Hep c medicine: Hello, new on here and... - Hepatitis C Trust

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Hep c medicine

Surjy profile image
43 Replies

Hello, new on here and worried about my husband who has hep c, we received a letter today that the nhs have approved interferon medication, is this given on its own or with something else, I don’t know what to expect and worried about side effects, is this an old version of treatment, anyone help please...

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Surjy profile image
Surjy
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43 Replies
Sillysausage234 profile image
Sillysausage234

Hi, and welcome I think interferon is usually 24 week treatment used in combination with ribivarin for the first month,there are more newer treatments now,Maybe worth waiting if possible.

Surjy profile image
Surjy in reply to Sillysausage234

Sounds like a long time to take when there is medicines you can take for less the time,depends when we get it, can’t help worrying though..

navigatinglife profile image
navigatinglife

Hi 🙋most people are receiving DAAs direct acting anti virals. I know that pegylated interferon is the old type but i dont know if theres another type. You should be seeing a hep c nurse hopefully soon, so ask them about treatment options? I never received a letter, most on here are seen via hospital with a nurse. They give you all info & take bloods etc. Like Alan says best wait for a shorter treatment ? Treatment depends on lots of things specific to each person. Maybe call the number on the letter? Best wishes, navs 😍

Surjy profile image
Surjy in reply to navigatinglife

Hello, my husbands had all the bloods done and we are going to see the nurse soon for treatment, his got genotype 3 so don’t know if there’s other medicines for it, we received a letter from the hospital to say that interferon had been approved today, really don’t know what to do, think I’ll end up being ill with worry if we wait longer...

Cara78 profile image
Cara78 in reply to Surjy

I would wait. I had hep c for nearly 18 years and got approved for maviret, I have finished treatment now and waiting to see if I've cleared it.

Surjy profile image
Surjy in reply to Cara78

Hello, that’s great hope everything comes back clear for you, will ask the nurses and see what they say and how long we will have to wait, I don’t know what to expect, they probably say that’s all they are offering us but I just don’t want my husbands liver getting worse while we wait.

Cara78 profile image
Cara78 in reply to Surjy

If you have good diet (no red meat) and stay away from smoking /alcohol drink loads of water and your liver isn't badly scarred I would definitely wait for treatment.

Surjy profile image
Surjy in reply to navigatinglife

Thankyou 👍

Surjy profile image
Surjy in reply to navigatinglife

Hello I probably sound silly but what is DAAs?

navigatinglife profile image
navigatinglife in reply to Surjy

Direct acting anti virals

in reply to navigatinglife

Hi how’s your treatment going are you ok xx

navigatinglife profile image
navigatinglife in reply to

Hi, hope you're feeling better 😍. I finished treatment almost 10 weeks ago, I haven't been cleared yet but I haven't had any tests since I finished. It was very low at wk 8. appt in 2 weeks, but I have a bone infection now and am having surgery in May so I am not really thinking about it. I go from 1 to the other so don't get too stressed about either one. Crazy, but I am ever hopeful 😃 😍😍😘

Surjy profile image
Surjy in reply to navigatinglife

Hi we are going to see the nurse in a weeks time to start treatment but we will ask if we can have the newer medicines rather than the interferon, if not then we are thinking of buying it ourselves and see if they will monitor my husband, got lots of questions to ask the nurse, let you know how we get on..

navigatinglife profile image
navigatinglife in reply to Surjy

Hi, that's great to hear and I felt the same. My nurse said they had one guy who had purchased his own l looked into myself as I was so shocked when diagnosed & scared I got straight on it like yourselves. found fixhepc also that trip to India where you go yourself and purchase them via hospital. I am confident the nhs will rather treat you & my fingers x ed for you both. Good to have a back up plan though. I'll be looking out for your news 😍 best regards to you and your husband, xx

