Author Topic: Genotype 3, Sovaldi and Ribavirin for 24 weeks (Read 291454 times)

CE · « **on:** November 20, 2014, 07:13:48 pm »

I am a 60 yr. old female and I was diagnosed with HCV in July this year after my doctor found my liver enzymes elevated (ALT 170 and AST 106) with a routine blood test. This just blew my mind! Never in a million years would I have thought I had this. I either acquired it in 1978 or 1988 with blood transfusions after childbirth. I am genotype 3 (yay, of course it has to be the worse one!), and my viral load was 950,000. I started treatment Nov. 1st with Sovaldi and 1200ml Ribavirin for 24 weeks. I am about to complete week 3. At week 2 my ALT was down to 57 and AST down to 43, and my viral load dropped to 667! I really had no symptoms until 3 days ago. I had a low grade fever (100) and just felt cold and achy like I was getting sick. Fever was gone by morning, but then my chest hurt sporadically in different locations and my heart felt jumpy! That is gone now, but I still get chilled easily and am feeling more tired. When I think back, there were signs in my health that make sense now. I suffered anxiety and panic attacks, I would get unexplained rashes and hives, along with other "weird" ailments! I am so very determined to rid my body of this evil. I just hope that this treatment works on my genotype the first time. I was fortunate to have insurance that covered the majority of it and a co-pay assistance for the remainder. I work full time in a hospital materials management, and I have to remain sharp! I hope I can persevere with the side effects and become SVR by next July. I am thankful to have found this forum. Reading the experiences of others is very comforting and provides hope. I thank God everyday for my family and many blessings and pray for strength to endure. It will be a long winter! God bless all!

Doluska · « **Reply #1 on:** November 20, 2014, 07:34:57 pm »

Good luck with your treatment! I am week 5 with Sovaldi/olysio and Ribaverin. It is not an easy jorney, but we need hope to continue and support from our close circle! This forum is very professional, optimistic and supportive. You are in the right place! D.

zeena · « **Reply #2 on:** November 21, 2014, 09:26:01 pm »

hi c.e.
today i took my last pills of 24 weeks.drink plenty of water, and exercise. i have never felt the immediate mental reward of deep breathing an d exercise, like i have felt while on these drugs.these last couple of weeks i have been on intermittent fmla, i am in sales and just a little support helped me with stress, and my memory loss from the pills.the interesting thing is, a memory of self is getting stronger than its been for years.paranoia, and anxiety has plagued me for years getting stronger as my viral load skyrocketed.now, i remember things with less emotion and being 56, am forgiving myself for silly mistakes until these pills are out of my system with the hep c.most importantly, evercise will help with aches and pains. drinking volumes of water and soups as my doc would say, helps with dehydration which can cause utis which can cause low grade fevers, which i had in the beginning. anyway i worked overtime for most of these months , but needed to slow down at the end, you can and will DO THIS!!! GOOD LUCK and post your fears and successes.we love to share...i am a girl too.

CE · « **Reply #3 on:** November 21, 2014, 10:10:17 pm »

Thank you Doluska and Zeena for your encouraging words. I just refilled my week of meds. Amazing how each day of meds means a step closer to being healed. I have been drinking so much water, I know I must have resized my bladder! Lol!
Good luck to both of you, too. Zeena, congrats on completing your course. Keep posting to let us know how you are. Hope you get the best news there is to hear in a few months! Take care.

Francis60 · « **Reply #4 on:** November 22, 2014, 03:31:45 pm »

Hi CE,
I am also on week 4 of Solvaldi /ribra for geno 3.... And the same age! I love what you said being a step closer to healing, I have to remember that on my down days. I wake up every morning not knowing how I will feel, I am doing what the wiser members say and that is to drink plenty of water. I try and exercise every day no matter how I feel, like you I am determined to slay this dragon, I have had it for to long and I no longer want it in my body. I try and focus on a life free of this and all the possibilities it brings.
Keep me informed, it will be good for me to have another traveller on this path to recovery.

CE · « **Reply #5 on:** November 22, 2014, 03:56:10 pm »

Hi Francis60,
We do have a lot in common right now for strangers! Of course we are no strangers to this demon. Genotype 3 is the rarer, difficult type and it seemed that there were not too many folks with this. That is why I started this forum with that info first. I figured it would attract birds of a feather! Please do stay close as we battle the dragon! Good luck and God bless.

Francis60 · « **Reply #6 on:** November 28, 2014, 06:31:34 am »

Hi,
Just got my 2 week VL back it is at 51...the doctor was expecting it to be undetected, any one else had a 2 week reading out their?

zeena · « **Reply #7 on:** November 28, 2014, 09:36:55 am »

nope, 4 week was the first UD. still felt all beat up physically at 2 weeks.sounds like a good number though, the virus is going down the drain.

Francis60 · « **Reply #8 on:** November 28, 2014, 02:48:20 pm »

Thanks Zeena, I can relate to "being beaten up"....lol

lucky-in-lasVegas · « **Reply #9 on:** November 29, 2014, 02:41:19 pm »

genotype 3 is the hardest to treat? I thought genotype 1 was? I am geno 3, My viral load is 9mill, fribosure bood test said I am stage one liver damage, so my doctor says I can not get treatment until I am stage 3, does this make sense to anyone, in the meantime I am infectous to my family!!

