Author Topic: First day on Sovaldi/ Ribavirin Combo (Read 44013 times)

virgha828 · « **on:** July 31, 2014, 02:25:53 pm »

Its my 1st day on S/R combo.

I'm type 2 diagnosed in 1994, 6 mil + load Fibrospect F1 alt ast rarely in the abnormal range.

With that said, things are quite bearable for my first day, actually better than I thought it would have been. Im very excited to begin and get rid of this virus! I had some restlessness about an hour after dosing this morning which gave way to sleepiness but nothing major yet.

I hope all that are treating are doing well and those that have finished are cured! I am imagining an all out battle going on inside my body with lots of "C" casualtys!!

Will touch base again in a few.

rainbowray · « **Reply #1 on:** July 31, 2014, 04:01:48 pm »

I'm on the same treatment, you are probably for 12 weeks.
It takes time for the effects to come, may just be mild. I find I am very tired at the end of the day. Drinking alot of water is advised. I been on for a month, no rash yet.
A little restless at bedtime, but I get to sleep after awhile. You have to be at peace with yourself, cause the anxiety the ribavirin can produce can get hold. I have not let it. I found that taking the sovaldi in between the two doses of ribavirin is better for me. Some take the rib/sol in the evening together, but I get to ansy, so I changed. When you get bloodwork, check the hemocrit, and hemoglobin as Ribavirin can have an issue with anemia in some folk. I am waiting for my 4 week lab, for the viral count, it is hard to wait for that.Will get results early next week.

Pelham123 · « **Reply #2 on:** July 31, 2014, 05:50:49 pm »

I have just finished my first week on Sovaldi / Riba. No side effects. My Dr. has blood analyzed each week. My results came back today: AST/ALT are both down, AST better than ALT, but still too high. All other numbers are within normal range. Let us know how it goes for you!

virgha828 · « **Reply #3 on:** July 31, 2014, 08:28:42 pm »

Thank you Rain and Pel

After work today i did get a headache and had sort of a mini meltdown for no obvious reason. My doctor did schedule my first lab for the 7th so 1 week. Please let me know how you are both doing and how your labs come out.

I take the sovaldi in the morning with the first dose of riba then the rest of the riba at dinner. I am on the 12 week program. I am not a big water drinker but did manage to get down about 3 16 oz bottles today, tomorrow i will try more. One day at a time i guess.

DesertGuy · « **Reply #4 on:** August 01, 2014, 02:04:41 pm »

WATER--WATER, drink till you can't , and the better you will feel
I am on same thing--DAY 31__of 24 weeks
I was worried about side effects, but they are manageable--so far
I live in the desert--hot and dry---If I drink LOTS of water and sweat like crazy, I can feel myself washing a greasy slime off in the afternoons--it is such a relief, I know I am washing off toxins
Days I don't drink enough is when side effects come

virgha828 · « **Reply #5 on:** August 01, 2014, 05:19:29 pm »

Thank you for the advice. I'm normally a camel and survive on very little liquid. I am force drinking now . Are you on this longer because of your genotype? Its encouraging to get advice from all of you. Today went well so far just the headache and fog.

My first labs will be Thursday.

HepC53 · « **Reply #6 on:** August 01, 2014, 10:01:31 pm »

Tomorrow, Saturday marks the beginning of my second week of Sol/Rib. I felt little side effects: itchy, sad, achy, irritable all manageable but today the fatigue was debilitating. I got through work but couldn't even stop to pick up pre made dinner and wanted to sleep on the drive home. I'm going to focus on eating better this week. I read fatty foods are hard on the liver. I have my first blood test on the 8th. Please let me know how you're all doing and I'll do the same. Oh has anyone been noticing more hair loss?

virgha828 · « **Reply #7 on:** August 02, 2014, 12:34:16 am »

Im sorry to hear that. I always thought things would get better as you go and as the body got used to the meds but i guess this is not the case with these meds. Do you drink alot during the day? As have read this post and others lots of peoples advice is to drink alot of water. Also iron levels. I have read this as well. I wish you the best on your labs upcoming. Hopfully you don't work on the weekends and can rest your body. I know sometimes with our life situations it's easier said then done but take time for you and your healing.

