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Post Info TOPIC: Sofosbuvir and Ribivarin Treatment


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RE: Sofosbuvir and Ribivarin Treatment
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Glad your feeling better Josh. They say "An idle mind is the devils workshop". I suppose the same goes for the body. smile

FSTUED, I was having constipation issues at start of treatment then after extreme increase in my Lactulose dosage, it changed to not being able to go more than 25ft from the toilet. Now I'm back to constipation again. This is getting aggravating!!!

I'm already anemic due to HIV. I'm on day 15 with Sov/Riba (same dose as you) and my 2 week labs were taken today so I may know a little about if I'm going to have problems with it when I see the results tomorrow. I've been keeping the amount of effort I put into exercise down to avoid getting light headed. I'm more comfortable with 'less effort - more time' rather than 'more effort - less time.



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60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

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Hey FSTUED, I've been noticing constipation and indigestion and such as well. Actually my symptoms are starting to subside, I hope it's getting better....Now I just have occasional headaches and lack of energy, but the first 2 weeks plus were real rough. Keep truckin' though, it gets better, today has been alright. I noticed I lifted my little weights a few times and it lifted me out of my depression somewhat. I think not doing anything with my body has really caused a lot of depression.

 



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FSTUED wrote:

Started treatment 7/15/14 so I am 3 weeks or so into it. Noticed minor headaches at the beginning. I see here mention of constipation. I am on the other side of that one I am very loose and when it is time to go I better get a bathroom or sh*t happens. trouble sleeping but I have had that since cancer 4 yrs ago. I am most concerned about anemia Went for a mtn bike ride last week and had to stop about a mile into it felt like I was going to faint. Just don't seem to have the stamina that I use to. I know I am not real strong but that surprised me. Had to just sit there for a few minutes before I could coast back down. Going to try an exercise bike tomorrow and see how that works.
Treatment 1 400mg Sovaldi, 3 200mg Rib in AM and 2 200mg Rib in the evening.


 After the first 3 week i was on treatment, I decided to go trim some of the trees in my yard, So I got my chainsaw and ladder , wound up falling off the ladder and gashing my hand open , I ran out of energy, Be Careful!!!

/We are all in this together Keep your stick on the ice. 'Red Green Show'



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  HCV Genotype 3a , now Psot-Tx was on S/riba. First VL was 5.8 mil on 7-5-13 then "und" at 3.8 weeks. 06/13/14 still und. off meds 3 days back on 7/29 Last pill 08/10/14 SVR+4

 



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Welcome FSTUED:

You are going to have to take it easier than you normally would with exercise during tx.  Moderate exercise is good.  Walks, stretching, light yoga, things like that.  

The only way to know if you are anemic is to have your blood checked.

Ask doc for compatible diarrhea med (it might be OTC but ask before taking anything).  Drink plenty of water.  Best wishes!



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.



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Started treatment 7/15/14 so I am 3 weeks or so into it. Noticed minor headaches at the beginning. I see here mention of constipation. I am on the other side of that one I am very loose and when it is time to go I better get a bathroom or sh*t happens. trouble sleeping but I have had that since cancer 4 yrs ago. I am most concerned about anemia Went for a mtn bike ride last week and had to stop about a mile into it felt like I was going to faint. Just don't seem to have the stamina that I use to. I know I am not real strong but that surprised me. Had to just sit there for a few minutes before I could coast back down. Going to try an exercise bike tomorrow and see how that works.
Treatment 1 400mg Sovaldi, 3 200mg Rib in AM and 2 200mg Rib in the evening.

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Josh

if you're not up to going to meetings because you're sick there are online meetings. Google "NA online Earth Group" I sometimes go online for meetings when I can't make one. Yes, you're going to meet some judgmental jerks in meetings. You do every where you go but you can also find loving people. But the most important thing I can say to you is to take care of yourself. That means sticking with the meds, stay in therapy and stay clean. I don't believe meetings are the only way to stay clean, I've known too many people who do it in other ways to buy that. But what they all have in common is a belief in something greatER than themselves, positive support people, staying busy and productive, help others and count your blessings. But find the way that works best for you. That can mean meetings, church, spirituality or anything else that allows you to stay positive and kind to yourself. This forum can be part of your recovery because here are positive people who want you to make it. Peace brother

gigi



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genotype 2 completed sovaldi and ribavirin on 6/4/14. SVR on 12/3/14



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 I'm with you Josh. Hey, I've ditched several meetings AA & NA for several reasons. No big deal. You'll find what works for you in time. I even did what a therapist suggested, (imagine that), I bought some easy listening CD's. I'm not saying easy listening CD's keep me sober, but for a Hard Rock/Metal lover like me it really helps me chill out and listen to my body. It's just one of many little tricks I use to fight off the crap that makes me want to get loaded. You'll find your own tools in your own time.

