I have my 28 days of harvoni ready to go.With slight trepidation,I also have my 1000mg x28 of ribarvarin to enjoy.Tempted to bin them to be honest-but no,for once in my life I will do exactly as I'm told.Saw my hep c nurse today,tried to blag another course of harvoni-told her I sold mine on eBay last night!She wasn't having any of it....lovely,supportive girl,I totally take my hat off to peeps who dedicate themselves to an 'unsexy' field like this,Cue round of applause from us all I think.I also take off my hat to all up here praying and almost dying for a transplant,keep your faith,you will get there....I'm lucky,there's at least light at the end of the tunnel for me.,Wherever you're at,no matter how crap your daily life is made by whatever horrible liver disorder is dragging your soul through the mud,remember,someone's worse off than you are-for sure.Grit your teeth,gird your loins,and above all,keep your sense of humour intact,put 2 fingers up at your ailment,and above all,profusely thank your lover/partner/children/parents for putting up with your whinging,sobbing,black moods etc-they also,are victims too...Love,peace and hope to all.
Here goes.: I have my 28 days of harvoni... - British Liver Trust
Here goes.
Hi cityman
I started my Harvoni and Ribavirin 16 days ago. That 'thanks' bit I can relate to. What you have written is so true.
Do NOT bin
Do NOT give in
We WILL win!
I will only find out on 11th November if my Viral Load has dropped.
I am not well to write more, you will understand.
Please keep in touch and thanks. xx
Nice one gel,chin up,thinking of you and all who struggle along,its ONLY a disease-all things pass,all things change.
X
I've had the hcv treatment n to be honest I flew through it and got the result I had prayed for undetected . That was last sept since then I have been assessed n in hospital with encopalathy I think that's how it pronounced! Then to my amazement I got the call for my new liver but the first 4 calls were red herrings but on the 5 th I had my operation, I'm nearly 9 weeks into my recovery n although I'm so so grateful the side effects of the meds is ripping me apart , I tell clinic every time I go n get false promises, it's a long hard road even being so called well. I hope one day soon to benefit from my new lease of life The sooner the better , keep on keeping on
So well done retwos! Now, if you can go through all that, surely us lot on the HCV Harvoni and 'Riba Rage' treatment can get through it - can't we cityman62? x
I wish you all the best. Keep in touch. xx
The harvoni treatment is brilliant ! Worked liked gangbusters for me, and I was thrilled to death. No side effects whatsoever. I came off the riva as it was messing with my tummy, but as a genome type 1 this medication worked wonderfully.
Good luck with it! I like to joke around a lot also..I think it keeps a wall up, and protects me from bad things or disappointment.
It's having wonderful results.
And it meant that two weeks ago, when I got a liver transplant ...my new liver will not get sick! So yay!
I'm still at addenbrookes on the transplant ward, but am so glad my liver is not trying to fight Hep C also.
Cheering you on!
Kimberly
Kimberley,
Did you have Cirrhosis when you went on the treatment of Harvoni? Was that the only drug they put you on? How many weeks treatment did you have? I am now being told that because I have Cirrhosis that I have to take Harvoni AND Ribavarin. I am extremely concerned about taking the Ribavarin as I have a rare genetic condition and the Hep C has attacked my Lungs so I am on Oxygen 24/7.
I am usually extremely intolerant to medications so I really don't see the point of starting me on a drug which is so highly likely to call me drastic problems. I now see that Harvoni can cause the blood pressure to rise considerably. It all seems of much concern in my current condition.
Any information would be extremely helpful.
Thank you.
Keep Smiling or in my case Keep Twinkling
Hugs and Love to you
from Twinkling Star Xxxx
I am sorry now that I put on about my blood pressure Twinkling Star. I am not Kimberley but I will answer for me, if it helps and I know she will answer when she is able. I think she is amazing!
I have Cirrhosis. I also had Primary L C because HCV. As you know I am on 12 weeks Harvoni and Ribavirin. I am also very intolerant to medicines.
I take each day at a time. Some days are ok and some are not and yes my blood pressure is high. Hospital have asked me to take it every two days and I have been on BP tablets since 28th October.