Francis60 · « **Reply #10 on:** November 29, 2014, 05:09:38 pm »

Geno 1 use to be the hardest to treat but with all the new drugs it's now become the easiest. There are not as many geno 3s around so not as much money has been thrown at it. But it's changing:)... That's my understanding of it. There are much more knowledgeable people on here than can help you . Good lucj

CE · « **Reply #11 on:** November 29, 2014, 09:21:37 pm »

Hi Lucky,
Genotype 3 is the now the hardest because if the new drug treatments mostly aimed at genotype 1 as Francis said. But lucky for us all, it is a new and fast growing era of new hcv drug tratments. If you ever had to pick a time to have it treated, this is it. 24 weeks of Sovaldi and rbaviin is cake compared to 48 weeks with interferon and riba. I think it is totally insane to tell a person that they have to be "sicker" to get treatment. That should not be an option. I did not have any scan or biopsy. My history of post surgical bleeding made biopsy dangerous, and there is no fiberscan available in my area. All I know is I wanted this out of my body at any cost! My specialist wasted no time in setting up my treatment. If I were you, I would seek another doctor. After all, it is your health at stake. Please don't accept that decision. I hope you are able to find the way to treatment soon. Best wishes.

badbradley · « **Reply #12 on:** December 01, 2014, 02:44:12 am »

Quote from: Francis60 on November 28, 2014, 06:31:34 am

Hi,
Just got my 2 week VL back it is at 51...the doctor was expecting it to be undetected, any one else had a 2 week reading out their?

Hey Francis, I see your on this thread, What was your last alt/ast enzyme levels? brad

Francis60 · « **Reply #13 on:** December 01, 2014, 02:48:55 am »

Hi Brad,
My Alt after 2 weeks had dropped to around 33. It was over 300 when I started.All my other blood work was within normal range.

badbradley · « **Reply #14 on:** December 01, 2014, 03:05:44 am »

Francis, That is a significant drop and a positive sign that the meds are doing what they're supposed to! A VL test at 2 wks. is a curiosity check for Docs. They want to have a looksee to see if meds are working. It's not cause for alarm that it's still detected at this early in treatment. I didn't have a VL test until 4 wks in. My Alt was 23 at 2wks. Your Alt is in the normal range so personally-Iwouldn't worry at this point. I am geno 1a. I understand where you might be a little more concerned with geno 3 but I think it's too early for worry. Best wishes - Brad

Francis60 · « **Reply #15 on:** December 01, 2014, 03:11:01 am »

Thanks Brad, I will know m one month in 2 weeks time, will keep you posted.
Take care
Francis

CE · « **Reply #16 on:** December 01, 2014, 04:55:31 pm »

Hi all,
Just got my 4 week test results, (it actually was 24 days because of the holiday). My ALT is 28, AST is 29, but my VL is 63. It went from 950000 to start, down to 667 at 2 weeks. I have to admit, after hearing everyone talk about being undetected at 4 weeks, I am disappointed and worried that I won't be cured. Also, my HG is down to 10.3. Not good, although I am not really suffering any bad fatigue or other symptoms. Did anyone else have a VL at 4 weeks and still go on to be cured? Also, what foods can I eat to up my HG? I really don't eat red meat. Should I start chomping it?
Thanks for any help. Chris

Doluska · « **Reply #17 on:** December 01, 2014, 05:12:38 pm »

Pomegranate, backweet, spinach

Francis60 · « **Reply #18 on:** December 01, 2014, 08:40:29 pm »

Hi Chris,
I went from 1,700,000 to 110 in one week to 51 in 2 weeks, I am waiting on my one month results, and will let you know. I was hoping to be undetected after 2 weeks, but I was told its still early days, 20 more weeks to go.I have heard of other people with a VL after 4 weeks and still cured.
good luck
Liam

zeena · « **Reply #19 on:** December 01, 2014, 10:32:02 pm »

doluska, i didnt know pomegranite was good for us, i have been craving it, and eating the fruit, which I never liked before.

zeena · « **Reply #20 on:** December 01, 2014, 10:35:36 pm »

CE.
My hemoglobin dipped, and then turned back up while i was still on riba 1000 a day and sov.

zeena · « **Reply #21 on:** December 01, 2014, 10:37:14 pm »

CE
24 sounds more like 3 weeks. and that dipped alot from 2 weeks!!!!

Doluska · « **Reply #22 on:** December 02, 2014, 07:43:02 am »

Hi Zeena! See, sometimes our body is talking to us on it own way!!! Good luck and us usual, SVR forever!

zeena · « **Reply #23 on:** December 07, 2014, 11:11:39 am »

Hi geno type three and riba ragers,
Its been 2 weeks post meds. and I am getting stronger everyday.My mental confidence is better than ever, and I am working overtime due to the holidays.Where there was confusion under riba, I now feel the initial confidence that put me in my job 20 years ago.I still crumble under sadistic management techniques, but I dont drink anymore, so the personal pain dissapears and my confidence moves in.Yes it is all in our head, unfortunatly we share our head with hep c and riba, for a time, and this too will pass. I wish all of you a speedy and safe svr.Another point, I wanted to know my svr early pre x-mas. Now I feel healthy enough it doesnt matter. I am so pleased with my thinking and organizing skills now, which were nearly impossible under the meds.I may wait for 12 weeks to see, but my point is I am functional and feel great!!this to me is healed.

CE · « **Reply #24 on:** December 07, 2014, 11:33:05 am »

Wonderful news, Zeena! We all have so much to look forward too!

