Sovaldi and Ribavirin users?

[victoria48]

Hello I am on day 60 of Sovaldi and Ribavirin and it all has altered my personality to not nice and feeling quite mean at times. Nine days ago my doctor cut my Ribavirin down to 300 MG instead of the 600 MG a day.  I am a bit better but wish I was well and not on this treatment.  I went from 600.000 to undetectable in 30 days. I will take a blood test next week to see what is up as I now have mild anemia.  I am also feel an under lying crap feeling as I use to be funny tell jokes etc no more. I have had anxiety some itching and just terrible mood swings and now badly fatigued.  I am not happy living with friends as they do not understanding and are so boring. I do not think unless you go through this treatment that you can understand?  The sun is a enemy as I went out in it and my face burned and my skin peeled no more direct sun! PLEASE is there any one out there that can relate to my issues?   I am Hep C Geno 1 A.  I have mild cirrhosis because my passed doctors neglecting me. I am an older female and my Hep C is non alcoholic and may have had for 40 years as many blood transfusions when young. They say I may have to do this 24 weeks and for the love of God I do not know how I will tolerate it??  Please answer if you can relate on these drugs or situation.  Thanks Victoria

[Lynn K]

Hi and welcome to the forum

Sorry you are having a tough go of it. Some people have had issues with what is called "riba rage" yes we do sometimes get more than a bit cranky and angry while on riba.

I am genotype 1a with cirrhosis I am taking Harvoni for 24 weeks and my doctor added 1200 mg Ribavirin at 9 weeks. Within 3 weeks my hemoglobin dropped to 9.3 which the doctor wants to see no lower than 10. Minimum normal for female is 11.1. So we dosed reduced and I am currently taking 1000 mg and just slept for 10 hours.

Not sure what you mean your hep c is non alcoholic. Hep c is caused by a virus all hep c is non alcoholic I guess you mean your cirrhosis is not from alcohol but as a result of hep c.

I know it is tough but you need to make it through this treatment the new meds have a very high rate of cure and you have cirrhosis. If you can get rid of your hep c your liver maybe able to heal and regain normal function. If you stop taking treatment and don't get rid of hep c the virus will continue to attack your liver and could cause over time you to develop worsening symptoms of liver disease possibly up to liver failure. So it is very important you try to complete treatment if you can.

We here have a great support community many have been there and done that and many are experiencing treatment for the first time but we all try to help each other deal with treatment and the emotions we experience while treating.

 We are here for you Victoria

[victoria48]

Hi Thanks so much for your response. Yes, I understand very well educated but that means little when you have these horrible feelings and Hep C etc.  I understand what you stated about the non-alcoholic situation.  I was giving general info and my personal label is just that Non-Alcohol Hep C with the Cirrhosis. This is no judgement call just sharing. The underlying irritability is a monster. My test will be the blood tests next week.  I hear or read there is a new medicine out with attempts to replace Ribavirin.  I tried to connect to a web site earlier to converse with others and see what their journey was like? Bless all  that are going through this and no doubt some of us were neglected by the medical system. Thank you again and I will respond to anyone on this journey.  Victoria

[Lynn K]

Sure about the alcohol just not everyone is as educated as others having often just found out they have hep c so wanted to make sure we are on the same page. Most of us here who have cirrhosis is was primarily caused by the hep c.

I have known I had hep c since 1990 and treated 4 times prior so even had you not been neglected by your doctors the situation you are in today may have been no different.

I treated 3 times with interferon based treatment. First time it was 3 shots a week of interferon for 6 months because that was all there was. Then twice (once in a clinical trial) with interferon plus ribavirin for 6 months. I did not respond and am considered a null responder. I treated last year with Sovaldi and Olysio for 12 weeks and was undetectable on treatment but when treatment ended at the 12 week post treatment test I had relapsed.

So like I said even with the best of care available I still have know I have hep c for 25 years and progressed to cirrhosis 7 years ago.

