Hep C Discussion Forum

Fireman Rob · Senior Member

RE: Just took my first dose of Sovaldi and Olysis - Advice.

BobK · Member

Hey Tig,

The doctor did not do a baseline VL, but I am pretty sure it had to be around 16-22 million. My last VL was a few years ago and was around 15 million if I remember correctly.

My CBC does look pretty good, so yeah, I was very happy about that. I was just so hoping to be rid of this by the 4th week. I had heard that many are clearing by the 4th week.

I haven't spoken to my doctor yet about the results, but I just wanted to ask everyone on the forum what they thought, since I know a lot of you all have gone through it.

Tig, thanks so much for explaining it all to me. Your response has definitely calmed me down and I am starting to feel better. I was really bummed out for a while. I greatly appreciate everyone on this forum. It really does help to talk to others about this.

Bob

Tig · Admin

Hi Bob,

Your lab work is fantastic! I'm very impressed with those numbers and see nothing to be unhappy about. Your viral load indicates you have a total viral count below the lowest level of quantification, which is 15 in this example. I don't remember you mentioning what your baseline VL was, do you remember? Regardless, I'm sure that at your next scheduled VL test date, you'll be undetected. We have seen many people come back detected at their week 4 VL and undetected at all tests past that. So I wouldn't be concerned about this at all. Many doctors aren't doing the initial VL until EOT. So trust that you'll be UND next time around and enjoy the excellent results you have with the rest. They really are stellar!

Tig

Steverino · Newbie

Your blood work looks much better than mine. I started s/o 10 days ago and have had every side effect and then some. Started with nausea then slight headake. Insomnia and two nights of nightmares. Now it's fatigue. It has too get better than this. If it wasn't for the memory of what 1&1/2 yrs of interferon was like I would not have made it.

BobK · Member

So I have my 4th week blood work and have not cleared the virus yet. A little disappointed, however keeping my faith high. I needed some help determining what exactly this means and if it is a good or bad sign.

Here are the results

Component	Standard Range	Your Value
Hepatitis C RNA	<15 IU/mL	<15 DETECTED
Hepatitis C RNA	<1.18 Log IU/mL	<1.18 DETECTED

I have also attached all my blood work. Everything else looks like it is all good, so that is encouraging.

Just a little freaked out at the moment. Would love to hear what others think.

Bob

Marypetrecz · Senior Member

I wouldnt worry.....it will be fine....if you're not cleared at 4 you'll. e clear soon after. This isn't a brutal or extreem. It's subtle and definate....so go with the flow....don't stress..... I heard it gets tougher at the end ...... But I'm not anticipating anything but being free of this disease. I could complain about the heat and humidity....it still hits me hard, but I'm getting my work done and finding time for this I haven't done in years.....last yr..before the meds....the heat and humidity completely wiped me out,,,,I couldn't function in it at all. So things are better.

let the pills do their job,,

don't stress.......it's not bad...it will be all good. Smile and find joy.....it's coming your way.

BobK · Member

Mary, thanks for sharing and beautiful horse by the way.

I wish I could say I was having the same responses to treatment in the beginning that you are describing. For me, it has just been like taking two sugar pills in the morning and that's it. I can definitely tell that it is helping, but at a very slow pace. I guess I will have to wait for the blood results to see exactly where I am at. I was really hoping to clear by week 4, so keeping my fingers crossed.

I do know of two other people that did not clear at week 4, but was undetectable at week 8.

Marypetrecz · Senior Member

My doctors tease me.....I told them in 2 weeks it was gone, I felt it gone, my brain went clear...like crazy clear.....my energy level and strength went back to how I was in my 20s and 30s. My skin is fantastic....I sleep better than I have in decades. I knew. I was right. I'm undetectable at 4 weeks.

proir, I was tired all the time...i had to pace myself to get through a day....I had stomach issues.....and I still might have them,,,well see,,,I had achy joints and muscle pain,,,,..now it's gone,

I hope that helps. My docs told me I'm the most turned around they've seen, I tell them I'm an equestrian,,,,,even though id stopped riding I was still caring for my horses and my grand daughters ponies,,,,,it s a very physical life,,,,now I can't wait to get back in the saddle....I was told NO riding until I'm finished the meds,,,,,no risk of injuries,,,,yeah..like that would happen,,,,not. But I'm behaving and not riding....but soon....mid august....woot woo! Time to start showing again,,,,,this is my person horse.....

