Author Topic: Anyone on dual Sovaldi and Olysio describe the side effects? (Read 302536 times)

mustmove · « **on:** February 13, 2014, 06:00:28 pm »

just starting dual sovoldi and olysio.No Peg, No Riboviron. they are claiming 93-100% cure rate for geno 1
its approximately $150,000 total for both drugs for 12 weeks and I cant believe my insurance is paying. My question is can anyone on the same protocal describe the side effects?
Headache,skin rash, fatigue are said to be the main ones. I did furon 3 times since 1980, enough of that

cynthiachesser · « **Reply #1 on:** March 16, 2014, 10:51:11 pm »

i am on sovaldi and ribavarin and interferon for 12 weeks, just started a week ago like you said excellent recovery percentage. I hope it works cause im so sick

jberlin · « **Reply #2 on:** March 17, 2014, 09:02:16 am »

Wow, I am so excited to hear both of your successful treatment stories in a few months! How far we have come! Good luck and do post updates about your treatment and lab tests for the group. Best wishes for an easy & successful treatment. -jack

lporterrn · « **Reply #3 on:** March 19, 2014, 12:10:01 am »

Cynthia - are you feeling sick from the meds or were you referring to being sick prior to starting them? I am interested in hearing patients experiences on these two drugs. Thanks.

cynthiachesser · « **Reply #4 on:** March 19, 2014, 08:41:01 am »

I am refering to since I started, on shot day and the next day I am really sick,fever,chills,back and neck pain and nausea but the next few days are alot better

jberlin · « **Reply #5 on:** March 19, 2014, 08:57:45 am »

Cynthia, typical interferon fun! The good news is that it is only 12 weeks, so effects will be minimized, such as hair and weight loss. With interferon your best friends, especially 48 after each shot, are ibuprofen and liquids - and rest. I am sure 12 weeks doesn't seem short to you, but only a few years' ago it was 48, with about 40% success rates.

I am curious about Mustmove's treatment side effects - as it does not involve interferon. Rumor has it that it will be minimal - and I hope that is true.
-jack

Mike · « **Reply #6 on:** March 19, 2014, 12:33:40 pm »

I'm currently completing my 9th week of triple therapy - SOL+PEG+RIBV. The side effects aren't as bad as when I did 48 weeks of PEG+RIBV - which was horrible!

I've had some fatigue and minor headaches - but manly fatigue. It seems to have gone by pretty fast, and I've been able to work.

I was undetectable at week 4 and hope to stay that way. My VL baseline was 9 million/ml, which is high. Geneotype 1a with grade 2 fibrosis.

Make sure you drink plenty of water, as it helps with the flu-like symptoms and muscle aches. Tylenol works well managing the headaches and so forth.

Hang in there, the weeks really go fast and the SOL is a game changer!

Best wishes, Mike

cynthiachesser · « **Reply #7 on:** March 19, 2014, 08:45:27 pm »

thx mike, glad to hear it, feel a little better now. I will rise to the occasion. i,m genotype 1 early stage,no liver problems so game on. thx for feedback

Mike · « **Reply #8 on:** March 19, 2014, 10:11:52 pm »

The new treatments are really amazing. I've been dealing with Hep-C for 15 years (had it for 30 years) and was part of the PEG+RIBV clinical trials back in 2000. Although it didn't work for me, the trials were beneficial for many, paving the way for once a week INTF (PEG) shots.

Still, it was 48 weeks of grueling treatment and it was just terrible - I really feel for the folks who did shots everyday or so prior to the introduction of PEG.

Fast forward 14 years and the treatments are down to 12 weeks, and it looks like the PEG will be a thing of past. The results are amazing! 90% chance of full clearance - whereas, it was 30% for genotype 1a with high viral loads in 2000.

Hang in there, Cynthia - there's a lot of hope now. And with the new generation antivirals - it will soon be a 100% cure rate.

Take it one week at a time and before you know it - 12 weeks are gone and it's over. The side effects are manageable. Just remember - drink a lot of water, get your rest and Tylenol really works (I use extra strength and take 2 as needed. No more then 4 in one day). If you get a little dry skin, body lotion is the cure.

Best wishes and know you have a lot of hope for a cure! Mike

Marysee · « **Reply #9 on:** March 21, 2014, 05:07:33 pm »

Cynthia, I am week 5 into Sovaldi, ribavirin, Pegasys treatment. I have had similar side effects, especially the back pain along the top of the shoulders and down the right side of my back. I am actually happy to hear that someone else is having the same experience, my Dr.s said they had not heard that from anyone else. As with you it is bad the few days following the shot and then it gets a little better. I alternate between Ibuprofen and Tylenol and it seems to help, I also have been doing yoga stretches for the back.

cynthiachesser · « **Reply #10 on:** March 22, 2014, 04:27:08 am »

now on week three, doc gave me nausea pills,and pain pills with acedeminephen so yesterdays shot problems were much more tolerable see ya when we are all hep free. HOPEFULLY 12 WEEKS CINDY

jberlin · « **Reply #11 on:** March 22, 2014, 08:07:35 am »

Good news, and yes, hopefully just 9 more weeks! The interferon is a bit more tolerable because your mind and body are more prepared. Not a routine to get used to, but you will sail through the next couple months and report good news here 3 months post treatment! Keep smiling! -jack

Marysee · « **Reply #12 on:** March 22, 2014, 08:48:30 am »

Week 4 test results came in yesterday...Hep C went from 9,250,000 viral load to UNDETECTABLE!! This really is a miracle drug!

jberlin · « **Reply #13 on:** March 22, 2014, 08:54:15 am »

That is great news! Especially compared to your results the 1st time around. You geno 1? How many weeks are you scheduled for? I cried my eyes out when I came back UD after 4 weeks with the Incivek triple therapy - my 1st time it took me 24 weeks to get UD - so yes, these are breakthrough drugs. Now, stay UD from now on and we can all celebrate your success! Good luck, and let us know. -jack

cynthiachesser · « **Reply #14 on:** March 22, 2014, 10:51:06 am »

way to go marysee i,m waiting another week to do my first test hoping for the same

Mike · « **Reply #15 on:** March 22, 2014, 01:03:59 pm »

Congratulations Marysee!

