Life changing experience

[Debbiedoos]

Iv about one and a half months left of my treatment

Iv never experienced anything like this In My life.

I'm on Abbie 3D iv hepatitis 1A geno type my blood viral load was 250000.00 it's now below 30 undetected yippy.

So why do I feel I'll like I'm dying my liver is heavy and painful iv swallen legs itchy rash in my ankle my hair is falling out I'm swollen all over I'm depressed fateged.

I feel so ill iv a long way to go to even feel better .

I hope everyone are managing there treatment.

Take care x

[navigatinglife]

Hi Debbiedoos, hang on in there you're doing great and amazing to know you're already clear 🎉 As the medication is working it's magic your body will feel it. like anything we put into our bodies there are effects but this won't last forever, take it one day at a time and keep looking at that "undetectable "fantastic 😍😍

[Debbiedoos in reply to navigatinglife]

Thank you so much for your reply . Sorry iv just seen until now

Iv Not been to well it's all taking a toll on Me been feeling depressed stressed and swelling of the legs and strange rashes.

I will take one day at a time. Thank you x

[navigatinglife in reply to Debbiedoos]

Hoping these last 4 weeks goes quickly for you. I finished different treatment over month ago & still feel a little low. To be expected, all and any of it, as these drugs are very strong. but we are stronger! Keep up the fantastic battle it'll soon be over 😍😍xx

[Debbiedoos in reply to navigatinglife]

Thank you so much this means everything to me

On here reading and responding to others.

It's so funny how this works becouse I'm screaming for help but I'm also replying to otheres with my help to them or my advice

Funny that.

Thank you x

[navigatinglife in reply to Debbiedoos]

I know exactly what you mean 😃x

[Hidden]

Hello I was same I felt terrible very depressed and swollen up round belly good news it deos pass the depression lasted around 4 week after treatment and I’m still swollen but everything else is fading younwill get their mate x

[Debbiedoos in reply to Hidden]

Thank you

you all giving me positive feedback. It's like your trying to get out of your own body but you can't.

Deep breaths.......roll on 6 weeks thanks x

[bunnyroo]

I'm nearly 7 weeks in to Abbvie 3D plus Ribavirin treatment for genotype 1a. Starting VL was 2.6million; 2 weeks in, < 35; 4weeks in non detectable. However, like you, for most of this time I've been ill. I had a short respite for couple of weeks, except fatigue. Then awoke, very yellow again and sick. Changed anti sickness drug to Ondansetron. Because awoke other day feeling i had concrete in stomach....expanding. Even with new drug plus halving the Ribavirin, I am so ill. Came home on bus, not long in town, felt sick and faint in shops and on bus. Really did me in. This morning something new: on toilet over an hour. Sweating, weak, feeling sick but with grossest diarrhoea. Seems it stopped a vomit but pushed it all down lower. Can't recall being quite so ill. They say i need that gastroscopy as varices in stomach, maybe oesophagus, too. So i think could be that and not the treatment making me this bad. Talk to your nurse. Get her to explain and seek something to help you. You don't say length of your course of treatment. Mine's 24wks. Good Luck. Thinking of you.

[Debbiedoos in reply to bunnyroo]

Thank you

As you been so ill trying to do day to day normality is a joke.

I'm same as you hun 24 weeks geno type 1a undetected after 8 weeks .

They have dropped 2 ribavirin instead of 3 Im On 2 , becouse I developed a bad rash on my ankle and swallen lower legs n ankle right foot of a rash on my lover back to.

I can completely understand how you feel when you say about going to town and passing out

Bless you hun I never passed out just excessive fatigue muscle spasms at night can't keep still Heart rasing pounding feels like I'm going to have a Heart attack.

Disability people ignored my condition I'm already on low disability for my arthritis but they keeped it the same being self employed you don't get time off or pay so difficult .

I am graitfull though even though I feel like dying somtimes the mood swings and depression at times are unbearable.