Keeping the faith, Virg

DesertGuy · « **Reply #8 on:** August 02, 2014, 09:11:25 pm »

the only way I accomplish enough water is with a pad and paper by my drinking glass, 12 OZ--I mark down each glass--------10 is a good day--4 I feel shitty

Krissy · « **Reply #9 on:** August 02, 2014, 11:19:25 pm »

I just finished 7 weeks of 24 on the same. (Type 3 gets 24 weeks). I am still feeling good and the only side effect right now is a dull headache in the afternoon. The water helps a lot! I try to drink 75 or more oz. per day. I carry a water bottle everywhere I go. Also, aspirin seems to help more than Tylenol or Advil for the headaches.
The first week or so I did have insomnia too but that has subsided. I took 1 mg. of Melatonin at bedtime when needed and it helped me sleep better.
My hemoglobin has dropped from 13.5 to 11.5 but it stayed steady this past week. I have not felt especially tired except when I wasn't sleeping well.
After 4 weeks I was undetectable and my liver enzymes are back to normal!

Best wishes on your journey! I hope it is an easy and successful one. Keep us posted.
Krissy

virgha828 · « **Reply #10 on:** August 03, 2014, 04:08:52 am »

Undetectable, that's wonderful! It really blows my mind when I think of how lucky we are to see this day of so many being curd in our lifetime when so many before us did not. They paved the way for this day . My brother passed in 1996 defeated from this. I so wish he could have seen this day as well.

Had a rough night. Very sad and thought i was going a little nuts. I ended up taking a xanax my pcp prescribed for me before i started treatment. It took about an hour and it definitley helped. It calmed me and i finally fell back to sleep.
I had an afternoon headache the first two days too. Those gelpacks you can put in tbe freezer worked well for me.

Water water water a reminder to myself...

Everyone have a great Sunday!

Pelham123 · « **Reply #11 on:** August 03, 2014, 08:04:11 am »

The nurse told me to drink a GALLON of water each day. Don't drink too close to bedtime or you'll be up and down all night. It must be working. So far no side effects, but I'm only half way thru week 2.

jma0590 · « **Reply #12 on:** August 03, 2014, 05:52:50 pm »

my first day on Solvaldi/Ribovirin was Friday. I'm geno type 3 .Wondering what foods to eat.Really achy today. Just wondering what to expect.

virgha828 · « **Reply #13 on:** August 03, 2014, 08:25:43 pm »

Hi jma, you are 1 day behind me. As for eating i eat alot of fruit but thats just me. I have had no nausea at all so i have not lost my appetite. I'm sure there is someone out there reading this that can give advice on that. I've been pushing water and i do think it helps with symptoms. My dr didn't tell me anything about drinking water i learned that from the others here.

let us know how you are doing. We are all in this together!!

Keeping the faith.... Virg

HepC53 · « **Reply #14 on:** August 03, 2014, 11:09:11 pm »

Thanks Virg and all. I keep drinking water and use antihistamines because I am so itchy. My scalp is bothering me especially. I seem to be loosing more hair than usual am I the only one with these symptoms?

lporterrn · « **Reply #15 on:** August 03, 2014, 11:22:07 pm »

I lost quite a bit of hair with Sovaldi/ribavirin - it stopped falling out about 8-12 weeks after I finished treatment. It's growing back.

rainbowray · « **Reply #16 on:** August 04, 2014, 12:05:20 am »

Hi jma0590,
Good eating is important. I found there are foods the liver loves and foods the liver hates. Hate=transfats which is bad fats. Homogonized milk and milk products are transfatty. Bad oils like mazzola, lard, are transfatty. Fats in meats are not that good.
Chicken skin is not good. Things like rice cheese or almond cheese are good.
Raw butter or cheese is good. Artichokes are one of the best things the liver loves.
Avocado=good. Vegetables and fruits. Smoothies. Salads and raw nuts.
Try looking up some liver loving meals on the internet. Coconut oil is the best to cook with. It is good for the liver.
You have to eat something before taking ribavirin so eat healthy things Oatmeal is good in the morning.
I am on sol/riba one month so far, very little side effects as I drink about 64oz of water a day. Exersise is good. I get tired at the end of day, but usually I am active.
After two weeks my alt/ast went to normal, after not being normal for at least 20 years. I get my viral load lab results next week, after 4 weeks was up. I will status results.

rainbowray · « **Reply #17 on:** August 04, 2014, 04:59:26 pm »

HCV RNA, PCR Quant <15
HCV RNA, PCR, Quant <1.8
Note HCV RNA NOT DETECTED

What a great day after being diagnosed over 43 years ago.

Pelham123 · « **Reply #18 on:** August 04, 2014, 05:17:51 pm »

Rainbowray, Yeah!!

So Happy For You.

FRED220 · « **Reply #19 on:** August 04, 2014, 05:23:00 pm »

Very happy for you, I love to see post like this one since it gives me hope not just for me but everyone that is dealing with this virus.