Francis60 · « **Reply #25 on:** December 07, 2014, 05:03:46 pm »

Hi Zeena,
I just woke up with a heavy Riga head, and reading your email picked me up no end.
It is so inspiring to hear what you have said, enjoy your new life. And thanks again for making my day.
All the best to you ...well done

zeena · « **Reply #26 on:** December 07, 2014, 08:32:59 pm »

and thank you francis 60 for making mine!!

kelly · « **Reply #27 on:** December 08, 2014, 10:44:11 am »

I just have to say thanks to whoever it was that posted the information about emailing express scripts! I emailed them this morning at 6 a.m. and just got a response from a really super nice lady named Liz. She told me she is working my case for Harvoni and that she would have an answer for me by today at 3:30!!! My son was diagnosed back in July with Hep C when he entered the military. He was discharged soon after and sent home. We sought care from a gastro doctor here and he said he wanted to wait to start treatment until Harvoni became available. Well, he prescribed it for him right around Thanksgiving or soon after and we were DENIED. He asked if he would file an appeal for me and he said he did not have "time" due to "patient needs". WOW. So, we are seeking help from the Liver and Wellness Center tomorrow and will see what this doctor does for us, as well as express scripts. I can't believe it.....prayers he will be on Harvoni soon. He is 21 years old.

Thank you for this very informative forum.

BattleTheBeast · « **Reply #28 on:** December 08, 2014, 10:51:52 am »

Quote from: kelly on December 08, 2014, 10:44:11 am

I just have to say thanks to whoever it was that posted the information about emailing express scripts! I emailed them this morning at 6 a.m. and just got a response from a really super nice lady named Liz. She told me she is working my case for Harvoni and that she would have an answer for me by today at 3:30!!! My son was diagnosed back in July with Hep C when he entered the military. He was discharged soon after and sent home. We sought care from a gastro doctor here and he said he wanted to wait to start treatment until Harvoni became available. Well, he prescribed it for him right around Thanksgiving or soon after and we were DENIED. He asked if he would file an appeal for me and he said he did not have "time" due to "patient needs". WOW. So, we are seeking help from the Liver and Wellness Center tomorrow and will see what this doctor does for us, as well as express scripts. I can't believe it.....prayers he will be on Harvoni soon. He is 21 years old. Thank you for this very informative forum.

Kelly,

That was Lynn that shared the ExpressScripts email address. I was able to get right through the red tape by using it myself and started Harvoni on Saturday.

I hope it goes the same for your son and he is able to find a supportive Dr to work with. As we have all learned not all doctors are the same.

This forum and the members are truly a blessing for all of us.

Mel~

kelly · « **Reply #29 on:** December 08, 2014, 10:58:02 am »

Thank you, Mel! I told the lady at Express Scripts that I did not want to have to involve the former gastro in any of it so I'm not sure if we will have to have an active prescription or not....which I guess we could always get tomorrow. I'm new to all of this and had no idea what to do or where to go until this forum. I could not believe the doctor did not want to help and I'm super glad we found out early rather than him monitoring his treatment all along. My son hasn't really done any research on Hep C and I personally feel like he tries to block it from his mind that he actually has it. I'm sure at his age he doesn't even understand what could happen to him in the future. I am the one with most of the questions and concerns at this point and am fighting hard to get a good treatment plan that will allow him to work and function each day. Are there certain foods he should be eating or avoiding that will help him cope? We believe he got his Hep C from a tattoo, or at least that's what he wants to fess to me so far.

Not important how he got it at this point for me.....just want him cured. Prayers for all who are going through this.

BattleTheBeast · « **Reply #30 on:** December 08, 2014, 01:48:07 pm »

Hey Kelly,

It's amazing that you agree it really doesn't matter where it came from, he has it and he is going to get cured. You are a good mom!

I'd google a liver friendly diet, there are things that help and clean eating without processed foods is important. I am fairly new to the diagnosis myself so still learning. I do know that drinking lots of water is important. There are many here who will be able to provide you with way better advise that I can give you.

Perhaps if you tell us the closest metro area to you someone here will have a doctor they can refer you to.

Mel

kelly · « **Reply #31 on:** December 08, 2014, 02:50:49 pm »

Thank you, Mel. I have seen a lot of people talking about drinking water. We live in the little rock Arkansas area. We are going to the liver wellness center tomorrow. Got called this afternoon by the prior gastro and was told that solvaldi and olysio were denied as well. Express scripts called a bit after and said they have contacted the wellness center and faxed paperwork over to start the appeals immediately. Hoping to have answer by end of week is what she said. Please keep praying for treatment on harvoni!!!

kelly · « **Reply #32 on:** December 08, 2014, 02:51:55 pm »

He doesn't eat much as it is now but I will research a liver friendly diet!

BattleTheBeast · « **Reply #33 on:** December 08, 2014, 03:35:44 pm »

Hey Forum Members,

Anyone have a great doctor in the Little Rock Area to recommend? I know we are spread all over the world but you never know.

Kelly's son could use a doctor who cares!

Thanks,

Mel

kelly · « **Reply #34 on:** December 08, 2014, 03:38:41 pm »

Thanks again Mel!! So far I've heard great things of who we are seeing tomorrow. Let's keep our fingers crossed. If I don't get a good vibe then that one is out as well!!

Lynn K · « **Reply #35 on:** December 09, 2014, 03:00:04 am »

Hi Mel

Thanks for sharing the address with folks. That was my hope to help folks get around the red tape. I am so glad it is working for people.

Actually Liz is the same person I spoke with as well small world that connects us all.

Lynn

BattleTheBeast · « **Reply #36 on:** December 09, 2014, 07:57:56 am »

Quote from: Lynn K on December 09, 2014, 03:00:04 am

Hi Mel

Thanks for sharing the address with folks. That was my hope to help folks get around the red tape. I am so glad it is working for people.

Actually Liz is the same person I spoke with as well small world that connects us all.

Lynn

I had a young man named Jason and I have a direct number to call him should the need arise!

We are fighters if nothing else!

