Progress Update: Week 2 Sovaldi/Ribo

[Pelham123]

Just got my labs back from Week 2.   Amazing: ALT is 42 and AST is 28.   Those crazy enzymes were 398 and 218, 6 weeks ago.   

Bilirubin went from normal to elevated: 1.3.   Sovaldi literature says Bilirubin and Creatine do go higher in the beginning of treatment.  It should normalize when treatment is stopped. 

I am having problems staying asleep.  Other than that, no other side effects. 

On to Week 3 ...

[wordforthewise1]

Hi, I am new to this forum and I am so thankful you guys are here.  I will start the s/o treatment for 12 weeks on Monday, August 18, 2014.  I am genotype 1a, my viral load is in the 1,300,000's and my liver is stage 3-4, fibrosis.  I got hep C in 1983 from blood transfusions, but didn't get diagnosed until 2003 when I started getting really sick and struggling to do my job as a school principal.  (I have appreciated the discussions about the brain fog, I have it badly.). Anyway went on disability, still on it.  I treated on interferon/ ribaviron twice (2004 and 2005). Both times nearly killed me and Had to be hospitalized both times.  I did clear the virus both times, but it came back.  Long story short, I can't tolerate interferon or ribaviron, I thank God for this new treatment!  I am still shocked that my insurance approved to pay for this new treatment, and PAN will pay all my co-pays.   You guys are an inspiration for me.  I've been reading your post all night and now feel more hopeful of being cured from 31 years of hep C!  Please keep me in your prayers as I begin the new treatment, I will certainly keep all of you in prayer also!   This is so exciting!!!

Sharon

[virgha828]

Hi wordfor

Its amazing to actually see this day in our  lifetime! A very high cure rate is exciting. I also  was exposed through a transfusion  in 1984 but i am on s/r starting second week.

Good luck to you ! Keep posting !


Keeping the faith....Virginia

[virgha828]

Hi pelham,

Wow what a difference in your alt ast!  This is great news!!  Keep posting your progress its definitely giving hope.  If your having itchy due to elevated billirubin  or any rash i read  somewhere on the forum to try a creme called Sarna.

As for sleeping i read melatonin, as you can see i havent tried it yet .

Keeping the faith... Virginia

[DesertGuy]

The more about the brain struggles, that I read about, are helping me understand the past few years.  Being a principal--bet that was a handful. I was a big box retail manager, and the struggles and confusion in my head became so hard--that it was obvious to others and led to my being fired. And now at week 6 the haze really is lifting.

[Pelham123]

Thank you, Virginia!   I'm not itchy yet from the elevated bili, but my mouth is getting sores and I wake up at night with extreme dry mouth.  I'm avoiding tomatoes/spicy food or it burns my tongue.  Nurse said it's a side effect of the Ribavirin.  Hope it stops being so sensitive.

Here's the good news:   A red spot on my face, that I thought was a pre-cancer, is clearing up!!   I heard from someone else on Sovaldi/Riba that she had spots on her face that went away, too.  It's a harsh anti-aging treatment, but, hey!  I'll take all the good side effects I can get.   

[wordforthewise1]

Thanks Virginia for the encouragement and I pray the best for you too.  Yes we are making medical history!!! 
Dersertguy yes being a principal was a handful, I only lasted 4 years but with a good staff really did accomplish a lot, maybe not in the easiest or most logical ways possible, but many great things happened at the school.   Sorry you lost your job, many people really don't understand how hep C affects you, in fCt, I'm still learning.  Blessings, blessings to all.

Sharon

[virgha828]

All i can say pelham is so sorry and wow!  I havent read anything about what to do for mouth sores. I know  of a numbing mouth rinse that may help although i don't know the name of it and truthfully ive used it a time or two over the years for sore throat as a gargle and it's pretty icky.  If you are in allot of pain the benefit will make it tolerable. Ask your doc.

As for ant i aging, I'm all for it!!! bring it on! Getting rid of that is a great side. Hope to here more about the good ones.

Everyone have a side free Saturday......

[badbradley]

Hi, I am new to this forum and I am so thankful you guys are here.  I will start the s/o treatment for 12 weeks on Monday, August 18, 2014.  I am genotype 1a, my viral load is in the 1,300,000's and my liver is stage 3-4, fibrosis.  I got hep C in 1983 from blood transfusions, but didn't get diagnosed until 2003 when I started getting really sick and struggling to do my job as a school principal.  (I have appreciated the discussions about the brain fog, I have it badly.). Anyway went on disability, still on it.  I treated on interferon/ ribaviron twice (2004 and 2005). Both times nearly killed me and Had to be hospitalized both times.  I did clear the virus both times, but it came back.  Long story short, I can't tolerate interferon or ribaviron, I thank God for this new treatment!  I am still shocked that my insurance approved to pay for this new treatment, and PAN will pay all my co-pays.   You guys are an inspiration for me.  I've been reading your post all night and now feel more hopeful of being cured from 31 years of hep C!  Please keep me in your prayers as I begin the new treatment, I will certainly keep all of you in prayer also!   This is so exciting!!!