I'm talking to a counceler and have called the liver trust it helps at times but we all have to get through it our own way.

I wish you and everyone who's effected by this a speedy recovery and a happy n heathy life .

Thank you for sharing with me it helps to know were not alone x

[bunnyroo]

Hello Debbiedoos, an update: taken off ALL treatment for Hep. C. They believe my problems down to liver disease itself rather than the treatment. Been off it two weeks, just over. SHOULD feel better. Well I'm not so sick, i suppose. However, now I also have pain (like bad stitch) in my liver; very swollen stomach, legs, ankles, feet, fingers.....all over despite having taken a diuretic for months now; return of diarrhoea AND nausea; yellow hue to me; VERY short of breath (like i have no room in my chest to expand my lungs); still fatigued. I'm in reasonable spirits, considering, though have my private moments of impending doom. Does anyone reading this know more about actual liver disease/damage and what my possible next step will be? Will it be downhill? How serious is this? Nurse asked me to come in tomorrow, see ANOTHER Consultant, have another ultrasound, another round of blood tests. Before this latest all began, the previous Consultant was seeing me each fortnight, bloods taken and IF ANY sign of virus back, he'd start me immediately on 24weeks of a less toxic drug regime. Then this. No mention of varices/gastroscopy now (RRRRESULT!!!). Tad confused. Anyone out there? This look familiar to you???

So, Debbiedoos, try to see your Nurse asap, explain how you feel. And the very best wishes and of luck 🍀 to you! Take care of yourself 🙏👍💪. Do update me, I'm very interested. You and another person on here, and I, are all in the same boat, same genotype, same drug regimen. So i will be watching!!!😊😊🤗

[Debbiedoos in reply to bunnyroo]

Thank you for your reply

This sounds just like me to

Iv been off work for to days and mostly in bed .... lazy well can't seem to do anything it tyers me out.

But for this reason to I wanted to see if it made any diffrence to the pain in my right side .

And yes it did some just random stabs aches and if I turned over or stretched. When getting up walking around it's like I'm wounded.

Got to go to work so dreading it .

I feel as though iv been ill and just starting to recuperate.

Iv been taking cocodamal for years pain meds do they lowerd my amount daily becouse it's one of the reasons Dr think iv liver deasese as well as hep c that is now undetected yippy.... so why am i not HAPPY i am but my liver is crying I personally think the dose was to strong for me and it's made me worse. So that's why after meds they still keep an eye on us yo see the damage and start to rejuvenate the live becouse it dos heal itself with our help of good foods and watch what we eat .

I read it can take 6 to a year to get of the meds ...and what damage left is unchangeable.

As long As it's functioning well in blood tests THATS IT. 🙄

Iv know knowlage of the future and what is our future after hep c and meds I did speek to somone at the liver trust and she said I will get better it takes time and looking after yourself she did say somtimes she gets a pain in her right side .

Hope you and all of us get better soon , she did say the virus has to be killed Regardles and that's true.

Just seems strange that I felt better before the treatment

Stay strong and take care x

[L444 in reply to Debbiedoos]

I cannot work and have spent the better part of 5 months in bed . Everything you have I have also so you are not alone. I feel like I have aged 15 years so now I’m really 75 lol. Thank God I have a bed pjs and box sets . There were times when I couldn’t put on clothes my skin was so angry,like being wrapped in nettles while being bitten by fire ants . Well that was my rant thanks for listening. This too shall pass, it’s what’s left is scary . Be well drink lots of water ,rest give yourself time to heal

[Debbiedoos in reply to L444]

Bless you hun Pjs🤣 totally relate to that .

Fire ants big red ones lol yep me to at work I look like iv nitts all over my nody

I'm like a monkey and when I start it dosnt stop my clothes hurt me and like you say stunning nettles.

Apparently it's the chemical in your liver and blood who knows it's not nice .

Iv two weeks left on this rat poisen but I wish I was mire informed about what may happen to me I did ask if I had to stop work and they said no.

