Hep C Discussion Forum

Kellie · Senior Member

RE: ION-3 trial

Cinnamon Girl · Guru

Amazing results!! Congrats Eddie and Socal, how wonderful to hear such good news!! biggrin

Kellie · Senior Member

Wow Eddie, Congratulations! Unbe-lieve-able!!! I'm happy for you - K the last of the Triple Therapy Kids

socalbeatnik · Veteran Member

I just got back from clinic as well. They didnt have results back from the second week but they did finally have results from week 1. Undetectable Yahooooooooooo. Amazing from almost 9 mjillion to zero after one week.

socalbeatnik · Veteran Member

great news Eddie , i go today as well at 11:00 am hopefully get some news as well. Good Job Eddie

HR · Senior Member

Great job Eddie!!!!!!

Lil Eddie · Member

Just got back from the doctors office for week 4 blood draw. I asked the nurse about my VL. She looked at my chart and showed my the lab results from week 2.

I AM UNDECTABLE AT WEEK TWO!!!!!

I could not be happier !!!!!!!

Sending positive waves to everyone else on the trial!!

Tig · Admin

WOW! That's incredible news!! Makes me question why I'm really hurting myself with triple therapy when there obviously is something much simpler and effective just around the corner, uggh..... I'm very happy for you SOCAL, sounds to me like you've really cleared that earliest of hurdles by a mile, congrats!!!

I also want to congratulate you as well Eddie!! Fantastic news from everyone, that's great! Keep it up and good luck!!

-- Edited by Tig56 on Tuesday 2nd of July 2013 08:58:38 PM

Tig · Admin

If they restrict Green Tea, I'd be afraid to drink the water in most major cities in America and report it to my doctor's office! I'm concerned and a little surprised that people entering these studies weren't provided detailed lists of do's and don'ts. Or is this an example of not enough planning on some of the study providers? I'd be on that phone immediately and find out exactly what is and isn't allowable. You certainly don't want to go through all the hoops you've been through only to find out that a cup of tea or a vitamin will disqualify you. Good luck with that search!

HR · Senior Member

Hey 52,

i don't have a clue about green tea. It seems like they would have gave us a list of common items we cannot take. I'm going to keep doing what I'm doing. Did you get your results yet?

Take care

Randy

52baddog · Senior Member

I have been drinking green tea, I am not sure if I told my nurse or not. Should I be concerned?

socalbeatnik · Veteran Member

Are we ready for some results...I think many of us will get some this week. Hoping everybody who is due gets good news.

socalbeatnik · Veteran Member

i take just a regular multi vitamin anything i should worry about there...Like u Ckncali i was told very little and wasnt given any kind of list. I actually looked through and read the information on the study and didnt see anything there as well.

Karen · Senior Member

Hi Eddie/RH,

I am on Gilead drugs-Went last Tuesday to ask about amino's and I was told no-no! Cannot even take probiotics which I have been taking non stop for 30yrs-crazy.

When I started treatment I came off everything but went back to the flax seed oil-it is my wonder oil and they allowed my request. I probably would have taken it anyway-shame on me but I was having way to many pity parties (mild depression) and I had joint pain...both have subsided.

Karen

socalbeatnik · Veteran Member

I was told only to stay away from 3 items at the start of the study i iknow one was milk thistle i believe and the other 2 sorry i dont even remember. I do remember telling the nurse i never heard of them before so i didnt think it would be a problem staying away from them.i have high blood pressure and take a couple of medications for it and i told them what they were and they were fine with that as well. They really didnt lay down alot of rules, seems like others were told more than i was.

Regarding the rage i didnt think i was experiencing any but my wife had to ask me why i was so angry the other night when i replied to a question she had ask me. I didnt think i had responded in any angry manner.But she told me i had and that i have been acting a bit angry of late. I hadnt noticed it really myself. All in all she has been a great help and supportive. She is an RN as well so she has helped with some of her knowledge and experience as well in many areas.

sofi moore · Veteran Member

P.S. Always be real though. Keep posting how you are feeling. I know when I found this site and you all responded to me--I felt better.

sofi moore · Veteran Member

Ckncali,

I have had emotional breakdowns. I am a closing manager at a bookstore and the other night the kids section was trashed. It was all I could do to keep from throwing the scattered toys into the wall. Seriously, I wanted to kick the mess on the floor and throw things. That is not normal for me. I hung out with my mom one night and snapped at her. My mom is very sweet and did not provoke this. I had a meltdown with my boyfriend who deserves a medal for being so calm and for understanding it is the medicine. It is better now. However, if I am not irritable then I am weepy. No offense to any guys, but ribavirin causes constant pms. I feel like I have pms most days. It does seem to feel less so these days or maybe I am just used to it.