Right now the important thing is to not drink and take care of Josh. Don't over isolate or get too lonely, but also don't be anyone's doormat. Screw all the "normal" people who don't understand. You'll find plenty of people that do understand in time. We didn't get in this position overnight, and the solution won't happen overnight. Hang in there. As long as you don't drink-your in the game.

Try not to 'make' sobriety happen, it's one of those things that just takes time. And one day you will look back and see how much progress you have made, and how much you have grown, and it's really much better that way rather than if we could deposit double fare into the coin slot for 2x faster results.

This is all just how I see it and what works for me and sometimes it's still 'One Minute at a Time' for me too. But if that's what it takes, that's what it takes. smile



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60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

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Thanks everybody, yes! I'm glad it is helping everyone. Getting sober is a rough ride and being a youngun I have really had some bad experiences with AA...I think I'm going to try NA...let's just say in some meetings I feel alot of judgement and animosity. I'm trying my best to not let this depression get to me...I know it must be the meds...but they are really making me sick. It's almost like a withdrawal or something. But I have almost 90 days and I know what I need to do...and reach out for love and support but so many people just don't understand addiction, so I almost want to keep to myself, so it's like a catch 22. It's a rough ride and I'm paying the dues of my past. 

 

I am not giving up completely on meetings...can't let a few bad eggs spoil the whole thing. The Big Book set me out on the right path spiritually...I just need to try out some different meetings....It's all just too much and I'm going to therapy and trying to get on the right medicine but I have to be careful of what might set me off. So lately I've just been playing Counter Strike and trying to lay low and stay out of trouble. I sure am lonely tho...if I do find the right meeting maybe I can start to network and have a social life. On top of that I am helping another alcoholic I know (my young friend) who is slowly killing himself and trying to get him to rehab. Which as anyone who has been in the program knows, is one of the most crucial things any addict/alcoholic can do...



-- Edited by jrobertson8919 on Wednesday 6th of August 2014 04:47:29 AM

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Tig56 wrote:

Hi Mike,

Hey bud, I agree that it's great to see you've given life another chance! You've got the right attitude and I hope you know you're among friends. You're on your way to a great future and these new treatments are truly a blessing. Keep your chin up and know your positive attitude and I hope the support you find here and elsewhere helps provide you the confidence to succeed! Good luck bro!

Tig


 Thanks Tig!

 Josh's thread has really turned into an inspiration for me. He, Sherri, Debra and I already have 2 common bonds in the we are all taking Sov/Riba and we all have a history of addiction. Huey is also on this regimen although I'm not sure about any past addiction issues. I feel like I'm among friends with them all already as well as many others on this forum.

Gotta love the 'brain heads' the made the internet possible. I live alone and doing this thing totally alone would be a bear!!! smile



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60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

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Hi Mike,

Hey bud, I agree that it's great to see you've given life another chance! You've got the right attitude and I hope you know you're among friends. You're on your way to a great future and these new treatments are truly a blessing. Keep your chin up and know your positive attitude and I hope the support you find here and elsewhere helps provide you the confidence to succeed! Good luck bro!

Tig



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J

glad to hear you have given sobriety another chance, that's going to make a Hugh difference for your liver. I hope to have 17 years clean and sober this month on the 23rd. I continued using 3 years after diagnosis but then quit. I think quitting is one reason I have a slightly enlarged liver but no other damage. To stay healthy and for your liver to heal you need to stay sober a day at a time for your life. This is going to be the kindest thing you can do for yourself and you deserve it. Glad to know a new brother in recovery. Take good care, stay on your meds and miracles will happen for you. Enjoy your journey.

gigi



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thepoet wrote:

Hello,

I take 1200 mg per day. My doctor explained that it is suggested to take it 2 daily because it can be harsh on the stomach if it is all taken at once. So I drink a nutra blast and have some egg whites, grits and morning star farms meatless bacon and then my meds, followed by 23oz of water. It is obviously working because I've been undetected since week 8, now in week 13 and /I have the unusual g4...hard to treat, but by His grace...it'sa workin'

I read something rather interesting in my Life Recovery Bible, it said, "I made a lot of bad decisions based on a history that I had no control over." That kind of sums up my story. However, now that I know better, I can do better. I must treat my recovery like a new born baby, I must protect it, feed it regularly, keep it close to my heart and let NO ONE take it from me.