Mel

kelly · « **Reply #37 on:** December 09, 2014, 12:48:42 pm »

That's awesome, Lynn! Maybe your luck will rub off on me! She sounds absolutely wonderful to deal with.

Krissy · « **Reply #38 on:** December 10, 2014, 03:09:25 pm »

CE,

I recently finished the same treatment for type 3 and I am so happy to report that my end of treatment blood work came back undetected!! I was undetected at 4 weeks too. Now I wait 3 months to see if I have a SVR. I'm feeling pretty positive about it though.
The treatment was really not too bad for me. The worse side effect was insomnia. I used Ambien a few nights a week and that really helped.
Best wishes on your journey!
Krissy

Francis60 · « **Reply #39 on:** December 10, 2014, 04:24:23 pm »

Hi Chrissy,
Congratulations, it must be a wonderful feeling.Love hearing these reports, I get my results back for my one month tomorrow morning.enjoy your hep c free new life. Please keep us updated.
Cheers

CE · « **Reply #40 on:** December 10, 2014, 04:55:50 pm »

Krissy,
A big high 5!! So happy for you. My 4 week blood work was done at 3 1/2 weeks and I still had a vl of 68. It depressed me, but I was told not to worry, that it does not mean I won't have a svr. I feel ok, but feel a bit tired during the week after work. I do have a funny cough. I cough when I take a real deep breath, whatever that means. The riba has my HGB down to 10.3. I just had my 6 week labs done, but not for vl. I won't get that until my 8 week. I hate all the suspense! Lol! I do hope my treatment works. As for you, I will keep you in my thoughts and prayers that you keep the SVR FOREVER!! Best wishes and keep us posted.

kelly · « **Reply #41 on:** December 10, 2014, 04:59:15 pm »

Hey Krissy! Thanks for your response, not me though that has SVR! We are waiting for that day! Still pending approval for my sons harvoni. I'm sorry you still have sighns but hang in there and I promise it will happen. Patience and prayers!!!

Francis60 · « **Reply #42 on:** December 11, 2014, 10:38:10 pm »

Hi all,
Just got my 4 weeks blood work back am still detected VL 15 it was 68 after 2 weeks,
My hgb has dropped from 150 at baseline to 132, not sure if that is good or bad and my ALt is 23 it was 390 4 weeks ago, my energy levels are ok but was hoping to be undetected already. Feel a little disappointed, I guess I am posting to hear some other opinions on these numbers. I Am on a clinical trial and my doctor is not very forthcoming with explaining results to me .

zeena · « **Reply #43 on:** December 12, 2014, 10:22:12 am »

my understanding,is your doing great!!

Picnic · « **Reply #44 on:** December 12, 2014, 11:05:58 am »

Definitely going in the right direction!! Be patient, it will go UD on the next one!!

CE · « **Reply #45 on:** December 12, 2014, 12:10:14 pm »

You faired better than me! At 2 weeks, my vl was 667, 3 1/2 wk it was 68. I dont get another VL test until 8 weeks, so I dont even know if it's UD or not. I know exactly how you feel with the disappointment especially after hearing everyone else saying they were UD at 4 weeks. My doctor's nurse said not to worry that my body was responding, and that's good. My hgb was down to 10.3 at 4 weeks. I never called about my results this week for the 6 weeks. I figure no news is good news. I basically feel ok, just more tired after work during the week, but on the weekends, I don't get tired!
Hang in there, Francis60. You are my soulmate right now. Together we will battle this beast!!

Francis60 · « **Reply #46 on:** December 12, 2014, 04:04:50 pm »

thanks CE....keep me posted on your results....yep we are in this together!. Take care

CE · « **Reply #47 on:** December 30, 2014, 12:30:18 pm »

Just got 8 week blood results. All liver enzymes are absolute normal, bili good, hgb still low but recovering, but best of all, VIRUS UNDETECTED!!!! 16 more weeks to go. A perfect ending to this year!
Happy New Year to all and may you all be blessed with SVR!

Francis60 · « **Reply #48 on:** December 30, 2014, 05:27:15 pm »

Hi CE,
Congratulations fellow geno 3 ...24 weeks:)... Yes the new year is looking good. I get me 8 weeks results next week. Do you know what your hgb was?
Enjoy your new life and year.

CE · « **Reply #49 on:** December 30, 2014, 05:46:44 pm »

My HGB dropped to 10.3 at 4 weeks, but has went up to 10.8. That is really low, but I feel good and the doc is confident it will continue to rise now. I eat lots of green leafy veggies, especially spinach and Trying to eat more red meat. (I was not big on red meat) i look forward to the great report you will get soon too! Happy and blessed New Year!!

BattleTheBeast · « **Reply #50 on:** December 31, 2014, 05:31:56 pm »

Great Amazing Fantastic news CE!!!

Francis,

No worries, I too was still detected at 4 weeks and happy to report as of a week 9 blood test I am also Undetected, New Years Day I start week 13. I saw my IDhero today and he said that I looked human again, may sound like an insult but it was an amazing compliment considering how rough I have looked and felt for almost a year. I just know if you were at 20 @ 4 weeks this one will be undetected!

Keep doing what you are doing, take your meds the same time each day, drink lots of water, rest when you need to (it's ok, this medicine is strong stuff).

Happy New Year to you both and SVR in 2015 for us all!!!