And I have had two nights of good sleep since I started the meds. I can't run or exercise on days I work because it will drain the little energy that I do have. I try to go to bed early but it takes forever to fall asleep and I wake up too early. I do feel less fatigued than I was feeling though and it now just feels like lack of sleep. So it has gotten better. Also, I itch. It sucks. Hives on my right leg, and rashes will appear and disappear through out the day. My scalp itches, too. I, too, was told to drink lots and lots of water. I drink over a gallon a day. The more I stay out of the sun the less I itch. I still itch, but the sun makes it much worse.

You are not alone. Luckily, our treatment is short. My friend did interferon and riba four or five years ago. This was when genotype 1a meant 12 months of treatment. She lost her beautiful curly long hair, it thinned out to almost nothing, she hurt daily and couldn't get out of bed, she was rushed to the hospital at times...I call her when I think I can't take it anymore. She is empathetic but then reminds me how it could be much much worse. I just try to make it through the day and not think about how much time is left in this study. Plus, my one week labs really perked me up. I want this to work so I will stay on it even if it means I freak out and scream and cry and scratch myself raw daily. It sure beats cirrhosis and liver cancer.

Best wishes,

Sofi

Rose · Member

Really? No sleepy time, darn thanks for the info. I only had it a couple times. No more until i check with the clinic. Ill let you know what they say. Previously ot was just no apples, pomagrant. Marmalade. Fruit or juice of any of them

Dillo · Senior Member

Hi Ckncali,

My treatment is different than yours but the only thing that helps me sleep with the Riba is taking it early (by 6 PM) and Doc actually said Melatonin. I take that early also. Riba rage is pretty common it seems and now that they have increased my Riba back up I get more of that and also getting the dry eyes and increased headaches. Lots of water does help. Washes the bad bugs out ;)

Good luck with your treatment.

Lil Eddie · Member

Thanks again

-- Edited by Lil Eddie on Sunday 30th of June 2013 10:04:26 PM

Karen · Senior Member

Like Randy, I had to bring in my supplements and the study nurse told me what I could and could not take. She let me know that flax/vit d/cal/mag were approved (none are liver related). I choose to stop everything and let my body adjust to only the trial drugs. As time has gone on, I felt the need to add back some supplements such as probiotics, amino acids, and digestive enzymes and a few homeopathic choices which they refused to allow. This had something to do with how the trial drugs process in the digestive system and not risking cleansing the liver, allowing the drugs to do their job. It appears that anything that has to do with the digestive system (probiotics) and the liver (certain teas, herbs, nutritional supplements, etc) should be avoided. Drinking water and eating a healthy meal before taking my meds was something that seemed to help me with side effects.

Honestly, at least in my case...I think the medical professionals are still trying to learn about these drugs and they do not know what affect non-allopathic drugs will have on treatment and do not want to find out at the cost of having patient fail and risk not getting FDA approval. Understandable....

-- Edited by Karen on Sunday 30th of June 2013 09:09:02 PM

Lil Eddie · Member

Good Info

-- Edited by Lil Eddie on Sunday 30th of June 2013 10:25:35 PM

Lil Eddie · Member

I would think any naturally occurring body substance would be ok.

-- Edited by Lil Eddie on Sunday 30th of June 2013 10:30:05 PM

Karen · Senior Member

Hi Ckncali,

As RH mentioned-Drink-Drink-Drink filtered water-all day long. Helps a great deal. Eat a healthy meal before dosing. I was told to come off ALL herbs..almost all supplements...but I was allowed to stay on "flax seed oil", which I have been taking for years-great for mild depression, joint discomfort. Have you tried magnesium for getting a good night sleep..Many people are low on mag/cal and vitamin D...it works very well. The flax and mag/cal/d combo are the only two supplements that my trial nurse would approve...no amino acids. I also do a mild yoga/breathing practice that has really been beneficial-helps to relax the mind and muscles.