It is amazing what we can accomplish when we stop beating ourselves up with substances and allowing others to beat us up with their words and actions. At 56, I'm applying to graduate school...Hey...He gave me another chance at life and I'm gonna make the most of it.

Have a great night all!

 


 Thanks Debra. Last January all I cared about was making sure I had enough $ for alcohol etc. Not much thought was given to what bad shape my liver was in, and my will to live was all but lost. Then, when I was hospitalized I made a decision to give sobriety one last try. I knew this was my last chance. Then after the intitial withdrawal crap I started to recovered somewhat physically, my mental attitude also recovered and it was like I was re-born. And today I realize how precious this life is, and I certainly want to live the rest of it taking care of my body rather than putting it through more of the hell from so many years. I'm historically a junk food, fast food junkie and I'm so surprised to see myself preparing very healthy foods without any of the harmful spices etc. and liking it!!! That's certainly a first for this 'new born baby'.

Have a great day! smile



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60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

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jrobertson8919 wrote:

Hey all, checking back in. I'm on day 18 and just went to get some bloodwork done and reported the side effects to the nurse. Didn't feel so depressed today but have been having wicked headaches...The last week or so has been so rough. 


 Did your nurse not have any suggestions etc. for you for side effects management? I wish I had a trick or 2 for you to try, but I don't. My headaches were only for the first few days and quickly went away on their own. Some other Sx's are long gone or are working themselves out. I'm only on day 14, so I suspect you will also see some of your Sx's go away as time passes. I'm just getting some relief a little faster than you.

Hang in there Josh. We're going to slay this dragon together.



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60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

Mike

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Hi jrobertson:

Regarding the headaches:  Drink lots of water.  Also, another member got headache relief after he started drinking coffee.  I would give that a try also.  

The virus isn't "killed" in 2 weeks.  It becomes undetectable during tx.  That can happen in 2 weeks, 4 weeks, or longer for some, but most everyone will become undetectable on Sovaldi.  You aren't considered free of the virus until you are still und 12 weeks after treatment ends.

Good Luck! 



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.



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Hey all, checking back in. I'm on day 18 and just went to get some bloodwork done and reported the side effects to the nurse. Didn't feel so depressed today but have been having wicked headaches...The last week or so has been so rough. 

So if the virus is usually killed in two weeks, why is it a 3 month treatment? Because of virus rebound or something? 

Thanks for everyone chiming in! 



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Hello,

I take 1200 mg per day. My doctor explained that it is suggested to take it 2 daily because it can be harsh on the stomach if it is all taken at once. So I drink a nutra blast and have some egg whites, grits and morning star farms meatless bacon and then my meds, followed by 23oz of water. It is obviously working because I've been undetected since week 8, now in week 13 and /I have the unusual g4...hard to treat, but by His grace...it'sa workin'

I read something rather interesting in my Life Recovery Bible, it said, "I made a lot of bad decisions based on a history that I had no control over." That kind of sums up my story. However, now that I know better, I can do better. I must treat my recovery like a new born baby, I must protect it, feed it regularly, keep it close to my heart and let NO ONE take it from me.

It is amazing what we can accomplish when we stop beating ourselves up with substances and allowing others to beat us up with their words and actions. At 56, I'm applying to graduate school...Hey...He gave me another chance at life and I'm gonna make the most of it.

Have a great night all!

 



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DJ...dx 2005...geno 4c...twice interferon/riba failure....completed 24 weeks Sovaldi & Riba on 10/18/14....SOT VL 600,000 after 16 days VL <43. Day 45 <43 again. Day 59...8 weeks UNDETECTED.

Happy and grateful to God for new life....



