Are all my symptoms Hep C related or is it something else?

[patti62]

Last November I had a liver review with my Consultant re. my Hep C. For various personal reasons I cannot commit to treatment and am hoping for a new drug for Genotype 3 that doesn't contain interferon to come along before I pop my clogs. I took a list of all my worsening symptoms and was sent for an Ultrasound scan and blood test. On the follow up appointment (had to cancel a few due to illness, finally got there last week) he said there was no sign of cirrhosis but wasn't clear about how much scarring there was. He doesn't give me facts and figures, I suppose he may think his patients can't understand the jargon. I have asked to be sent the results as the scan was done by an unsupervised student and I've heard that the expertise of the radiographer makes a difference. He did say I have a vitamin D deficiency. My diet is high in Vit D and I take a multivitamin. When I got home I checked online an saw that Vit D deficiency is common in HCV patients, this wasn't made clear and was mentioned as though it was nothing to do with my illness at all. I am very worried about the pain in my side that is getting worse but no-one has ever even palpated my abdomen to see where its coming from. He said that the scan did not show the thing (can't remember, something to do with sac around liver?) that normally causes right sided pain and was very dismissive. I also have joint pain in my hands, my skin hurts to the touch, nausea, itching, bright red palms, bloating, pain when I urinate, bowel problems, loss of appetite, incredibly debilitating fatigue like I've been hit with a steel door, really bad rages and anger, thinning hair and dry skin, muscle aches and weakness and according to my Consultant there's nothing to worry about!!!

I was diagnosed (by chance) about 6 years ago but think I've had the virus for 30 years. I don't drink any more. Before I got the diagnosis I thought I had ME or fibromyalgia. I was relieved when it was a condition that isn't controversial but now I'm thinking could I have ME alongside the HCV? My Consultant seems very reluctant to acknowledge that all my symptoms are due to HCV or to believe how unwell I am. Advice please!

[gherase]

Hi,

Very sorry to hear about your condition. I am torment about the HCV because of my mum, she is 68 y.o.and last year she got the bad news as she is positive for that. All the family took this test to see if we carry this virus and thanks God we are all right. Even that, I can say that my gall blader was removed 13 years ago and I have fatty liver. My side is painful sometimes, I watch what I am eating and I do not drink and I am taking Milk thisle tablets daily which are very good protectors for the liver. Very important is to rest a lot for example the best time to go to bed will be around 9p.m.(the body regenerate a lot before 12p.m.) My mum was oferred the treatment but she suffers with gout , asthma and arrithmic heart and she is so worried about the side effects and mostly about the fact that she lives in her own and also she doesn't want to be a burrden for us.i have a close friend who is positive for HCV and suffers with some neurological condition and the treatment is not adviseable in his condition. He is taking some hepato-protector tablets called LIV 52 and he is feeling ok. I read on line somewhere that the ones positive with HCV should try to accept this condition, being more positive and believing for better. I hope a new treatment to be found in the future and I wish you well.

[patti62 in reply to gherase]

Thank you for your reply. I have heard about milk thistle and will try it. I hope your Mum will be ok.

[Ph1ldad in reply to gherase]

I was on an informal trial with milk thistle in the 90's: Doe no good at all beyond being a panacea. I was treated for and cured of HCV in 96/98, on the orignal trial for the ribavirin/interferon treatment and, though the treatment was awful I got through it with 2 young children, a wife who had bowel cancer and holding a job down. Check here raysahelian.com/liv52.html for some helpful info on "miracle" herbal cures. Remeber, everything has to be processed by the liver, including proven medicines and herbal ones. If theres no proof that the cost/ benefit is positive for your health then don't risk it

[patti62 in reply to Ph1ldad]

Hi, thank you for replying. Well done for clearing the virus, especially under what sound like less than perfect circumstances. I suppose it just proves that there's no ideal time to start treatment. It's certainly something I'm giving more thought to especially as I've just been told by the Consultant that anyone wanting access to any of the new drugs in future will have to have tried all existing treatments first. This is based on the high cost of the new drugs but seems a bit unfair, almost like blackmail. I had thought I'd be ok to wait for something without interferon to come on the market (for genotype 3) but now it seems I might have to grit my teeth and have interferon after all. I know it worked for you but I'm afraid I've heard so many horror stories and most people say they wished they'd never had it as it's not worked and left them worse off.

[Ph1ldad in reply to patti62]

I know what you mean. For me it was like having the 'flu for 4 out of 7 days for a year. I think it's worth it because I've been clear now for 15/16yrs and the symptoms of cirrhosis are limited to tiredness and portal hypertension. Should die of something else first lol

[mrsmerlin]

Hi, I don't understand why you think you don't have fibromyalgia - the two conditions are not exclusive and often come together. I have fibro which causes a lot of your symptoms and cirrhosis which causes some others - the tiredness combination is out of this world! I don't know if you've seem but they now thinkfibro is affected by nerves in the hands (mine is a result of breaking my back)

Ask to see a pain specialist and your gp should be able to explain test results.

I hope you get the answers you want and they don't come back as bad as you fear

[patti62 in reply to mrsmerlin]

Hi, thanks for replying. Is it hard to get a dual diagnosis for fibro and hep c? I'm worried that all my symptoms will just be put down to the hep c. I agree, the tiredness is terrible! It's also the most difficult thing to explain to people especially if you don't 'look ill'.