HEP C . COPD ,ASTHMA

[MICKYW]

Hi I am new here , I have recently been diagnosed with hep c geno 3 but already have copd and asthma, I have been told I will start a 6 month course of injections and tablets to be honest I am a little scared as I have been told to expect bad to severe side effects , I am just wondering if anyone else has copd and or asthma and if they had any complications due to having them with hep c , I am 51, any feedback will be much appreciated

thanks

mick

[Estiebargle]

Hi mick,

I'm a fellow hep c genotype 3. Infected 20 years ago. Sounds like they are offering you interferon & ribavirin. There are better and more effective therapies for our condition. Please research and see your specialist instead of just taking what is offered.

I've done that treatment and failed. but it only has a 50% cure rate. The new generation meds are more effective with less side effects,

Good luck -

Steph

[MICKYW in reply to Estiebargle]

hi steph,

thank you , I stayed up to research and from what I can gather the new drugs cost far to much for them to be justified to use on the likes of me and others in my situation , my specialist told me I have the option to play the waiting game because more powerful drugs are coming through and with them the older drugs being phased out ,I have just over a month before I start any medication so I will be thrashing it out with my doc and specialist .

I am sorry to hear your treatment failed and wish you all the best for the future -

mick

[Estiebargle in reply to MICKYW]

google.co.nz/search?q=fixhe...

Check it out. You will need to talk your specialist into supervising the treatment. The medication that they are recommending can affect breathing.

[berlington]

hello Mick

I went through treatment in 2007, not going to lie to you, it is heavy going, I was geno type 2a and I cleared, been hep c negative now for 9 years.

Have you had your Liver biopsy yet.?

[MICKYW in reply to berlington]

hi berlington

you have put a smile on my face , that's brilliant you are clear, it gives me hope !

I havn't had a biopsy as of yet to be honest I didn't know I would have to, I will be speaking to my doc and specialist and a lot more research.

mick.

[berlington in reply to MICKYW]

Do your research as it is a lot to take in confused the hell out of me, well it was either that or the brain fog lol. I have a friend who cleared at the same time as well, he has no problems at all. There is lot's of great help and support out there so don't forget to reach out. My support came through the hepcnet.org Good luck Mick x

[Tess74]

Hi Mick, if you're in the UK it'll be worth having a chat with someone at the hep c trust helpline 0845 223 4424 or 020 7089 6221

[Hidden]

Hi Mick, I have hep C genotype 1, so treatment offered today will be a little different. If you are having injections, then they want to give you interferon plus ribavirin or something else.

I've had hep C for 30 years and did treatment two times before, both with interferon. The first time was the old type of interferon, which I had to inject several times a week for six months. It wasn't working and my hair started to fall out, so I didn't complete the one year course recommended at that time.

A decade later, I was given the newer interferon with ribavirin. You don't have to inject it as often - I think it's now once a week but I'm no sure. But again it wasn't working for me - I was just short of the benchmark that allowed them to continue treatment so I stopped three months into the six month treatment.

I can tell you the side effects are not pleasant, but they are different depending on the person. I was losing my hair, but that doesn't happen to everyone, and I had a severe skin reaction to ribavirin (though that may not be one of the tablets they want you to take and I have sensitive skin anyway). I had headaches and flu-like symptoms, was tired all the time and with the ribavirin I got really moody - my nurse said that they refer to it as riba rage. I also have asthma, though I didn't know it at the time (I was misdiagnosed many years ago, when I lived in the US). Ribavirin can cause anaemia, which can cause shortness of breath, but if you are given it, you will have blood tests to monitor how you're doing. I seem to remember they were every two weeks.

Back in November I was suppose to start interferon a third time with ribavirin and a third medicine, but it was held up and now I'm one of the lucky ones that are now being treated with Viekirax and exviera. Other than feeling thirsty at the moment and a week of insomnia and a bit of nausea etc., I feel fine. The side effects are certainly a lot less significant. HOWEVER, I've been told that if my hospital hadn't got me on treatment when they did, I probably would have to wait a considerable time before getting it as the guidelines are now more strict.

I would be careful about turning down treatment because with the lack of money going to the NHS, you may struggle to get it in the future.