DesertGuy · « **Reply #20 on:** August 04, 2014, 05:25:35 pm »

GREAT!!!!!!!!!!!!
I'm sitting here waiting for my first results to show up online---reading yours is hope as I was diagnoised in 85--

virgha828 · « **Reply #21 on:** August 05, 2014, 07:00:56 pm »

Wonderful news Rainbowray! What great motivation for all of us!

Mike · « **Reply #22 on:** August 05, 2014, 07:58:00 pm »

Good deal! Welcome to the Undie club!

Best, Mike

stevel1953 · « **Reply #23 on:** August 06, 2014, 07:20:59 pm »

I'm on my third day doing S/R. Started Monday. Just feeling tired and a little anxious. Went thru almost 2 treatments of the old interferon/ribavirin but this is a piece of cake compared to that. Was approved for the drug by my insurance but was way out of my price range. Spent a lot of time searching and on the phone looking for some help with the copayment. CVS specialty pharmacy gave me a bunch of numbers to call and found PAN Foundation that gave me a grant to cover all my costs and my office visits. Nothing short of a miracle. Great to find this forum!

DesertGuy · « **Reply #24 on:** August 06, 2014, 07:26:05 pm »

I found PAN yesterday and they are covering my RIBA, as Solvaldi is sending out 5 dollar copays themselves----I just asked my wife--Who funds these copay things?

lporterrn · « **Reply #25 on:** August 06, 2014, 08:10:35 pm »

Desert Guy - the drug company funds them

HepC53 · « **Reply #26 on:** August 07, 2014, 12:55:56 pm »

Such good news on your grant, awesome!

virgha828 · « **Reply #27 on:** August 12, 2014, 09:35:42 pm »

My 1 week labs

started at 6 million plus down to 502! Thats five hundred and two! Alt ast 16 in 1 week! Its a miracle! Thank you Lord Its a happy day!!!!

HepC53 · « **Reply #28 on:** August 12, 2014, 10:23:12 pm »

Great news Virg. Thanks for the update.

lporterrn · « **Reply #29 on:** August 13, 2014, 10:26:24 am »

Virgha828 - Wow - amazing!

jma0590 · « **Reply #30 on:** September 10, 2014, 09:35:45 pm »

I'm going on my 6th week of sovaldi and ribavirin. I have itching, and my mouth started out to have a taste of pepper in it. Now it's on fire. Likeke I bit into a hot pepper. The Dr. gave me some kind of mouth wash. Didn't Work. Any suggestions?

HepC53 · « **Reply #31 on:** September 10, 2014, 09:57:11 pm »

Hi jma0590. I'm in week 6 and was just commenting that I had a soar on the roof if my mouth. Almost like I bit into too hot food. Perhaps unrelated but I'll keep you posted. My labs last week were said to be "stable" I was at work or would have drilled more. I'm pretty unnerved because of the severity of the treatment and I have never met with a doctor only a nurse practitioner. I'm going to ask for copies of my labs. How do I really know? Will I really be "cured"? I've been living a real healthy lifestyle but moving forward what is the plan? Do we get tested regularly? Should I never enjoy another glass if wine, steak? I'm still doing dairy and sugar but wonder how extreme I need to be. Life without my foodie indulgences sounds boring to say the least.

jma0590 · « **Reply #32 on:** September 10, 2014, 10:33:51 pm »

don't give up. my cousin has actually been cured. 12 weeks of treatment. man my mouth burns

lporterrn · « **Reply #33 on:** September 10, 2014, 10:36:37 pm »

Hi jma0590 - you wrote: I'm going on my 6th week of sovaldi and ribavirin. I have itching, and my mouth started out to have a taste of pepper in it. Now it's on fire. Like I bit into a hot pepper. The Dr. gave me some kind of mouth wash. Didn't Work. Any suggestions?

It depends on what your doc thinks the cause is. Here is something to read: http://www.hcvadvocate.org/hepatitis/factsheets_pdf/SEM_mouthsores.pdf
http://www.hcvadvocate.org/hepatitis/factsheets_pdf/SEM_Dental.pdf

virgha828 · « **Reply #34 on:** September 11, 2014, 04:51:56 am »

Hi idk if this would help but my doc mentioned taking B vitamins/ multivitamin when i started treatment to keep mouth sores at bay.
I am at the end of week 6 and am itchy.