I hadn't heard anything about a replacement for RIBA but hopefully I won't need to know about it if I am finally able to beat hep c this time but a RIBA replacement will be good news for those who come after.

Curious why you are not treating with Harvoni that is the current preferred treatment for genotype 1 per the American Association for the Study of Liver Diseases treatment guidelines(AASLD)

http://www.hcvguidelines.org/full-report-view

Are you not in the US?

Good luck on your journey

[victoria48]

Hi Lynn
Gosh your journey sounds tough.  So sorry!  Yes, I was neglected just prior to it going into Cirrhosis and I do not care to go into the story but I personally knew something was wrong! This particular liver specialist did absolutely nothing.
I was diagnosed with HEP C about 1991.  About 10 or more years ago I did have a caring doctor who wanted me to go on the Interferon and Riba.  But at that time I chose not to and he was not sure I could make it through it. The mental health thing was a the challenge and unfortunately I have had NO support system and my counts were not high until about 6 years ago things started raising.  I got real sick in Las Vegas where I use to live and started passing out  ad sleeping like I was on drugs and had to take this medicine to keep the ammonia levels down.  That too passed. No one seemed to get it that something bad was going on to the point of the cirrhosis so when I found this out after all this hell I was shocked. My doctor attempted to get the Harvoni but my insurance would not pay for until I did Sovaldi first! But every pharmacist  I have spoken to states Sovaldi works very well.  I have a friend who just got cured last summer on the Interferon and Riba.  So I guess we are all quite unique. I believe the new drug which may eventually take the place of Riba is called  "Daclatasvir"..  I pray I try so hard but I feel horrible but your journey seems to be worse.  I wish this on no one I have gone from being a sweet educator/counselor to a paranoid irritable B!  Take care and I will think about you and pray for your totally recovery and that is when I can pray and not into that crazy dead witch mode! Best for everything.. Victoria

[Lynn K]

Hi again

That sounds like hepatic encephalopathy and you were probably taking Lactulose. It sounds like you may have somewhat advanced cirrhosis. I hope you are under the care of a hepatologist at a liver transplant center in not you need to be.

Do you know your MELD score? (Model for End-Stage Liver Disease)

http://en.wikipedia.org/wiki/Model_for_End-Stage_Liver_Disease

I am a 8 on a scale of 6 to 40 around 13 qualifies for the liver transplant list depending on your transplant centers rules. Although I am not currently sick enough to qualify for a transplant I am still under the care of a transplant center doctor as they are best equipped to care for patients with cirrhosis.

Do you know your Child Pugh score it is another way to determine the severity of your cirrhosis and includes hepatic encephalopathy as a criteria where the MELD does not.

http://en.wikipedia.org/wiki/Child-Pugh_score

http://www.hepatitisc.uw.edu/page/clinical-calculators/ctp

The scale runs from 5 to 15. My score is 6 so I am considered a Child A. Child B is from 7 to 9 and Child C most severe is from 10 to 15.

Also as patients with cirrhosis we are also at increased risk for developing HCC aka heptocellular carcinoma aka liver cancer. We need to have an AFP blood test and abdominal ultrasound performed every 6 months to monitor for possible development liver cancer.

Have you had any upper endoscopies to check for the development of esophageal varicies?

That was one of the first tests my doctor ordered when I was dx with cirrhosis. Three years after I was dx with cirrhosis I developed grade 3 varicies which required me to have 4 upper endoscopies over 4 months to perform banding to prevent a life threatening bleed.

Also upon dx with cirrhosis my doctor made sure I was vaccinated against hep A and hep B as well as the pneumonia vaccine usually reserved for people over 65 as once we have cirrhosis we are of fragile health. I have also been advised to get my annual flu shot as early as it is available for the same reason.

Sovaldi does work well for some patients. Per the prescribing info sheet for Sovaldi
https://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/sovaldi/sovaldi_pi.pdf

For genotype 1 without cirrhosis being treated with the recommended treatment of Sovaldi plus interferon and Ribavirin for 12 weeks the results were 92% SVR in the Neutrino trial results (206 of 225 patients) table 8 page 21

However this fell for patients treated with the same treatment regimen who had cirrhosis to 71% table 9 page 21.