-- Edited by Marypetrecz on Wednesday 18th of June 2014 02:58:47 AM

BobK · Member

Mary, did you have any issues with your Hep C before treatment?

I have heard a lot of people saying they could just tell the virus was gone within the first two to three weeks. In my case, I really feel no difference at all, but I have tried to take care of my body the best I can.

Marypetrecz · Senior Member

I have no side effects....except for positive ones, I was undetected at 4 weeks on the S/O. I'm starting week 6. I had a mild headache and the bright light hurts my eyes after a while, but overall I feel great, i do get tired and rest more than usual, but then I'm refreshed and back to high energy.......I feel badly saying how good I feel,,,i know a lot of people don't,

I had gall bladder problems but that's checked now with diet, I stopped taking all supplements way before i started the meds, not that I took a lot anyway,...lol. I don't want anything to interfer with these wonderful meds.

Turnsit · Veteran Member

Say Kurt, can you tell me how much time you can spend in the sun, it makes me itch, even heat makes me itch, mostly my hands,mvaseline or zinc oxide stops it though. I itch even if its overcast from ultra violet light. But i am dying to be out in soft sunlight at end of day for evev a ten minute swim in the ocean. How much time can you spend outside? I am on solvaldi/olysio, piece of cake compared to my year on riba/interferon in 2004. Have f2 cirrhosis but with my diet and cycling its not a problem i feel at all. I was platlets 18 before i started this tx. Now they are 84! Had major bled out in april b4 i started tx. Two blood transfusions back to back saved my life, am back up cycling two hours in the dark with bike lights again, looking forward to being in the sun again. Its tough b/c i am solar powered or so people say...thanks for any advice in advance. Aloha

Turnsit · Veteran Member

I agree, also research says cod liver oil is very dangerous for those with liver disease. I take nothing, 42 yrs. with virus, age 62, 1b chock full of cirrhosis but i cycle hard to pump oxygen and blood thru my liver and eat only gmo free and organic foods, only 400 mg of sodium a day and 6 cups of fluid, all and any fluid, a bit more when i cycle 35 mile treks but not for 16 mile treks Or less...

Turnsit · Veteran Member

I will be finished with 6th week before i get any feedback. am on olysio/solvaldi. I was undected on riba/interferon the entire TX and at the end, there it was again, full blown. I am not concerned with the issue at all, yes I hope to kill it this time but only time will tell, it does sem that many are cured on this TX though so I remain hopeful. Your chances are super good!

BobK · Member

Hi Everyone. The doctor took my 4 week blood work to see if I have cleared the virus yet.

I have seen a lot of posts of people saying you are supposed to go undetected by week 4, but I have seen some others that are not clearing until their 8th week.

Can anyone comment on this? I like to be well informed and may help ease my mind over the next week until I get the results of the blood work back.

Bob.

Omnamahshivaya · Senior Member

My doc put me on sleep medicine and antidepressants b/c i was waking up every hour and a half at night. still takes me forever to fall asleep. my toddler wakes me up at 6am. So luckily my hubby was home yesterday and I slept 13 hours! I haven't slept that long since I was 6 years old.

Also, since Olysio patients need to avoid the sun and it's getting in the 90's here, I recommend green pastures cod liver oil with butter. It's amazing. I mix it with yogurt, maple syrup B and mix in the cod liver chocolate cream and voila! Health!

ET · Member

Peter M wrote:
What I am worried about is that 12 weeks of Sovaldi and Olysio will not be long enough for someone who has had cirrhosis for 10 years and Hepatitis C for 45. At four weeks I was still not undetected although my VL was below 26 and above 7. I am enjoying life without the high viral load and never want to go back!!!!

