Be honest now...

[cityman62]

Just an invitation for all of us who have completed or are on,one of the new hep c drug regimes to share our thoughts on this treatment.Why?To inform and educate/to help people wondering Whether to undertake this course-particulary people who may have gone through the interferon/riba regime.To swap our thoughts and feelings,and also to provide valuable feedback for the BLT+NHS. I will repost later with my thoughts,please be as honest as you can,I'm thinking a plus+minus balance sheet would be good,cheers to all.

[Tatjana]

Ok, I will play the game BUT there are 2 conditions.

(1). We will wait for everyone's response

(2). Rumpelstiltskin goes first

If you agree to the above, I will also promise to include the poem I wrote on a not wonderful day. Yes, Andy, I too am a poet lol! Do you agree? XX

[cityman62 in reply to Tatjana]

I'm up for that,knowledge is power,and blue+green makes brown(I think),I'll be back..... ;-))

[Tatjana in reply to cityman62]

I made a promise Cityman62, now I am keeping it - This was my poem I wrote one day before last treatment:

I think it is plain for me to see,

that my eradication is getting back at me

It spoiled my Christmas festivity

And this morning I felt like A and E

But I am still strong-willed,

Always hope to be!

They told me it had died after two week's

extermination,

So why am I feeling such desperation?

Only another 2 days more I have to endure

Before I know that I have the cure.

But now I am wondering

Whether withdrawal symptoms

Will be my fate,

Or will I be able to celebrate?

I will give symptoms or side effects later. xx

[cityman62 in reply to Tatjana]

Brilliant-on all counts Tat.Withdrawal symptoms?-I hadn't thought of that.... xx

[Hidden in reply to Tatjana]

By the way I love your poem!!!!❣🇨🇦

[Hidden in reply to Tatjana]

Hi Tajana, I hope I find you well, I've been really sick in the hospital. I just got a port put in and my fibroscan reads 23.8. Can you tell me if the Canadian score charts the same way as the British one?? I was told I only have a few cells left. The technician scared the hell out of me and in Canada they're not suppose to tell you anything. We have to see our hepatologist to find anything out are test results. I am feeling so exhausted, nauseated and experiencing severe ulcerated skin lesions including my mouth. That's why they had to start giving me antibiotics through accesses my port as well as other Meds. I'm so irritable and as my son said he has never seen that before. He said "mom you had all the patience in our family what's happening?" I don't really know, but I am also very emotional. I'm so confused. If anybody out there that is experiencing this with a decompensated liver can you let me know!!!! Thanks❣🇨🇦

[Tatjana in reply to Hidden]

Hi, I am so sorry to hear this. I cannot tell you about readings but I am hoping Bolly is reading this cause she is amazing and so knowledgeable.

Your behaviour is SO understandable, Wish you better quickly. XX

[Hidden in reply to Tatjana]

Thanks love, but Bolly as I am sure you are aware, got off on the wrong foot. I tried to retract some of words that bothered her so much and I hope that was enough. I don't know what really happened but I know I'm not that type of person to say things like that. Anyways I have to see another specialist today so I'll speak to you another time. Be well❣🇨🇦

[Tatjana in reply to Hidden]

Hi Enjoylife, I can't believe it, I am so stressed but still try to be helpful and for the past two days (hubby's op We'd) whenever I have tried to be helpful, it ain't worked! I am sorry but I did not know about Bolly and 'wrong foot.' She has been so amazingly helpful to me. Sorry and sorry to Bolly I did not mean to start anything off.

[Hidden in reply to Tatjana]

You didn't start up anything, love. I was commenting on another's dilemma and Bolly emailed me. The way she started off was with a rude statement. She also agreed with me after I emailed her back, tha she comes across as a pompous and arrogant person. Although she will not change her attitude. That's fine with me because I don't need to affiliate with her. She's not the only one who's knowledgable. I hope your hubby and you are doing better. I have sometimes a similar situation with my son. They just don't understand how irritable you can get when taking Meds. Keep your head up high and believe in the fact it will change in time❣🇨🇦

[cityman62]

Here goes! Completed standard 90 day course of harvoni+1000mg of riba daily.Am I cured?no idea yet.Background-hep c for 30+years-diagnosed 2+ years ago.A regular adult drinking habit.So,the good things/improvements observed on treatment.

