Anybody know anyone living with Hepatitis C?

[privatematter]

I'm a semi-regular but have changed my name just to keep it separate from the normal chit chat. A close relative has been diagnosed with Hep C - came from a blood transfusion years ago apparently. Said relative will undergo Interferon treatment for it. Has anyone any experience of this? All I know is what I've googled, but don't really know what to think. I'm quite shocked and worried actually - should I be?

[WigWamBam]

I can't help, but just bumping this in case anyone else can.

[expatinscotland]

My mum's sister is. She apparently contracted in from a blood transfusion in the 1970s after being hit by a car.

She is still working as a flight attendant and will soon be 59, retiring next year.

She has not yet had to undergo Interferon treatment for it. It took a while to diagnose her. At first they thought she had lupus.

[privatematter]

Thanks wwb.

eis - that's great that your aunt is pretty much unaffected - some people who are infected don't develop severe symptoms. Unfortunately my relative already has liver damage which is how the hep c diagnosis came about.

Anyone else? Sorry, I know it's all a bit vague, I'm just trying to get an understanding of the condition - the good and the bad.

[Gomez]

My Dh's Uncle was diagnosed in 1998 with Hep C. after becoming quite ill. I have no idea how he was infected but has lived an iteresting life and spent sometime in India so I have never liked to ask!

Anyway he had Interferon treatment and found it bloody awful - stopped about 1/2 way through to much family angst as he felt he would rather deal with the illness rather than the side-effects. He is in reaonsble health now - doesn't work, needs to take it easy but in general lives a failr full life. Has probably only 1 bad period each year. Has only been hospitalised once since the original diagnosis. He is now in early 50s BTW.

HTH.

[HRHWickedwaterwitch]

I have a friend who has it - used to be an iv drug user, clean for years and years, she's fine and lives with it. She doesn't drink at all and hasn't done for quite a few years adn she eats v healthily. There must be a support group, have you googled? Pamela Anderson has hep c (irrelevant but thought I'd tell you!).

[lynny70]

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[funnyonion]

My MIL is undergoing treatment at the moment.She contracted it through a blood transfusion when she was a child in Russia. She was diagnosed when she wanted to give blood about ten years ago. She has just recently started treatment due to the doctors recommendation.Unfortunatley she's had/having a terrible time on the medication, she's been feeling depressed,exhausted and sick. She was on the treatment for a month without any side effects and then things started to go down hill. The doctors took her off the medication for two weeks to give her a break as she was having a really hard time with it. She is now two weeks into the treatment and so far feels alright. I think the frustrating thing is that before starting the treatment she felt fine. The doc' recommended that she start the treatment before she gets older when it's more likely for complications to occur. She is 53yrs old.

[expatinscotland]

Private,
My aunt does have liver damage. She started to feel ill and tests were run. That's why they thought she had lupus at first. Then the results of a liver enzyme test through.

She had to go to part-time work, and will be taking what in America is considered an early retirment - luckily she has been w/the same company for over 30 years so she'll have a decent pension.

Mainly it has made her more tired, and at times she suffers from fatigue so bad she cannot work.

But considering she contracted the disease in 1972, and it took until 2003 to manifest, she is doing quite well.

[nikkie]

My x is having inferon at the moment he caught it through injecting drugs. He says it is worst on the days following the injection(in his case over the weekend) and he has been off work since easter.BUT he does have a tendacy to over react to his own medical probs and as a student nurse found he had all the ailments he dealt with so I am sceptical about if it has been bad ALL the time.(Especially as he has been travelling 3 hours there and 3 hours back to watch football matches on the sat!)
There is a forum he goes on but I don't really know where it is.

[privatematter]

Thanks so much for the replies.

Gomez - I'm interested to hear that your uncle gave up on the treatment but still managed to contain the disease, probably through very healthy living. I read somewhere today that people with hep c who exercise a lot produce higher levels of a certain enzyme thought to keep the virus at bay. This probably applies to your friend too www (I also thought of Pammy - surely she runs a support group in Malibu!)

Lynny - it's good to hear that people do recover. Apparently if one had a transfusion in the 70s there's a 10% chance of having got the hep c virus - I should imagine that % should be much higher as it is now believed many people carry the virus their whole lives without showing any symptoms. My relative had a transfusion in the 70s - I doubt there's any case to answer now though, it really is just bloody rotten luck.

Funnyonion I hope the terrible time your mil is going through will be worth it in the end.

Thanks again everyone.

[privatematter]

expat - I suppose this is where I'm confused - why do some have treatment and others not? eg Funnyonion's mil seems to have been offered it almost as an insurance against unfavourable future outcomes, but your aunt has just soldiered on without and is doing alright, kind of. I don't really get it, but I also don't expect you to know the answer! It's just good to know that some carriers manage to lead a relatively normal life.

Nikkie - I hope your x gets worthwhile results from the treatment - it can't be easy whatever the circs.

[lynny70]

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[vickiyumyum]

have only come across this professionally (midwife) and the womanseemed perfectly healthy and was on regular medication, and was pregnant with her 3rd child, which was unaffected when born.

I beleive pamela anderson has hep c, from tattooing!

it is mainly the liver function that causes problems, if not monitored carefully, but as your relative is under medical care they will be monitoring them closely and be able to prevent/prolong a healthy liver.

[Elibean]

Yes, my best friend is (and just had her second child)...I did (but underwent treatment and cleared the virus nearly eight years ago)....an NCT pal's husband was (also treated, also clear - though more recently)...and I know of several others.

The course of the disease varies a lot from person to person, but its nearly always a long, slow, chronic progression - sometimes causing sifnificant liver damage, sometimes not. Mine was. Treatment is more manageable now than it was when I did it, thanks to Pegylated Interferon which is only once a week injection. Side effects vary hugely - I had a rough ride, I know of others who've had an easier or a harder time than me. One thing is for sure, emotional and physical support can make a HUGE difference - I was lucky there!

I'm sorry your relative is going through this, I think the time just after diagnosis is the worst...so confusing, so much information to take in, shock and other feelings to process, and quite often a degree of (outdated, frustrating, and isolating) social stigma to cope with.

There is a good website run by the Hepatitis C Trust, which has a lot of links, support, information - I think the address is www.hepcuk.info

Wishing your family well!

[Elibean]

ps I'm assuming your relative will also be offered Ribavirin, which is usually given with Interferon in whats known as combination therapy...if for any reason he/she is NOT being offered Ribavirin, I'd make a lot of fuss about it: makes a huge difference to the likelihood of sustained response! Lots about it on the website..

[privatematter]

Thanks again for all your replies. They've really helped me to put this into perspective. I feel so much more able to be positive now without sounding completely hollow iykwim.

Elibean - I'm sure he's getting whatever treatment is available - he's actually in the US and says he's had every test going so knows exactly what nasty diseases he hasn't got! It's good to know that you and people you know got through it.

VYY - he's waiting for the results of a liver biopsy at the mo, so I suppose that will determine if and when the nasty treatment starts.

[highlander]

what's her face from Baywatch with the big boobs. She used to write a column in a woman's mag

[vickiyumyum]

hope all goes well for them! good luck, it seems that there is a lot of positive stories about people overcoming hep c, that is very encouraging.