HepC53 · « **Reply #35 on:** September 11, 2014, 08:25:12 am »

Virg I have itched the entire time. I take Benadryl at night and scratch like I have fleas. My hair loss slowed down but not without cutting 18 inches off. Although it's hard to exercise because I'm so fatigued (due to low hemoglobin) I think sweating actually helps move toxins out. Water, vitamins and exercise. The saving grace is caffeine is good! Thankful! Hang in there. We're halfway through

virgha828 · « **Reply #36 on:** September 11, 2014, 01:53:04 pm »

Thanx hepc53,

The itching is mostly on my face arms legs no sign of rash thankfully. Best feeling is me in shower with scrubby poof! Am trying to really apply lots of lotion afterwards. I think I've had more issues and feeling fatigued this last week then the whole time on treatment!

HepC53 · « **Reply #37 on:** September 16, 2014, 11:20:38 pm »

Feeling do sick. Bad food choices sugar & pizza my liver must be on tilt. What's worse is this incredible pain in my joints especially left arm & neck. I'm hating myself right now for not paying attention. I guess I took some things for granted like my ability to have milk in my coffee etc.

lporterrn · « **Reply #38 on:** September 17, 2014, 12:27:13 am »

HepC53 - go easy on yourself. We don't shoot our wounded, and we don't shoot ourselves. Sometimes food looks good and we forget what it does to us. That's human. Tomorrow is another day.

HepC53 · « **Reply #39 on:** September 17, 2014, 08:15:53 am »

Thanks Lucinda!

Krissy · « **Reply #40 on:** September 17, 2014, 09:11:57 am »

My doc prescribed a "magic mouthwash" for the mouth sores and sore throat . it is Lidocaine, Benadryl and Milk of Magnesia. It totally numbs your mouth for a few minutes and coats the mouth and throat.
May be worth a try.
Krissy

HepC53 · « **Reply #41 on:** September 17, 2014, 10:18:30 am »

My mouth isn't too bad. I'm glad you found relief though.

jma0590 · « **Reply #42 on:** September 17, 2014, 10:48:34 am »

my mouth burns like I bit into a hot pepper. they gave me some magic mouth wash but it didn't work. drinking water makes it worse. I did try rinsing with salt water didn't help much. I did start to take my supplements again .I slacked off when I stopped working. It is all okayed by my Dr.. B complex, Omegas, calcium and vitamin E. It really helped with my itching. And after a couple of days my burning on my tongue started to calm down.

jma0590 · « **Reply #43 on:** September 17, 2014, 10:50:53 am »

my left arm and neck bother me too. why would that be a symptom?

HepC53 · « **Reply #44 on:** September 17, 2014, 01:24:00 pm »

Jma I have no idea why that's a symptom but when the pain was intense for so many hours I finally took an aspirin. The last thing I need us a heart attack right now.

Cheydal · « **Reply #45 on:** September 18, 2014, 08:06:50 am »

I started today! The ribavirin and the Solvadi, this morning, and then the balance of the ribavirin after dinner. I will then give myself a shot of the Pegasus but not sure when I should do that!!! I work an 8 hour day mon thruthursday and until 2 pm on Friday.. Any suggestions? I plan on a lot of water of course, but I must work! I am 64 and have a Grandson that I take care... He is a Godsend right now!

jberlin · « **Reply #46 on:** September 18, 2014, 09:12:14 am »

Cheydal,

Stick with it and keep us posted! The next few weeks won't be a vacation, but you can get cured! Make sure you have some support to help you keep taking your meds and always post questions here. I suggest you give yourself the shot an hour before you go to bed on Friday night, and make that an early night. I also suggest taking a couple of ibuprofen before you take the shot. 24-48 hours are the main flu-like symptoms, take more ibuprofen as directed by your doctor, so you can then work Monday. Do note that as weeks pass your energy levels will decline, but I did the Friday shot, work on Monday regime for 72 weeks, and never missed a day even while I sometimes felt like crap. I found the painless way with the shot was a tight pinch of flab in my lower tummy, 45 degree angle insert.... Good luck! jack

HepC53 · « **Reply #47 on:** September 18, 2014, 10:13:06 am »

Good luck jberlin. My doc said Tylenol was a better choice over ibuprofen because it is easier on the liver. I didn't have the shot though just the sol/riba. Animal crackers have been my go to when needing something in my stomach and surprisingly coffee is good and 3 cups a day is recommended, really helps with my fatigue. I've never been a dedicated exercise finatic but I have been a back row Zumba girl and feel like crap when I don't go. I think it's the sweating out of toxins and if course pumping endorphins that help. Oh yea, multivatimins too! I'll watch for your progress.