Mel

CE · « **Reply #51 on:** December 31, 2014, 06:02:06 pm »

My VL was at 68 at week 4. They skipped week 6 count, and UD at week 8. Not really sure when the exact moment was that I was UD. As for looks, I know I look rough around the corners! Lol! When you think of the battle our bodies are going through, and the nasty meds we're consuming, it's no wonder. I really can't wait to feel that "burst of energy and brightness" that every one that is SVR has experienced.
Have a very happy New Year, and may the new year bring us resounding good health and new life! God bless!
Chris

Jazz · « **Reply #52 on:** January 03, 2015, 11:45:26 pm »

Hello, I've just joined this forum, and so glad I found it, as here in Aus I live in the country and cannot access any support groups, that may be able to address my concerns regarding side effects of the Sovaldi/Riba combo.

12 wks ago when I began tx, I was initially prescribed 1000mg of Ribavirin (and 400mg Sovaldi). Within 3 wks my Hemaglobin had decreased from baseline 13.7 to 9.2. My hepatologist reduced my dose to 600mg - and I must add, there is not much of me, I weighed in at 51.3kg at baseline. He said, that despite the fact that I had become quite anaemic, this was a good indicator of successful tx, as it indicated that my blood was thoroughly saturated with the Riba. I was relieved to reduce my dose, if it was going to make me feel better, as my energy, mood etc all were very affected. By wk 6 my haemoglobin increased to 10.4 and has stayed so since then. My hepatologist said if it rose to 11 he would increase my dose of Riba, and I am now quite comfortable to be able to withstand a dose increase.

My concern is, will 600 Riba, since wk 3, eradicate the virus? Would anyone on this forum be able to answer this?

Btw, all my blood tests (except Hgb) have moved within normal range, though my platelets, although within range, are still regarded as low by the lab - sitting on 210.

Wishing you all a happy healthy virus free New Year!
Jazz

Francis60 · « **Reply #53 on:** January 04, 2015, 12:09:30 am »

Hi Jazz,
Welcome to the forum, I am also on the same treatment week 10 undetected.there are some very knowledgable people on this forum that I am sure will be able to assist you. Are you from Australia ?

Jazz · « **Reply #54 on:** January 04, 2015, 01:00:19 am »

Thank you for your greeting Francis

Jazz · « **Reply #55 on:** January 04, 2015, 01:02:13 am »

Hmmm, didn't include the rest of my msg. Yes, I live in Australia, where it's very hot at the moment!

Francis60 · « **Reply #56 on:** January 04, 2015, 01:14:43 am »

I am on the riba/solvaldi 24 week trials in Melbourne. Yes it is very hot.

CE · « **Reply #57 on:** January 04, 2015, 02:15:42 am »

Hi Jazz,
Welcome to the forum! Ribavirin is dosed by weight and 1000 seems pretty high for your low weight. I could be wrong though as I am not an authority on the matter.
My hgb dipped from 14 down to 10.3, but at week 6 increased back to 10.8. That was scary as I did not want to take Procrit or have a transfusion. One good thing is you are half way thru treatment! Congrats. I just began my 10th week today. I have had only a few effects along with the low hgb. Twice I ran a low grade fever and felt cold, my skin and hair is more dry, and my eyes feel dry. Also, get tired on some days. I drink lots of water and try to eat healthy.
Good luck to you and please let us know your progress. Happy New Year!
Chris

Lynn K · « **Reply #58 on:** January 04, 2015, 02:47:23 am »

From the Sovaldi prescribing information sheet

https://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/sovaldi/sovaldi_pi.pdf

Dose of ribavirin is weight-based (<75 kg = 1000 mg and ≥75 kg = 1200 mg). The daily dose of ribavirin is administered orally in two divided doses with food. Patients with renal impairment (CrCl ≤ 50 mL/min) require ribavirin dose reduction; refer to ribavirin prescribing information.

Jazz · « **Reply #59 on:** January 04, 2015, 03:08:07 am »

Thanks for the replies and welcome Chris and Lynn.

I agree with you Lynn 600mg is probably enough for my weight, and as my doc says, my blood is saturated with it so, it is doing the job.

I realise there would not be a great deal of stats on this, as this combo is still relatively new. If the trial I'm on didn't allow a reduction of Riba dose, I would have ceased the Tx, as I was very breathless, fatigued and tearful on the 1000mg, and generally could not function.

I shall be watching everyone's progress with interest and hope we all successfully clear this virus once and for all!

Jazz · « **Reply #60 on:** January 04, 2015, 03:09:14 am »

Sorry, I meant, 'I agree with you Chris'

Lynn K · « **Reply #61 on:** January 04, 2015, 03:37:42 am »

Hi Jazz

This is a link to some clinical trial results for Sovaldi riba with 250 genotype 3 patients

For the treatment naive the results were 94% so looking good!

http://depts.washington.edu/hepstudy/presentations/uploads/93/valence.pdf

Jazz · « **Reply #62 on:** January 04, 2015, 03:42:45 am »

Ah yes, thanks Lynn, I have seen the results of this Valence trial - looking good indeed!

amh · « **Reply #63 on:** January 20, 2015, 09:08:02 pm »

I too am in my late 50s (when did that happen?) and have had Hep C probably for about 35 years. I have geo type 3 with a VL in the high range. According to my DR my liver is functioning normally and my ultrasound was normal.
I was approved for a 24 week treatment of solvadi/ribaviran today. I've already spoken to the pharmacy and will have my meds sometime next week.
I am very apprehensive about beginning treatment. I have a demanding and stressful job and I need to work throughout the course of my treatment. I do not want my job to know I am undergoing treatment for HC,. I work in HR/benefits so if I applied for any FMLA I would have to disclose to my co-workers and I would like to avoid that if it all possible. it is very encouraging to read other people's stories who have and are going through the same thing I am going through. I wish you continued success on your journey and want you to know how helpful your posts are to those of us who are about to start on their journey.