The hospital must know that taking Harvoni and Ribavirin and being on oxygen is safe otherwise they would not have not prescribed them for you. I do know in my case when I had a query, I contacted my special nurse or pharmacist (only twice) to check on for instance having the Flu Jab and Calcichew and also an Osteoporosis injection. They had to check and the answer was almost immediate. Flu Jab ok, Calcichew - don't take, Osteoporosis injection - take after treatment.
Do as you preach:
Keep smiling and Twinkling.
Hugs to you from
Tatjana
Great answer, and well informed, sweetness!
Go youuuuuu, lol
As for me, I have super low blood pressure, so yeah, it did not raise mine, or not noticeably....in fact, in here in hospital, my pressure might be 77 over 49 or something insane like that...they go crazy..they think I'm close to dead...giggle. I just laugh at them and get out of bed and walk to the loo. If drives them mad...ha ha ha.
I was in hospital for a week while on the harvoni for something completely unrelated..my blood pressure, being taken many times a day was still lowwwwwww Very. So,I guess, what I would say is it does not effect everyone that way?
This sounds nuts, but I was told there was little to no side effects..and I had none. Period. At all..only the riva make my tummy a bit yuck, but the minute I mentioned that, they stopped it, said it was not necc. For me to have.
Hope this helps.
Hugs you,
xxxxxxx
Kimberly
Hi there star bright, star light!
Yes, I had cirhossis. What they may not have told you is that the Hep C will continue to destroy your liver, and then you'll have to have a transplant, no questions asked.
Now, I only took the harvoni. They start you off on both, but the Riva made my tummy feel a bit yuck. No worries they said, stop taking it. They do that for many of us. I took the treatment, the harvoni for 12 weeks, and Hep C is no longer showing in my system. It stopped after about 4 weeks. I personally was too far gone to save my poor liver, but, it means my new liver won't get it. And they believe it allowed the new graph or organ to go in easier, because my body is not trying to fight the new organ and the Hep C at the same time. Does that make sense?
I had NO side effects whatsoever form the Harvoni, and I do mean none. I think my pal on here Scotty was the same way, you know?
It truly is a miracle drug. A lot has been said about it, but for me, it was easy Peary. Take it, go about my day. It's like a big peach vitamin.
I know this, my specialists are saying within the year the Harvoni will be void as now that they have broken the puzzle, new drugs are coming..ones that will kill the Hep C or render it too nothing, and that's for all blood genome types.
Tell yr specialists if you don't want the riva. I don't know where you are? But I'm at Addenbrookes (Cambridge University) in England. If your a patient here, stopping the riva is not an issue. Nurse specialist Tracey (also known as the golden twig of magical fairy godmothers) was my person in clinic who specializes in hep c and the liver.
She's been to visit me a few times since I've been in hospital, recovering from transplant.
Where are you located, if I may ask?
The drug is a magical miracle cure..of that, I am sure. I understand your concerns and like I said, J did not need the riva, nor did many others, so tell them that..they may still want you to start with it, but, if they are adamant, mention other folks and their results.
I hope this info helps? I'm not a doctor, I can only say what is working, or not for me.
I can tell you this...your cirrhosis will only get worse if that Hep C goes unchecked...I had Hep C for 20 years, and it seemed to do nothing. I got my liver enzymes checked and all was well...then 13 months later I put on all this weight, it was crazy..and it turned out to be ascites...one of the decompensated 4. Then it was too late. No treatments for me..just watch and wait. I got sicker and sicker. 3.5 years later I was getting drains every 10 days, felt sick..I could tell I was actually dying..I can't explain that....but it was the hep c and the cirhossis that was doing it. I had basically stopped eating..all that, lived off soup and pain killers.
Today I'm 22 post transplant....and slowly but surly, I am getting better. I just took a lap around the hospital ward at 5 am and there was no pain..zero. Now yes, as the day wears in, there will be some..that's normal and ok...but imagine, after 3.5 years, I took a quick brisk walk and I had no pain...
If that's not a wee bit of moonlight magic, then nothing is! And that's thanks to the Harvoni and a lovely new liver, a gift from the gods, the universe and Mother Earth....all tangled into one.
