Aa
fibromyalgia, myositis, and chronic HCV
Question for anyone who has FM and chronic HCV/and or HCB. Does treatment of any kind; peg int w/rib, other newer tx help eradicate the extrahepatic manifestation of this disease? I was dx in 1989 w/non A, non B hepatitis after admitted myself to the emerg room. Every bone, joint, muscle, tendon, and ligament was excruciatingly painful where I needed help to get outof bed, walk up stairs, button my clothes, (everything.)
The hospital referred me to a rhematologist who sd he had seen a few cases like mine every yr and it was a type of arthritis caused by the hepatitis and it may flare up again in the future. He had prescribed as many aspirin as I could tolerate. I think I was taking 10 - 12 over the course of the day to enable me to function.
The acute episode eventually subsided, only to return but at that time wasn't working and had no insurance, so I was taking anything and everything for the pain, aleve, motrin, aspirin, advil, naprosn, which caused a duordenal ulcer.
Around '95 I was told I had chronic HCV and my blood work showed that I was exposed to HBV in the past (but the HBV was not the main problem) it was the HCV.
Went thorugh 2 liver biopsys and continue to have regular lab test to monitor my liver. The biopsys showed I had either grade 1, stage 0, or grade 0 stage 1. (basically just inflamation) and treatment (peg int alpha 2a w/rib) was up to me.
Got a 2nd opinion & was told tx not recommened for me since my bx and tests were good even though I've been carrying an extremely high viral load, "off the charts" as the gastro told me.
I'm looking for advice from anyone who's in a similar situation as my fibromyalgia/myositis is flaring to the point I'm having a hard time functioning. Wondering if there is any tx out there that would work to cure the extrahepatic symptoms of chronic hepatitis (co?) infection.
The hospital referred me to a rhematologist who sd he had seen a few cases like mine every yr and it was a type of arthritis caused by the hepatitis and it may flare up again in the future. He had prescribed as many aspirin as I could tolerate. I think I was taking 10 - 12 over the course of the day to enable me to function.
The acute episode eventually subsided, only to return but at that time wasn't working and had no insurance, so I was taking anything and everything for the pain, aleve, motrin, aspirin, advil, naprosn, which caused a duordenal ulcer.
Around '95 I was told I had chronic HCV and my blood work showed that I was exposed to HBV in the past (but the HBV was not the main problem) it was the HCV.
Went thorugh 2 liver biopsys and continue to have regular lab test to monitor my liver. The biopsys showed I had either grade 1, stage 0, or grade 0 stage 1. (basically just inflamation) and treatment (peg int alpha 2a w/rib) was up to me.
Got a 2nd opinion & was told tx not recommened for me since my bx and tests were good even though I've been carrying an extremely high viral load, "off the charts" as the gastro told me.
I'm looking for advice from anyone who's in a similar situation as my fibromyalgia/myositis is flaring to the point I'm having a hard time functioning. Wondering if there is any tx out there that would work to cure the extrahepatic symptoms of chronic hepatitis (co?) infection.
Hi, I originally went to a gastro but soon switched to a hepatologist. There are some gastros that know more about hep then others. I chose a research clinic in NYC which only works with hep c. It was the Rhoumatolgist who was best in assessing the pain situation. But I went to a medical university phlebotomist to get my cryo test the fourth time as it was clear to me that quest labs technicians were incorrectly doing the test.
You can probably start a new name if you sign up again...not sure.
I have been off tx for over a month and my CFS or FM is so bad I just cry a lot. I remember having some problems before tx and some during tx, but it went away most of the time. I have an appt tomorrow with the rhemotologist, hoping to find some answers. Reading up on it, it seems like CFS. I am sleeping sometimes 20 hours a day. I have my doubts that tx gets rid of this, but exasberates it as you said. I will post what I find out Tues.
I have been off tx for over a month and my CFS or FM is so bad I just cry a lot. I remember having some problems before tx and some during tx, but it went away most of the time. I have an appt tomorrow with the rhemotologist, hoping to find some answers. Reading up on it, it seems like CFS. I am sleeping sometimes 20 hours a day. I have my doubts that tx gets rid of this, but exasberates it as you said. I will post what I find out Tues.
Geez I wish I could change my nickname. Thanks much guys for your replys, it makes me feel better knowing I'm not alone. It sounds like tx has helped you all w/ the FM pain. I'm an older person w/several other medical problems unrelated to the hepatitis, I don't know if I can handle the tx side effects. Do any of you see a hepatologist or do you all see gastros?
Peace, zzzzzz
Peace, zzzzzz
A good blood lab can test for cryoglobulinemia which is a condition that is usually caused by hep c. Curing hep c is believed to stop the chronic joint pain caused by cryo.I'm on oxycodone, Avinza, and Lyrica plus an occasional advil and Tylonol to relieve pain- it works. I have insurance and go to a pain managment specialist as per my Rheumatologist and Hepatologist who jointly discovered the cryo as the source of my pain.
When I started TX all those extra problems vanished now over a yr post TX very little has returned even tho the hep C is still with me (I am also in the same hep B shape as you with the same BX results. I was in a lot of pain before TX.Feeling good now. Waiting for the new drugs my doc said 3 to 5 yrs.If my pain returned as before TX I would TX sooner.
I had pretty bad joint pain in knees, hands, fingers, hips, etc for several years prior to dx wHEPC. Since going on tx 13 weeks ago, all of this has disapeared. Of course it has been replaced with some of the tx sides. Hopefully it will not return if I make it to svr.
Good Luck
Good Luck
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