Lynn K · « **Reply #64 on:** January 20, 2015, 09:18:53 pm »

I don't see why you would need to disclose the nature of your medical condition to anyone not even you direct supervisor. All they are allowed to know is your are taking a Medical leave for all they know it could be to care for an ailing parent, child or spouse. I have been on FMLA a couple of times and only worked with the approval department. I do work for an very large company so an outside entity handles our HR and FMLA and other functions. But still I believe HIPPA protects you right to privacy.

But in any case many here have done treatment with Sovaldi and Ribavirin and worked continuously throughout their treatment including those with physical jobs. Ans those that were so inclined continued their work out routines. Most have reported mild side effects so I really believe you can make it through.

The time I took 2 weeks of FMLA I was treating with Interferon and Ribavirin and that combo caused my hemoglobin levels to become very low. But that is not so much a concern with Sovaldi ribavirin.

Good luck on treatment. You can do it!

CE · « **Reply #65 on:** January 20, 2015, 09:58:22 pm »

Anh, I too work a very stressful job. I am a buyer for a hospital. I am known throughout the hospital. I absolutely refuse to tell anyone there what I have. I travel to another hospital to have my labs done. I have to pay more since it is something that can be done at my work place, but it is worth not having everyone talking behind your back. Trust me, I have seen it happen to other people. I did tell my boss that I am on some medicine, and it can make me tired, and that is it! But so far, 12 weeks in, I am as alert and productive at work as ever. Never had to miss a day! So, relax, and take it day by day.

Chris

Jazz · « **Reply #66 on:** January 21, 2015, 02:04:43 am »

Anh, if I hadn't become so anaemic so rapidly at the beginning of my treatment, I would not have experienced any fatigue. Now at 14 wks, I am still anaemic but my body has adjusted to it and I am as productive as always with no side effects to speak of, except for the fact, that I am bit more quiet than usual. If my experience is anything to go by, you will be fine. All the best to all for our mutual success!

Francis60 · « **Reply #67 on:** January 21, 2015, 04:19:58 am »

Hi Amh,
I am on 12 weeks of 24 riba/sol and besides so fatigue and minor skin rashes it has been ok. You can do it. Welcome !

CE · « **Reply #68 on:** February 04, 2015, 10:53:52 pm »

Trudging through my 14th week of 24. I'm not gonna lie, this week has been one of my worse weeks. I've been irritable, bit off a few heads, and I look like crap. My skin is pasty and I have sullen eyes. The concealer is struggling to make me look healthy. I'm not sure if it's the lack of sunshine or the riba that is giving me a lower tolerance towards people who irritate me. I decided to use some PTO and take a long weekend. Some much needed time off work. It has been very stressful lately. I plan on doing NOTHING for 4 days! All R&R. I hope this makes for a nicer me next week!
Best wishes to all in the same boat! Take care and keep on trudging! We will eventually make it!

Francis60 · « **Reply #69 on:** February 04, 2015, 11:21:37 pm »

Hi CE,
I know exactly how u feel also on week 14 and it's been my worst..... By far.been in such a dark space, this is the first day I have felt a little bit better. I look like I havnt slept for a week. We will get their.!!!

Jazz · « **Reply #70 on:** February 05, 2015, 02:07:17 am »

Ditto. I'm on my 16th week and I'm soooo fatigued, drugged and, yes, the fatigue and achy joints ( a new side effect I have developed in the last week) are really quite depressing. I have to summon all of my positive energy (!! did I say energy?) to stay afloat.
I mark off every week, so now I only (!!) have 8 more weeks to go. I would stop sooner if I could be certain the virus has been eradicated, but we don't know that for sure til 6 mths end of treatment. Catch 22.
We must all hang in there and have a good grizzle here when necessary.

All the best fellow patients,
Jazz

kate0b1 · « **Reply #71 on:** February 05, 2015, 11:23:59 am »

@Ce,jazz and Francis I'm sending you lots of positive thoughts for the w/e, Im not on riba this time but i'm cringing remembering the terrible feelings, i'm so sad anyone has to go through it

. Ce, i hope your 4 day R&R gets you back to a better place, i think naps could help! and come here to vent if you get ragy, we can listen at least and understand.

kate

Long_Haul · « **Reply #72 on:** February 05, 2015, 11:32:42 am »

Sorry to hear Ribavirin is taking it's toll on you guys, you can do it. I did 48 weeks of Interferon and Ribavirin. I still can't figure out how I made it through without my wife taking a contract out on me. Keep your eyes on the prize and you will make it!

Hang in there,

AL

CE · « **Reply #73 on:** February 05, 2015, 04:24:39 pm »

Thanks all for your unconditional support! It really makes a difference when you can relate what you are feeling and there is someone that REALLY knows how you feel! As Long Haul says, we need to keep our eye on the prize! Best wishes!
Chris

Jazz · « **Reply #74 on:** February 05, 2015, 06:53:56 pm »

Yes, I second CE's thanks, and Long Haul, you put the biggest smile on my face with yr joke about the wife and contract! Very funny!

Eye on the prize! We can do it! Yes sir!

All the very best to all,

Jazz xx

Billy · « **Reply #75 on:** February 05, 2015, 07:26:13 pm »

Same here. Gen 3 S&R for 24 weeks. I just finished my first month yesterday and already my enzymes all plummeted to normal levels and my viral load dropped significantly. I resisted interferon hoping for something better to come along and it finally did. Glad too because I was in the fatty liver stage, nearing cirrhosis, and wasn't sure how much longer I could hold out.

CE · « **Reply #76 on:** February 05, 2015, 08:01:01 pm »

Welcome, Billy! You are in the right place with the most supportive people ever! Congrats on your progress! Someday soon this dragon will be history for all! The very best to you!
Chris

Billy · « **Reply #77 on:** February 05, 2015, 09:16:52 pm »

Thanks!

