Three weeks after HCV treatment with sofusbivar and ribavirin still not feeling better

[JackMcG]

Hi, recently my 12 weeks of HCV treatment with sofusbivar and ribavirin came to an end. I've been told on the phone that my LFTs are normal and that the virus is undetectable. However I still feel ill, in fact I've been feeling worse since the treatment stopped. Horrible heart burn, pain in the upper right quadrant of the abdomen and in a line down the right side of the abdomen which then goes horizontally in line with my belly button.

On top of this I've been feeling really depressed and incredibly anxious.

I don't know if any of this is related to the HCV or the treatment. Is this normal after the treatment stops?

I feel physically and mentally tormented. My GP has put me on a drug called motilium to help speed up digestive transit, I've also been given diazepam to help with the horrible anxiety. It takes the edge off it, but I still feel haunted. I have this unshakeable feeling of dread.

This may sound stupid but I just know that there is something physically wrong with me that doctors haven't diagnosed yet. I did have my gall bladder removed a coupl of months ago.

Has anyone had similar experience. I literally feel physically and mentally tormented and I'm so tired and fed up with it all.

Any advice or similar experience would be appreciated. I guess what I want to know is, is this normal, or should I be looking for a new diagnosis.

Thanks.

[Tess74]

Hi Jack, I've just finished 24 weeks of the abbvie viekira with added ribavirin (yuk!!) almost 2 weeks ago and I have felt worse since ending treatment with things such as anxiety, migraine, nausea, aches etc, the treatment can take up to 6 months to get out of your system particularly the riba from what I have heard!! I was a bit concerned too and phoned the hep c trust folk up for some reassurance, I would suggest you call them too if you haven't already as well as your treatment team and explain how your feeling to them. I'm starting to feel a bit better now although I'm still exhausted and get tired out quick which I'm hoping will pass soon. Well done on completing the treatment...feels like an eternity doesn;t it

[JackMcG in reply to Tess74]

You've no idea what a relief your reply has brought me. I was beginning to worry I had cancer or something. I had no idea about the ribavirin. I really appreciate your reply, it has really reassured me.

[Tess74 in reply to JackMcG]

This can feel like an incredibly isolating, scary and lonely ride at times and txt side effects certainly seem to magnify everything, I do recommend you give the hep c trust helpline a call, all the advisors have had hep c and their advise and knowledge has helped me heaps and they understand all about the riba train ride hepctrust.org.uk/about-us I'm glad you feel some relief, keep on posting & talking

[darhoe in reply to Tess74]

tnks for posting that,i'm 6 days of viekira/ribravin after 3 months of it and what you described is identical to my experience with it, during the treatment i was mostly ok,bit sick here and there not great sleep but i found eating more food helped with the feeling sick and sleeping.on week 8/9 the tummy sickness got to the point where i was waking at 4am and actually getting sick (worse feeling ever),couldnt move away from the toilet.went doctors got motillium and some other non getting sick tab and they worked at that time (i assumed it was a bug. but now im 6 days off the treatment the sick tummy is back,past 3 mornings 4am im awake feeling worse each day,no energy and my going to the toilet habits are rough and tough.at liver unit on wednesday and will post anything usefull i learn,tnks for posting,like you i thought id cancer or them tablets did some series damage.

[Sykesy01]

Hi and yes i to had 12 weeks of Harvoni with 1200mg of ribavirin and also reached SVR12. After the treatment i was also feeling unwell with grumbling pains in my upper right quadrant. I was really anxious as well especially after a session with Dr Google. I spoke to my consultant and was told it was simply my system returning to functioning without the Harvoni and especially the Ribavirin . 6 months down the line and the pains have gone and with them the anxiety. Its just that your circumstances were so like mine. I hope this eases your mind a bit

[JackMcG in reply to Sykesy01]

Once again, I have to say that I had no idea about the ribavirin taking some time to leave the body or that it heightened anxiety. Your reply has been very helpful to me, thank you very much.

[Catfishjumpin]

It took me 5 years to recover from Ribavarin. I had all of your symptoms. I began to exercise. I was on 5 medications and I ditched them one at a time. I walked with a cane for years after my treatment. My treatment lasted a year and I also had to give myself injections of interferon. You can recover. Exercise, rest all you can, eat really well and keep your focus on yourself not the worries of others. All of that got me thru and recovered but I still was left with the virus. Good luck.

[JackMcG in reply to Catfishjumpin]

Thank you so much for your kind reply. This forum has been such a great help to me throughout my treatment, whenever I've asked questions. I value your reply, I really do. I'm sorry to hear that you still have the virus.

I want you to know how much your comment has helped me and put my mind at ease. Thank you.

[Catfishjumpin in reply to JackMcG]

2014 did trial olysio and solvaldi. Killled the virus but have had liver cancer more than 2 years. Tryingto make transplant list now. There is a small percentage that get liver cancer during their 2nd treatment. I feel unluckily into that group. Liver cancer makes the virus seem like a kitten. Its hell to fight for quality of life now even if it happens once or three times a week. Spending loads of time in bed too tired to do a thing but still fighting and still cycling.

