Diagnosed in 2002 with Hepatitis C and now having treatment.
I started 5th August last month and was so grateful i was given the chance to get rid, I was actually looking forward to it no matter how hard it was going to be . I mean this is my chance to sort my life out
once and for all.
So six weeks later and i feel good physically but my mental health is suffering because all of a sudden
i'm cranky,bad tempered and want to bite people's head off for no reason.I mean i'm Scottish so i've
always had a wee bit of a temper on me. For the last 5 years i've been clean and next month i havn't
touched a drop of alchohol for 2 years.
So i have been getting fitter and stronger for the last 2 years and it wasn't easy but i wouln't do it again any different.
After 2 weeks of the treatment my viral load went from 1.7 million to 21.yes folks 21.
So it must be doing some damage i mean that's heavy numbers right.
I've worked hard to get to this moment so i will not give in and carry on taking the pills.
I just hope i don't hurt to many people's feelings along the way.
Sorry about having a wee rant but its gotta be done.
To all people awaiting treatment for whatever disease you have stay strong and "No Surrender".
Written by
scottyboy40
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I think your doing great, my friend, and try not to be too hard on yourself.
I've actually heard, from another place that some of the studies on the Harvoni are showing depression in some patients, as a side effect of the treatment..I wonder if that could be manifesting itself in you? I can get the links to the research if you like? just let me know! Maybe try some light exercise, or meditation for mood swings? Even a walk to cool off and clear your head can be great..Me? I like swimming, and walking..and I wish I could do either one right now..lol..
So...sounds like its working.....guess you have to take the the rough with the smooth.......but...maybe depression....go see your doctor....could be simply a phase that will pass.........BUT...being snappy....short tempered is not the end of the world.....Everyone is entitled to have days.....weeks like that...Changing bad habits is hard.....Just think back....and see how far you've come.....
You're welcome....I'm just glad to still be alive...very nearly wasn't....Everybody has bad days....not as if you can have a drink to cheer yourself up....Its just the way life is.....But explain to your gp...what I suspect are side effects...
I used to be a member of Nomads Hep C support forum and people were ALWAYS experiencing mood swings, feelings of being short tempered and irritable and many suffered depression (I think its the Riba that causes depression which is why people with a mental illness cant treat). Most were prompted to go see their GP and get some anti depressants for the short term, as it seems it was a chemical imbalance caused by the meds and treatable. It didnt mean you would have to be on anti-d s for ever and it made the treatment and life for those around more bearable!
Hi scottyboy, Wow 1.7 million to now 21 makes it all worthwhile! I am going and try and follow what you preach about staying strong and not surrendering, well done!
As Bolly knows, I am due to start HCV treatment shortly. Have first meeting on 23rd this month. I have genome 1A.
Many years ago I was on if not the first, one of the first Drug Trials with Riba
virin and Interferon. To say it did not work is an understatement, it made me so ill, my husband told me I was passed depression. After three months my nurse phoned and said 'stop the treatment, your viral load has not dropped one iota. That was 1990 something I got HCV from a large blood transfusion.
I would not worry about being cranky and your friends should realise you do not mean what you say. Scottyboy look how it's working!
I do not know which treatment I am having. My Hepatologist has emailed and said it is about 12 weeks treatment? Perhaps you can have a guess. I only hope it is not with Interferon but, I have waited since 1991 for this!
Maybe I should warn my friends that if I am -itch- to them the treatment gets the blame! Thank you for the warning. During my trial I had to inject Interferon into my stomach I think three times a week. I thought it was the Interferon that caused my depression. Bolly darling, you know the answer.
You are allowed to rant. Do you feel better for it? I hope so. Keep in touch please and, if I am not too depressed, I will also.
12 week treatment, it's for Hep C, and your a genome type 1? Plus you've tried the interferon..so, it sounds like your going to be on what Scotty is on, and what I just finished taking, the new Harvoni. I had no side effects at all. Although I did get a bit tummy sick from the ribav that goes with it, so they took me off it. I'm no longer showing Hep C in my blood work, that happened about a month into taking the once daily pill. Looks like a big peach vitamin. It's super expensive, like I figured it out, £ 729.00 per pill! Crazy! But yeah, after having Hep C for over 20 years..what a miracle. Again, I'm not a doctor and don't know for sure, but it sure sounds like the Harvoni! Good luck!
Kimberly, thank you so much. I had a feeling it was expensive because of the 'words used' when I got the call. I have had Hep C since ---- 1973! My husband keeps telling me I have to have Interferon again and, because of what happened on Drugs Trial, I feel that I won't be and you have given me hope.
So, both you and scottyboy have dropped your viral load - wonderful!