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thepoet wrote:
 I struggled with addiction for many years and am grateful to say that I am now sober 8 years YAY!!!! It is amazing how our lives change when we decide to give ourselves a break from the insanity of addiction...and begin to learn to walk in healthy living. God bless you on your journey.

 So true! I don't comprehend what I read very well and missed that the first time about 8 years sober. That's awesome! It makes my little 7 months look small, but the principal still applies. In January I didn't care if I lived or died. Today I cherish my life and enjoy every day that I'm alive in some way or another. Sometimes, considering all the near death experiences my lovely addiction put me through, I just enjoy being alive.

I too am glad you made peace within yourself about your mom. That's one of those things only accomplished by living sober, and the result of going through some tough growing pains especially in early sobriety, but walking on through it all. I can't imagine because I was very well loved and cared for by both of my parents until my early teens when my fathers alcoholism tore our family apart.

________________________________________________________________________________________

thepoet wrote:

My main side effect is insomnia, so with my doctors consent, I take all of my meds at 9am everyday, which allows me about 5, 6or even 7 hours of sleep on a good night. Otherwise, I was getting about 2 or 3 hours of sleep and that made me crazy as heck.

_________________________________________________________________________________________

 

Can you explain more. I ask because I was told that it is important for me to take my meds 12 hrs apart, and the same time every day, so I do Sov/Riba @ 8am - Riba @ 8pm? What dosages are you on?

_________________________________________________________________________________________

 

roulette wrote:

i too never felt my mother's love, to this day she is all about herself, she **** on my dad and never looked back... he didn't deserve the treatment she dished out, no i haven't forgiven her for anything she did or allowed to happen in my life, she never noticed how her actions or lack of affected those around her

________________________________________________________________________________________

Once again, I can't imagine. Bless your heart, both of you. I turned out really bad, tearing through the lives of those who loved me, going years sometimes living on the streets without even 1 phone call to let my family know I was alright etc. etc. If I would have grown up without a loving family, like you both did, I'd likey be in prison for murder or some crazy crap - or dead.

Wow. no

 



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60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

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thank you to all who respond and share themselves, i find this small group ~ i'll call friends ~ very comforting, especially those of you who understand the importance of parents, I love and miss my dad so so much, i carry such guilt stands in the way of happiness, don't feel worthy as long as he is suffering ~ and to the poet, i know exactly where you are coming from in reference to you mom and the relationship there never was..... i too never felt my mother's love, to this day she is all about herself, she **** on my dad and never looked back... he didn't deserve the treatment she dished out, no i haven't forgiven her for anything she did or allowed to happen in my life, she never noticed how her actions or lack of affected those around her. to the poet, you are a bigger better stronger person than i am thank you to the one who sent me a link for the abbreviations, maybe i will school myself tmrw, be well everyone, time to rest

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Since the Saturday before Mother's Day, my mom has been in the hospital in SC. I live in NY. I have been down there twice since this ordeal began and I have another trip scheduled for Aug 20 - Sept 10. The amazing thing is that for most of my life, my relationship with my mother was tumultuous to say the least. However, God in His mercy gave me a moment of clarity regarding my mother about three weeks before she got ill. I saw her in her true form, not as I wanted her to be, or with the attributes that I wanted her to have. I saw her for the true person that she is. I realized at that moment that I was wasting my time and energy trying to get her to love me and accept me the way that I needed. I realized that I was no longer the little girl who needed those things from my mother, and that I could get them from others. It doesn't make sense to keep going to an empty well looking for water. I can guarantee you that had I not had that moment of clarity, I would not have been to SC to see her as I have. I am also, with my daughter and aunt, taking care of advocating for her, all of her paperwork and I will be there to take her home on Aug 20. This is all a miracle. I no longer hate or resent my mother. I know that her life is coming to an end and I cried and was depressed for about 5 weeks. Then I realized that I had to get myself together so that I could take care of me. I want to do the best that I can to make her last days as peaceful as possible.  I have always heard it said in AA that our parents did the best they could, but I never wanted to understand that. The fact is, my mother truly did the best she could with the information that she had and also with what was given to her as a child. How can one give love if one has never had love. I am grateful that my dad, who died when I was 8, gave me love and taught me that I was someone special. Even in the midst of my addiction, that light of hope that he placed in me, continued to live. I am so grateful that I can be there for my mother and to perhaps show her the kind of love and compassion that I wanted her to show to me. Praise Jesus for giving me wisdom, love and a new heart. Have a great day!