That's a big thing worthy of a celebration!!! It's good to hear news like this.

Hope you have a great weekend - you should have a big smile on your face and a glad breath in your heart, Mike

lporterrn · « **Reply #16 on:** March 23, 2014, 03:31:39 pm »

Fantastic news!

Marysee · « **Reply #17 on:** March 25, 2014, 06:22:26 pm »

Thank you everyone for the support! I did walk around with a big smile on my face all weekend, and my family is soo happy too.

Jack, l am geno 1a, on a 12 week program almost 6 weeks through, having a pretty painful week so far and very tired. Dr. Decreased my RIBA from 6 a day to 4 a day b/c RBC dropped, hopefully that will help.

Cynthia, hoping for the same results fo you too, but this is what my Dr. Said...it doesn't matter what the interim results say, everyone responds differently and the only results that matter are the ones at the end....and then he said and yours are going to be zero! I loved him at that moment. Let us know.

Lucinda, thank you thank you thank you for starting this site and for staying active on it. I can't tell you how helpful it has been for me.

jberlin · « **Reply #18 on:** March 25, 2014, 06:27:59 pm »

You go girl! This time will fly by. Cheering for you, jack

AwesomeMe · « **Reply #19 on:** March 26, 2014, 08:17:03 pm »

I've been on Sovaldi and Olysio since January 21, and I have not experienced any side effects whatsoever. My most recent test results went from 928,778 to NOT DETECTED! Just 23 days more and I'm done. I am sooo blessed! WhooHoo!!

lporterrn · « **Reply #20 on:** March 26, 2014, 08:30:15 pm »

Wow - this is just amazing. Thank you for sharing what is possible!

mustmove · « **Reply #21 on:** April 08, 2014, 03:03:52 am »

AwsomeMe, you seem to be the only one I find besides myself who only takes Solvoldi+Olysio (no other drugs ) I am NO Virus Detected after 4 weeks with zero side effects. This combination is apparently "not" FDA approved, but my liver doc got my insurance to pay nearly $150,000 for 12 weeks.Blows my mind when I take those two pills everyday that cost more than $1000. All my liver panel readings are back within normal range for the first time in 35 years. This is giving me a shot at having some grandkids to take fishing.

Hoozdo · « **Reply #22 on:** April 08, 2014, 03:17:45 am »

Hey Move On,
Now you have found a third person which is me. I started one week ago and the only symptom I have is some major itchiness. It could be because I am allergic to sulfa drugs, which is supposed to be a contraindication to treatment.

My first set of labs will be this Wednesday. I joined this forum specifically to post to this thread because I can't find much else on the internet about double antiviral treatment without interferon.

I am a liver transplant recipient of 14 years. My second liver is cirrhotic now due to HCV (genotype 1 of course). I am a two time loser with interferon based treatment. I NEED this treatment to work very badly because now I need another transplant - post gastric varice bleed that just about killed me.

Nice to meet you

jberlin · « **Reply #23 on:** April 08, 2014, 08:49:23 am »

Hoozdo,

Wow, good luck! You show us, just in case anyone needs reminding, how awful this virus is, and at the same time how far we have come! Best wishes for a quick & permanent UD! Let us know... -jack

Hoozdo · « **Reply #24 on:** April 08, 2014, 11:14:07 am »

Thanks Jack for both the welcome and the cordial manners. Will post my first lab reports later this week.

Ranger · « **Reply #25 on:** April 09, 2014, 08:59:51 pm »

Hi, have been on sovaldi & olysio for 4 weeks, no side real side effects, maybe a little more fatigue. Warning for everyone on this combo, stay out of the sun. I live in Chicago, temps have been in the 50's. I got really bad sun burn in just 10 minutes, even driving in my car the sun coming through my side window burned my face. Use a high level sunblock and cover up

Mpetrecz · « **Reply #26 on:** May 04, 2014, 07:28:39 pm »

I just got the call from the pharmacy handling my sovaldi and olysio. I will be starting them this coming week and I'm very excited. I was on peg and ribo a of few years ago and had a terrible time of them. I am 1A, I don't have cirrhosis but I have scarring and inflammation of my liver. I put up black out curtains in Our bedroom and bought dark sunglasses that are readers.....I am putting my ducks in a row.....hoping for the best....I'm so glad there are others on this forum taking the same meds I'll be taking, going to start the new journey of the rest of my life.....

Marysee · « **Reply #27 on:** May 04, 2014, 08:47:38 pm »

I agree with the sun sensitivity warning...I had a minor rash on my chest, but as soon as I sat out and back in the sunshine a couple of weeks ago every bit of skin that was exposed was rashed.