Tell me, besides your tummy and scottyboy's depression? how different do you feel physically?
I will keep in touch and thanks for your response.
You do that, If ther'e's anything i can help you with or share i will
offer to you.You just ask away.
My viral load went from 1.7 million to 21 in 10 day's.
I hope this doe's give you hope to finally get over this and get on with your life with your Family and Freind's.
Keep us posted plz.
And yes there's little sign's of improvement already like i personally have more energy and fluid seems to be going in my legs slowly.Or maybe it's just wishful thinking on my part.lol
Morning 😘 rubbish footy results 😔😔😔 although AFCB played a lot better than LFC did (apart from the goal which was fab) 😅😅😅😅
I am confused 😧 Rob had a viral load done not long after transplant 6 weeks ?? Or 3 months ?? Can't remember now but I am sure it was '6 logs' which is 6 million ?? Yes ??? Isn't that a lot ??? They have mentioned lots of times about 'virus attacking new liver' but we knew that would happen - just wondering when it becomes a big 'problem' again 😫😫😫😫 as he is still not right and if I didn't know any better I would say he was 'encephalopathic' again 😔😔😔😔 ❤️❤️
Morning Robswife ha! sounds funny calling you that,i feel like am cheating Lol haha.
Wow 6 million that's a high number,compared to mine.
Yeah encephalopathy, i had that pretty bad it just creeps up on you,scary i know so you must be so
worried about him.I havn't had a tp for a new liver,
so i can't comment about that.
Sorry can't remember off top of head what genotype he is but i know Harvoni work's good with genotype 1
I know somebody else on here that has genotype 3
and has been treated unsuccessfully twice,once with peg interferon and riba,and again with Harvoni and riba.
When i have been encephalopic in the past my partner tell's me she can smell the ammonnia coming out my pours,Nasty stuff eh!And she also say's about mt breath,urrh.Toxins i suppose.
At my last clinic app,i asked them to do an extra test
to see i had any raised levels of amonnia and other toxins.Because at first when i started getting moody and touchy i thought it maybe Encephalopathy.
Hi again! Not sure what you mean? About the physical. I do have a bit more energy also, like Scotty mentioned.
And the riba did make me feel tipsy turvy..but other than that? Not much. To be fair though, I've gone downhill quite a bit in the last year..which is why I'm on the transplant waiting list. I get drained every 10 days, am in bed a lot, use a wheelchair now..but all that's normal, given how advanced I was prior to taking the Harvoni. They told me it might not do too much for me..BUT, for me, it's really good because that means hopefully the new liver won't get sick from Hep, and they think it will make the surgery go smoother, as my body won't still be trying to fight that virus, on top of working to accept the new graph. Hope this helps? And wow, '73. A longgggg time! A lifetime, bless you!
Xxxxxxx
Have a wonderful weekend!
Kimberly
Ps will you be going to Kings or Cambridgr for treatment? Just curious as to where they are releasing the drug now. I was in the first 500 people to get it, well, I was on the list since a year ago, but I could not get it done as soon as they wanted, so I went with the second group of 500. They really monitored the first 1000. There was some type of point system they were using..so the sicker you were, the quicker they got it to you. My docs and I were dealing with another issue, so that forced. Us to have to wait to get it..not that I think it made a huge differenc
Hi Kimberley, yes it was energy I was talking about because now I am older I get tired sooo quickly and because I am on steroids, I cannot sleep most nights. Yes, it was 1973 I had my baby.
With regards to Kings, it could have been Kings but, I was shared and my darling doc in Chelsea is doing it. I met my Kings Hepatologist in the corridor at Kings by chance and mentioned about my treatment. I had an appointment with him the next day but he said he would not be offended if I went to C & W. So it was agreed.
I do not know what the point system is but I have had Liver C and when I went for my appointment with my Oncologist he said to me to please have the treatment because it will stop me getting a Liver Lymphoma again. I have had a resection carried out in Kings. I know that is the reason the HCV treatment was applied for by my Hepatologist.
ahhhhhh ok..so, maybe NOT the Harvoni treatment..I'm just not sure..lol..but I'm not a professional. please keep us updated as to what they end up giving you. And I know what you mean about getting older..and feeling so tired. (nearly 49 here) Of course that's a big thing for any liver disease..utter exhaustion..some days, I cannot sleep enough..lol
Thank you Kimberley. I reckon it will be Harvoni but I will have to wait to find out. I promise I will keep in touch. I have been on Health Unlocked since it started!
Having the treatment sound's like a great bit of advice for you.If it can help stop you getting liver C then i'd definetly have it.I'd put my trust in the doctor's.
Thanks scottyboy, I have had Liver C once and the treatment will ensure I do not get it again. I was lucky because it was primary liver C. Yes, my doctors all know best!
Thank you for your kind words,WOW I can't believe it .I'm so
happy for you today .brilliant, I hope your treatment goes really well for you.
You have had this for too long and i know what it does to us.Sorry to hear how you got this awful virus.
Yeah i've been really aggressive for the past month,i just want to get through it now. I'm halfway there but as you say it's working so happy days right.
Harvoni is the buisness, so i wish you all the best in your treatment.
Robswife put me right Tatjana, it was the Riba, "Riba Rage"!
If you are going to be on the Harvoni like Kimberley, then I dont think there is interferon but you may have to take the Riba still, is that right Kimberley. I think the Harvoni pill has two drugs, both are direct-acting antivirals (DAAs). One is is sofosbuvir (brand name Sovaldi) which is a polymerase inhibitor. The second drug is ledipasvir, an NS5A inhibitor.
From what I remember from the Nomad forum, the worst side effect of the polymerase was a burning bottom, caused presumably as the remains of the drug was passed from your body. People sat in baths of ice and used haemorrhoid treatments etc. But it may be different now, lol!
Thanks Bolly. Bolly I have a b b now! because of my stitch scarring. In which case do you think it will catch fire when I take the Riba? Lol! I use Metanium. I find it very soothing. I am trying to be cheerful but am quite scared really but you, scottyboy and Kimberley have actually given me hope now.
Well done you 😘😘 that's fab news xx
Back when they did 'peg interferon and Ribavarin' 😠😠😠 I remember the term 'RIBA rage' - so think what you are experiencing is normal - I am not sure but I think they gave Rob a small dose of citalopram (anti-depressant) to help 😀😀 he is not the best example to use as they treated him when really he was to ill to take treatment 😠😠 but this RIBA rage was mentioned quite a lot.
Don't worry about being Scottish 😂😂😂😂 we won't hold it against you 😘😘😘😘😘😘😘😘
I feel lucky i didn't have it, well at the start i was too ill to have Interferon.
Waited 2 years since last admission to have harvoni and riba.
i had to try and get better first but so happy now i got there.So Rob was given anti-d's to help,thank you for that.I'm hoping i can get through it without but whatever help's right.
And thank you for not holding against me .lol ha! ha!
I'm a glasgow rangers but i love Liverpool f.c. But Brendon Rogers needs sacking today.
Totally 😂😂 Robs the 'Liverpool' supporter - I support my HOME team 😂😂😂😂 AFC BOURNEMOUTH 🍒🍒🍒🍒🍒🍒🍒 xx
Robs treatment was supposed to be 36 weeks but he didn't get that far - so you may not need any 'help' re- antidepressants - sounds like you are doing really well 😘😘😘 the Riba rage affects people differently so hopefully you have done the worst part - keep us posted 😘😘😘❤️❤️
Robswife has got it, I remember now from the Nomads forum - "Riba rage". Also citalopram was the recommended anti-d on the Nomad forum too, it seemed to work well and was not addictive. People came off it at the end of treatment. If it makes the treatment more bearable (you still have 50% to go?) then I would say why do the stiff upper lip/grin and bear it when a short course of anti-d's may make the second half go faster.
Thank you Bolly and I agree with you about the anti-depressants but I take 12 tablets plus lactulose everyday and I don't want to do anymore damage to my liver.Youre right about the bum thing though. Lol
scottyboy40, the bum thing is not funny. I know! lol! so I now I am going to try and think of ways to perhaps freeze it in advance. Any ideas will be greatly appreciated. lol!
I have just thought of a better idea. By the way, do you use 'predictive' text because it spells strange words - arse? Sorry this is rather a bum question. My idea is to go to Iceland - that should chill my post er ior out but I think it may cost a lot of money for the flight. Maybe a bag of frozen peas from the Iceland down the road?
Scottyboy40 I do like your sense of humour and I think that all the people on this page have problems and are all trying to be supportive to each other for which - thank you very much - to be honest I am worried sick after reading info in general as to which treatment I am going to be on and the side effects because last time it was horrible and now I am a lot older.
Hey,you'll be absolutly fine,try not to worry about it and put you're faith in your consultant.He want's to make you better.
I had a bad few days about 3 weeks ago
and was the most stressed i'd been in a couple of years.best friend passed away two weeks into my treatment then someone broke my computer trying to upgrade it.But they couple of things on top seemed to make me worse.But i feel fine now so if you can try to keep stress levels down during treatment you should be absolutely fine Tatjana.