Hang in...We need to keep reminding ourselves that this short period of ups and downs will be worth the ride.

all the best

HR · Senior Member

OK, I remember how they did this. At the screening where you had to fill out the medicine chart you had to list all drugs, supplements, etc. you were taking. The PA came around to each patient and would tell them what they could and couldn't take on the list the patient provided. If you were going to add a drug you had to get permission from the study Dr. I am taking some blood pressure medicine and a baby aspirin and was told that was fine.

Take care

Randy

-- Edited by RH on Monday 1st of July 2013 12:40:34 AM

Lil Eddie · Member

Thanks for the info.

-- Edited by Lil Eddie on Sunday 30th of June 2013 10:03:53 PM

Ckncali · Veteran Member

OK

-- Edited by Ckncali on Monday 1st of July 2013 04:56:03 PM

Ckncali · Veteran Member

OK.

-- Edited by Ckncali on Monday 1st of July 2013 04:55:34 PM

HR · Senior Member

Hey Ckncali

Have you tried to increase how much water you are drinking? I have read on here, and it's on my sheet that has my blood draw appointments that if you're feeling bad increase the water.

maybe trying this will calm everything down. Lots and lots of water.

take care

Randy

HR · Senior Member

-- Edited by RH on Monday 1st of July 2013 12:42:05 AM

Lil Eddie · Member

Hello again,

I saw in an earlier post that the trial nurse didn't want us taking amino acids. Any more info on that.

-- Edited by Lil Eddie on Sunday 30th of June 2013 10:03:21 PM

Ckncali · Veteran Member

Hi, Thank you all so much for your response. I appreciate it a great deal.

Sofi, Thank you for responding. Sounds like you are going through the RIBA rage too. From your description I could picture you taking all those toys and throwing them against the wall. I wish I could have helped you throw them. I really know what you mean. You are so lucky to have a supportive boyfriend who understands that the meltdowns are the meds and not you. I also have a very supportive husband that understands that too. At times we just have to let the emotions out and the person closest to us is the one that gets to see it. As SoCal said we are almost half way there and then it is all downhill. We do have so much of an easier time than what others on more difficult treatments are experiencing and I applaud them. I am so sorry about your rashes, hives and itching.

Socal, I think melatonin is ok on trial. I can't take it because it makes me feel bad next day but that is great that it works for you.

Dillo, thx for the water advice. I got the dry eyes and headaches too so need to increase the water. I have been lagging on that. Hope you are doing well.

Randy and Karen, I will increase the water, really need to do that. Went to a "Restorative Yoga" class at the Y and that sure helped with relaxation.

Good Luck to all and see you at the top of the hill. Thanks so much for your help and support.

-- Edited by Ckncali on Monday 1st of July 2013 04:54:09 PM

socalbeatnik · Veteran Member

wow Ckncali i was surprised to hear about the sleepytime tea i told them that i sometimes take Melatonin to help me sleep at night, something i have always taken and they didnt say a word to me. Never told me to stop taking it or i would have, think i have only taken maybe 3 times since on trial. alot of information on this sight i read somewhere here to shampoo with baby shampoo and no conditioner so i went and bought some tonight see if that helps the scalp thing. it has gotten better thou weeks 2 and 3 were the worse but the last few days better. My hair which is kinda of frazzeled looking now may have to be trimmed at the end of this the meds have damaged it for sure i think.its okay if i get better all this is well worth it gotta keep a positive attitude.We are almost at the top of the hill here Ckncali next week alot of us on the 8 week will be on the down hill.Keep your head up smile

Rose · Member

Hi ckncali,yep ive had a few nights like that and the following day is a challenge. Tired emotional ect. . When i sleep well the next day is fine. I have a food med chart im keeping so i can make adjustments. Having data helps me. Two things that worked, taking riba no later then 6 pm and having a cup of Sleepy time Extra tea at bedtime. Hope this helps, your bout half way there!

HR · Senior Member

Hey Ckncali,

As you know, I'm not on the Rib. I am not experiencing anything like you are describing.

I would think that you not getting a good night sleep is causing some of this. I know when I was eating Xanax back in the 90's they would make me angry. No sleep plus xanax=explosion. Thats the way it was for me. I know the feeling about taking that stuff and then feeling hungover. It's awful.

I have read a little bit somewhere on here that there is something called "Riba-Rage". Maybe some of the members can chime in and tell us about that.

Hang in there

Randy

socalbeatnik · Veteran Member

Hi RH yeah you would know if you were on the riba very easy you would be taking it in the morning along with sofosbuvir/ledipasvir and than you would be taking the riba alone again in the evening with dinner. Six pills a day just for the riba. Good luck with your progress in the weeks ahead.