Surjy profile image
Surjy in reply to navigatinglife

Thankyou X

Surjy profile image
Surjy in reply to Surjy

That sad thing is we did have the medicine in December from India as my husband fell ill whilst out there, he was in hospital for three days with other things and they did a blood test, otherwise we would never have found out, we thank god we did.When we came back here and went to see our doctor they said they don’t advise us to take them, they don’t know anything about the tablets, as we would have had to wait until April for our first appointment and shocked, not knowing anything about this at the time at all then, we returned the tablets to get money back ☹️

If I’d known everything I do now we would have kept them, hopefully we will be treated here but if wait is to long then will buy them, just cannot keep waiting, rather deal with it straightaway, will keep you posted...

navigatinglife profile image
navigatinglife in reply to Surjy

Ahh,blessing in disguise. You will not have to wait for treatment as the NHS are on a mission to rid the UK of hepc by 2025. I had to wait only 4 weeks from nurse appointment to taking my first tablet. My medication was delivered to my home via a pharmacy from a different county. I didn't have to go to GP or chemist etc. Only 3 appointments with the nurse at the hospital. If, like myself, your husband has had this unknowingly for decades, 4 weeks won't make a difference ☺ I wanted treatment immediately as I knew nothing abour hepatitis and was pretty terrified. Thinking of you 😍

Surjy profile image
Surjy in reply to navigatinglife

We are going next week for treatment,fingers crossed 🙏🏼

navigatinglife profile image
navigatinglife in reply to Surjy

Yes I haven't forgotten. Let me know what happens x

Surjy profile image
Surjy

Is there anyone who has had treatment for genotype 3, so we know what kind of treatment to ask about when we go to see the nurse, also will they change the medicine at short notice, I have so many questions and glad to have found this site to ask others of their experiences.

navigatinglife profile image
navigatinglife in reply to Surjy

Epclusa is one of the top medications for genotype 3a, but there are new ones coming out it seems all the time x I had maviret for genotype 3a, 8 weeks xx

Surjy profile image
Surjy in reply to navigatinglife

Thankyou, did it work for you?

navigatinglife profile image
navigatinglife

DAA stands for direct acting antiviral. I had treatment for genotype 3a, maviret which is a relatively new drug and is one of the DAAs. Just a thought but maybe that's the reason for being offered interferon as type 3 responded better to that than other types. 3a is more resistant to the newer DAA medication. Others will say different as each person has a different story. Lots on here have been cleared of hep c genotype 3. Hepc trust online are excellent and they have a helpline also. Worth checking them out . Great to hear things are moving quickly, treatment on its way! You will be able to ask nurse all you want. Write a list 😂 best wishes 😍 😘

Surjy profile image
Surjy in reply to navigatinglife

Thankyou, will do, just worried about the side effects of interferon, seem so many ☹️

Also is it given as a tablet or injection?

navigatinglife profile image
navigatinglife in reply to Surjy

Try not to stress too much, some people have worse side effects than others, some none at all. Every medication carries side effects, try not to dwell upon that aspect, despite it being hard sometimes as it doesn't change anything apart from making you ill with worry. Side effects are dealt with as and when they occur, each person again is different and what works for one person may not work for another. The best thing is your husband is going to get treatment, I don't know the ins and outs of interferon but your nurse will honestly explain everything to you both :)

Keep busy is my motto, anything to distract from focussing on the virus, so difficult but anything that helps you do it, :) xxxx

Surjy profile image
Surjy in reply to navigatinglife

Thankyou xxx

Kaz1959 profile image
Kaz1959

My husband took interferon and ribaviron but that was back when there was no other treatments ..I would ask for a newer treatment if possible ..he had awful side effects and the success of it was negligible ..I know it's very frightening to have hep C and you've probably been waiting some time for any type of treatment but I honestly believe there are better more successful ways he could be treated ..I'm not in any way medically trained but I've done a lot of research don't be afraid to ask xx

Surjy profile image
Surjy in reply to Kaz1959

Thankyou really helpful, sorry to hear that, hope he got better afterwards. I don’t know if they will change it and give us anything different as I think this is cheaper for the nhs as I’ve read.