Jazz · « **Reply #78 on:** February 05, 2015, 09:22:00 pm »

Yes, welcome Billy. That was the case with me, enzymes back to normal, VL undetected at 4 wks, it really is remarkable and I tend to forget all this when I'm so fatigued from the treatment and the anaemia I have developed due to the Ribavirin - doesn't happen to everyone, 10% are affected this way.

Don't be put off by my moaning, energy levels on this stuff Have their troughs and then, viola! the next day after a trough, you don't feel so bad after all.

I waited, like you, but boy, am I glad something Interferon free came my way, as my liver disease was progressing too.

Apparently the fatty liver resolves itself after successful treatment as does fibrosis, and even Cirrohsis, so I am hearing and reading. So it's all looking good for us!

All the best, Jazz

Billy · « **Reply #79 on:** February 05, 2015, 09:49:21 pm »

Yeah they felt I could becoming anemic as well and reduced the ribavirin from 6 to 5 a day. Hope that doesn't throw a wrench in the gears..

CE · « **Reply #80 on:** February 05, 2015, 10:07:37 pm »

My HGB went as low as 10.3 in the first month! It is staying between 10.5 and 10.8 now, which is really low, but the doc says it has to go below 10 before they will treat it. And they would either give me Procrit or a transfusion (the very culprit that gave me this 35 years ago!). I want neither. Lowering the riba was never mentioned. I hope it doesn't go any lower. I'm trying to eat more iron rich food, and orange juice to help absorb the iron. Under eye concealer is my friend. I will just shuffle along for the next 10 weeks. Cheers to all with a big glass of sparkling water!
Chris

Jazz · « **Reply #81 on:** February 05, 2015, 11:18:47 pm »

Hi all,
Chris and Billy it's not iron deficient anaemia unfortunately, it's haemolytic anaemia - the Riba is knocking off our red blood cells before they get to maturity, so we are deficient in heme, so iron rich foods won't really make much of a difference. But don't worry, my Hemaglobin went down to 9.2 in 2 1/2 wks into treatment and now oscillates anywhere between 9.5-10.5, what my treatment team call 'stable anaemia', and will go back to normal btw 2-4 wks after treatment.

Just pace yourself, don't over do it, and you should be fine.

Btw, anaemia means our blood is saturated with Riba, so don't be worried if your doc insists on lowering your Riba dose, as if you stay anaemic, that means you are getting more than enough. And the trade off for feeling extra fatigued on treatment, is that Riba induced anaemics have high odds for clearing the virus, as Riba is killing anything that moves!

Cheers, Jazz

Francis60 · « **Reply #82 on:** February 05, 2015, 11:53:43 pm »

Welcome Billy,

Please keep us updated with your progress. We are going to all beat this!

Billy · « **Reply #83 on:** February 06, 2015, 12:01:16 am »

Yes we are! I'm feeling very good about it. Very impressed with how fast the S&R works.

CE · « **Reply #84 on:** February 06, 2015, 09:57:51 am »

Thanks for the great info! I had to chuckle at the "riba is killing anything that moves"!! Gives me hope though that all our misery will not be in vain.

Billy · « **Reply #85 on:** February 06, 2015, 07:09:11 pm »

I do feel better today taking one less riba...slept better too.

CE · « **Reply #86 on:** February 10, 2015, 07:44:21 pm »

Returned to work today after 4 glorious relaxing days. Felt totally refreshed. And a good thing I did. Within 30 minutes of the start of my day the serenity fell apart as multiple departments pounded me with their problems. At least I was rested enough to bear it and even managed to lighten their turmoil with some humor! I think my shoulders were a few inches wider at the end of the day! Lol! I can only imagine my incredible energy to look forward to after the EOT! Bring it on!!
Hope all are doing well and keeping the battle strong!
Best wishes. Chris

kate0b1 · « **Reply #87 on:** February 11, 2015, 06:11:04 am »

@chris, im glad you had a great R&R, i thought your shoulders sounded a little wider lol, I'm glad you are feeling better/stronger

kate

Jazz · « **Reply #88 on:** February 11, 2015, 06:25:36 am »

Yes Chris, good you are feeling refreshed.

While I've become even more anaemic! Most recent blood tests have my Hgb at 9.1. But to be honest, if they pull me off the trial at this stage - this is my 17th week - I won't be sorry. There is plenty of data that suggests anaemia during treatment increases odds of success, as blood is totally saturated with Riba, as well I'm treatment naive. Anyway my body and the trial rules will make that decision for me, but I'm not concerned either way. Indeed I'm confident the virus has been eradicated by now.

Cheers all,
Jazz

CE · « **Reply #89 on:** February 11, 2015, 12:30:16 pm »

Jazz, i'm sorry to hear your HGB is so low. That riba is really attacking you. Perhaps they will just reduce it. You have come too far to stop. You got that beast by the butt! The best to you! Take care!

Kate, hope you are doing well. Honestly, this place was a hornets nest and today is not shaping up much better! Stress can't be good for us! Take care!

zeena · « **Reply #90 on:** February 11, 2015, 09:28:03 pm »

hey y*all,
been there , done that...stress enters new levels of meaning on riba and i now think sovaldi is a little to blame. keep your mantra of water and exercise,I messed up a couple of times drinking while on tx. paid for it with pain too! The pain in my side was prominent for a few days after my 2 mistakes.One time was a wedding, the other time was overworking and getting home soulspent. I didn t care anymore for a minute and opened a bottle of wine.Being in sales can leave someone healthy feeling used and discarded after a hectic day. To us on these meds? Well we all deserve medals. 24 weeks is a long time to pretend to be your normal self, especially if dipping in a cabernet was a way to relax.Today I got my 12 week undetectable post tx.There are many changes I feel. Calmer, more confident in my decisions.post hep c feels good . but its a kind of beginning too, like discovering this new self, and finding out days can go by without wanting to drink because its o.k. just to be whatever.my liver still feels sensitve, sometimes, but it could be I expect it too. whatever it is , you guys will be here on the day i am now, svr12 YES YOU WILL.stand back at the teeth gritting moments and laugh. drink a bottle of water join a zumba class. enjoy the ride... the destination is worth it!