 



-- Edited by thepoet on Wednesday 30th of July 2014 06:20:19 PM

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DJ...dx 2005...geno 4c...twice interferon/riba failure....completed 24 weeks Sovaldi & Riba on 10/18/14....SOT VL 600,000 after 16 days VL <43. Day 45 <43 again. Day 59...8 weeks UNDETECTED.

Happy and grateful to God for new life....



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roulette wrote:

____________________________________________________________________________

"My father is in Albq, Hospice, Alzheimer's, no funds to go see him, I live in FL, this is my true source of depression.  Speak to Dr's about my source of depression ~ one Dr (cold female) advised me "everyone passes - we play the hand we are dealt and move on".... wow, I wanted to run.  

Spend time with your parents every chance you have, my father was my best friend, I miss him so"

 

____________________________________________________________________________________

 I feel you sherri. I have shed more tears the last 2 days than I have in many years, and about just that - family, or rather the lack of; I have so much regret and inward resentment because I was not there for my mother when she was fighting cancer in 1994, nor my father when cancer took him in 2007. my last living family member, my sister, is still alive living in Ocala FL and I really want to be close to her at this point in my life. She has advanced rheumatoid arthritis and has way more than she can deal with trying to keep up what's left of her horse farm.

Sounds like you need to fire your doctor. The last thing we need is to hear negative input that trashes what little hope we sometimes have. We tend to be hard enough on ourselves without added negative crap from callus Dr's.

I wish I could help with transportation to Albq for you. I know how important it is to you. Bless your heart!

--------------------------------------------------------------------------------------------------------------------------

 

Groupergetter wrote:

__________________

You're so right about spending time with those you love. My mom just turned 88. I care give for her when not working full time.  It can be frustrating and at times difficult. She took care of me when I was a youngster and I'll take care of her as she ages.

________________________________________________________________________________________

Good for you for being able to spend this time with her. I now wish so much that I would have done so when I had that chance. My mom always took excellent care of me with much love, as did my sister, my best friend! smile

And thanks for the link to Malcolm's forum abrev list. Tig56 linked me to it a few weeks ago and it really helps understand the discussions better.

---------------------------------------------------------------------------------------------------------------------------

 

beingsassy wrote:
The side effect to watch out for is anemia so I hope your labs are being tested frequently. Anemia can also cause fatigue so you might ask your doctor how your blood platelets are doing. Report all you side effects to your doctor and post here for understanding and compassion. This medication combo is not that bad but people do get bad side effects. Watch out for nausea, rashes, rage and depression since they can also occur.

Gigi


 


 Thanks for that information Gigi. After I found a solution to constipation issues, my ribarage symptoms went away. Permanently I hope. But depression is kicking into overdrive and I suspect this to be more than just my normal low cycle of bipolar disorder. And I certainly have '0' energy. I'm anxious to see what my results are when they do my first labs 8-6-14.



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60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

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Welcome Josh

i was on sovaldi and ribavirin for 12 weeks, still waiting for my final labs in Dec. I am undetected. I also had fatigue which hasn't completely gone away. I only had headaches the last couple of days. The side effect to watch out for is anemia so I hope your labs are being tested frequently. Anemia can also cause fatigue so you might ask your doctor how your blood platelets are doing. Report all you side effects to your doctor and post here for understanding and compassion. This medication combo is not that bad but people do get bad side effects. Watch out for nausea, rashes, rage and depression since they can also occur. My worst one was hair loss. My hair was over processed so instead of light hair loss I had bad hair loss and ended up shaving my head. That turned out well since my new hair is healthy and thick. There are lots of people on this site who have taken or are currently on the same treatment. However, most of call sofosbuvir by sovaldi. Same thing. Search using the word sovaldi and you'll find tons of info. Good luck. Hey, whats your genotype and how long will you be on the meds? 

