Anyone else in trial for Sofsbuvir 400mg and Gs5816 100mg

Question

Was just wondering if anyone else is doing this trial and how they are doing. I have had the flu symptoms here n there but nothing I can't handle. Also get the brain fog sometimes too.
I started on Oct 30th. I am geno type 2a/2c, my fibroscan is 9.9. My viral load was 67,000 with first blood work then went to 190,000. My alt was 52, then  86. Ast was 57 then 94. My first week bloodwork showed alt 33,and ast 26. My viral count went from 190,000 to 44. So I guess the meds are working. Just curious to see how others are doing on this trial.

Kerso · Answer

I've also been in recovery from drugs and alcohol for over 11 years.

Kerso · Answer

I gave bloods today at clinic so one more appointment and that will be me finished. My first 2 weeks of treatment where great. Brain fog cleared and had more energy,but then the fatigue kicked in. I'm hoping that was just a wee taster of what's to come when the treatment ends. Good luck one and all. About time we all had a break. By the way, I'm male, 53 and geno type 2

Stronglady14 · Answer

Dec 25th will be 8 wks for me, and it seems like the extra energy just kicked in this past week . I also had a spine procedure that really helped me so between the 2 been doing more then I have done in over a year ,heck maybe yrs. I hope all you people on the blind study got the real stuff, but at least you know if you didn't you will next time. What everyone says about drinking lots of water is true, I think that's why I didn't have many side effects I drink a gallon of water everyday. My Dad drummed that into us at an early age. The only true side effect I had was for the first part of trial I slept a whole lot more, was always tired. I also noticed my hair thinned out a bit and my nails got very brittle. But the way i feel right now is awesome I feel like I got younger, lol. Wishing everyone safe and awesome holidays.

Kerso · Answer

Hi, I am on the double blind Astral 1 trial in Scotland. Started on 15th Sep so I only have 2 weeks left. I am pretty certain that I am on the treatment though and not the placebo. I had mild sore heads every day for the first month or so but they have become less frequent. I did have one today however. I am taking bit longer to get off to sleep at night even though I am really tired. The tiredness has been the main side effect but it is manageable compared to my previous treatment attempts. This is attempt number 3.

someoneasheville · Answer

Been on this trial for a week now scheduled for 12 weeks total...no real side effects that Im aware of. Taking Sofosbuvir 400mg/GS-5816 100mg this is one tablet a day.Went for 1st week follow up today. dont know results yet.

Cindy815 · Answer

Thank you for the invite to this thread.  My husband is also in the trial for Sofosbuvir 400mg GS-5816 100 mg plus RBV.  He has not been in the trial very long.  He has a clinical appointment tomorrow so we should get lab reports then.  How long have you been in this trial? My husband hasn't had many side afftects so far fatigue and sometimes he gets cold, but that could also be the Riba.  I will post more after his appointment tomorrow.  I hope you are doing well. 

cindy

caz77777 · Answer

Frannie hi, yes I can see your posts! This is not the thread I meant, I will try to find it but I don't know how to draw your attention to it! I'm not very up to speed with this kind of forum. These threads do not seem to be very active either, there are so few of us doing this tx and now we seem to be split between about 4 threads. I will pm you.

frannie22 · Answer

Hey Caz, is this the thread? Can you see my posts above? I posted twice No one replied or commented on the fact that I also have been on this drug for 9 weeks now...Am I on the correct thread? Where does it say about a new person joining from UK?  Frannie

caz77777 · Answer

Yes!! I get a cold feeling in my belly an hour or so after the pill. This is what makes me so sure it isn't placebo. I sometimes get cold all over for a few hours, but it's the icy/chlling/burny feeling in my belly that I notice the most. And the farts/gas too, anyone else get that? Today I am on day 24, feeling very tired and foggy, a bit low. it would so good to know my VL and if I even have the real meds. I take my pill at 1pm and make sure I am cuddled up for the next few hours on the settee as I tend to feel shaky and a bit out of my body.
I am glad we have a little group of us now. I have another friend on this, a 3, she had her 2 week results today, gone from 5 million to 15!

Stronglady14 · Answer

Wow bless your soul . I was told if all they had was the ones with interferon I would not be able to do a trial. I have soooo many other health issues. I have been having a bit of a vertigo problem today (day 20). Have that weebles wobble but they don't fall down feeling. It seems since on trial my spine issues are more prominent too. Does anyone get that cold horrible empty feeling, I get that a lot. I touch hubby and he yells and says damn your cold. Maybe its time for tea. I hate when my calves start hurting more then they normally do. Maybe I'll sit here one then and explain how I got the spine problems not tonight. just so freakin cold. But for now I;m gonna go under my nice warm blankies.