Hoozdo · « **Reply #28 on:** May 04, 2014, 11:14:39 pm »

I have been on this treatment for 4 weeks and went undetectable at 4 weeks. I don't go in the sun, so can't report sun sensitivity. My only side is extreme itchiness and skin coming off by thin layers.

jberlin · « **Reply #29 on:** May 04, 2014, 11:54:26 pm »

UD at 4 weeks! That puts you over 90% chance of cure if you complete! When I got that news in June 2013 I cried my eyes out because I knew how huge it was.... Keep it up because you are on the road to cure! -jack

Mike · « **Reply #30 on:** May 06, 2014, 08:50:59 pm »

That's great to hear, Hoozdo!

Another dragon bites the dust! ♪♫♪ ♪

8 more weeks and done!

Best wishes, Mike

barbara g · « **Reply #31 on:** May 14, 2014, 11:24:23 am »

Quote from: mustmove on February 13, 2014, 06:00:28 pm

just starting dual sovoldi and olysio.No Peg, No Riboviron. they are claiming 93-100% cure rate for geno 1
its approximately $150,000 total for both drugs for 12 weeks and I cant believe my insurance is paying. My question is can anyone on the same protocal describe the side effects?
Headache,skin rash, fatigue are said to be the main ones. I did furon 3 times since 1980, enough of that

barbara g · « **Reply #32 on:** May 14, 2014, 11:31:53 am »

I just started on the sovaldi and olysio also 9 days ago, after 2 days i changed from taking it in the morning to the evening because i felt so tired/sleepy during the day. the headaches where mild and short for the first 3 days, i was itching also for a few days but that has stopped so far. dont have a problem sleeping as this knocks me out at night. so thats good because i was a terrible insomniac. hope this works for me as my hep c was almost undetectable. i hope the next 10 weeks go as smooth.

Mpetrecz · « **Reply #33 on:** May 18, 2014, 08:25:20 am »

I just want to say, I feel great. Day 5. My energy level is Off the charts. I wake up at 5 and lie in bed thinking, this is too early to get up and then I start thinking of what I want to do today. I pop up and get more done between 5 and 10 am then I have done all day for 20 years. I want to get started with my strength level but I keep telling myself that my body is working hard and I just need to work on that and not push to much.....my strength will come later.... I feel really sharp and even though my skin felt prickly for the first few days...nothing now. I get a mild headache around 8 pm, but I'm tired and sleep fine. I can feel my body healing.....it's weird but I am so amazed at how well I feel.
Hope all is well with all the other warriors here......solvaldi is a wonder drug.

lporterrn · « **Reply #34 on:** May 18, 2014, 09:03:46 am »

Thanks for posting Mpetrecz - I appreciate hearing real-world feedback from people trying the new meds.

sasumo · « **Reply #35 on:** May 29, 2014, 04:18:05 pm »

I'm glad to find this! I started Sovaldi and Olysio combination for geno 1 4 weeks ago. I understand it's considered off label and I pay a $35 a month co-pay for both pills. I received co pay cards when I started. I was in disbelief considering how much this medicine costs. My viral load was 4,800,000 and after 4 weeks it was 'undetectable'. I can barely believe it. I have hardly any side effects except a slight headache and insomnia. I am losing weight too which I did not see on the list of side effects I've read. I'm eating more than I usually do! I know this makes no sense and I'm hoping that beyond the miracle of a real 'cure', I get skinny!! Oh, I got hep c from a blood transfusion in 1975 at age 16 so I am more than ready to get this out of my body and my life!

lporterrn · « **Reply #36 on:** May 29, 2014, 04:33:07 pm »

What a feel good message! Thank you for your story Sasumo.

JohnJ · « **Reply #37 on:** June 06, 2014, 08:53:39 am »

I will start this Monday on Olysio/Sovaldi this Monday (9th). Have had Hep C for 40 years, started with Interferon, years later Inter. with Ribro. And lastly peg inter with Ribro. All of them kicked my butt into mud. Told them I would not try it again. Now here I go. If the side events are as stated in this forum I won't have a problem. Might cut back on my fishing and will have to be careful at grand children's ball games but can live with that. Have enjoyed reading this forum and seeing so many positive statements. I don't understand why some still take with Interferon? So far dealing with insurance has gone well and really pleased with what they are paying. Maybe. After 40 years this will not be a problem. Good luck to all of you

jberlin · « **Reply #38 on:** June 06, 2014, 09:05:50 am »

John,

40 years is enough! Time to get cured! I had Hep C for 36 years, but only relapsed from one 48 week treatment of the interferon/ribavirin dual therapy in 2004. Is this a 12 week treatment? You are Geno 1? They were keeping interferon in the mix for Geno 1 until very recently. Now it looks like interferon will soon not bother Hep C patients again... hard to believe, as it was the 'breakthrough' in the 80's that gave you a 20-40% chance of cure if you could survive the damn treatment!

Good luck and do report your progress and your lab results.
jack

JohnJ · « **Reply #39 on:** June 06, 2014, 09:18:35 am »

Yes Jack this is 12 week treatment and I am geno 1. Believe I can do this standing on my head compared to what I went thru before. Luckie my wife didn't hurt me as I was not "fun" to live with. Amazing drug.

canythingbutaverage · « **Reply #40 on:** June 07, 2014, 02:35:05 pm »

Geotype 1a here, MELD 19, I was noticing the same thing, not many people are on it, since they seem to be trying to give it to patients who cannot tolerate Peg-interferon.

I started both a little over a week ago, i have a 24 weeks treatment due to my decompensated liver, but this treatment is SO MUCH BETTER, i can't even begin. not only is it easier, the side effects are more manageable.