Gigi



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You're so right about spending time with those you love. My mom just turned 88. I care give for her when not working full time.  It can be frustrating and at times difficult.  She took care of me when I was a youngster and I'll take care of her as she ages.   Go here:  http://hepcfriends.activeboard.com/t51085702/forum-abbreviations/  for list of what abbreviations mean.  Scroll down     Good luck in your tx    Be well



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1b  Int/Riba relapse @ 48 weeks.  Stop tx Peg Int/Riba 12 weeks ill. Relapse S/O 6/23/14 :(   Started Harvoni 11/12/14  EOT 4/28/15.  EOT+4 UND :)  SVR! 8/4/15  :)     Thankful for every morning.



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Good evening, day four of treatment, side effects, fatigue and foggy brain...............   will someone please explain all the abbreviations on here?

I have no idea what any of them meandisbelief I think

I have figured out tx means treatment, past that, no clue.

Hope everyone is well as can be and trying to maintain positive thoughts.  

My father is in Albq, Hospice, Alzheimer's, no funds to go see him, I live in FL, this is my true source of depression.  Speak to Dr's about my source of depression ~ one Dr (cold female) advised me "everyone passes - we play the hand we are dealt and move on".... wow, I wanted to run.  

Spend time with your parents every chance you have, my father was my best friend, I miss him so. 



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sherri


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Welcome Josh and Sherri. I'm pretty new to all this too. I'm also on Sovaldi/Ribavirin, Tx day 5 today. My dosage = '1 Sovaldi 400mg and 1 Ribavirin 600mg AM / 1 Ribavirin 400mg PM'. I have no really noticeable side effects so far other than irritability (okay, maybe borderline Riba-Rage lol) and constipation, which I suspect may even be caused by my also-new HIV Rx's only. But I have already gone through some of the same side effects as your describing when I started HIV Rx's years ago. If I remember right, most of those side effects went away. Some gradually, some quickly. Or either I became accustom to feeling like that. I guess a little bit nauseated became my new 'norm'. I wish I could be more helpful but although our HCV Rx's ("med sets") are the same, our circumstances are different in some ways and also treatment side effects/symptoms vary for each different person.

I am also a former alcoholic / drug addict for 42+ years until I quit it all this past Jan 11. I did manage to get clean/sober in AA/NA twice for 2 years each, 1985 and 2001, along the way, including 17 inpatient alcohol/drug rehabs. But my commitment is much more solid this time and the alternative to sobriety is staring me in the face rather than being a few years in the future.

I have a long history of psychiatric issues/hospitals too, mainly Bipolar.

You picked a great forum for information. This place is packed full of helpful members with accurate, 'been-there, done-that' experience as well as a Dr. with all the professional information that you'll likely be asking about.

So, I look forward to following both of your progress as we trudge this road to happy destiny together.

SVR, here we come!!!



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60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

Mike

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I went out in my yard, week 2 of tx, feeling a little tired but was just going to endue it, well I got up on a ladder to cut a branch with a chain saw, Fell, gashed my hand wide open, I then ran up the hill about a 6 degree incline to my kitchen and never thought to breath the whole way, wound up hyperventilating, and passing out, had to call 911. I came too before they got there but had to go to urgent care and get stitches.

Dont let it fool you, you will run out of energy and just drop.  it is that bad.  You Must take it EZ and Stay out of the sun.



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  HCV Genotype 3a , now Psot-Tx was on S/riba. First VL was 5.8 mil on 7-5-13 then "und" at 3.8 weeks. 06/13/14 still und. off meds 3 days back on 7/29 Last pill 08/10/14 SVR+4

 



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Hiya's guys and girls.

First off if your taking ribavirin 2 pills and then 3, I would take the 3 in the morning and 2 at night so it has less of a chance of keeping you up. (ask doctor first) I was on 3 in the am and 3 in the pm. I know the ribavirin reacts with the sun heat and sweat, rash wise. I'm in Florida also so I know about the heat. I tx-ed in it all last year. (old triple tx 48 weeks) The anxiety can be a side effect. Watch it with the exercise the rapid heat beat can be a sign of the start of anemia. But exercise is good. I really can't give a lot of advise on your tx because I was on the old one but I do know about the riba. I hope I don't get to try the new drugs.biggrin 

Stay strong guys and girls its worth it!!!



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Geno 1a null responder 2004 inter/riba   finished incivek,peg/riba 48 weeks May 17th 2014. undetect weeks 4-12-32.  EOT+7 undetect. EOT+24 SVR!!!!! EOT+!YEAR SVR!!!!