zeena · « **Reply #48 on:** September 18, 2014, 10:20:42 pm »

hi ya*all
I am about to start week 16.My most disabling side effect is memory loss. When my brain works on auto, i am fine. its calculations , money, counting, dates, the sequence doesnt come easy or make sense. I must exercise! or feel achy all over, and depressed. insomnia is rearing her head, and I have never had a problem sleeping.fatigue creeps up, claiming me especially after i dose in the morning, if i dont have a coffee after the meal. thank god for the sun, the beautiful fall weather, and the lake i live by. i LOVE dunking into its 50 degree temperature.!!taking care of myself is the only way i am able to get thru this, work, and run my home.everybody tells me how good i look, if only they knew how how hard its getting to function well.i am super tired ,i wish all of you a pleasant nights rest, and a hepc free future to plan your dreams around.!!2 more months!!(just counted on my fingers)

HepC53 · « **Reply #49 on:** September 18, 2014, 10:53:17 pm »

Thanks Zeena, I am starting week 9. For awhile I felt mentally clearer than I had in years. Now I'm beginning to feel confused again. In the beginning all I wanted to do is sleep now it seems I can't either. I feel better when I exercise too! Hang in there dear. Keep reaching out. BTW, I gave into the antidepressant. My GP prescribed, it's taken away my drive at work but I haven't cried or bitten anyone's head off lately so I think it was warranted.

sgood · « **Reply #50 on:** November 30, 2014, 03:55:58 am »

Hi. I've never posted here before but a friend sent me to this forum when I began the s/r combo back in August. After reading so many of your stories it was almost like getting to know you. Pulled for each and every one of you, was thrilled when so many posted your good news. I just wanted to say thank you so much for sharing your experiences. Apologies for being so late to the party, but here's mine: I was originally diagnosed as non A non B in 1995 when I went to donate blood. Was horrified, though I didn't even know what that meant. Over the years I told many doctors of the diagnosis, but test after test showed clean- to the point I was (repeatedly) told it must be a false positive. In 2006 I found I have RA, and was put on methotrexate. Many blood tests followed, and for a time I still tested clear. Then last year my RA doc gave me the news that I did test positive for HCV. Immediately sent to the GI, biopsy followed and it seemed they rushed me into the s/r combo therapy. Seriously, made my head spin. After 14 weeks (of 24) my GI doc called me last week to say I'm clear: 0% detected, enzymes normal. I still must complete the remaining 10 weeks. I kept a journal of my side effects, and the first few weeks were the worst for me (lot of nausea, loss of appetite, headaches and the like) but as I kept taking it the worst was fatigue, insomnia and anxiety. All the advice re drinking water can't be stressed enough: Drink! All day! Big help. I just felt compelled to thank all of you who helped me through without knowing. I'm sure there are many more (shy) people like myself that have been helped by this forum and your stories as well. Thank You.

Bucky · « **Reply #51 on:** November 30, 2014, 11:12:55 am »

Quote from: sgood on November 30, 2014, 03:55:58 am

Hi. I've never posted here before but a friend sent me to this forum when I began the s/r combo back in August. After reading so many of your stories it was almost like getting to know you. Pulled for each and every one of you, was thrilled when so many posted your good news. I just wanted to say thank you so much for sharing your experiences. Apologies for being so late to the party, but here's mine: I was originally diagnosed as non A non B in 1995 when I went to donate blood. Was horrified, though I didn't even know what that meant. Over the years I told many doctors of the diagnosis, but test after test showed clean- to the point I was (repeatedly) told it must be a false positive. In 2006 I found I have RA, and was put on methotrexate. Many blood tests followed, and for a time I still tested clear. Then last year my RA doc gave me the news that I did test positive for HCV. Immediately sent to the GI, biopsy followed and it seemed they rushed me into the s/r combo therapy. Seriously, made my head spin. After 14 weeks (of 24) my GI doc called me last week to say I'm clear: 0% detected, enzymes normal. I still must complete the remaining 10 weeks. I kept a journal of my side effects, and the first few weeks were the worst for me (lot of nausea, loss of appetite, headaches and the like) but as I kept taking it the worst was fatigue, insomnia and anxiety. All the advice re drinking water can't be stressed enough: Drink! All day! Big help. I just felt compelled to thank all of you who helped me through without knowing. I'm sure there are many more (shy) people like myself that have been helped by this forum and your stories as well. Thank You.

Hello sgood,
Welcome to the forum and I am glad that you found us.
Bucky

badbradley · « **Reply #52 on:** November 30, 2014, 11:47:05 am »

Welcome sgood,
Great news on your Undetect!! Keep us posted.
Brad

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Author Topic: First day on Sovaldi/ Ribavirin Combo (Read 44013 times)