Lynn K · « **Reply #91 on:** February 11, 2015, 09:53:43 pm »

Hi All

I am taking Harvoni for 24 weeks but my doctor added Riba part way in due to my treatment history and cirrhosis.

My HGB was 13.7 before I added the Riba but just 3 weeks later it has dropped to 9.3.

I am guessing I will be hearing from my doctor to reduce dose but for me the Riba is just an add on in case I need the extra percentage point to cure my hep c on this my 5th try at treatment. Hopefully I will be cured this time.

Just would like to add this information I found

http://www.rxwiki.com/askrx/4036/can-you-consume-alcohol-while-taking-harvoni

Harvoni, a prescription medicine containing ledipasvir and sofosbuvir, is used to treat chronic hepatitis C genotype 1 infection in adults.

You should avoid alcoholic beverages, not specifically because you are taking Harvoni, but because no amount of alcohol is considered safe for those with hepatitis C or other liver diseases. Any amount of alcohol can further damage the liver.

Just a thought

CE · « **Reply #92 on:** February 11, 2015, 09:59:44 pm »

Cheers to you Zeena (with a bottle of sparkling water held up in the air!) So wonderful to hear you are SVR12! I SOOO look forward to the day! I want to see what I have been unknowingly missing all these years! Keep up the good work and enjoy your new life to the fullest! Keep us posted. Take care!
Chris

zeena · « **Reply #93 on:** February 11, 2015, 11:36:28 pm »

i agree dont drink!!!

db · « **Reply #94 on:** February 12, 2015, 12:11:53 am »

Hi I'm new to this forum was told today my Sovaldi approved with a out of pocket copay of 20 grand. I'm shocked and depressed no one c a new afford that any suggestions on what to do. I'm hoping for assistance thru Gilead

Lynn K · « **Reply #95 on:** February 12, 2015, 02:00:06 am »

Hi and welcome

Yes Gilead is a good option. What insurance and prescription drug provider do you have? Others with the same insurance may be able to provide suggestions.

Good Luck
Lynn

Jazz · « **Reply #96 on:** February 12, 2015, 04:40:04 am »

Thanks for encouragement Zeena.

I haven't had a drink for some time and have not ever really been a drinker, but I must admit, when i get my 24wk SVR, I will be celebrating with a good red and a posh dinner!

Best to all,
Jazz

zeena · « **Reply #97 on:** February 12, 2015, 08:59:11 am »

dear Lynn,
Sounds like riba has you in its clutches. I took 1000. riba though i am 125 pounds.I hope your levels go up,,Good luck, and after 5 tries I believe this is going to be the one. Keep Laughing!!

CE · « **Reply #98 on:** February 12, 2015, 12:17:25 pm »

Hi DB! Welcome to the forum! If you have insurance, you can get assistance with the copay through the Patient Access Network (PAN) www.panfounation.org. Check it out. They covered my copay in full. Very nice people too. Good luck to you! Best wishes.
Chris

kimharvest · « **Reply #99 on:** February 16, 2015, 04:51:02 pm »

This is my first time on this forum. Hep C seems to separate one from everyone else; people say "It's OK with me" "Do I look ignorant?" "We are family...". But they all disappeared. I found out I had it in 2002, unfortunately my thyroid doctor missed all the high liver enzyme rates throughout the 90's. Took a ghetto clinic to notice those red flags. I wish I knew earlier because I shared razors sometimes with my daughter. I must have picked Hep C up in the 1970's. But the last few years I have been so incredibly tired and my mind was in a constant haze I couldn't fight through. I was lately down to just paying bills and nothing much more. I felt I was losing control over my life. Now I see here about Mind/Brain Fog and I can't believe how alone I have been in this. I swear I couldn't have gone on another year. I waited over 10 years for a new medicine. My VL was a few million then but now is over 8 million. All the blood surging through my brains had no room for nutrients just laden with virus. My tinnitus was horrid. I used to work on my farm 4-6 hours easy now 1 or 2 is too much. My house is a mess and nothing is organized. I work continuously on my art/hobby to keep producing and learning but at times seems like there is no future. Now I started on the Sovaldi and Ribavirin and I am at my three week point. I have symptoms like being bus sick; thick headed to headache, slight nausea, muscle tightness and some itching. I can actually feel every one of my hair follicles! I was feeling the promise of much more energy and my tinnitus shrill has lowered. There are good days and bad, probably dictated by food and water intake. I started crying the 2nd week but it wasn't depression as much as realizing how sick I was and how horridly it made me alone. The fog starting to lift had tears of, basically, joy! I quit drinking a decade ago, unless it was special... so Friday 2 weeks ago, I was in an exhibit and had a truly trying day and got a glass of wine during the show. Within 20 minutes I collapsed and was violently sick. Can't make that mistake again! Two week blood test showed my liver enzymes dropped 50 points. Now very upset how people are claiming S/R doesn't work for 3a. Hope to God that isn't true for everyone. Six months of this will be enough, I certainly hope they aren't blowing smoke up my ass.

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