1:nocturnal itching-feet/scalp/lower limbs/arms=80% improvement.

2:uncontrollable muscle cramping v.painful=90% improvement.

3:Watery flows of blood from the tiniest (arm) scab/lack of clotting=100% improvement.

4:Fingernails tearing deeply+ vertically regularly=100% improvement.

The bad bits-

1:insomnia (pre-existing),magnified hugely,also unpleasant hallucinations in light sleep pattern.

2:Feeling cold+tetchy-insomnia?.

3:Slightly more confusion/memory issues.

4:A general feeling of demotivation.

5:A slow (but not dramatic) slide towards anaemia.

Look away now-stools,no change/sperm production increased.

Apologies-t.m.i there;-).My thoughts/impressions-please do share yours.They are valuable.

[retwos]

I was on havoni n riba for 3 months about 15 mths ago I had no side effects that I know of , keepers to the regime of taking my meds at the right time , I had bloods taken regular at Q E and after 4 weeks my hcv was undetected but keep on the med course n when I finished and had my last bloods done it was still undetectable which was a great result , I didn't notice any difference with my cramps , dry skin , insomnia, all still the same as before .to be honest some were worse but that was done to my liver damage.i had been diagnosed hcv in 2001 an All so had alpha 1 amertrypcin problem , this didn't help , I think a good starting point is where your heads at when put on meds to be honest, believe me it makes a difference to how you can cope , the one thing on the + side was I felt cleaner inside no more horrid virus anymore , hope this helps .good luck to all that are given the new treatments

[cityman62 in reply to retwos]

Thanks for the input Retwos,and congrats on being clean-lomg may it continue,as you can see from my post,there were pros and cons,but nothing to put others off from going for this treatment.I'm glad to finish tbh,and await my bloods with bated breath.If its gone that'll be brilliant,if not,at least I can feel at peace with myself that I've tried.Best to you.

[retwos in reply to cityman62]

I think if it's been undetected in your bloods during treatment the signs look good all the best mate , hope all goes your way ))

[rickyrocket1]

hi still 8 days to go so dont know whats what yet wasnt clear at 8 weeks so hopefully in 8 days then ill let you know ricky

[cityman62 in reply to rickyrocket1]

Nice one,I'll keep everything crossed for you.look forward to hearing from you Ricky.

[Tatjana in reply to rickyrocket1]

Look forward to hearing from you Rickyrocket. xx

[snortlethetortle]

I've just signed up so - Hello All.

This type of info would be very helpful to people like me. I was diagnosed with hep c/3 over 3 years ago and have yet to receive any treatment as advice is to 'wait for the new treatment'. The usual Interferon/Riba treatment I'm told, is a long ferocious and ravaging experience and is not a good idea for someone like me who experienced a period of depression some years ago. (Though it seems to me that the waiting is likely to cause far more anxiety and depression than would the treatment).

The waiting really is becoming tedious in the extreme. Each time I visit I'm told that treatment will begin on my next visit but over the last 3 years they just take bloods and pack me off again. I've had the scans etc and am told that I have no sclerosis and that my liver is quite healthy.

I'm wondering if I'm just being used as a guinea pig as I signed up to help with research and have never objected to students being present at my consultations.

Any advise would be most appreciated. Thanks.

[cityman62 in reply to snortlethetortle]

Welcome-what a cracking user name!I can understand your frustration in waiting,waiting.I think current policy is to 'roll it down'in order of urgency-people due for a transplant,cirrhosis, fibrosis and so on down.Which you can see a logic in I guess.PersonallyI support the counter -argument,Everyone who would benefit should be prescribed it now-to avoid further deterioration in their condition.Health areas differ,as do UK regions. England dragged their heels,Wales and Scotland did better.From your point of view,from what you say time is on your side,and you did the right thing turning down the older regime.Your turn will come round,in the interim,I'd just keep hassling/asking for dates etc.If you are given a promised time scale-get it in writing....Good luck.