How wrong could they be I'm laying her typing this and my body is like a tooth ache spasms and I move like I'm on some mind altering drug like spasms and I have to stretch arms out and legs it's like torture.

The disability people say it is by how day to day living is you tell them and they ignore it I don't get it in not faking why would i ,

I was given a month off work by my GP lol makes me laugh if only I could I own my own bussiness and if I took time off I wouldn't have a bussiness a home left I mean I would be in the arrears becouse self employed don't get payed if you don't work and insurance isnt worth the paper it's printed on .

Well I hope you feel better and get some relief they told me to use cream all over lol I need a nap after doing that becouse it knocked me out after applying I get so fatigued.

Do you have a rash anywere hun ?.

Iv one on My ankle it's like so itch it feels so good to scratch it the it bleeds so I have to pay it with cream.

Take care xx

[oncesunny]

Hey, I hope you feel better soon.Im on Harvoni ( 3 weeks in) I can relate but I do have other health issues..If you check the threads I just posted one.Too fatigued to repeat issues again. .Good luck!

[L444]

Hi Debbiedoos I am on triple therapy ribavirin exviera and viekirax . I thought I was dying I have 3 weeks to go will be 24 weeks all together.I had no obvious symptoms before treatment . Now I am so sick the sickest I have ever been . The rash is probably ribavirin I am covered in the most horrible rash I can’t stand my own skin . It is truly lifechanging . 0 viral load after one month. I hope you feel better very soon I’m going to look into this pip thing I don’t need it yet just hanging on by a thread. you have done great to stick with it . Bravo I hope you find some comfort soon

[Debbiedoos in reply to L444]

Bless you thanks

Yah it's horrible it's like being poisend .

Pip goes by how your daily living is but it's so hard to get on it becouse it goes by points scoring

And if you can do thing for yourself you get no points .

I realy think when anyone goes on a heavy drug like this it should be recognised as a disability weather you have a reaction side effects.

You may get low rate but anything helps while on this treatment they expect our relatives to help us but difficult if they are old and you should be caring for them.

Iv got hospital Monday for bloods everything is normal thats good but makes me feel like I'm crazy and it's in my head and I know it isn't.

Hopfully we will one day looks back and say what was that all about but in the meantime

Stay strong I'm going to take my pain meds early.

Hope you find comfort x

[Gerryinoz]

I had the Abbie 3D with ribavirin 2 years ago in Australia for hepc with cirrhosis and it knocked the socks off me. The ribavirin is the killer that smashes heamoglobin levels.Now I am much improved with fibroscan readings down from 20kpa to 10kpa.

Best advice I can give is eat well,exercise if possible and drink heaps of water. Recovery after treatment and svr was slow but I found many other ailments were improving. Eg: better sleep, great appetite, much less brain fog and confusion, less fatigue, more calmness, lower blood pressure and sugar levels, muscle and joint aches receding and peace of mind. You have a lot to look forward to after the virus is removed, which with the new treatments is very likely. Good luck. Gerry.

[Debbiedoos in reply to Gerryinoz]

Thank you so much it's 2 weeks after meds and I'm a bit better off ribavirin but still in pain all over and liver area

And tryed n fatigue

Take care x

[Gerryinoz in reply to Debbiedoos]

You will get better but it might be slowly. If you have slain the dragon, as the vast majority are now doing, your future is so much brighter than living with that horrible virus.

Good food and exercise are the key to recovery and health. Start exercising as soon as you are up to it. I am amazed the difference just brisk walking 20 to 30 kilometres a week made to myself. You don't need a gym, walking, bike riding or swimming are hard to beat.

The fatigue caused by ribavirin was severe for me too. I felt like a deep sea diver with the lead boots on. Be quietly elated you are virus free. All the best from Oz.. Gerry.

[Debbiedoos in reply to Gerryinoz]

Thank you

Yes all gone and hopfully never come back.

It's going to be slow I understand having arthritis to dosnt help .

Hope your feeling better to . 😁