Hi Peter,

So far the SVR UND rates with sovaldi/olysio are just about parallel for cirrhotics and non-cirrhotics, sonot to worry. The main difference seems to be in stronger side effect affect symptoms that are experienced by cirrhotics. Just hang in there until completion and get the HCV out of there. Then treat the cirrhosis/fibrosis is my suggestion. Let us know how you are doing.

Don

Peter M · Veteran Member

Thanks Mallani et al...

I pretty much have given up all supplements now except for vitamin D3 and 5htp and melatonin for sleep and SAM-E for depression. I take the SAM-E at least 4 hours earlier than the Sovaldi and Olysio and the 5htp and melatonin about 6 hours later than the Sovaldi and Olysio. Unfortunately my fasting blood sugar has now gone up about 10-20 points into the diabetic range (122). But I suppose I can live with that for another month.

What I am worried about is that 12 weeks of Sovaldi and Olysio will not be long enough for someone who has had cirrhosis for 10 years and Hepatitis C for 45. At four weeks I was still not undetected although my VL was below 26 and above 7. I am enjoying life without the high viral load and never want to go back!!!!

mallani wrote:
Guys,
You're playing with fire taking all those supplements. We just don't know what effect they have on the action of Sovaldi and/or Olysio. They're a waste of time anyway, so give them a rest until SVR. Then you can take what you want.
Your liver doesn't 'hurt'. It has no pain receptors. There may be a mild ache during acute inflammation when the liver capsule is stretched. Most pain in that region is muscular. Cheers.

angelwish · Member

Had to chime in smile .

DH on day 4 and has no side effects so far.

Doctor said stay out of the sun and use sunscreen.

Doctor said b-complex and vitamin d OK. DH sees a Kinesiologist and was taking some adaptagens/herbs these were stop per doctor.

We are thankful to get approved for the off label treatment.

He has not stopped his gym routine and his appetite is fine.

Keep the faith and good luck to all.

BobK · Member

Hi All, Just checking in...Day 15 on the Sovaldi and Olysio.

Still zero side effects, thank goodness. I am starting to feel slightly better and better with each passing day.

A few things I have noticed as a positive, I typically have small liver spots on my hands, but they seem to be clearing up. Same as a rash I typically have on a spot on my chest. My liver has less of a tight feeling. Overall just feeling better. Energy levels still fluctuate. I have days that I can work all day and others where I feel I need a power nap.

I won't get my viral load test done until the 4th week, so no news on if I still have the virus. Going by my body responses, I would say I still may have it, but we are heading in the right direction. I am hoping things get even better.

Bob.

Gator Man · Senior Member

mallani wrote:
Guys,
You're playing with fire taking all those supplements. We just don't know what effect they have on the action of Sovaldi and/or Olysio. They're a waste of time anyway, so give them a rest until SVR. Then you can take what you want.

As always, Malcolm is succinct and absolutely correct. I would strongly encourage everyone to discuss all medications, including over the counter as well as supplements, with your medical provider. My doctor prints out a list of all medications and supplements that he has listed and goes over it with his patients at the start of the appointment. At the beginning of Tx, we discussed taking melatonin because of insomnia associated with Olysio, which he approved. He subsequently added Vitamin D because of low test results and reviews dosage at each appointment.

I know that Gilead & Janssen both have lists of contraindicated meds and supplements for Sovaldi & Olysio. I recall that St. John's Wort was one of them, but there may be other supplements as well. Given how new these meds. are as well as the fast track approval from the FDA, I don't think they have the volume of data to definitively list all the possible interactions with the myriad of supplements on the market. Why take the chance, especially if it hasn't been cleared by your doctor.

OldenSlow · Senior Member

Hi Mary and welcome to the forum. There's a useful abbreviations list in the New Members section of the forum (top thread):

Forum Abbreviations

Good luck with your TeeEcks wink

wayne

patiently_waiting · Senior Member

Marypetrecz wrote:
What does tx mean?