frannie22 · Answer

Hi, Im in week 9 of 12. Im in Western Maryland. I travel 3 1/2 hours to get to my trial location in MD. I have been on 3 forums hoping for also find other people on this drug. I had a very hard time during the first 3 months...worse for the first 2. The drug must have metabolized in my body and changed all the chemical components in mine? Like I was telling Rodgon65, I am a Hyper Sensitive person...so If I get a hangnail it feels like someone cut the tip of my finger off...etc. So I get to have all the wonderful effects times 10! Yikes. But anyways I am Geno 3 and am glad to also chat with others. I have had contact with a FBook friend who was also Geno 3 and was in the phase 2 trial and she also cleared. I wonder if Rodgon65 was a phase 2 trial participant. I admire them and have much respect.

frannie22 · Answer

hi, Im also Geno 3. Im in week 9 of 12. I have had some crazy side effects through through my journey. Today had a time with vertigo..yikes and nauseousness. I must be an anomaly. I have had headaches and muscle flickerings...Like an eye twitch, but all over my body sometimes, tired of course, brain fog feeling, oh a couple panic attacks, which could have come from all the weird feelings. sigh. But I am a HSP...Hyper Sensitive Person anyways. It does give me hope to hear that you were Geno 3 and have healed. How long did it take for you to start to feel normal again after you went off the pill? Thank you for your reply. Fran

frannie22 · Answer

Hi..Im in week 9 of 12.

caz77777 · Answer

My trial is for genotype 1, and they said the point of the placebo is to show that the placebo group report as many sides as the drug group...to prove the sides are minimal. I am grateful to have this chance, and will get the real deal later if I am placebo (but I am sure I am not). It is a double blind till week 24 as far as VL goes. This trial is being run by my hepatologist who has known me for over 15 years and I trust him with my life, he said it was his first choice of tx for me...so all good :)

caz77777 · Answer

Yes I have told them, about the spacey feelings, the doctor said I was the second person to say that. it's not too bad, I did interferon and ribavirin and this is a walk i the park! As it's a trial the research nurse won't tell me about other peoples sides because of the power of suggestion.

Stronglady14 · Answer

I guess I lucked out my trial had no placebo everyone got the medication. They said this was one just to prove how efficient the meds are and no one will be getting placebo. I was very happy when they told me that. Some trial I think there called blind ones they don't even get to know if its working till the trial is over. I was already told my results after the first week on the meds. I fell like it was just mean't for me to be in this. I kept checking every week to find one close to where I live. And when I did that Dr. applied for me right then and there . By going for the trial I also found a wonderful gastro Dr. so much better then the one I was going to.

penn1023 · Answer

Are you telling the trial people about spacey wired feelings? What do they say?

Stronglady14 · Answer

I live in the United States but maybe we can keep each other company thru here. My hubby is good but I guess hard for someone else that has never really been sick to relate. When I go for my next visit on the 25th I'll know what my 2 wk bloodwork shows. I love belonging to a forum I also have a fantastic pain forum. Only family I have left is my sissy and she lives far from me. The forums help to fill the void a lot.  I am pretty sure I will meet some fantastic people here too. Hope you have a good week.

caz77777 · Answer

It's good to meet others isn't it? Are you in the UK? I am.
I know a few going the genotype 3 but none in the 1 with a placebo arm, I am all alone here!
I just got me week 2 enzymes, not much change, but she says they are in the normal range anyway so I shouldn't be alarmed. I wish I had some way of knowing if I have the real deal or not other than the spaced out way I feel!

Stronglady14 · Answer

Ty for info. I felt fine for the first 2 weeks now having the flu symptoms off n on. Also have major spine issues and it seems since on the trial I hurt a bit more. Was kinda ironic I had no sooner found a good spine Dr. and then get accepted for the trial. Didn't take me 2 seconds to decide trial came first. This is me future. Why bother getting spine fixed if  gonna be sick all of the time anyway. So more then likely after trial will be facing surgery,sigh. So glad to finally find people that already have or are still going thru this trial. Don't feel so alone now. I'm married but he has no clue what its like to be ill. One good thing I sleep much better now I average 6-8 hrs now ,use to be 3-5. Again ty everyone you made someone that was feeling all alone better.

caz77777 · Answer

Hi I am on this, day 22 now, in the Astral 1 section. I have 1 in 6 chance of placebo but from my sides I think it is the real deal. I am spaced, wired, and tired all at once. I have posted somewhere else about it, maybe on the other thread about this trial?
My viral load is a secret as it's a double blind but they will tell me my enzymes. At week one there was little change, ALT had gone from 47 to 51, and AST from 44 to 41.
I feel a bit achey and fluey at times, and feel cold in my belly after the meds, like a cold burning, very mild, have had a little gastric upset but my digestion is better.
This is the magic bullet!! :)

Rodgon65 · Answer

I was on the same treatment last year which ended in December. All my tests have been clear since then. My Genotype was 3b. This is a miracle drug and I am sure you'll clear the virus too. Good luck!