Ckncali we are on the same study with the riba but i really havent experienced any anxiety myself maybe a cpl of mild bits. I have felt a little dizzy, light headed like i was on verge of fainting and that brought on a little bit of anxiety i think. thou i have had a great deal of experience with anxiety/panic attacks in the past a few years back and i know that it isnt any fun at all. It when on daily and doctors were giving me xanex as well to cope with it.I dont have alot of good things to say about the xanex which seemed to bring on alot of its own anxiety as well in the end. I have been having some issues with sleeping thou as well from the riba i think also but more due to a burning itching scalp which keeps me up. It really seems to kick up at night after i take the second dose of riba in the evening with dinner. Wish you the best i kinow anxiety is not a pleasant thing at all. Good luck but ya did the right thing and talking about it, i think that always helps difficult situations.

But all in all i am feeling much better than i really expected prior to the start of the study. I have heard alot of horror stories from friends who have tried some of the different meds being used to fight this and thou i feel uncomfortable at times as well as some mood swings not as bad as i had first anticipated

hope you feel better.

-- Edited by socalbeatnik on Saturday 29th of June 2013 11:32:51 PM

Cinnamon Girl · Guru

Hi Ckncali,

I don`t suppose that the trial protocols allow for a dose reduction, which is probably why your doctor refused it. Getting a good and reliable night`s sleep would be a big help to you I`m sure, and finding ways to relax and unwind is essential. Try to avoid stressful situations as much as possible too.

Best of luck.. ~ Jill

socalbeatnik · Veteran Member

Hi Rose never have gotten a sore throat or cough however, during the first 2 weeks they were several days where i felt like i was coming down with a cold. I got burning eyes and nose like you get with a cold but than the next day would feel fine. this happened about 3 times or so but i never developed a cold. i'm hoping at this point the 8 weeks is gonna be long enough to wipe this virus out. It will be interesting for sure when the meds stop. it seems hard to believe i'm almost halfway finished with the medication.

Rose · Member

Day 16 - Socal I like your idea of dates helps to know where ppl are with treatment.
I seem to be about a week behind most on the study, its nice to read all success stories so far. Sorry to hear about the rashes, Sofi if the heat wasn't bad enough.. hope that gets better for you. I went to clinic today and no VL numbers yet for me either, except the base line. But I'm hopeful. They said its taking about 10 days to get those... hum.. day 16.. oh well.
Is anyone experiencing a cough? At bed time every night I'm coughing my head off and can't sleep. I've taking Mucinex (approved) sometime it works sometimes it doesn't.
Ckncali- Yay! on all the good news

socalbeatnik · Veteran Member

Day 23 of the Sofosbuvir/Ledipasvir with Ribavirin 8 week study and have to say i am feeling quite well. Really not what i was expecting before i started the treatment. There is one thing that is really standing out in my over physical health seems to be the return of my appetite.Several months prior maybe up to 9 months or so i had noticed a very big loss of an appetite. I was unable to finish a whole sandwich not to mentioned unable to complete a meal which was pretty unusual for me normally.I have noticed over the past 3 weeks since treatment that my appetite has returned and am back to eating and completing normal meals as in the past. i am taking it as a definite sign that my body does seem to be healing, a good sign for sure. I still have not received any actually updates from my blood work yet but take this as a sign that maybe my overall health is indeed improving. Next clinic visit will be on Tuesday and should get results from week 2 blood work.

Sofi hope you have been sleeping and the itching has lighten up for you. I have had 2 nights of better sleep and less itching. In Los Angeles here and the weather has warmed up a bit with temperatures over 100 so i have decided to stay indoors and not go out in the sun and rouse up any more itching.

Wish everybody the best....

sofi moore · Veteran Member

Hey Socal and Ckncali and Randy and all,

I, too, woke up in the middle of the night from the itchy scalp. I wasn't wearing a hat to run but I will now! However, I am probably only going to run at night or on an indoor track from here on out. It's not forever and totally worth it. A hairdresser friend of mine has suggested tea tree oil for my head. I used aloe cucumber conditioner last night and it helped a little but the itchiness is still there. I will also try the fish oil. Yesterday, I hung out by a lake with friends and family and since it was after 5:30, I didn't wear sunscreen but I sat in a shaded area. My leg broke out in a rash and the itching all over got worse. It is better today.