Nieves · « **Reply #41 on:** June 15, 2014, 03:45:04 pm »

Hi I am on my third week of solvaldi and olysio. At third weeks my doctors order a viral load count and am happy to say that it was undetected. My side effects have been very minor. A little itchy, I haven't had an insomnia. And headaches a few but very minor. I have noticed that I go to the bathroom after eating a meal. No diarrhea normal but do go to the bathroom a few times more than usual. Other than this has been a walk in the park. I have this disease since 1973 thru blood transfusions. I am genotype 1b and do have cirrhosis of the liver. I did the interferon and Pegasus twice with no luck, had to be taken off it due to the anemia and bilirubin going off the charts. Hopefully at the end of the 3 months I will be cured God willing. I will keep everyone posted and my treatmentends August 23.

joyce · « **Reply #42 on:** June 19, 2014, 06:23:02 pm »

Started solvadi and olysio 10 days ago and was anyone having joint and musle pain

JohnJ · « **Reply #43 on:** June 19, 2014, 08:07:22 pm »

I started 12 days ago on same and no joint or any pain other than what I always have in my joints. I take Advil and no problem. Hope yours gets better. Good luck to all of us.

Mpetrecz · « **Reply #44 on:** June 19, 2014, 08:39:20 pm »

Joyce did you have joint and muscle pain before? I've heard the hep can cause joint and muscle pain,,....I'm on week 6 S/O and feel pretty great. No side effects, except for the light sensitivity.....which will give me a mild headache that goes away when I close my eyes for a little while....o o o. I do have a new side effect,...my skin looks great and my wrinkles are almost gone,,,,...loving that side effect. Energy is high and brain feels clear and very sharp.

I'm 1a and at 4 weeks was undetectable. All the blood work was perfect. I had a vl of 1,300,000 and am F3

Good luck all!

JohnJ · « **Reply #45 on:** June 19, 2014, 09:04:25 pm »

Dang. If it makes my brain feel clear I may want to stay on it. This all is looking good. Amazing.

Mpetrecz · « **Reply #46 on:** June 20, 2014, 02:31:41 pm »

I told my docs the same thing John.,,,...I'm almost finished my 6th week....alls good.

JohnJ · « **Reply #47 on:** June 20, 2014, 02:54:52 pm »

Two weeks. Too easy. Waiting on something to jump up and bite me in butt. So far I have had no problems and very thankful as I did the old interferon three different times and was sick, lost twenty five pounds (needed to lose 15) and swore I would never try it again. Wife said she would take me out if I did it again. So this has been a very welcomed change.

Mpetrecz · « **Reply #48 on:** June 20, 2014, 08:28:22 pm »

It's not getting any harder,,,...this is a piece of cake....I feel fine...no problems,,,..no side effects.....

joyce · « **Reply #49 on:** June 21, 2014, 07:51:57 am »

Hi, I'm so glad to hear everyone seems to be doing good on these new drugs (solvadi n olysio). I started 10 days ago and noticed headaches off and on. I seem to be having more joint pains, but i used to have some mild before, but now its on both sides. I've had hep for 35 yrs. They tried me on that horrible interferon n ribaroin. That put me in the hospital. This so far seems pretty good, except for mild sides. Please if anyone has any problems please post. God bless everyone

Turboo14 · « **Reply #50 on:** June 21, 2014, 11:45:54 am »

I am so grateful for this forum. I am on day 11 of solvaldi/olysio. I have 1a , I have had HCV for at least 30 years and have not been willing to try any other treatment. I have witnessed the trials, successes and endless side effects of all the treatments out there since 1992. I am experiencing virtually nothing compared to what I have seen before. I too have mild headaches every so often, no insomnia and gladly no sun sensitivity. I get to play outside with my granddaughter and look forward to clearing the virus. Please keep posting! It was this forum that helped me make the decision to do this protocol.

JohnJ · « **Reply #51 on:** June 21, 2014, 12:49:49 pm »

Well I swore I would never go on treatment again because at my age I was not willing to take a year out of my life. Dr. Gitlin and his PA Cathey convinced me the side effects were not bad. 13 days and no problems proves them correct up to this point. Not giving them a pass yet but getting excited. Everyone keep it in road. I might be getting a little too brave (careless) with sun but have had no problems.

Marysee · « **Reply #52 on:** June 21, 2014, 04:33:52 pm »

One month post Peg/Rib/SOV treatment...I did have sun sensitivity and my Dr said it was from the Ribavirin, so mb those of you who don't have to take that will be fine. I also had a great deal of back pain, which is finally starting to subside. Good luck to all, I am so happy these new drugs are helping so many of us

ellensfamily · « **Reply #53 on:** June 22, 2014, 12:29:42 am »

i recently got approved to join your forum and am quite anxious, i started s/o treatment 6/19 for 12 weeks. im being treate thru Lahey specialize clinic for liver in Massachusetts.

i was diagnosed 9/11 w/ hep C due to blood transfusion in late 1988, and went on a trial including rib/int & something else. nearly killed me, all organs shut down.
just awful. hallucinations and brain swelling were the worse. didnt think id ever do a trial again until last week when i heard the wonderful success rate and slight side effects.

my doc downplayed the light exposure, yet i hear from you folks its quite an issue-and i was going to my daughters opening night as a headliner in Vegas in July, guess I'll need to rethink that. can anyone tell me if strong sunscreen, sunglasses & a brim hat would help?

i previously had severe leg cramps but they subsided when i stopped my spiractalone as my feet swelling stopped, so i havent had any cramps til the night i began my protocol 6/19 & often since. lots of water to keep hydrated.

after reading this forum im really excited. tumors have now been observed in 3/14 but growing at a miniscule rate. but because of this a transplant is mandatory eventually-but id rather go into that transplant with no Hep C to infect the new liver!