Kaz1959 profile image
Kaz1959

No he didn't get better but that wasn't because of the treatment 😟 the interferon is cheaper but it is less successful so in the long run costs far more ..xx

Surjy profile image
Surjy in reply to Kaz1959

Sorry to hear that, will have to ask the nurses when we go, thankyou x

Not2b profile image
Not2b

I resisted interferon due to the side effects. The NHS wouldn’t provide me with the new DAA drugs which are more effective with less side effects due to the huge costs from the pharmaceutical companies, and I wasn’t considered sick enough to qualify. A friend who had genotype 3 told me about a website called fixhepc, check it out. Basically you can buy the new drugs inexpensively yourself as they are manufactured in India and Eygypt more cheaply. I had genotype 2b and am 6 months clear as I bought the drugs from them also. You have a skype or telephone consultation with a doctor who prescribes the relevant medication for you. Any worries or problems you can contact a doctor via email who will answer your questions. There is also a forum which is helpful. I took meds for 12 weeks which cost around 1,200 pounds. I was a slow responder and needed another 4 weeks which was around 400 pounds. Had I been accepted for treatment by the nhs I wouldn’t have been prescribed the extra 4 weeks and I am so glad that I took this route. Anyway have a look at the website and decide for yourself. Personally I would avoid interferon as it’s nowhere near as effective as the new drugs that have milder side effects. Good luck.

Surjy profile image
Surjy in reply to Not2b

Thankyou for advice, will have a look, let you know how we get on.

Sillysausage234 profile image
Sillysausage234 in reply to Not2b

Can I ask what the name of the drugs are,and how the monitoring of bloods works

Not2b profile image
Not2b in reply to Sillysausage234

I took daclastavir and sofosbuvir for genotype 2b and it worked. I was under a consultant at the hospital and asked them to monitor my bloods. Unfortunately I asked the wrong person who was horrified that I was going to take generic medicine that I bought off the internet. So I asked my GP if she would give me the blood forms, to which she reluctantly agreed. I was tested at 4/8 and then 12 weeks. I was slow responding so had another 4 week blood test that showed that the virus had gone. I had another blood test at 6 months and need one in another 6 months. I sent all my results to the doctor at fixhepc who then answered any questions I had and gave me feedback. There are various new DAA’s and the ones I took may not be the ones prescribed to you, depending on your genotype and liver condition. Hope this helps.

-Janell profile image
-Janell in reply to Not2b

I was reading an article on this the other day and also wondered about monitoring labs and progress. I’m glad this worked for you!! It’s soulless how much pharmaceutical companies charge for life changing and saving drugs. All about the money. 💰 Here’s the link to the article if anyone is interested in reading, there are some helpful links for looking into this as well.

healthline.com/health/hepat...

Surjy profile image
Surjy in reply to -Janell

Cannot seem to load the link...

Sillysausage234 profile image
Sillysausage234 in reply to -Janell

Enjoyable read thanks,it does make your blood boil knowing how much profit the pharma companies make.

Not2b profile image
Not2b

Ps if the hospital or your GP refuse to monitor you then you can have your bloods tested through the website, I think there may be a charge for this but don’t know the details. Good luck.

Sillysausage234 profile image
Sillysausage234 in reply to Not2b

Very interesting thanks for sharing

hcvmart profile image
hcvmart

Hello surjy you do not need to worry ..your husband will get well soon..

in case if you need any help you can get in touch or contact us

on hcvmart.com

Surjy profile image
Surjy in reply to hcvmart

Thankyou 😊

hcvmart profile image
hcvmart in reply to Surjy

keep in touch and once you know what medicine you require after your doctor check the test report ..you can take help...lot of people buy medicine from india at lower price

Surjy profile image
Surjy in reply to hcvmart

Will do 👍