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Huey, Josh and The Poet,  I can't tell you how much I appreciate your responses and sharing your experiences - I find myself in a daze, like what just happened here hmm  I guess as long as I was seeing my Dr twice a year, HepC wasn't looking me in the face on a daily basis; with the meds I find I now have to face "it" along with the many other stresses in our lives.  I have a son in his last year at UCF and a daughter who is the mother of a beautiful 4 yr old girl, my only grandchild.    I work full time and also am taking a class on Tues for which I never can find the concentration to study.

Went on a bike ride today in the hot sun, when I returned my heart was beating out of my chest, no where does it say not to exercise, has anyone experienced a reaction to exercise?  No where have I read to stay out of the sun either, I am not one to "lay in the sun" however I do love being outside.  

I wish all of you to be rid of this virus, such a stigma placed on it, I plan to check in daily, your posts today picked me up more than you know.

Sherri



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sherri


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Hi,, I could not respond earlier , The side effects of the Sovaldi does is minimal, it is the Riba  and The virus that makes you have these side effects, The ones you notice anyway. Taz and others have already told you what goes on, They have been there too so they are right on, as I am.
I can not say that the side effects I had will be the same or even similar with 100% assurance that I am correct, Everybody is different. I can only tell you what happened to me and go from there.
What I experienced was a Sugar spike, As my Liver Enzymes went down, my sugar went up. This was during the RVR or rapid viral response. RVR is something they used as an indicator with the old Inf/Riba treatment. I is not relevant any more to the Doctors but i use it here to help explain the effects I had. This RVR happens in the First Two weeks of Tx.
I am taking the ATL level as an indicator of the virus presence however this too is not entirely accurate . So I thing that the virus was trying to do is massively replicate as the Sovaldi did it's job, this caused it to damage a lot of cells at once and I started to feel like a diabetic
The virus kills or makes sick ,the mitochondria that process the sugar into energy. This causes insulin resistance and in genotype 3 like I have this effect is to the point of hypoglycemia. {The insulin resistance thing is still out in the open, and Malani the one medical professional we have on this forum does not agree, I do have reliable documentation from a trusted source of this but he does too, and his is opposite to mine.}
In conclusion, when you first start you have a lot of virus, this virus fights back and you feel it. The more virus you have the more you feel it, but in two weeks it is gone. The virus is now not numerous enough to cause these side effect so strongly. The worst of it is the first two weeks.
Here is a graph of my test showing the sugar going up as my ATL went down;

Notice that the sugar goes back down after the spike at the end of two weeks.



-- Edited by Huey on Sunday 27th of July 2014 11:58:12 AM

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  HCV Genotype 3a , now Psot-Tx was on S/riba. First VL was 5.8 mil on 7-5-13 then "und" at 3.8 weeks. 06/13/14 still und. off meds 3 days back on 7/29 Last pill 08/10/14 SVR+4

 



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Hello and welcomesmile.

Today I begin week 13 of 24 on Ribavirin and Sovaldi (Sofosbuvir). My main side effect is insomnia, so with my doctors consent, I take all of my meds at 9am everyday, which allows me about 5, 6or even 7 hours of sleep on a good night. Otherwise, I was getting about 2 or 3 hours of sleep and that made me crazy as heck. I get the headaches from time to time, but I just drink more water to keep myself hydrated and maybe take an Advil and the pain is gone. I find that the sides are cyclical. There are days when I'm energetic and hopeful and then it seems as though so much of the medicine is concentrated in my system and I get the "Riba Rage." However, like I said, the symptoms do not last very long. I've come down with the rash a couple of times on my arm and neck, when I/'ve been in the sun too long. I/ try to avoid it as much as possible. I go from one side of the street to the other, chasing the shade LOL. All in all, these side effects are mild compared to the old treatment regimen of ribavirin and interferon...now that was heck and the possibilities for cure were much less than they are now. I admire your drive to leave the substances behind you YAY!!!! I struggled with addiction for many years and am grateful to say that I am now sober 8 years YAY!!!! It is amazing how our lives change when we decide to give ourselves a break from the insanity of addiction...and begin to learn to walk in healthy living. God bless you on your journey.