you folks have all given me hope and i hope all of you have great news and good luck from your doc's too! i will anxiously be watching your progressions as i hope you feel free to offer me input as well
thanks
Ellen from NH

JohnJ · « **Reply #54 on:** June 22, 2014, 07:48:30 am »

I think the light sensitivity is an individual thing. Been on s/o for two weeks and initially put on sunscreen, floppy hat and long sleeves and long pants for first week and went on my morning three mile walk. About burned up here in Ga. Started scaling back and now no sunscreen, short pants Long sleeve shirt I keep rolled up unless in direct sunlight. Maybe ought be little more cautious but have had no problem. Always wear hat if outdoor. Each person reacts differently. Just figure out what your body can do. Be careful. Good luck

producer12 · « **Reply #55 on:** June 22, 2014, 02:04:07 pm »

Hi all , i started Sovaldi/olysio 34 days ago , I already have normal blood work , Yay,I did the interferon back in 2004 omg i thought i was going to die, I did it for 3 weeks short of a year and i broke out in a real bad rash, Doctor stopped treatment , my viral load back then was 12 million and even though i got rid of it at the 2 month mark it came back. I am hoping i will be cured this time,
Anyways i went out in the sun the other day forgetting its one of the side effects and i got a small rash on my arms and bumps on my face, I won't do that anymore, My skin has always been real tough an di healed fast always but i can guarantee u and am sure everyone is different , but u will get the rash if u go straight in sun, I have blue cross PPO and my insurance also approved to pay for my 3 month treatment, Good luck to all and if u have any questions please don't hesitate to ask, George

lporterrn · « **Reply #56 on:** June 22, 2014, 02:17:27 pm »

Welcome Ellen from NH. I am excited for you - just knowing the cure is within reach. Personally, I think seeing your daughter headlining in Vegas is worth the risk. In addition to sunscreen, hat, and sleeves, I'd add the following:
1) An umbrella
2) Clothes with sun-protection materials
3) Just try to stay out of the sun
4) Splurge on really good sun block - my personal favorites are VaniCream and Solar. They are very expensive and I get them on the Internet. I have a sun allergy and would otherwise be a dermatological mess without them

finally hopefull · « **Reply #57 on:** June 22, 2014, 08:42:01 pm »

I have 8 days left!!! thank you God. I I was diagnosed with HCV 1ain late 2008 and it was traced back to 1985 when I would have acquired the virus. I tried the peg ribavirin but did not a good outcome. I decided not to do a second run 48 weeks with plenty I was anemic and just sick of all the time. some of the side effects from the olysio is photosensitivity and I do have that I work outdoors and I get blisters from prolonged sun. my lips get it the worst they hurt so bad. I still get tired easy and I'm hoping that is the medicine either the sovaldi or the off all day or the olysio. dry skin I have really really bad splits in my skin on my hands but other than those it is way better than the peg ribaviribavirin. I don't take anything for the muscle pain I still have because I think one of the contraindicated drugs are nsaids. it has been wonderful to read on here other people's experience.

amocuatli · « **Reply #58 on:** June 24, 2014, 12:57:45 pm »

I have known I had Hep C for 3 years--I gave blood and received a registered letter a month later telling me I had it. I have been searching for an answer since then. I have ADHD and take Vyvanse, so I really was not a good candidate for the interferon treatment. I am 56 and non cirrhotic, but I have a lot of issues stemming from the immune system being in overdrive--sudden joint aches, super fatigue and lately insulin resistance along with a tremendous brain fog that has made me very anxious and stuck in a terrible rut. I'm just going to say what I have noticed I don't know if it's the meds, why they would affect me in these ways, or if it's the big feeling of relief that I am experiencing, or the fact that I'm off for the summer
You can be the judge of that.
I started tx with SOVALDI and simeprivir on June 2, this year. I am 3 weeks into a 12 week regimen.
The first think I noticed - within about an hour was that my vision had cleared- I was amazed by the clarity with which I was able to see details- for example the curtains in the kitchen which have an crocheted edge I could see every stitch and before I couldn't.
I feel so much better-the general malaise that I have suffered from is gone.
Especially the stomachache that I would often get in the afternoon
I can sleep all through the night and wake up rested.
I am hungry a lot and I eat a lot, but I haven't gained weight.
I used to get this "syndrome" I called it where,after I showered in the am; I would start to sweat, get super dry mouth, become anxious, have trouble dealing with simple things like texting, become irritable. The sweating was profuse and would make my first period class a nightmare. This all would subside by about 9am: it usually lasted about 3 hours. It was worse when I was tired, better when I wasn't tired.No one I've ever told has been able to say what it was-- and it has lessened to the point that now nothing happens.
And energy! I have energy! I still sleep- and I treat myself like a recovering person so if I feel the need to go to bed, I do. But I wake up with energy!
Affects on brainfog- I noticed my memory is better for example for the first time in many years I showed up on time, even a few minutes early, to an appointment; I remembered a recipe after making it; little things that make me go hmmm.
Like, I can plan ahead and remember where to turn.
Bad affects:
I have had some minor side effects, usually after I was in the sun ( I of course use all the proscribed remedies like sunblock, hat, long sleeves, etc and I drink a lot of water.
The first was a really really bad headache and swollen eyes, that lasted a day and it was in the first week, the6th day to be exact.
Next I've had a few minor hives We are having class at HZES, right? I need a favor from you, can you pick me up at ELHS? Or on 72 at the place where you turn--or close to your house or your house idk but I need a ride part way ok?an a very light rash- which normally I wouldn't even notice probably-
The last thing is that every couple of days I'll get a small scaly welt about the size of a dime it itches a little but not much usually only when I'm not doing anything else.
And that's all (so far)
I get my blood tested on July 1 I'll let y'all know when the results come back. I started at between 4 to 6 million. I'll let you know more about that when I have th info in front of me so I can be very specific.
Thank you for your posts. It makes it so much easier when you know you're not alone!