I am excited about my results. Socal, I, too, go back on July 2nd so we did start at the same time! And we are blessed. You are a good friend Socal, keep being there for your friend. And thank you all for being here for me.

And Randy--your results are great, too!!! Rooting for you!

Ckncali · Veteran Member

Hi Sofi, Your first week results are Amazing! I am so happy for you. Keep up the great job you are doing. The fatigue got better for me too. I am at the end of my 3rd week and I have to say the 2nd week was the worst for me with the fatigue. The 3rd week the fatigue lessened up quite a bit. Concerning the scalp itching, I am mildly itching all over but that too has gotten a bit less. I like to get my exercise by walking outdoors and always wear a hat. Do you wear a hat when you go running? keeping the sun off your head during treatment might help. I also take fish oil, which was approved, and that may help with keeping skin moisturized. Take care and good luck to all of you.

socalbeatnik · Veteran Member

Thank everybody for the feedback it really helps to get the information on your experiences. I dont feel like i'm going completely insane with some of these oddities my body is feeling thou mild as they may be mostly. Sofi it seems we may have started treatment around the same day i just finished day 21 last5 night as well. I started treatment on June 6th. My next visit to the office will be next Tuesday July 2nd so i am sure they will have some results for me at that time, hopefully week2 results.I ride a bicycle for exercise about 20-25 miles per week so was glad to hear about your running experience. I noticed the last 2 times i rode my bike i would start to feel dizzy and a little light headed after i rode it like i was going to pass out. So i said maybe i better cut back on the bicycle riding for awhile.i met somebody in the clinic's office who was on the previous study thou i dont know how long he has been off the meds but he said everything is still good with him and i have talked with him twice over a month period.

And yes i had my wife checking my scalp for lice, sores or something the itching really gets bad at times and wakes me up in the middle of the night. I think it is just my scalp drying out and the skin become flaky it appears on my forehead as well.As long as it doesnt get much worse it will be bearable.A very close friend of mine has now been hospitalized twice in the last month due to being in advanced stages of Cirrhosis and have gone and sat with him on both occasions and it is one of the sadist sights i have seen, so i feel blessed to be experiencing only some itching compared to what i see him going through. Lets hope this works out for all of us.

Lil Eddie · Member

socalbeatnik wrote:
I keep looking for updates on line from the phase2 study.

They (SVR8 and SVR12) should have been out a few weeks ago. I just hope they are not publishing because of some problems with the SVR's

Karen · Senior Member

Hey Rick....I am also experiencing an itchy scalp-so much so, I had my friend check for lice. Sofi is right, the sun seems to magnify it.

All the best...

Sofi...Great news! Amazing stuff.

Cinnamon Girl · Guru

Hi Rick and Lil Eddie, you`ll find the interim results from the Phase 2 (`Lonestar`) studies here...

http://www.hepctrust.org.uk/News_Resources/news/2013/May/Gilead+announces+3rd+phase+3+trial+of+all+oral+pill

That`s the latest update I`ve seen so far, hope that helps... smile

sofi moore · Veteran Member

Hey Socal!

Yes, my scalp has itched off and on. It seems to happen if I am outside in the sun for any length of time. In fact, it's itching tonight and I mentioned it to my boyfriend and wondered if it could be a side effect. I guess it is. My skin gets itchy and the nurse told me to drink more water for it. I already drink over a gallon a day. I bought lotion and moisturizer and it helps. I may try an oil treatment on my scalp to see if that helps. But the fatigue is better now. I am a runner and had to cut back on it and now my energy level is better. I still feel tired a lot but not to the extremes I was experiencing.

I am ending week 3 tonight and moving into 4. I bet you get your results soon. And I hope they are as promising as mine or better!!! I should know week two results sometime next week. Good luck!

socalbeatnik · Veteran Member

Sofi

that is great news i am currently on the same study for 8 weeks with the ribavirin as yourself thou i have not rec'vd any info as of yet from my blood work. just completed week 3 on the meds and am really curious what my viral load is at this point. My base line was at 9 million also.I keep looking for updates on line from the phase2 study. Glad to hear so far so good with you. have you been experiencing any itching in the scalp area by the way, that seems to be the only issue i seem to be experiencing.

HR · Senior Member

Sofi

that is great news.. Keep doing what you are doing.

Take care

Randy

sofi moore · Veteran Member

Hi all, One week results-- from 9 million down to 53!!! Woohoo!!!

Hep C Discussion Forum

Legal Disclaimer: