just to insure that your being checked. I insisted my well known hep c doc test me for cryo, he was humoring me when he did and found out I was correct and did have it.

Also there is a test to see if you have the real Rheumatoid Factor or the kind that people get with HCV that mimics it.

http://www.hcvadvocate.org/hcsp/articles/bonkovsky-2.html

RHEUMATOLOGIC and AUTOIMMUNE MANIFESTATIONS
Myalgia (muscle pains), fatigue and arthralgias (joint pains) are common manifestations of HCV infection. HCV-related arthritis commonly presents as symmetrical inflammatory arthritis involving small joints. The joints involved in HCV-related arthritis are similar to rheumatoid arthritis (RA). This sometimes makes it difficult to differentiate true RA from HCV patients with positive rheumatoid factor but without RA. HCV-related arthritis is usually non-deforming and there are no bony erosions in the joints. A marker called anti-keratin antibodies has been studied to differentiate true RA from HCV related arthritis. In a recent study, 71 patients who were rheumatoid factor positive were tested for anti-keratin antibodies. Anti-keratin antibodies were detected in 20/33 (60.6%) patients with true RA and only 2/25 (8%) patients with HCV-related arthritis (10). Patients with HCV-related arthritis seldom respond to anti-inflammatory medications, and although there are no controlled trials to address this issue, it has been recommended to treat these patients with combination antiviral therapy of interferon and ribavirin (11).

There are probably a lot more people who have HCV who have Cryo and RA  who don't know it because they have not been tested. I have read some articles that estimate very high percentages especially in people that have had HCV for a long time. These other non-liver manifestations of HCV usually don't occur in people who have not had HCV for many years (20-40 years). All the reason to treat before it happens for people who are early in the disease.



http://www.*************.com/rheumatoid-arthritis/c/53/55491/double

The Double Why-Me: Rheumatoid Arthritis and Hepatitis C
Related: Rheumatoid Arthritis, Hepatitis C More Topics >

Mark Borigini, M.D.
Thursday, April 02, 2009
View All of Mark Borigini, M.D.'s Posts

While the past decade has seen great advances in the understanding and treatment of rheumatoid arthritis, there are still segments of the rheumatoid arthritis population that have not been able to even try many newer treatments due to the presence of other illnesses. Such patients must deal with more than one potentially life-shortening illness, and the realization that they are unable to reap the benefits of available treatments.
One such illness that can impact the therapeutic management of a rheumatoid arthritis patient is hepatitis C. Infection with the hepatitis C virus represents a growing problem throughout the world: It is estimated that 170 million people are infected with hepatitis C; in the United States, the number is about 3 million.

It has been estimated that there are about 40,000 rheumatoid arthritis patients with chronic hepatitis C infection.

The transmission and risk for acquiring hepatitis C is mainly through exposure to contaminated blood, but can occur through high-risk sexual activity, tattoos or body piercing and shared personal items, to name a few. Most patients with hepatitis C infection do not have outward signs of the disease; the majority of those who do complain of anything, complain of fatigue. Treatment of chronic hepatitis C involves pegylated interferon with ribavirin.

There are several ways hepatitis C can affect a rheumatologist's ability to diagnose rheumatoid arthritis:
1) many patients with hepatitis C have a falsely positive rheumatoid factor
2) patients with hepatitis C can suffer joint pain and swelling, looking very much like rheumatoid arthritis patients
3) hepatitis C patients do have lower levels of anti-CCP antibodies compared to the rheumatoid arthritis patient.

It is difficult to answer the question regarding the safest treatment for rheumatoid arthritis patients who also are infected with hepatitis C. But I do believe that it is reasonable to avoid drugs which have the high potential for liver toxicity, such as methotrexate and Arava. And there are published recommendations to avoid even the less-liver toxic drugs, such as Plaquenil and sulfasalazine.

Interestingly, the tumor necrosis factor inhibiting drugs appear to be safe, and the data is growing on their safety in hepatitis C patients who also suffer from rheumatoid arthritis: There seems to be no obvious influence on the underlying hepatitis C infection when these biologic agents are used. Of greater interest is the fact that there was a study published which found that Enbrel in combination with interferon and ribavirin was safe and effective for the treatment of hepatitis C! Currently, there is an ongoing clinical trial examining the safety and usefulness of Remicade for the treatment of hepatitis C. In fact, the American College of Rheumatology has recommended that the tumor necrosis factor inhibiting drugs (Enbrel, Remicade and Humira) can be used in patients with chronic hepatitis C without causing worsening of liver function.

It is important that patients and rheumatologists be aware that hepatitis C is a relatively common chronic viral infection, affecting the diagnosis and treatment of rheumatoid arthritis. And while the tumor necrosis factor inhibiting agents appear to be safe and effective in rheumatoid arthritis patients with hepatitis C, definitive studies still are underway. In the meantime, rheumatologists must work closely with liver specialists to monitor patients with hepatitis C, all the while being as aggressive as possible in treating the potentially disabling disease, rheumatoid arthritis.
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1225178 tn?1318980604
Have you had a biopsy yet? A lot of us are treating and working. Yes, it is HARD to do, but when you think about the fact that you can NOT LIVE WITHOUT YOUR LIVER, and if damage is apparent from the biopsy, we just have to "bite the bullet." Since you are already having more troubles getting going... I hate to say it but before I started treating I noticed that my energy levels had dropped for the last couple of years, and other physical discomforts had increased. You don't give any info about yourself, so I can't say about you, but I'm 55, and they say that after 50 damage accelerates... I want to feel good again, so I decided to "bite the bullet".

Tell us your genotype and biopsy results and we'll be able to address your issue more directly.

Diane
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87972 tn?1322661239
Hi there, and welcome to the discussion group. Sorry to hear of your problems; perhaps the folks here can help you sort out a course of action.

Aside from the RA you’re experiencing, HCV can obviously also cause progressive liver disease; have you ascertained the degree of fibrosis you might have sustained to date? This is typically determined by liver biopsy; although there are other less invasive means available.

Most of us manage through treatment and work, one way or another. The meds can make us feel poorly, but there are other meds that can help with many of the most significant side effects. Based on talking to patients through this forum for years, my guess is that probably 70% will continue to work through their treatment; albeit some will modify/reduce their schedule somewhat.

How is your support system at home; will your spouse or children help pick up the slack if you’re too pooped to manage some of the home chores? Will your employer help with reduced schedules if needed?

What genotype are you; and are you aware that newer, possibly more efficacious drugs for HCV may be released soon? While these will initially be combined with the current interferon/ribavirin combo, they increase odds of success from 45% to 75% in Genotype 1 patients, and have halved treatment duration for select subgroups in clinical trial.

Good luck to you—

Bill
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