amocuatli · « **Reply #59 on:** June 24, 2014, 01:03:13 pm »

A big oops on the last part of my last post i should have read it over. There is something that pasted from a message I was sending to a colleague please disregard and forgive any inconvenience it may have cause you.
Thanks

Mpetrecz · « **Reply #60 on:** June 24, 2014, 01:16:11 pm »

Well amocuatli...whew what a tough name,,,,my sp ck keeps changing it as I type,,,anyway..woot woo!
I am the exact same....no skin dryness....but I feel great...brain went sharp within 2 weeks and my energy is sky high,,,and I sleep like a baby,,,,I eat well and am losing weight,,,I can't say enough good thing,,,o an my skin is beautiful...my wrinkles are disappearing,,,OMG! I love this. I do stay out of the sun as much as possible...even just he brightness and not being out bothers my eyes...and makes me very drained. I love my dark bedroom during the day....but by evening I'm out and doing things outside,,,,,
So you are not alone,,,I feel badly when I talk about hw good I feel...so many are having some issues,,,but not me. I feel great!
I'm 1a and on S/O in my 7th week....undectected at 4 weeks....from a viral load of 1,300,000. Alls good here....hoping for continued well being for all of us!

amocuatli · « **Reply #61 on:** June 24, 2014, 04:09:34 pm »

You can call me amo!

JohnnyD5026 · « **Reply #62 on:** June 24, 2014, 04:41:32 pm »

I have Hep C 30 years now. Liver stage 3. Issues are low platelets and high ammonia level in blood. Am starting 3rd week of Sovaldi/Olysio and have not had any side effects to date. Will see what the sun does to me.
Good luck to you!

JohnJ · « **Reply #63 on:** June 24, 2014, 04:45:10 pm »

Be careful. Starting my third week and have been little careless and in sun just little Sat and blistered my lips. Dump ass me.

AutumnHope · « **Reply #64 on:** June 26, 2014, 11:42:33 am »

I started Peg,Rib & Sovaldi took for 3 weeks developed Dress syndrome on day 2 of treatment. Today I stop Peg & Rib and will take Savoldi & Olysio along with the Dress Syndrome meds.

amocuatli · « **Reply #65 on:** June 26, 2014, 11:57:34 am »

I do believe we are entering a new era in Hep C and I wish a speedy relief for all of my fellow sufferers. I'm on the Olysio/SOVALDI combination
For the last two days I've noticed small welts some are itchy one itchy enough to make me wake up. Today I'm slow and my tongue is a little swollen --but nothing awful or earth shattering!

Debby · « **Reply #66 on:** June 30, 2014, 04:22:48 pm »

I started taking the Solvaldi & Olysio last Friday, Saturday I was very nauseated and slept most of the day, but Sunday felt great and so far today also. Can this really be a cure??? I am 1b and have done pegalated interferon and riba twice before and relapsed. Good luck to all.

JohnJ · « **Reply #67 on:** June 30, 2014, 04:36:30 pm »

Three weeks in and like you wondering if this can really be a cure. I've actually had no side effects. YET. I was in interferon/Rib. Three times and relapsed. Just feel like this is going too easy. Yet that is what everyone is saying. Good luck to you and to us all. Time will tell!!!

lilsis · « **Reply #68 on:** July 01, 2014, 10:11:11 pm »

Hello everyone. My brother is type 1a with cirrhosis and MELD 20; treatment naive and started Sovaldi/olysio a few weeks ago. About a week later he had eruption of multiple blisters on hands/feet/face. After reading through this thread I am now more convinced the blisters were a result of photosensitivity. He has since been taken off the meds and will follow up with transplant program next week. I am hopeful that he can go back on the meds with extreme sun precautions. He would sit outside to warm up as he is often cold but not longer than 10 mins or so. Complicating matters is he has vitiligo where he has lost pigment in several areas of skin.......not surprisingly it was the unpigmented areas that blistered! I appreciate being able to read first hand experiences as this is fairly new treatment and as a previous poster mentioned this combo is not yet FDA approved.

MMMiami · « **Reply #69 on:** July 05, 2014, 11:35:14 am »

Thanks God for this forum. Have had hepC for more than 30 years. Have try every combination of drugs that have come to the market, sometimes felt like a guinea pig. But thru my Doctor and the insurance company BCBC they are providing me with the sovaldi/olysio combination

for $100 a month. Started 5 days ago and the only side effect has been headaches!! Nothing compare to the one's in prior treatments.
Was thinking about going to the beach but since reading your comments that is out of the question. I pray that this time I can get rid of this horrible nightmare!!

Mike · « **Reply #70 on:** July 05, 2014, 12:20:41 pm »

I'm praying for you, too, MMMaimi,

The new generation of drugs have been real game changers (and, since you're not taking INTF+RIBV the side effects should be very manageable.

Make sure you're careful while in the sun (screen block, long sleeves, hat and sun glasses) as the Olysio makes you very photosensitive.

Best wishes and let us know how it goes,

Mike

Mamalof3 · « **Reply #71 on:** July 06, 2014, 11:39:25 pm »

I started Olysio and Solvadi on June 4th. Have had a few headaches, little nausea. My main issues would be the fatigue I experience and sun exposure . Other than that I am doing ok. After 2 weeks viral load went from 1,300,000 to 40. Doc says this is a great sign treatment will work for me. I sure hope so.