Hi there--well done the treatment does work very quickly, I was Hep c free after 4 weeks :). Keep going, keep positive and stay strong and it will be fine. I am back on 24th september (24 week check) for my last blood test to check if the Hep C has stayed away. I was Geno 3 so there is a slight possibilty it might show its face again but fingers crossed it has gone for ever. Keep smiling and all the best. x
Well, I promised to tell you all about my treatment. Monday 23rd September (yesterday) saw my Hepatologist and nurse. Guess what? Before I was told I asked 'is it Harvoni?' and I was told yes. This is it:
(Harvoni made up of Ledispasvir and sofosbuvir)
Harvoni plus 3 x Ribavirin morning - 9 hours later -
Ribavirin x 3 after meal
Starting date: Wednesday 14th October.
I have even warned my grandchildren about the rage lol! How is everyone?
You know how good news can be spoilt by bad news Scotty Boy, well last week my husband received the dreaded phone call to go to hospital Monday 21st September following an MRI and biopsy. He has been diagnosed with slow growing Prostate C so we are now getting a second opinion next Monday about going for long radio therapy treatment or operation. I cannot think straight at the moment.
So with possible side effects for me and what we are both going through - still it could be worse.
Life is so hard sometimes i know,but as Dizzime said they can do just about anything these day's.Hope a second opinion holds some goodnew's for both of you.
I'm worrie'd now about how you'll be during your treatment.
You need to look after yourself Tatjana,have you got family who can be there for you when your not feeling well,i hope so.
You are so caring, all of you. Yes, I am worried about how I'll be because Interferon and Ribavirin did not work for me. I was sooo ill. And, yes, I am lucky, I do have family who really care. I will let you know what happens Monday. xxx
Oh my goodness what a blow for you to find your husband has Prostate C. Just when you could do with some peace life throws another curve ball. They always said on Nomads to eat lots of fat with the RIBA as it absorbed better.... Peanut butter, high fat yogurt, cream cheeses, ice cream etc.
Thanks for your advice as ever Bolly and yes it is a blow. I could deal with my Liver C but I can't deal with this happening at the same time as my treatment. With or without my treatment, I am finding it hard to cope. x
I know what you mean. When its us we know whats happening and how we feel, but when we are on the outside looking in we feel helpless.
I'm sure you are finding it hard to cope, but you will. You have before and you will this time. If it all gets too much then come on hear and unburden xx
Thank you so much Bolly. I will take your advice. Another question - I went to my GP for an Vitamin B12 injection and they asked me if I wanted to have the flu jab at the same time. I did not know what to say. So I refused it then. Do you know if one can have the flu jab say two weeks before my HCV treatment? xx
I dont know as I dont have HCV. But I do know that I have it every year and there are no concerns that I take an antiviral for the Hep B and an immunosuppressant for the AIH. Its not a live vaccine so is supposed to not compromise our immune system. I would have thought with the flu season coming up and your treatment being over the winter it might be an idea to have the jab.
It might give you short term side effects for a day or two, but nothing like as bad as the full blown flu.
Having said that, you could ask your liver specialist.. i doubt the nurses who do the flu jab would know but the specialist might have been asked before about HCV Tx and vaccines.
Scotty has blazed the trail for you! Great to hear you are feeling more positive. I expect Scotty has a few more treatment tips up his sleeve he can share when needed!
Hey Tatjana, Hope you are coping ok today and iv'e just read this about the flu jab.My consultant told me that i could have it during my Harv treatment.I've never had one before so i will wait until i have finished my treatment.Hope this helps. xx
I am coping better today. You know I said I was going for that special appointment on Monday with hubby, well I asked one of my doctors at hospital by email who he would recomend to me. As I did not hear from him within two days, I did my homework and chose the Prostate surgeon we are seeing Monday. My doctor emailed me today and he recommended the same gentleman. That made me happy.
Very pleased you have had some good news today Tatjana,you deserved that today.Look's like you came up trumph's with a good surgeon too.One day at a time and you've got this,this has made me happy. I wish both of you, all the best of health in the future.xx.
Yes, Scottyboy40 that is one hurdle but we have a bigger one to manage and I will tell all on Monday. Thanks for all your good wishes. Will tell all on Monday.
Aww...Tatjana...I'm going to say a prayer for you today..My treatment is going good....Undetectable at this time. YAY!!
I hope your treatment start's Wednesday,and believe me it is worth it.Slowly feeling a lot better in myself mentally and physically,its probably going to take a lot longer to feel all the benefit's but starting too is good enough for me.And once the Riba is out my system hopefully feel better too..so things are looking up..
Can i just say that i love your poem and you did respond to the challange your daughter gave you....LOVELY.
Its a great way to let your feelings be known Tatjana and i like it...straight from the heart..
I do hope your husband gets the best care and treatment too...sending you prayer's Tatjana...Stay strong and have faith.. Good luck and wish you and husband all the very best.
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