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DJ...dx 2005...geno 4c...twice interferon/riba failure....completed 24 weeks Sovaldi & Riba on 10/18/14....SOT VL 600,000 after 16 days VL <43. Day 45 <43 again. Day 59...8 weeks UNDETECTED.

Happy and grateful to God for new life....



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I haven't heard much about it...I've heard of riba rage or whatever haha. I understand...just googling it is hard and trawling through all the post to find someone on your same med set is hard. I'll try to give it a day by day so to speak. I'm so glad my medicine got covered and thankful for the new advances in modern medicine...I made alot of mistakes and played around with needles and didn't think thre'd be any long term effect. So I'm paying my dues killing it and getting my life straightened out. I'm about to be 25 on August 1st, I'm from Winston-Salem, North Carolina. 

 

Really the only side effects are the fatigue, headaches when I wake up, lack of energy, changes in taste, and not having any appetite and sort of feeling queasy. I know Zofran is a good nausea and anxiety med but I'm already on so much stuff, I'm taking more pills than I was before I went into rehab. Benzos and alcohol were really bringing me down, I've been through treatment quite a few times...been trying to get my AA business set. I really need to go see my GI doctor soon, haven't heard back. But it's definately working it's magic.



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Josh (j dubs)



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ty so much for sharing  it's hard to talk to healthy people about the unknown and known side effects, i need to know  someone cares and understands my stance on all this, have you or someone you know had the "rash" everyone speaks of?   where are you located?



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sherri


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the riba will make u feel like u have NO energy. I worked full time but had to push on.. good luck to u!! kudos to u for trying to get well.. we are behind u all the way.. i also had the interferon shot. whew. my weekends consisted of being on the couch. lol   this time they dosed me with 3 riba a day. i had done  6 treatment b4 but was too much. so it worked for me to do one in the morn with sovaldi & 2 at night. but just do what doc says. this is what my doc recommended to me based on past treatments. which was 3. whew.

Taz

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TazKat Genotype 1A null responder x 3 riba & iterferon twice, relapsed from Incivek 2012 with only 12 weeks left to do. stage 4 mild cirrhosis 4/25/2014/ started sovaldi riba & interferon.. finished treatment 7/17/14  results 7/25  cleared..

 

 



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It's 200mg Ripashere (Ribivarin) 3 tablets in the morning and 2 at night. The SovalidI (Sofosbuvir) are the 400mg once a day. I didn't really start noticing the symptoms as much until day 5 or so. No, I'm not working, I just got out of a 28 day treatment center plus their halfway house (so around 40-some days). I also got my wisdom teeth out and the painkillers they gave me almost set me off again, but I got through it. So on top of that I started this treatment a few weeks after that. I can't imagine working on this stuff. I can barely stand up. I wonder if there's any drugs for the side effects? I'm only on Pregabalin for anxiety and Seroquel and clonidine for sleep.



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Josh (j dubs)



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hi josh,  i started riba and sovaldi today, in fact the only pills i have taken today are 2 riba, supposed to take 3 more riba tonight, and one sovaldi 400mg before bed, per my Dr's nurse to minimize the side affect she suggest taking before bedtime.

After all I have read I am terrified of the side affects, almost immediately after taking the riba this morning i had a headache, back spasms and just felt bad,  are you working full time during treatment?

So this is my day one and your day eight, i am in florida and would like to hear from you as often as possible,  to be honest, i don't know if i can do this, anxiety is and always has been a major condition with me, this just makes me worse,  i have always had a substance abuse problem as well, this just sucks



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sherri


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Hi all, I'm new here and I'm Josh from North Carolina. I have strain 2 of Hepatitis C and my GI doc prescribed Sofosbuvir and Ribivarin. A company called Avella Speciality Pharmacy in Arizona filled my medicine and it was totally free through a nonprofit organization (which I'd have to find the name of). I am currently 8 days into treatment. I will post here my progress after I go back to the GI doc.

Well, they say the side effects are non-existent but I have felt very bad. I have no energy, very sluggish and weak, and wake up with headaches (like a vice grip on either side of my head). Also there are changes in my taste (metallic) and my appetite has been poor. Can anyone chime in about the side effects they've had from these? I've read a few day by days on forums but couldn't find any for this medicine set. I just wonder if it gets any better? Because I can hardly function like this. I'm coming off a long history of substance abuse and am trying to get over this and move on with my life.



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