Mpetrecz · « **Reply #72 on:** July 07, 2014, 08:00:31 am »

I'm down to four more weeks left on the S/O combo. I feel great. I was cleared at 4 weeks. My blood work is beautiful with no issues, my head aches were on bright days...photo sensitivity thing. I had pain in my side but that's gone now too...I've even figured out the sun thing. If I don't hang out...I'm fine...I stay in the shade if I'm out. Eating great....sleeping great...brain is fast and true....alls good. Hang in there everyone....the first week was the hardest....body adjusting thing,...

irfrank · « **Reply #73 on:** July 07, 2014, 09:11:37 am »

I've been on solvaldi/olysio for about two weeks. No side effects. Too soon to know results. Stay out of sun I wear a hat to cover my bald head

mitpabon · « **Reply #74 on:** July 07, 2014, 09:25:44 pm »

Sovaldi/Olysio:
Began Hep C Treatment: Sovaldi/Olysio April 23, 2014
Zero at 40 days into 3 month treatment for type 1b.

Beginning Viral Load = 4,200,000
No prior interferon treatment.
Viral load march = 2.5 million, 4.6 million last year
Viral load june = ZERO!

Sovaldi is amazing!!

Notes:
I felt a difference as early as 2 weeks...I noticed "that enlarged liver" feeling GONE Thank God!!

Side FX: tired - nothing I can't handle, insomnia, minimal infrequent nausea

mitpabon · « **Reply #75 on:** July 08, 2014, 08:03:46 am »

Side effects continued...

My urine has fluctuated from very yellow to clear...almost feel like my body is flushing itself. I try to keep drinking water as much as I can tolerate. I recommend "True Lemon" packets which comes in packets meant to be added to standard water bottle size.

I'm on my last 2 weeks and I also feel like my body is flushing itself...because of the often yellow urine.

Energy level is off the charts and insomnia is getting worse.
The occasional dull minor headaches have pretty much subsided since starting into my last month.

Hang in there...it gets better!

Anette · « **Reply #76 on:** July 08, 2014, 05:31:52 pm »

Hi
Im from Sweden so forgive for my poor english and spellin.
Im Female 53 years old. Got Hep 1978 without knowing. Found out 2010 and start an Interferon treatment. Had to stop because it didnt work. 2011-11-11 i did a livertransplant. New try with interferon last spring 2013' had to stop that too because of a huge and dangerous rejection.
Now im on my 16:th day of Olysio and Sovaldi. Took the first bloodtest monday two days ago. They will call me tomorrow. I have 23 milion virus. First time i "only" had 2.3 milion.

So far i feel great, small pain in the head. I feel like a fast car thats perfect with flat tires if you understand what i mean. I didnt know it took so fast to feel different but i do.
Here in Sweden we are about 50 people ho can take this medicin, it was released in may, so there is noone to talk about experience and questions, so i found this forum and it makes me so happy to read what you all have been thru. I come back i tell you what the bloodtest say, i hope its good news.

I got the Hep from a blodtransfusion i did in the hospital

Anette · « **Reply #77 on:** July 09, 2014, 08:04:06 am »

Got the call from nurse. I had 23 milion 2 weeks ago, today i have 2430 thousend. Im so happy and i even feel better today, its small changing each day. I feel clear inside my head in a strange way.

irfrank · « **Reply #78 on:** July 09, 2014, 09:47:09 am »

Had 4th checkup after 2 full weeks of Solvaldi and Olysio. Started with viral load of 4,700,000. After one week it was 1,440! Feeling better. No side effects. 10 more weeks to go. This whole experience is unbelievable. I'm in a drug trial. They pay for it all. In South Carolina, USA.

irfrank · « **Reply #79 on:** July 09, 2014, 09:50:52 am »

Annette-- great to hear about your good results.

Mike · « **Reply #80 on:** July 09, 2014, 11:46:49 am »

Man that Sovaldi is amazing. Great news!

Mike

willie g · « **Reply #81 on:** July 09, 2014, 12:22:54 pm »

hey ANETTE, WELCOME, I WAS IN FRANKFURT GERMANY AWHILE BACK AND WAS DATING A SWEEDISH LADY. I HAD A CHOICE AT ONE POINT,DESERT FROM MILATARY AND GO TO SWEEDEN TO LIVE OR CARRYON SPITSHINING MY BOOTS.BY THE WAY MY ENGLISH ISNT TO GOOD EITHER AND IM FROM USA LOL ANYWAY YOUR ENGLISH WAS FINE AND THIS IS A GREAT FORUM AND BEST OF LUCK TO YOU. WILLIE G

Anette · « **Reply #82 on:** July 09, 2014, 12:45:37 pm »

Thank you Willie. Its a pity you dint choose Sweden, great country. My treatment are sort of free. You pay 140 $ and after that you have a free year at any hospital! surgery, everything that is about your health. When 1 year pass, you pay another 140$ and there you go, a new year of everything free.

virgha828 · « **Reply #83 on:** July 09, 2014, 02:20:36 pm »

Wondering how you are doing Sasumo hope all is going well!