Treatment. Any time you see a letter with an x right after it it's because it's used so often people are tired of typing it out. :)

Marypetrecz · Senior Member

What does tx mean?

Isiscat2011 · Guru

mallani wrote:
Guys,
You're playing with fire taking all those supplements. We just don't know what effect they have on the action of Sovaldi and/or Olysio. They're a waste of time anyway, so give them a rest until SVR. Then you can take what you want.

_________________________________________________________________________________________________________________

Oh, so you want to be reasonable, huh? But, how about just one little Vitamin C pill? lol

mallani · Guru

Guys,

You're playing with fire taking all those supplements. We just don't know what effect they have on the action of Sovaldi and/or Olysio. They're a waste of time anyway, so give them a rest until SVR. Then you can take what you want.

Your liver doesn't 'hurt'. It has no pain receptors. There may be a mild ache during acute inflammation when the liver capsule is stretched. Most pain in that region is muscular. Cheers.

BobK · Member

Morning everyone, Day 6 and I woke up feeling not so good today. I can tell the virus is still in me pretty good. I woke up to my left foot feeling numb and achy. And that usual tightness under my right rib cage. For me those are signs that the virus is causing havoc. I guess I was hoping that these meds would get in there and just wipe me clean in a matter of days.

Can anyone else tell me their initial reactions with these meds in the way of positive interactions? Like when did you notice it was definitely working, etc? When I was on the trial back in 2011, if I remember correctly, it was just a matter of days that I could definitely tell the virus was dying off.

Also, I noticed people are taking one pill in the morning and one at night or 2 hours after taking the first one. My doctor has me taking them both together in the morning with breakfast. Do you think it matters?

Just curious...Bob

-- Edited by BobK on Sunday 25th of May 2014 04:12:21 PM

Tig · Admin

Hi Bob,

I just wanted to pop in and mention that it's so important to concentrate on proper hydration. I always drank 2-3 liters of good, filtered water everyday. You can drink too much water, so don't overdo it. I've seen it mentioned time and again, that people who concentrate on proper hydration have fewer side effects overall. I've seen it reduce or eliminate headaches, rashes and other issues that were helped by nothing else. So keep it up, it really helps!

Tig

BobK · Member

Day 5 and I think I got my first side effect. Took my dose at 10am and around 2 1/2 hours later went to the movies (New X-Men in my opinion is the best one of them all) and I noticed my thyroid gland started hurting. Then about 45 minutes later I felt a little pain in my kidneys. Very minimal though, so nothing to worry about. My thyroid still acts and its around 5 hours. The sore kidney feeling is gone. I have been drinking a lot of water which seems to help.

Not complaining at all if this is as bad as it gets, just throwing it out there in case anyone else has a similar symptoms, etc.

Bob

Turnsit · Veteran Member

I too agree, I so want my TX tto work this time around. Good luck, I find this TX a piece of cake...

BobK · Member

I have to agree with OldenSlow. I have stopped all the supplements and other things I was taking. I do not want to take the chance of these drugs NOT working. So for now if I have to suffer a little from not taking supplements, etc than so be it.

Peter, I think I would talk to your doctor just to be 100% sure that nothing is hindering your success. Good luck.

OldenSlow · Senior Member

Hi Peter,

If I may ask, why all the supplements? It's the treatment drugs that will ultimately save your life. Seems like a lot of your pre-treatment problems could well be HCV-related and dumping the virus should be job #1. Personally, I wouldn't be willing to chance any adverse interactions and would avoid most all of it. Just my two pennies worth..

wayne

suziq · Senior Member

Hi Bob,

I think Merck was talking about supplements (like Peter takes) rather than basic vitamins. Vit D is probably fine. I have no idea about the apples. Neither did my trial coordinator. I did buy an apple pie shortly after EOT. I did miss apples during Thanksgiving and Christmas. Also could not go dunking for apples at Halloween LOL.

I was <25 weeks one and two--UND at week four and since. So I haven't had the virus running thru my body since last October. Just waiting for the EOT+24 labs on July 1.

You are taking a different set of meds from the ones I took. I do know one person who did the COSMOS trial. I can email her and see if they gave her a list of what she could and could not take. She was on the other forum a long time ago. She took a lot of supplements before the trial and I know she doesn't take any now. Been SVR for at least a year. She was the person who urged me to look for a clinical trial--privately. I am very grateful to her. I will get back to you when/if I hear back from her.

SuziQ

BobK · Member

Hi SuziQ,

I was wondering if they said why no apples? I typically have apple juice with my oatmeal sometimes in the morning. Kind of a sugar fix I guess. I better stop for now just in case.

I think you are right, it is too early to tell what are the reactions to vitamins. But it seems that the B12 was okay. I would be fine if I could have my B12 and Vit D back. Those two are the main ones that seems to make me feel really good.

May I ask at what week you obtain UND?

Bob

suziq · Senior Member

hi Bob and Peter,

I was not allowed supplements during my trial except for one iron pill to offset ribavirin(Stopped at end of trial) and Vit B-12. These were suggested by the trial center. I did as I was told because my goal was SVR. BUT it makes me think that others who did clinical trials may have been asked to stop supplements during the trial. I got a bad cough during the trial and checked with my trial coordinator to see what anti-biotic was allowed BEFORE I took one. I carried a 24/7 card with me that said to call trial center in case of any illness or medical problem. I was not allowed any antacid during trial as it might interfere with the absorption of the meds. My blood pressure med and diabetes med were approved by Merck before I started trial so I took those. I was told (and given written list) of things NOT to eat during trial--grapefruit, apples, orange marmalade (oranges ok), pomegranates, ANY antacids. I didn't ask why, just followed directions.

My point is that the pharma companies probably don't know what supplements might interfere with the meds. All the new meds are just coming out and there are many variables that have not been tested-- The COSMOS trial (Sovaldi/Olysio) only went to Phase II testing. I stopped my berberine (for blood sugar) during the trial and my fasting numbers went back up some. I have been taking it again since the end of trial and my fasting numbers are lower than they have been in years--always below 100 now. Had A1C on Thursday along with extensive blood tests by my GP to see where everything is now--19 weeks EOT--mostly out of curiosity. I'll get those results next week.

My feeling was that I wanted to give the meds the best possible chance of working. I could start back up on supplements after my trial to promote healing. They had not stopped my HepC, so why take a chance. I don't think at this point anyone, doctors or drug companies, really know what might or might not interfere with the new meds. But that is a personal opinion. I was still UND at EOT+12 so just waiting for the final test on July 1. EOT+24=SVR. That was/is my goal from the time I started looking at trials as a solution for my HepC.

So, I really have no answer to your questions. I am just sharing what I did.

SuziQ

Tig · Admin

Hey Peter,

You lost me by the third sentence, third paragraph! Sounds like you've got quite a rapport with your Naturopath and the need to support those many bodily functions goes without saying. My advice would be to discuss what you're taking and why with your Hepatologist and the specialty pharmacist at Gilead and JnJ to determine what impact your supplements might have on the actions of Sov/Oly. Good luck...

Tig

Peter M · Veteran Member

Interesting conversation. Especially about the supplements. I'm working with my naturopath on the supplements. Before I started treatment i was taking many many supplements to work on all the Hepatitis C (and cirrhosis) related symptoms that have popped up in the past 12 years. These include blood sugar problems (fasting blood sugar is between 105-123), teeth problems (I lost five teeth in the past 12 years), adrenal problems, sleep problems, fatigue problems, gastro problems, immune problems, etc.

I gave up almost all the supplements at first and especially the supps that were involved with the CYP3a4 enzyme in the intestines. But although I was feeling better from the Sovaldi and Olysio killing off the virus, many of my symptoms returned.

So, it's back to many of the supps (although still staying away from the cyp3a4 related supps). ALA and NAC for blood sugar, Vit B supp for the ALA, sublingual b12 for mythelation issues, Polyunsaturated phosphatidyl-choline for liver protection and drug efficiency, CoQ10 for gums and teeth, Fish oil for inflammation, SAM-E for depression, Chaga and Reishi mushroom for immune system, LDN every third morning for immune system, Vitamin D3 for bone and immune issues, 5htp and melatonin for sleep, probiotics for digestion and mood, and ashwanaghanda for mood. I'm particularly worried about my teeth, which have been fairly stable (with a lot of work) until about 4 weeks in the treatment. Suddenly I'm getting bone loss again and my endo wants to pull two teeth and then do a sinus augmentation (I had one of those two years ago) for an implant. My second opinion dentist agrees. They want to do this ASAP but my treatment nurse seems to think I should wait till the treatment is over. Since I started back on the supps, things have settled down. Part of the problem is my mom's brain cancer has just come back and that has caused me some stress (I tend to be easily stressed anyway).

My four week vl showed a VL between 7-26. Eight week is coming up in a week and a half (I'm halfway through). MY LFTs have been upper normal AST 37 and ALT 43.

I'm a little nervous that the supps may interfere with the treatment meds but my naturopath (who teaches a course on the liver at the naturopathic college here) seems to think I'm OK. I'm staying away from Milk Thistle, St Johns Wort, Grapefruit juice, curcumin (which I am researching to see if it affects the cyp3a4 pathway), licorice, Astaxanthin (which seems to induce cyp3a4), Vitamin C (another inducer), quercetin, Chinese herbs, rhodiola.

I feel pretty good aside from some early morning awakening a couple of nights a week. The melatonin and 5htp help with that. I can definitely tell that my viral load is very low or non existent at this time! I still have some fatigue and have to nap at least once a day.

If anyone knows of any specific contraindication for Sovaldi and Olysio with any of the supps I mentioned (aside from the antioxidents intefering with lft results) I'd be interest to know about them. Thanks.

Tig · Admin

Hi Bob,

First bit of advice is to stop worrying! The act of worry causes problems all by itself. Stress is bad and causing it by needless worry isn't good for you. I know you've spent time reading the posts left here by our members that are ahead of you in treatment. The one thing the majority have in common?? NO side effects! This protocol isn't anything like the old SOC's that included Interferon. I even saw a select few avoid side effects on that during the first week, so please do yourself a favor and try to not stress and worry over an effect that may never happen. Lets hope that's the case during your current course of treatment. I continue to be amazed, not worried or even question why someone isn't experiencing a negative side effect on Sov/Oly. It seems to be very common and that's great! Some have occasional nausea or sun sensitivity from the Olysio as they progress into it, but none that I can recall on day 4! So take a deep breath and be excited for the good news coming your way.

As for the vitamins, I would take a multi vitamin, without iron, but nothing else. The reason I don't recommend an antioxidant is because I was told not to and because antioxidants can affect the test results of your liver function tests. When you get your blood tested, you want accurate results, not some that may be affected one way or another by a supplement. Whatever you do, always run it by your physician. Good luck...

TIg

BobK · Member

So end of Day 4 and I am worried cause I have not experience not one side affect. The absence of side effects makes me question if anything is really happening. I guess it is too early to tell, but I am thankful so far so good. I have been reading some posts and it appears everyone reacts very differently to the meds.

I wanted to ask if it is okay for me to take a Multi B, Vitamin D and maybe ALA? I have been off them for about three weeks and can really tell my body needs them. My doctor initially told me to get off everything and just let the meds do their thing, which is good advice, but I have noticed if I do not get enough Vitamin D, I start to feel a little down. So any advice about that would be great.

I remember on the study trail I was in back in 2011, I immediately noticed that my liver stopped hurting and I just felt lighter (if that is the word I'm looking for). I haven't had that feeling this time around.

Anyway, thanks so much for everyone chiming in and this wonderful forum.

Bob.

mallani · Guru

Hi Bob,

As Jill mentioned, you weren't on Sovaldi. Just remembering all the drugs Gilead has trialled, may explain the high (but outrageous) price of Sovaldi. Tegobuvir (GS-9190) was going to be miracle drug, but like all non-nucleoside NS-5B blockers, the RAVs were too numerous. Gilead only trialled one antiprotease, GS-9451. It's resistance profile was worse than Incivek or Victrelis.

Only Ledipasvir (GS-5885) remains. **Just as a sidenote, members have trouble spelling this. Just remember all NS-5A blockers end in ...asvir. Antiproteases end in .....previr. (Sorry, I'm pedantic)

Back to the new stuff. Sovaldi/ Olysio seems very effective and it's good that you don't have the Q80K polymorphism. Allowing one extra stage, your liver is at F3 at worst. You should do well with a 12 week course even without Ribavirin. While we sit waiting for Sovaldi/Ledipasvir to be approved, it's difficult to know treatment lengths and whether Riba is required. Best of luck. Cheers.

Cinnamon Girl · Guru

Well, it was a few years ago now, Bob, and it`s easy to get the names of these drugs confused, especially when they are numerical.

I can understand why you refused to take the rescue option of adding interferon at the time, it can come with some very unpleasant side effects and with a biopsy result of stage 2 you had time to wait for better treatments to become available. Sounds like it was a sensible decision to me.

I`m sure Mallani (Malcolm) will have some comments to add when he`s back online. smile

BobK · Member

Hi Jill,

Yes, that is the one I was on. They had a rescue part added to mine, and that was the option to add the interferon to the mix. I was just too scared of that stuff, plus at the time I was in perfect health, etc.

I am hoping to hear back from Mallani on his thoughts of my situation now knowing the exact meds I was on back on the trial. I cannot figure out why the heck I was thinking I was on the Sovaldi back in 2011.

Thanks

Cinnamon Girl · Guru

Hi Bob, welcome from me too!

If that was the trial you were on then you weren`t taking Sovaldi, you would have been on a combination of GS-5885 (now known as Ledipasvir), GS-9451 (an NS3 Protease inhibitor), Tegobuvir (a non-nucleoside polymerase inhibitor), plus ribavirin.

Here`s al link to the trial details...is this the one you did?

http://www.clinicaltrials.gov/ct2/show/NCT01353248?term=GS-US-248-0120&rank=1

The test for the Q80K polymorphism you mentioned is normally a requirement for anyone considering treatment with Olysio as it can indicate a viral resistance to the drug, but when used together with Solavldi it doesn`t really apply anyway, as Sovaldi is powerful enough to be effective against resistant strains.

You should do very well on Sovaldi/Olysio, we`re seeing some amazing early results from our members who are also taking it. Well done for taking your first dose!

Best of luck! Jill

-- Edited by Cinnamon Girl on Thursday 22nd of May 2014 02:50:47 PM

BobK · Member

mallani,

Thank you so much for the reply!

I was on the study GS-US-248-0120, which consisted of Tegobuvir 30mg 2xday, GS-5885 90mg 1xday, GS-9451 200mg 1x day and RBV 3Tab (AM) 3Tab(PM). Like I mentioned, I was on the medications 2-3 weeks tops.

I do not see GS-7977 in my list of meds for the study back in 2011. Was I mistaken? Did they call it by any other name or number at any time? I could have sworn it was the Sovaldi.

Back in 2011 my biopsy was stage 2. I have never drank alcohol and have eaten fairly well throughout the years. Have a big problem with sugar, I guess just like everyone else. :)

My liver over these past years has started to just feel a little more tighter, maybe some more fatigue, etc. But no major complaints.

Before prescribing the COSMOS to me this time, I took that test that checked for some Q80(?) gene, but I came up negative, so that is why the doctor started treatment.

Mallani, now that you see the trial I was on before, does that change any of your perceptions?

Once again, thanks for everyone talking here. The hardest part for me is to image that I could possibly be rid of this virus once and for all. It almost seems impossible I have had it for so long. Trying to keep a positive attitude, but myself gets in the way!

Thanks

Bob

mallani · Guru

Hi Bob,

Sovaldi has had countless Clinical Trials with over 3,000 patients. Back in 2011, you would have been on one of the Phase 2 Trials. Sovaldi was originally called PSI-7977, then GS-7977 then Sofosbuvir. I'm not sure what Trial you were on, but there was one Trial using different doses of Sovaldi- 100mg, 200mg and 400mg. It became obvious that 400mg was the best daily dose. As you weren't on Interferon, you were probably on one of the Sovaldi/Ribavirin Trials. The ELECTRON Trial was for 12 weeks of Sovaldi/Ribavirin. Results weren't great, and that led to the ATOMIC Trial, when PegInterferon was added. Another 2011 Trial compared Sovaldi with Ribavirin for 24 weeks- one arm used weight-based Riba, and the other used 600mg/day. SVR rates were pretty poor at 68% and 48%.

The fact that you relapsed then is not important. Sovaldi RAV's are transient and the virus quickly reverts to mostly 'wild-type'. The only RAV of note is called S282T, and this has not been found in previous Sovaldi relapsers.

Good luck on your treatment. Olysio will mop-up any RAV's. How's your liver, and have you had a biopsy or Fibroscan? That may determine treatment duration. Cheers.

suziq · Senior Member

Hi Bob,

Glad to see you here. Lots of people taking your combo. Be sure to hit the subscribe button so you can be notified when someone answers your post. Wish I had others on my Merck trial, but it is over and I was UND at 12 weeks post treatment. Mallani can probably give you info on re-treating with same med. He is a doctor and has lots of info that is helpful--and is really a great guy as well.

SuziQ

BobK · Member

I really appreciate everyone chiming in, makes me feel better.

I was mostly concerned because back in 2011 I was in a clinical study trial that one of the medications was the Sovaldi, and at one week blood work my viral dropped from 22 million down to 1300. I was super excited. But at the end of 2nd week, it had climbed slightly. So the doctor said I had a viral break through and wanted to incorporate interferon, and if I refused the interferon, I would have to drop out of the study. I was just way too scared to take the risk with the interferon. Kind of look back now and thought maybe I should have just bit the bullet and took it. I'm sure I would have cleared it back then.

I was terrified that since the Sovaldi was able to mutate back then that the same thing may happen. My Doctor claims that the virus will go back to it's 'wild' stage but takes about a year. My new doctor this time around felt that since it is in combo with the Olysis and most likely that the virus was back at it's wild stage, I would be able to clear. So that worry is enough for me to have insomnia, let alone the medication.

The only thing I really felt on day one was a sensation like my blood was on fire slightly (that is the only way to describe the sensation) but nothing scary at all. And at one point my head tingled. But really any of those could have been something I ate and not the meds.

Anyway, please keep posting here. Helps me keep my chin up!

B

Groupergetter · Guru

Welcome Bob, looks like others have the side effects covered. This is nothing compared to previous regimens.

The time will fly by and you'll soon be looking at SVR and a renewed life. Sunday will be 12 weeks and the end of tx for me on this combo. Curious if you'll be able to feel the virus being killed off as I did the first day? Relax, you'll be fine. Just remember to take your meds wink Congratulations

Huey · Guru

Hi,, Good Luck to you, I guess the best advice i can give you is - Don't second guess yourself. This tx will work, no need to wate for anything better, stay calm. That is it .

kurt · Member

I'm 8 weeks into the treatment. I had nausea for the first day or two but it wasn't bad. Insomnia has lasted the whole time, I can only sleep a few hours at a time. I was never a sound sleeper though. Headaches have been controlled with water, it really does work. Sun sensitivity is high, sunblock a must or you will burn. Overall the side effects are minor.They really haven't kept me from doing anything. Good luck, Kurt

sandypsych · Veteran Member

Hi Bob

My husband started today so you two will be on the journey together! He is also nervous about side effects, but has been reassured that this treatment, compared to others is relatively painless. It was also suggested stay hydrated, use sunscreen, eat well and reduce your stress. All the logical things to give your body a chance to fight this battle. I look forward to comparing notes and celebrating together!!

Best of Luck

Sandy

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