And ref this link from the UW University of Washington Seattle

http://depts.washington.edu/hepstudy/presentations/uploads/92/sofosbuvirmaster.pdf

In the NIH Spare trial (Page 47) for patients with cirrhosis GT 1 low dose riba (less than 800 mg/day) with cirrhosis the SVR rate was only 29% (2 of 7 patients very small study group) I hate to give you disappointing statistics and I am not a medical professional by any means.

Sovaldi Olysio has much better odds than Sovaldi Ribavirin without interferon for a GT 1a with cirrhosis. With 93% SVR for treatment experienced patients with cirrhosis treated for 12 weeks (13/14) and 100% (16/16) for that same group treated for 24 weeks.

http://depts.washington.edu/hepstudy/presentations/uploads/82/cosmos.pdf (page 7)

 Declatasvir is an NS5A inhibitor in the same drug class as Ledipasvir which is in Harvoni a combo of Ledipasvir and Sovaldi which is a NS5B polymerase inhibitor. Ribavirin is in a class of antiviral medications called nucleoside analogues.

Declatasvir is not so much to replace Ribavirin but to reduce the need for ribavirin as it along with sovaldi is very effective without Ribavirin.

Some people did cure with just Interferon and Ribavirin about 50% overall but only about 30% of GT 1a patients. Some folks were very fortunate to have that treatment work for them like your friend. Until as recently as December 2013 that was the only treatment available for hep c: Interferon, ribavirin, and often with Telaprevir aka Incivek

Again I stress I am not a doctor but just wanted to share with you some of the information I have found researching Hep c with cirrhosis Genotype 1a

I know I have given you a lot of info to review please discuss any questions this information may raise with your doctor. I have no wish to undermine the thinking of your doctor what is the best treatment for you and what is available through your insurance provider.

Wishing you the best, good health and beating hep c

[morning_glory]

Victoria -
I'm so sorry you are going through this 

If you have an opportunity try posting under the "On Hepatitis C Treatment". You could even copy/paste your original post, if you would like. You may get even more responses there, as well.

Lynn is a good 'responder' 

I cannot imagine what you are going through and how you must be feeling, I will pray for you.

Blessings,
MG

Don't give up.

[victoria48]

Hi Again Lynn and also MG:  Thank you for your info and concerns.  My issues with Ammonia levels raising was probably the onset of my liver (serious) disease. But it went totally away I got healthy was walking two miles a day and was happy.  But with death in the family and a multitude of stress and heart break my body gave into the virus which I had been able to keep suppressed for years.  No one close to me every got Hep C.  All my major liver test were good until the viral load started creeping about 6 or 7 years ago.  What I resent is this: My generation was not educated and liver disease was made to be a "dirty" disease.  My gosh I had blood transfusions over 40 years ago and remember getting ill losing a bunch of weight and the doctor said "I think you may have hepatitis" I got well and that was the end until the last few years and no doctor really related to me it was all that serious.  As I stated I never ever dreamed I would have cirrhosis since I have about two drinks a year! I am so disappointed in the health care I have had in the last 3 years that could have prevented this.  But fortunately my cirrhosis is not serious not a lot of damage has been done and I can only hope this treatment will stop all. This is feasible but not guaranteed.  In over one year no elevated ammonia. Only once in three years did elevation have me ill.
As I stated my virus load in NO LONGER DETECTABLE but this is not a long term guarantee.  I understand this!  I am not a doctor nor do I pretend to be a scientist but I do attempt to read up on these issues.  Let me mention this: Nine months ago I was in a serious slip and fall and was really injured was put on Tramadol and some  Oxycontin.  Neither of which made me high or feel "cool" but helped alleviate the pain.  POINT: so bad for liver seemingly the worst was the Tramadol.  My friend called and said "OMG that stuff is so bad for liver I went off 100%."  My liver at this point became ill and I started feeling poorly.  I only share all this to say we all have journeys in life and those of us with this Hep C and these drugs only can know what and how difficult this all is. Sadly, we cannot go backwards in life and undo this mess we can only hope and pray for the medicine to work and get as well and or cured as feasible.  For Lynn and anyone else that reads this that has gone through a multitude of treatments my heart goes out because I do not think I can or could .  I am about nuts on what I am on and my personality has changed. Some days I am frightened about getting into some crazy with someone as I am very short fused. I want to be "so called normal" again and not short fused and oppositional and argumentative.  I hate it all.  Best to you and I will be here as I had to purchase a new lap top so I could find others like myself.  Interestingly with all the shortcomings  etc my brains is still sharp and works well.  Have any of you noticed any differences in your thinking and personality?  As I stated in first posting I have had feeling of anger and almost hatred, paranoid etc.  Big mood swings.  Cry about an animal on TV and hate my friends.  Prayed a lot at the beginning of all this but now sometimes feel dead?  They say it can take from one month to a year to get Riba out of your body totally?  Another night of wondering and counting down the days.  Best to MG and Lynn TTYL  Victoria 

[victoria48]

To Lynn:  Hi again:  Yes, I had the Hep A and B shots, flu shot and Pneumonia shot. There was an attempt for the Endoscopy but I had issues with this examine and I am having no issues.  My doctors feel I may have a cure with little damage.  But I am certainly going to ask about the Child Pugh Score.  I did research about the Sovaldi and Hep C 1 A and very high cure rate but no  doubt I will most likely have to go the 24 weeks?  Next weeks blood test will tell a lot as I told you I am now having Anemia and all issues mentioned.  But hanging on a thread and I Thank you so much for your info and I have read much but without research I do not remember all data etc.. Bless you as you are the one that deserves a cure how is it going this time??

Victoria

[Lynn K]

Hi Victoria

I am at week 15 complete with Harvoni and week 5 I think of Riba With 9 weeks of treatment to go. I already mentioned I am currently taking 1000 mg of Riba and anemia status. So far just kinda tired and a little out of breath on stairs. Working overtime this weekend so I will be working 12 days in a row and going on a short one week vacation next week with a long plane flight and multiple time zone change so I do expect that to be a challenge energy level wise then one day to recover and back to work.

I do tend to push myself a bit you could say.

Hang in there tomorrow is another day and every day will get better from here especially when you beat the hep c dragon!

[victoria48]

Hi Lynn         Good Morning:    WOW you are one tough cookie. I hope you will be finally cured and life will be better for you.  Vacation- awesome and I do not know how you handle 1000 MG of Riba? Just ate the big breakfast and took the Sovaldi and 3 Riba. (Day 61)  I will follow up with some info you shared.  Another issue: I now have life like vivid dreams and see those I love and or who are passed away.  I get up in wonderment and sometimes in tears.  Very sensitive now! Familiar?

Have a great Day!

Victoria

[Lynn K]

I seem to also be having strong dreams hard to sleep but topics more mundane like work issues and I have been studying spanish a little on Rosetta stone so I think about that too. Like brain is working on over time.

Guess I would like to dream of my parents sometime have a little chat with them about life

Yeah I dunno how I handle the riba either. I think every day to ask to reduce but trying to tough it out just 9 more weeks to go till May 4th EOT

[victoria48]

Hi Again: Lynn: I have Lorazepam for anxiety or to help sleep and when I do not take I have these way out dreams not really bad but about love in my life and I have full conversations and talk and see them. My son was in one as a child with someone I loved who passed on.  It is interesting how certain medications can arouse, or create such deep mind thoughts/dreams. No doubt there could be worse side effects such as the itching and mood swings and yes the fatigue and depression. 
I know what you mean about wishing to talk with ones parents as one day I realized I needed my parents going on this journey. But they are gone and I am not a spring chicken but that is how bad I was feeling to the point of crying. Have a good day and stay in a post.  Victoria