Jim · « **Reply #84 on:** July 09, 2014, 03:30:14 pm »

Mustmove, Day 42 out of 84 today for me. Yep half way today. Sovaldi and Olysio is a piece of cake.. I was on the Peg and Rib in 2001 and that almost killed me. If you keep yourself busy and nap if your tired the days will fly by. I get up real early and have a small breakfast take my pills and what little side effects these drugs have are gone by noon. After 3 weeks my HEP C RNA my test came back as not being detected. I hope that means its gone and the drugs are not just masking the disease from the lab testing for the HEP C. After living with this MONSTER for 43 years and having tried every plant, grass, herb, and tree in ten countries LOL not counting the PEG/RIB I have high hopes this combination... good luck and welcome to the forum... Sincerely Jim

sasumo · « **Reply #85 on:** July 09, 2014, 07:19:43 pm »

I am dong great thanks! My bloodwork has continually come back with the virus as 'undetectable'. I was advised that if the virus is to return, it will probably be within the first 4 weeks after treatment. My last pills will be July 15th....then the blood tests in August will be very critical! I am very grateful so far.

Anette · « **Reply #86 on:** July 09, 2014, 08:34:17 pm »

Sasumo, i cross my fingers for you. It will be fine, im sure of that after i only had read fairytells stories about this medicin. The medicine seems that it all is a dream. To good to be true. And it is all true.

Dharn55 · « **Reply #87 on:** July 09, 2014, 09:51:36 pm »

I just took my first dose a few minutes ago. Here's hoping I am on my way to a cure!

mitpabon · « **Reply #88 on:** July 10, 2014, 01:32:00 am »

Sasumo,

I will also take my last sovaldi 7/15! Feeling great thank God!
Fri 7/11 I get bloodwork...I will post results as soon as I get them.

doug · « **Reply #89 on:** July 10, 2014, 02:42:52 pm »

I just started the 12 week olysio / sovaldi treatment. So far no bad side effects except the photosensitivity. I went outside for twenty minutes with long pants and sleeves and lots of SPF 50. However I did not wear sunglasses. My eyes felt as if they had been flash burned by a welder and watered profusely the rest of the day. So be warned - cover up and wear sunglasses with good UV protection. Fatigue is slightly increased but I have been feeling that way for 5 or 6 years anyway.

Mpetrecz · « **Reply #90 on:** July 10, 2014, 04:40:37 pm »

Doug, I had photo sensitivity for the first few weeks....now I just wear sunglasses. I go outside dressed for summer, but I don't hang in the sun....I'm fine...but in the beginning my skin felt prickly,,,,now...not so much.
I have 3 and a half weeks left on the S/O....and I saw my docs for the last time for 6 months,,,,I guess I'm done,... A few more blood tests...12 weeks..6 months....I cleared at 4 weeks and feel great....no side efffects anymore,,,,

It feels uneventful, it feels like I should have a big party...or something to start the beginning of my new life,,,...and no...I'm not planning on relapsing,,,..I feel cured and it's finally over, a few years ago I thought this day would ever come,,,,but it has.

Wow.....

Anette · « **Reply #91 on:** July 10, 2014, 04:42:46 pm »

Hi again. I have one questin. Does anyone of you notice a different on weight? Did you in that case increase in weight or lose weight? I can feel that i have more water inside, i feel a little swollen. Maybe because its very hot here now in Sweden.

amocuatli · « **Reply #92 on:** July 10, 2014, 04:59:39 pm »

I started with a viral load that was fluctuating between 6 and 4 million after 4 wks of SOVALDI and Olysio it has gone down to 15 million. Is there still hope for a viral response? Is this normal?
I want so badly for this to work!
My doctor doesn't have any experience with these meds she's not sure!!

mitpabon · « **Reply #93 on:** July 10, 2014, 11:57:30 pm »

Anette,

I have put on some weight & can feel that i have more water inside but, no swollen feeling. After second week of treatment I lost that "enlarged liver feeling"...
7/15 is my last pill day.

doug · « **Reply #94 on:** July 11, 2014, 07:44:21 am »

has anyone noticed a difference in taste? it is only day 4 for me and it seems like everything I eat tastes bland and kind of nasty. if anyone experienced this did it pass? I think if this persists I will surely loose some weight. I have lost about 30 pounds of muscle mass already and can not afford to loose any more.

Mpetrecz · « **Reply #95 on:** July 11, 2014, 08:29:58 am »

Amos, I don't know what to say, please let me know what thoe doc says.....this would concern me too,

Mike · « **Reply #96 on:** July 11, 2014, 01:16:33 pm »

I noticed it - but I was on SOL+INTF+RIBV.

When I was treated in 2001 with 48 weeks of INTF+RIBV I didn't notice any new taste - though Ribvirin is know to cause a metallic taste for some.

The taste I noticed when on Solvaldi, seemed to be "peppery" type taste; however it could have been caused by the RIBV.

It's hard to separate this out - since I didn't have the taste in 2001.

Best wishes, Mike

Anette · « **Reply #97 on:** July 11, 2014, 01:40:47 pm »

Im on day 19 now. I have not noticed anything with the taste, what i do now is that i have a rinnning nose directly after a meal. It stays only a couple of minutes, then its gone. Anyone else?
Once again...i feel clearer and clearen i my head each day. So fantastic, its hard to catch up the feeling, everything went so fast. I feel happy inside, i cant remember when i had this feelings before.

doug · « **Reply #98 on:** July 11, 2014, 02:33:21 pm »

it's not a bad taste in my mouth. it's just that whatever I do eat tastes the same-- tastesless, and bland like a rice cake.

lporterrn · « **Reply #99 on:** July 11, 2014, 02:38:43 pm »

That is a common side effect from many medications and supplements, not just hep C ones. I tried varying my food, and found myself eating foods I previously disliked. Also, I focused on textures, esp. crisp foods.

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