[dizzime]

Hi had harvoni and ribivarin last April-12 week course - Hep C GT 3. no major problems. Had to drop the dose of Ribavirin as getting slightly anaemic. Also have insomnia but that is a long going problem which I still have. Maybe a bit more tired but that could be due to all the meds. On the whole sailed through it and now cured. Good luck to all who have managed to get the treatment and fingers crossed to all who are waiting that they will soon get it. Stay positive and keep strong x

[snortlethetortle]

Maybe I'm just getting paranoid! Is it common for treatment to be such a long wait?

I feel a bit of a wuss after reading some of your posts.

Bless you all.

[art4949]

Oh, where have I been? ...Lets think...yes, after waiting since June 2015, I am finally having treatment...which I just began 5 days ago. I went for my ultrasound scan, already had my Fibroscan in April (11.5) and additional blood tests to check viral load.

My Harvoni was delivered last week to my home ...no ribavirin, I refused due to side effects, research does not show it increases SVR (clear the HCV) significantly and drop out rate due to side effects puts it on nearly equal footing for my genotype 1b. [this is not necessarily so for other genotypes] .and I have other pre-conditions which do not favour taking ribavirin (lichen sclerosis, a condition believed to be connected to HCV) ...also, as a 66 year old, who has lived with this disease for over half my life, there is a balance to be found in seeking treatment.

Snortlethetortle, if you do not have cirrhosis and are not borderline cirrhotic according to your last Fibroscan/biopsy you will still be waiting for treatment most likely. Read the NICE report regarding treatment for HCV - NHS in UK. Technically, they should be treating you as you have HCV...but, it depends on how long the list is where you go for your check ups with your liver specialist nurse. The NHS staff you see should be clearer about treatment dates for each patient on their lists...Psychologically, it is damning to be made to wait with an infectious, potentially life threatening disease for which there is now a cure [for many genotypes].

We all could have been treated by now(genotypes 1 & 4 and some 3) with a year behind us, had Gilead not pulled out of their successful trials with Bristol-Myers back in 2012 to begin developing their own drug instead of partnering with BM like in the trials. Make your own conclusions.

idsa.confex.com/idsa/2013/w...

And further studies reducing time to 12 weeks still showed 98% cure rates.

So, Gilead took another year to develop their own equivalent to Bristol-Myers' Daclatasvir (GS-7977) which is Ledaspvir used with Sofosbuvir, both are in Gilead's combination pill, HARVONI...which has had FDA and European commission approval since October 2014. Bristol Myers was unable to match Gileads pace developing Gileads' equal to Sofosbuvir.

Gilead made the right call from a financial point of view but, morally, it should have partnered with BM(they were willing) and started treating the thousands of very sick HCV patients everywhere after final approval. This is just my personal point of view.

I liken waiting for treatment to being trapped a the bottom of a very deep hole and there is someone at the top whose job it is to hold onto a rope. This rope happens to be long enough to reach you. The rope holder is surrounded by a strong group of people. Together they can pull you out of the hole and save you.

You keep calling out, louder and louder, but, still, there is no response. The person on top still has the rope in their hands, but they don't hear you at first, and even when they do, they still do not know what you are saying...you see, they are distracted by hunger...and someone has clearly told them dinner is ready..now! They will do the right thing once they imagine themselves in your place. . Then that person will drop the rope and they will all pull you to safety. The question is when...before or after they eat? Hopefully, you are strong enough to hang in there and hang on to the rope when it is dropped and you are pulled up to safety. Then everyone gets a piece of pie.

So far, on the Harvoni, I have not had any symptoms! Fantastic... I go in on Feb 4 to have my blood taken to check my viral load. I will keep you all posted in a less long winded post.

[cityman62 in reply to art4949]

Go for it Art!The pricing for this drug by Gilead is indefensible. They bought a small company specifically for this drug,so they can't really claim to have done the years of research/development etc.They pretty much bought it 'off the shelf'.

[dizzime in reply to art4949]

Fingers and toes crossed for you art4949 for the 4th Feb. my first blood test after stating the treatment showed an amazing drop in the viral load from 58799749 to 93 !!!!!!! then the next next was 0. I really hope you are as successful with your blood tests. Stay positve x

[Penyfai]

Hi, I live in Wales and I have just started treated for hepc with cirrhosis, fibroscan result 16.8. I think I have had hep c for around 40 years, found out 2 years ago. So for the other 38 years I drank regularly but not heavily. I am 62 now and if I hadn't been diagnosed following blood tests I would be none the wiser.