Smiles at you.
Be well, be hearty and I'm cheering you on, from over here!
xxxxxx
Kimberly
Kimberley you are amazing darling. xx
Here's a little secret, in case you forgot..so are you sweet girl
Xxxxxxxxxxxxxxxx
Kimberly
Good news in all senses!Keep keeping on,best of luck.Early days with the treatment here-at least the ribavarin hasn't made me kill my partner yet-though I felt I should gently point out to her that if I did,I would get off on medical grounds... 
Awesome sauce ! YAY YOU!
I got to stop the riva..made the tummy feel yuck. Shrugs, and no side effects from the Harvoni. Thank goodness!
Thinking a bundle of good thoughts for you!
Kimberly
cityman62
Remember I said I would get my results next Wednesday 11th Nov for Harvoni and Ribavirin (like you are on) ? Today Friday 6th I got a phone call from my Hep C Specialist giving me the results of my first two weekly blood test. Her words were MY VIRAL LOAD IS UNDETECTABLE. I don't think this means I have cleared it entirely yet. My appointment is still next Wednesday and I will ask questions then.
I just keep thinking - 'this is only 12 weeks of my life, I have to get through it.'
I, like you write poetry and I just wrote one about my life now but deleted it.
All I know is we cannot give in, we cannot let HCV win!
Your poem is brilliant, you put your true feelings into it. I just can't do that publicly at the moment.
Best wishes. xx
Hurrah. Such good news. If I could I would press "like" "like" and "like" again on this post. Hope getting your UNDies gets you through the tough times ahead to finish the treatment. x x x
Bolly thank you thank you thank you. I don't think it is fair to ask -but you know me - what are the 'tough times ahead' because I think I am having them now! I will NOT give in HCV will NOT win - that is what I keep saying to myself but, when I go to my appointment next Wednesday, I am a very intelligent person, but cannot describe how I feel but, I have managed to get through each day. Last night before falling asleep (I seldom do that) i just let the tears fall from my eyes????
I have arranged and running stalls for my friends' charity TAG - Turkish Animal Group in Bournemouth and London for November and December - I did this before knowing I was going on this treatment?????????
Can you please tell me what I wrote about UNDies because I cannot remember lol!
Cyber hugs. xx
You know Tatjana, and others know, that the treatment for HCV is no walk in the park. The drugs are so so strong. They have to be to kill that dragon virus dead. But in doing so they can often pretty much wipe out the patient with nasty side effects. I remember on the Nomads forum supporters saying the object of treatment is to kill the virus not the patient! I don't know how many more weeks of meds you have but I do know that many less gritty than you have given up on treatment because it is hard. I'm sure you will tough it out to the bitter end, and then hang on in there for the final PCR to check the virus is dead, dead, dead.
What you want is that Undetectable test to remain undetectable. Again on Nomads, they used to refer to it as "getting your undies". Sometimes people took it literally and bought themselves some glamorous new undies! 👙 ☺️
Thank you so much Bolly. Do you know I remember writing about UNDies to you but I do not remember writing the rest. I was not well when I wrote that lol! I am shocked that I wrote about 'tears rolling.' It was true but, if I was normal, you know what I mean, I would never have written that - I think I must have been desperate then but, today is another day and I have managed to get through it, isn't that strange.
Thank you so much for all your kind thoughts and wishes. I do not think it will be UNDies at my age when I finish the treatment! xx
Thanks Bolly. I have shown my hubby what you wrote. I have to do things NOW immediately, I know what has needs to be done because I am trying to arrange things (hosp appointments) referrals for him because his diagnosis has really upset me and nothing is happening when I want it to and waiting for phone calls, emails, confirmations is driving my blood pressure sky high but since last week I am on blood pressure tabs. xx
Thank you all for your helpful replies. I am praying I don't get to the stage of needing a Transplant as I have already been deemed as far too fragile to have one! So pleased to hear you are all coping with treatment, and great news from Kimberley having had a Transplant too. All of this will help me make some decisions regarding treatment as I know how important it is to get on this urgently.
Thank you all.
Keep Smiling or in my case Keep Twinkling
Love and Hugs to you all.
Twinkling Star
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