Hep C Discussion Forum

Canuck · Guru

RE: Coming to terms with my recent diagnosis

bcfish12 · Member

Hi Gaggles, Well its your decision to make. But if your consultant told you G3 does not respond well to the new medications, he does not know what he is talking about. Your Fibroscan is going to give you a good idea how your liver is doing and determine how long you need to be on your treatment ie 12weeks or 24 weeks. I'm from Canada so I know how hard it is to get a doctor that knows what there talking about. It took my old Doctor 3 years to even talk to me about the Fiberscan, so I had it done and found out I had Cirrhosis. Even with a F4 Fibroscan result our health care would only offer me the old treatments. They even told me they were recommended and have a cure rate of 85% well that's not true its more like 45%-50%. We need to wake up and smell the coffee and see that most Doctors are just puppets to the system. Don't worry the meds Generic or not are proven to work on g3 as high as 98% depending on you situation but I would be looking for a new consultant if I was you.

Tig · Admin

One of the newest treatments is Epclusa. You can search our forum for discussions we're having on the topic. Here's a link to some info: FDA-Epclusa. They have a third drug, Voxlaprevir (NS3/4A) that has also been added in trials with incredible SVR rates. One of the best protocols available and is pan genotypic in action. There is continual research being done and good things are happening fast.

Is it possible to find a doctor that will follow you? It's not a lot to ask them for but I know some don't agree with my thinking. There are avenues opening, so don't rest until you get the treatment you deserve! We'll be your cheering section!

Jaggles · Senior Member

Hi bc fish..yeh I have done some research on other supplies, read Greg Jeffrey's blog on traveling to India ...buyers club etc and I did discuss this with my consultant who did not endorse other options and would not agree to monitor me if I chose that option. I am going to wait until January, as have fibroscan this month...get Xmas over and see consultant in January to discuss scan results. I am ready for a fight to get what I believe I am entitled to. I also intend to go armed with knowledge . i am pleased to hear how well you responded to the drugs and my consultant did say that even newer drugs, are due to be available in very short space of times, maybe few monthas, which g3 responds well to? he told me that unfortunately G3 does not respond well to the newer types available at present but very soon the others coming, will...I guess it all depends on that scan...great to hear positive story, thankS..

bcfish12 · Member

Hi Jaggles,

I am also a 3a victim of Hepc for about 20 years now. I have just finished 24 weeks of Generic Sol/Dac treatment about 2 months ago. The virus was undetected in my blood tests after 4 weeks. I will know in December if I am cured. Your in the UK so you can have your medication delivered to your door easily within a month. There are Pharmaceutical company's in India that are licenced by Gilead to make the medication. Thousands of people have been cured with these medications. Do some research check out Fixhepc and Greg Jefferys. And by the way these medications are tested to the same standards as Gileads medications is tested. Check it out if you haven't already.

Observer · Guru

Welcome Jaggles,

Sorry to meet you under these circumstances but glad to meet you. smile

It is good news that your partner doesnt have it.

I can sure relate about kids worrying.

I can also relate about Drs being incompetent. My long term HCV infection morphed into autoimmune disease, arthritis, chemical sensitivity, food allergies and on and on and on .....before I was diagnosed with HCV (and even after) so that was quite the experience... trying to convince Drs and get some help was a nightmare and I became very cynical about them.

For instance, I developed a horrid skin condition a few years ago, started as a few hives and turned into angry, itchy, weeping, bleeding rash all over my arms, neck, back (I probably had 300 of them). My family dr put me on preds, but I had a terrible reaction to them so had to quit. So she gave me a script for some cream that did nothing..anyhoo, I went to an allergist more useless expensive creams and no diagnosis or explaination and finally after a 3 month wait an autoimmune specialist. Well she told me to soak in a bath with bleach in it 3 x a day. I did once, it burned. Luckily I was eventually able to detox my immune system and after 7 months it went away. (But I had to give up my job, I taught children and I looked too scary)

This forum is a great resource with fantastic people, glad you found it.

lucky you getting a grand child, I only get grand doggies.

Alison

Jaggles · Senior Member

Wow just read your biography....so similar to me....hbv in early 80s...my liver collapsed and I nearlly died. Beat and regular tests show I have antibodies but virus gone.....I am praying this hcv will not re activate the B...love and thanks xx

Jaggles · Senior Member

Such wise and reassuring words...thank you...

Canuck · Guru

Hope, being a fighter, and walking the dogs - I like the sounds of all that. Nice if you have someone over there who has been through this. But it often is (or can be) a dif. experience for everyone, from how you feel, to what drugs you get. Glad you got the ultrasound done and out of the way.

Note: Harvoni is not really for you, if you are a GT3. On another note, I was on oral HRT for many years prior to treatment, during treatment, and still am. No one objected to the HRT, and everything I took (or wished to continue to take), including some minor dietary supplements, were carefully scruitinized by them aforehand. For instance, some various antibiotics I needed to take to take during treatment were always OK'd by them first.

You will figure out how to reassure your family (them worried you will die!), take your time figuring everything out, you are your number one priority for the moment, not them first. It is often all too much, too much info, too much fear and emotions at first, as you get further along, you yourself will start feeling more reassured, and by then they will too. As you learn more, as you go along, you will be armed and in a position to educate them out of their own fears. Sheesh, we can't do everything!! Tig made a good suggestion the other day to someone (like all his suggestions are!), obtain some basic informational pamphlets (or articles) for them to read and refer to, for their own reassurance that you will indeed get virus-free and be OK. Look for something appropriate for them to read, if they are not reassured verbally.

Take care of number one, like you are. smile C.

Jaggles · Senior Member

Thanks Cinnamon Girl....already feeling the benefits of finding you all So kind of you all to talk to a stranger in need. Are you by any chance a Neil Young fan? Love that song...and many more I intend to do some more research on my current results next week so I can share on here...you are all so knowledgeable and I am so greatful. I still don't understand why the drugs are soooo expensive...do they contain diamonds? Speak soon...thanks again you are very kind xxxx

Jaggles · Senior Member

Thanks Tig, I'm going to get the stats and will post them,....yes, doctors don't seem to know much tbh...I will be contacting the trust today, if not Monday. this is a great forum...so thankful my friend recommended it. Odd, but since diagnosis I have found out 4 old friends from that era, all got it...wonder if we all caught it same time? The friend has beaten it and offered her support and she lives near by too so that's good. My family are all terfified I'm going to die so it's hard to manage their emotions too. My daughters father in law died recently and aside from liver cancer, he had hep c....he chose to carry on drinking ...it killed him. I like to drin wine with my dinner but since diagnosis I'm just happy drinking lime and soda lol....not taking any risks and have upped purple food intake and lowered all fat. I have nursed a failing liver before so know a bit about how to treat my liver with great respect lol.....can't thank you enough Gotta walk my dogs now xx

Jaggles · Senior Member

Thanks Pablo...I will contact them today. They said I had caught it early...but I can't tell how long I've had it. The consultant seems to think I caught it at the same time I got the B....just didn't show symptoms until now. Thanks again for your positive words....so much to take in and you all seem so knowledgable it's great....I try to talk to my close friends and family about it and it is so complex. They don't understand how one day I'm good and another I can't get out of bed.....you all have helped......really...I don't feel such a freak and alone....

Jaggles · Senior Member

Hi Canuck ...wow thanks....you are so clued up. No I have no other lab stats yet, but I'm going to ask for them. I had ultrasound scan which showed liver, spleen and kidneys all have normal structure but the other stuff I need to request. cant believe how hard its been to fight to get some care and treatment....nurses who took blood had a shot attitude too...comments like, '8 bottles' WHO HAS THAT?' .... i complained to practice manager and have got QCC ( quality care commission ) involved because I am still shocked at how my case came about. It started in July with a swollen hand and weird sensations in my arm. was told it was a bite, then another doc told me it was cellulitis and gave me ab ...then I paid for a private rheumatologist app to ascertain if I could fly or not...he said yes...but suggested my hand and liver history need to be revisited. I can't believe that at the doctors...they had no notes on their system that I had serum hep b in the early 80s.....had both. My kids at that surgery and at the time they covered all my files in 'high risk' yellow stickers....so how come the new system didn't have that important information? I've also had another doctor try and force me to take Cetalopran anti depressants...for two years..i of course said no I'm not depressed, I explained about joint pain and chronic fatigue and he said I was menopause...scary thing is I've been applying HRT Patches for the past 8 months...did feel a little better but only in that I didn't sweat so much lol.....I fear they may have made liver worse. Of course, when I was in pain I took painkillers, occasionally. Oh well....thanks again.....yes I have given me some fire in my belly Gonna fight this beast will all I got xxx

Jaggles · Senior Member

Thank you so much for your positive words...gives me hope that I too can get back to my normal routine and most importantly beat this. I have considered selling my home to pay for the drugs myself. Angry that I have paid into NHS all my life and now, I need something back but have to play a waiting game. My cosultant would not agree to me using buyers club nor condone Harvoni so it seems Gilead has the monopoly here. I had no idea of the politics behind it all until I contacted hep c Alliance who were ver supportive. when, not if...I get better I am going to raise awareness of this and fund raise through my work ( youth work coordinator) it's shocking...thank goodness I have found you guys...can't thank you enough for making me smile and giving me hope xx

Tig · Admin

Oh yeah, if we get started on grandkids, we'll go way off topic!! I've got a 2 year old grand daughter and a grandson due any time now. Very exciting time! We have lots to look forward to and a lot to be thankful for. Confidence is everything, with some credit to Big Pharma! wink

#NOHEP2030

Phoenix17 · Senior Member

Welcome Jaggles! I too knew something was wrong before being diagnosed. Just chalked it up to getting older. Who knew??? We have to be our own advocate, especially when it comes to health care. Be proactive with it! My hep doc said that I wouldn't be approved for the newer drug Epclusa. It had only been out for a month.( I am in the U.S). I was ready to fight tooth and nail to get the drugs I wanted. I was really mad to think that they could withhold treatment when it is necessary. I had my game face on and was ready to go to battle. It turns out the doc was wrong. I was approved, and am on week 8 of a 12 week treatment. You will get there too!

Congratulations on your grandchild! Very exciting! You have a lot to look forward to. Take this time to celebrate all the good things that are coming up. biggrin Before you know it you will be on treatment and feeling better.

I have been working at my job through the fatigue, brain fog, joint pain, etc. Some days are just plain hard. I understand that. Be kind to yourself!!!

Keep us posted on how things are going for you. smile

Canuck · Guru

Hi Jaggles from me too.

I am sorry you have been plunged into having to deal with HCV, but you do sound like you are doing all the right things, right from asking repeatedly ... how are my liver enzymes, to not taking that flight, and through this time, preparing and adjusting yourself to getting rid of it. You are doing everything you should do, and can do, all very good on your part.

There are quite a few of us 3's on this site, getting cured left, right and centre - you will be too. It will happen.

You sound much like me, contracting B and C (at the same time) at a very young age, with our bodies (luckily) being able to beat off and spontaneously resolve the B on our own, with no intervention required. Just too bad we we not lucky enough to have been able to know we had (also) contracted the C, and not lucky enough to have been able to resolve that one on our own as well! You now have the opportunity to rid yourself of this hitchhiking C virus and you will.

3's (and other GT's) are now getting pan Epclusa more easily in the USA (prescriptions are being rolled out there). Things are still backward-dragging for Canadians here (we have at least one here who received Epclusa by script in Canada - RubyRed) - the first I believe! The UK, like Canada (of the Commonwealth countries) also seems not yet stellar in the HCV user-friendly dept!

I am glad you have your fibroscan coming - that assessment needs to be done regardless, and CinnamonGirl is quite correct, your fibroscan Fscore can have a bearing on where you are in the que, the same as some of your other labs/tests/assessments/symptoms can.

Look at the possible delays as "breathing room"(in your favour), you can use time to help plan your best prepared attack. Much can be started/accomplished while waiting - concentrate on maintaining your good health first and foremost, and (even just through your family doc if you must) - get your hep a/b immunity titres tested - to know whether you should be immunized (and/or re-immunized) for a and b, in a perfect world your husband too would have the same a/b immunity titres tested, and be immunized for a/b as well if warranted. As well, make sure all in your household are up to immunized-snuff for protection from influenza (possibly pneumococcal too). Good household immunity helps to protect you. Fibroscan would also be high on my list to tick off, but you are already prepared for that. As well, ask about abd. ultrasound. Perhaps utilizing your family doc?, as well as waiting for your January hep doc? - perhaps your family doc will let you clear the way with your immunization assessments and immunizations (as may be required), and, with perhaps facilitating an abd, ultrasound sooner than waiting for your Jan hep doc? Possible?

Glad your partner tested neg for C and is supportive. I know what you mean, feeling lucky with a supportive partner. I also hear you about fear, anger, disappointment, frustration - ditto, I also felt "stupid" as I figured I should have been able to diagnose myself!! Kicking ourselves, regret, anger and fear and the other feelings are inevitable, we are merely human beings!, but you will deal with it all and find a place for everything. You are quite right about the positive re-focusing, the work, the wedding, the daughters, the baby, they are all good added focuses and busy distractions for inner turmoil. The other feelings, the negatives, have some value too, they only help to propel you harder to the goal.

Keep pulling, remain resolved and steadfast, you will get there.

Do you know any of your other lab work? smile C.

Pablito · Senior Member

Hi Jayne

Welcome to the forum. I also live in the UK and have just completed treatment. It was my second treatment and, believe me, I really had to push hard to get it because, as you mention, the NHS is essentially rationing treatment now and only giving it to those who have advanced fibrosis or cirrhosis, which I don't have.

Would I be right in assuming that you would have contracted HCV in and around the time you got HBV? Back then they didn't know about HCV. If you have had HCV for 34 years you might be more of a priority. The fibroscan will tell you about any fibrosis. For your sake I hope there is little and your healthy lifestyle will have helped in this regard, but if you do have significant fibrosis the silver lining to that cloud would be that it would bump you up the list.

Contact the Hep C Trust as Tig recommends - they are very useful. Ask them about ways of dealing with the NHS and about non-NHS options. The forum rules prevent us from recommending treatments but the Hep C Trust should be able to give you the options, as will reading widely and going through all the sections on this forum.

The bottom line is that you will find a way to get treatment and you will get cured because the success rates for the new DAAs are very high.

Pablo

Tig · Admin

Hi Jayne,

So glad you found our forum and know you'll gain both knowledge and support from all the good folks here. We understand the journey well and hope we can make yours easier. To begin with, it's so important and valuable to gain as much knowledge as possible. You're probably not surprised when I say, many in the health profession are less educated on HCV than they should be. There are so many changes in treatment, it's hard for people to stay current. Hopefully between all of us, you won't be one of them! You can start by not worrying unnecessarily. Try anyway!

You mentioned you are a genotype 3. Do you have any blood tests you can share? If you have the liver tests, such as the AST and ALT available, can you share them? Any information, history, etc., is helpful to us when replying.

There is so much info available here, not including the personal experiences of our members. If you have any questions, don't hesitate to ask. As time goes forward, the conversation will help you. I'm going to provide a link to some helpful information related to the UK from the Hep C Trust.

Hep C Trust

Cinnamon Girl · Guru

Hi Jayne, welcome to the group!

You`ve come to the right place to talk to people who understand, I`m glad you found us! And there`s no need to apologise at all, anyone in your situation would be feeling angry and frustrated, and don`t please don`t blame yourself for any of this.

I live in the UK as well and I know that treatment with the new (expensive) DAA drugs is being rationed by the NHS at the moment but even so, to be told you can`t be treated for possibly another 2 years is shocking. When you`ve had your fibroscan done you`ll have a much better idea of what condition your liver is in, and that could have a bearing on how soon you`ll qualify for treatment.

Good news anyway that your partner isn`t infected, it`s actually not that easy to catch Hep C from somone you`re in a long term relationship with. The virus can only be transmitted by `blood to blood` contact, so as long as you take routine precautions like not sharing things like toothbrushes, razors or nail clippers, which may carry traces of blood, the chances are extremely low of passing it on.

Please keep in touch here, other people will be along to greet you soon as well... wishing you all the best of luck.

Ps, - Yes, you`re posting in exactly the right place... smile

Jaggles · Senior Member

hi all....I'm 52, had hep B at 18 years old and beat it. Turned my life around for the better and been straight 30 years...good job working for a charity, loving life ...and now this Hep c has suddenly appeared. I was well and healthy 3 months ago and was about to embark plane for a 10 day all inclusive holiday to Fuerteventura but felt strangely ill and fatigued, like nothing before...I decided not to fly and came home...had 3 months misdiagnosis and even though for the past 2 years I have been asking if my liver ok. They told me liver enzymes elevated but nothing serious. anyway, I'm now coming to terms...it's taken 3 months battling with NHS and finally got to see a liver consultant. He can't treat me yet but says he will, but it could take couple of years. I have g 3 and now waiting for fibroscan this month. I don't see him again until January. I'm having some good days and some real **** days. Been off work 3 months and now will have to go back as I can't afford not to. Not sure how I will cope but will try. Luckily, my soul mate never caught it from me, we been together 15 years. He is so supportive. I'm lucky. I'm scared, I'm frustrated, I'm in a que and my case will be judged by a panel before I am allowed expensive treatment. Anyone else in U.K. Having similar experience? I have a grandchild on the way and my other daughter is getting married so have so much to focus on but this sucks...hard to keep it together at times. I get so angry with myself. Sorry, rant over, I only wanted to say hi and meet some people who understand.

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