[JackMcG in reply to Catfishjumpin]

That sounds so horrible. Considering you are still cycling I think you are champion. You are certainly an inspiration to me. I realise I am comparatively very lucky, and that I should grasp every good day and make the best of it.

I deeply appreciate your time and your kind, encouraging words.

[Hidden]

Jack, great news that you have cleared the virus 😊Not so good that your feeling the way you are , it does take a while to recover from the ribavirin , my husband didn't experience what you are experiencing but as soon as treatment finished he started walking not great distances but fresh air made a difference....seriously thinking about taking up cycling ...inspired by Catfishjumpin 😊 Hope you begin to feel the benefits soon x

[JackMcG in reply to Hidden]

Thank you blue bells. Fantastic news about your husband. I will begin to challenge myself when I feel a bit better. I want to go fell walking again.

Thanks for your reply.

[tillycindy]

Hi jack, I finished 12wks of sof, dac, and ribba 10 days ago and feel terrible still, no energy whatever. have been told it,s likely the ribba is the guilty party as the other two clear the system in 24hrs while the ribba can take (depending who you believe ) 2wks to 2 months. Also very little sleep!. Hope you feel better soon. Regards anne. P.S now I see above someone says 6months.......oh heck !!!!

[Tess74 in reply to tillycindy]

I think it depends on the dose & the person tillycindy, I don't think riba is as harsh with these new drugs as it was with the older treatments going on what I've read on what people had to go through for treatment before DAA's. They say riba has a half life and keeps on working for x amount of time...I suppose it makes sense when you think about the job it's doing. I'm not sure about how long it takes these new drugs to clear out of our systems as they're so new there's not an awful lot of info out there about end of treatment, I have found reading how its personally effected people in forums such as hepcuk & hepmag have really helped and also learnt these new drugs aren't the easy ride that we had hoped but still a damn site easier the the interferon stuff and with a much much greater success rate. Today is my 2 week anniversary of taking my last pill (although I confess I quit the riba 2 weeks earlier, I couldn't hack another pill...vile poison, but i felt safe to do that as I had clearing the virus after just 12 days into treatment, why they kept me on the 24 week stint I'll never understand!!!) and I'm starting to feel much better, I'm finding in the mornings I feel kinda normal (which is a strange feeling in itself now lol) but by the afternoon I'm knackered but I am noticing I'm seeming to have longer periods of this normal feeling and the tiredness is hitting me later in the day...sleep is still difficult despite that but I take half a sleeping tablet to help me drift off. I hope you start to feel better soon x

[tillycindy in reply to Tess74]

Thanks Tess, that is interesting. So you are a few days ahead of me then. Glad to hear you feel you,re slowly turning the corner. I,m just too impatient and half hoped too see benefits straight away!. Wishing you well. Regards anne.

[L444 in reply to Tess74]

Congrats on finishing . I hope you feel tip top soon. I’m at 10 week of a 24 week course of virekirax, exviera and ribo have every side effect first 6 weeks I thought I was dying and paralytic I got the all clear after a month I feel like this treatment is doing permanent liver damage I go from work to bed and back to bed I can only take short walks . I hope these symptoms are not permanent

[JackMcG in reply to tillycindy]

Thanks Tillycindy. I'm sorry to hear you're having a rough time too. I really had no idea that ribavirin could be such a little monster. Insomnia is horrible, I know from experience. I guess we're both in similar boats. I really hope you get some decent sleep soon and start to feel better.

I really appreciate your reply, it means a lot to me that someone who is in a similar situation has taken time to reply to me and reassure me.

I do hope you feel better soon

[tillycindy in reply to JackMcG]

You,re most welcome, anytime you need to chat. anne.

[dckimberly]

Hi there. I had the treatment with no side effects whatsoever..BUT the riba was making my tummy Ill and I had them take me off of it straight away, which they did.

One thing..I still had all the same problems prior to the treatment. But my liver was already too sick. They gave me the Hep C treatment to literally stop what it, itself was doing to my liver, and to protect my new liver once transplanted.

I never did expect to feel better. No one said I would. They only said if all went well the Hep C would no longer show up in my system. That was good enough for me.

That riba is bad news. They used to use it with the old interferon treatment, and it caused a lot of mental and emotional problems. Many people had to stop the treatment altogether because of the side effects. That's what I heard from people who had taken it or tried too.

Still, your issues sound pretty serious. Please speak to your doctor about all of these issues your having. We're not doctors and who knows what else could be going on? Nothing, I hope..but yes. Speak to the doctor, and NEVER use google when trying to learn or get info. My own doctors told me not to use the Internet..unless it was this site, or the NIH in the States.

You'll find a lot of info that is amassed by the Trust itself on this site. Please read those articles and info. That can be trusted. Dr. Google is a fraud. Lol

Good luck! I agree about trying exercise, if the doctor ok's it for anxiety. I also use a lot of meditation. It has helped me so much.

Goo luck!

Cheering you on!

Kimberly

[JackMcG in reply to dckimberly]

Thank you Kimberly, a lot of helpful information there. I'm also on a number of other meds too.

I have seen my GP and I've been given some meds to help with the anxiety and I'm seeing the liver specialist again in three weeks.

I've definitely taken on board the good advice about not consulting doctor Google!

Thanks

Jack

[L444]

Check your thyroid