On day 1 of treatment, I have felt a bit weird, slight headache and muzziness. Nothing that stops me functioning and I hope my body will adjust and get used to the medication. It's only 3 months of treatment so worth it to get better.

I would be interested to hear other people's experiences and I will post updates.

[snortlethetortle]

I found your post v informative and interesting Art4949 - mine is genotype c and I seem to have contracted it in the late 80s. I am now 65 y.o.

I've buried my head in the sand somewhat taking the attitude that I know little or nothing regarding medical matters and that it would be better if I put my trust in the pro's.

I envy you your short wait for treatment Art4949. I am based in Sheffield and the waiting room never seems to have more than 2 or 3 patients in it though I know that's no real indication of hcv sufferers awaiting treatment in my region.

Last week I was given an appointment for mid July 2016 though I was told that my treatment was likely to begin 'sometime in 2017'. Meanwhile I can only imagine what damage this virus might be doing to me.

I followed your link though found much of it difficult to understand but the figures for complete cure are encouraging if that is, they apply to my genotype.

Thanks and the very best of luck for February.

[art4949 in reply to snortlethetortle]

hepctrust.org.uk/news/mar-2...

this is a very informative link.

'

snortlethetortle, you haven't mentioned what your Fibroscan score was...as a patient with HCV, you should be seeing a liver specialist/nurse who monitors you through a yearly check up with liver function blood tests and a fibroscan/ultrascan to keep an eye on the disease's progression. Also, did they tell you why you have to wait so long for treatment when you want to be treated asap. It cost the NHS more to pay for a liver transplant or care for you with end stage liver disease...they can only guess how HCV will progress with each person, no matter how well you are now.

Are you genotype 1a/b or 3?

Using the link above, you can contact the Hepatitis C Trust for information regarding information about treatment.

Hope this helps

My treatment will last 84 days . If my viral load remain undetectable 3 months after I take my last tablet on April 14, I will be considered 'cured'.

Thanks...

[snortlethetortle in reply to art4949]

I didn't see your last post art4949 or would have answered straight away - soz.

I had a f/scan but can't remember the score but I know it wasn't serious.

As I said, I really have tried to put my hep out of my mind - silly I know but I'm trying to make up lost ground now and thanks to you and others I am making some progress.

I get checked out every six months or so - since 2013 - which is why I wondered if they are deliberately putting off treating me so that they can watch how the virus progresses.

I have hep c gen 3 which I'm told is one of the dodgier types to have.

I will check out the link you sent now.

Many many thanks for your help.

[dizzime in reply to snortlethetortle]

Hi there - I also was Hep C Geno 3 and got the treatment last April 2015 and I am now cured. Unfortunately I had to have a transplant first (2013) as my old liver gave up, the Hep C then went into my new liver very quickly. I dont know how long I had the Hep C before I found out that I had it in 2011. As to how long you have to wait for the treatment I don't know but I think it depends on how high high your fibro scan is. Fortunately I think the treatment is being rolled out a lot quicker now, especially now the trials for the Harvoni have finished and is showing very good results. I hope you do get the treatment very soon, keep asking your consultant, nurses etc, ask what your fibro scan is and mither, mither, mither don't let them brush you aside. good luck, keep strong and stay positive x

[snortlethetortle in reply to art4949]

Can't believe the cost of hcv drugs. Maybe I really am paranoid and they are only hoping to treat me with the new less ravaging drugs.

I'll continue to read up so thanks again.

[snortlethetortle]

Thanks cityman62 - the username came from a story my daughter wrote many moons ago so can't take any credit there - he was a jolly chap (the tortle) who snortled when he laughed!!

[snortlethetortle]

Hi dizzime Thanks for the kind sentiments and advise. I'm so glad that you are cured you have clearly gone through a lot.

I'm going to see about getting details re my scans etc - I really should have paid more attention.

I expect they think that if I'm not that interested why should they be - ?

Anyway thanks again.

[Alvess123]

i have written already about how the interferon treatment has destroyed my life, my advice would be to think very carefully about having any treatment. There are MANY people in the same situation as me.