Sharon

Hello Wise,
         Been wondering how you're doing! Havn't seen you around for some time. I started S/O 1 day after you-Aug 19. I also have had the virus since 1983 - diag. 1/2012. Just thought I'd say Hey and Happy Thanksgiving.          Brad

[Doluska]

Happy Thanksgiving to all American fighters! We going to think about our family and future full of healthy and happy days! I am a Canadian nurse, who is on week 6 of S/O plus RIBA. First weeks were tough, but now it is a bit easier. Unfortunately, I am considered a "slow response", cose my enzymes still not normal after week 3. I didn't have a brain fog before starting the treatment, but I suddenly started psoriasis and my thong was very soar, and I have those red spots on my face. Dermatology doc. And dentists told me that it is immune hyper reaction, and I am pretty sure that this is from virus, traveling in my body and having a good feast there.  It is time to stop it, and do what I should do, in porpoise to kill it! Doing this in Canada is not so easy, we don't have all the resources, that U have, but we here don't have a choice, as well as you, guys. Good luck and keep going! My support to all family's and friends, who are standing by us and helping us in thiis jorney! D

[gulee]

Hey, Doluska,

I have "grown" some white spots on my face that people try to brush off as food crumbs. I tolerated the treatment side effects pretty well for the first nine weeks and then it got a lot worse, mostly insomnia and anxiety, after the 9th week. My doctor prescribed me some pills to help my anxiety and sleep, and I have only two more weeks to go...

Good to have you here, I am pretty new to this wonderful forum myself. Please post your progress and let us know how you are doing often. I pray for the successful cure for you and everyone who chose this exciting, sometimes agonizing, journey here!

Last night at Thanksgiving service our preacher shared this verse with us, "In everything give thanks!" Happy Thanksgiving to you and your family, Doluska!

Happy Thanksgiving to all American fighters! We going to think about our family and future full of healthy and happy days! I am a Canadian nurse, who is on week 6 of S/O plus RIBA. First weeks were tough, but now it is a bit easier. Unfortunately, I am considered a "slow response", cose my enzymes still not normal after week 3. I didn't have a brain fog before starting the treatment, but I suddenly started psoriasis and my thong was very soar, and I have those red spots on my face. Dermatology doc. And dentists told me that it is immune hyper reaction, and I am pretty sure that this is from virus, traveling in my body and having a good feast there.  It is time to stop it, and do what I should do, in porpoise to kill it! Doing this in Canada is not so easy, we don't have all the resources, that U have, but we here don't have a choice, as well as you, guys. Good luck and keep going! My support to all family's and friends, who are standing by us and helping us in thiis jorney! D

[wordforthewise1]

Hi Brad,
Happy Thanksgiving to you and to everyone here!  Thank you Brad for thinking about me, I finished treatment on Nov. 9, and my latest labs (and 4th week labs on) show the hep C virus is Undetected - GONE, my other labs are in range, even my cholesterol levels are good (used to be on the high end).  I began feeling the brain fog lifting in spurts last week, now my thinking (mentally processing) is so much more clear, bet my IQ went up some, LOL!  My joint pains are fewer now, but I'm still sensitive to the sun rays but getting less and less.  My children have noticed how much more "alert" I am too.  Overall, I feel pretty good and I thank God for it all! 

Praying all is well with you, please let me know how you're doing.  And to all who are on the journey to "freedom and a new life without Hep C, you're going to make it, take one day at a time, you'll get there!" 

Hey Brad, I was wondering if you or anyone else has experienced the "alertness" after ending your treatment?  Mine was 12 weeks of s/o, treated unsuccessfully on interferon twice in 2004 and 2005, just wondering what it's like for you guys afterwards???

Well God bless you all and enjoy your holiday!

Sharon

[wordforthewise1]

Hey Brad and everyone there's one more thing I wanted to mention..

It's been years since I've had clear, vivid dreams, but since my 8th or 9th week of treatment I have been dreaming again and my dreams are even more vivid,  full of color, it's wonderful!  Maybe I'm just sleeping deeper, not needing as much to help me fall asleep now. 

Is anyone else experiencing anything similar during or after treatment, just wondering???

Sharon