Here is a link to the Hepatitis C Trust for the treatments that are available. You can also call their helpline for advice. hepctrust.org.uk/current-tr...

If you start treatment and it's not working for you, you will always have the option to stop. There might be reasons that you aren't being offered other treatments - the guidelines are very strict about which treatments are suitable for the genotypes as well as whether or not you've been treated previously and, importantly, how healthy your liver is. Good luck with whatever you choose and I hope you have success.

[MICKYW in reply to Hidden]

Hi marrion

thank you for sharing your experience , and happy you are on the road to recovery ,I have a bit more knowledge now and I am going to do as much research as I can before making my decision agin thank you

[Emmabskin]

Hi, I have suffered from hep c and COPD for a long time and didn't worry too much. But now I've developed cirrhosis of the liver so have decided to start treatment as soon as possible. My health took a big nose dive this year. I now have neuralgia in my head which is quite frightening. My energy levels are as good as gone. I have suffered from depression for years but it's mostly controlled by tablets but at the moment I'm finding it a bit of a struggle. There is a treatment now which is shorter but still rough . If I were you I'd go for it and hopefully be rid of the hep c, at least. I should think once you feel better after the treatment your'll be able to concentrate on getting your lungs improved. Don't know if that's any help but you're welcome to message me back with any thoughts. Cheers Emma

[MICKYW in reply to Emmabskin]

hi emma

thank you for taking the time out ,and yes I am starting to understand a lot more about hep c and side effects , I think I might be being a bit of a wimp lol, compared to what you have gone through and still are and so many others worse off than me , it sorta puts things in respective

thanks mick.

[Emmabskin in reply to MICKYW]

Reading back through my last email I sounded like a right old winger. Never mind today is a positive day, out to visit my niece and the kids, great fun. Chins up , as Mick said there's always someone worse off. So have a lovely day xx

[MICKYW]

I have stayed awake researching like mad , I think I know enough to be armed and ready to give this desease a bloody good fight , there are some truly inspiring and lovely people in the same boat or have been that are on this site that anybody can talk to , to gain more of an understanding of what you are going through.

I am very lucky to have brilliant support from my family and close friends , I would urge anyone new on here not to be shy , we are all in this !! .

Stay positive !!!

ps.EMMA you are most certainly not a winger lol , your words have helped me so thank you

[hope4tomorrow]

I had hep c gene 3a for 40 years I did the old interferon/ ribavarin treatment. ..it failed in 1992..then did the newer" pegylated inf/ riba " with only one injection a week and 12 weeks in it wasn't working so they took me off it I'm no wimp but they are worse than Chemo the side effects are terrible I have stage 4 cirrhosis and stage 2 varies. ..I had HCC 2 years ago and colon cancer 2012 .. I just finished the newer medication SOLVALDI; (sofosbuvir) and ribavarin for 24 weeks I cleared the virus in 4 weeks ,finished in December 2015 and am still SVR cured now ... I never believed it was possible .. the new medication was almost a are walk ...If you can hang on to get the harvoni, SOLVALDI or the vikeira pack I would hang on for dear life yes they cost me all I had but I feel so much h like a new person it is unreal .... I was so sick all the time before I still have late stage cirrhosis don't get me wrong ...but it's like night and day ..All the best to you .

[MICKYW]

Hi hope4tomorrow.

thank you for your reply ,bloody hell my hat goes off to you , you must be a very strong individual , I am still researching and weighing my options ,I will keep popping in on here with any progress again thank you and all the best to you.

[simon87 in reply to MICKYW]

Hi mick

I too am geno type 3a only found out last week..I have had hep c for about 9months. I was too offered the interferon and rib and I declined as I did my research and heard alot of horror stories plus i too suffer from depression. They told me I could wait a year as the new drugs are coming out. Remember it is a slow progressing disease, ask yourself can you afford to wait?.

Regards Simon

[MICKYW in reply to simon87]

Hi simon

My heads reeling at the moment , a lot of research and some confusion , I still have a month to think about which way I go with treatment , I am in the process of changing my diet and lifestyle and looking also at herbal remedies , thank you for your reply and I wish you all the best for the future

Mick