Ckncali wrote:

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Hi Dillo,

Thanks. I did try warm compress, maybe will see if cold helps. Also got an eye wash that i am going to try. Quit wearing my contacts at all and that definitely helps. So I just won't wear my contacts during the entire trial.

How are you doing? Hope you are doing well.

 

 

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 Hi Ckncali,

Hope some of that helps. I read it helped someone else. Didn't know about the contacts. I've tried wearing some before but never was able to get used to them.

 My biggest problem is the Riba too but they have gave me so much Procript it seems to be helping the anemia. Anyway just trying to make my last few weeks without messing up and get the other stuff I have been neglecting throughout treatment back where it needs to be.

Hope your well and getting some good feedback from your trial.

-- Edited by Dillo on Tuesday 18th of June 2013 07:54:39 PM

Hi Dillo,

Thanks. I did try warm compress, maybe will see if cold helps. Also got an eye wash that i am going to try. Quit wearing my contacts at all and that definitely helps. So I just won't wear my contacts during the entire trial.

How are you doing? Hope you are doing well.

Ckncali wrote:

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Hi Dillo,

I realize now that we all have different situations going on. Some of us live in areas where clinical trials are more accessible, some of us cannot wait until 2015 for an easier path to SVR. We have to take the treatment that is available and best matches our own situations. We are all looking for the path to a cure. I wish you the best.

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 Thks,

I heard eye drops and a cold compress might help on the eyes. Don't want them to get too dry in the socket for obvious reasons.

If it was me I'd read the ingredients and choose the eye drops with the less amount chemicals if any at all. Probably got enough toxic stuff in you already ;)

You know at the hospital they use saline solution for just about everything. That's what make up the bulk of our liquids anyway. Maybe they have some eye drops like that.

Hi Dillo,

I realize now that we all have different situations going on. Some of us live in areas where clinical trials are more accessible, some of us cannot wait until 2015 for an easier path to SVR. We have to take the treatment that is available and best matches our own situations. We are all looking for the path to a cure. I wish you the best.

I'm GT 1a and am getting triple therapy with the Victrelis due to start this coming Thursday (20th). My first attempt at this was in 96 with monotherapy and had a big fail with that one. Doc said this time that anyone with 1a should consider the 48 week regimen as the rule of thumb. After just 4 weeks on the double therapy, it makes me cringe to think about having to go another 10 months. He said 1a is so difficult to clear in the first place that he always places his 1a patients on the 48 week regimen automatically. I would love to think that I could end this party in half the time but it doesn't appear that's going to happen. I've read some interesting stories from people on some of the experimental studies that indicate viral clearance in weeks versus months and they're not experiencing the symptoms most are in standard therapies. The thought is certainly nice...

Hi Kellie, I am familiar with People's coop so looks like we live near the Same city. I don't think I am supposed to say a specific name of a city on the forum But if you live near people's coop then you live where I used to live in the late 80s. 

Your explanation in doing the SOC treatment makes sense especially where the INsurance is concerned. I am so ready to get rid of this virus. The time is right for me too.  You get to a point where you don't want to have to deal with this anymore and just want to get it done and taken care of so you can get on with the rest of your life virus free.

Thanks for the kind words. Take care. 

Ckncali

Read a couple of things about the eyes other places. Might be the Riba cause it's not just with your type of therapy. No solutions did I see though.  I would have thought you would be GT1b in the Riba arm but although sx it might help with your SVR. 

I see why a lot don't want the Peg now that I am on just Peg and Riba which I thought would be lots easier. Sometimes it is, sometimes it has it's fun moments too.

Many can't be bothered with the sx and if they have went through tx before and it failed I can see that. If they haven't and they don't know what kind they will get to me that's a bit spoilt considering the amount some people go through to have their SVR.

I was willing to do whatever it took to be rid of it now. I have sacrificed time and money, layed off in Dec. was out of work, so it looked like a great time to try, alternatives and possibilities of when another tx for G1a was in the mainstream could be 2015. That could have been too late for me to avoid Cirrhosis. I tried to work with the Incivek but the work was too physical and that failed. I am now spending what money I have left to make sure of at least one thing...I finish tx. health matters above all to me right now. If I don't have that it doesn't mater what else I have. If I get a SVR everything else will fall into place.

So if I seem to have a little attitude about sx and tx...well that's just the way it is ;) You'll just have to forgive me or ..or not.

take care

Hi Dillo,  Changing the walk routine is difficult for me. I am still doing my daytime walks. Got a big Hat and wear long sleeves and sunscreen And try to go when it is cloudy. The trial I am on is only for 8 weeks so am hoping the RIBA won't be too hard on me. I have also been on another forum with ION 2 and 3 participates. The folks not taking the RIBA are having very few side effects and most are going UND by  first or 2nd week so it looks very promising. best of luck on your treatment.

Hi Kellie, I wish you the best of luck on your treatment. I will try the coconut juice, can get fresh coconuts at jimbos. I have been guzzling as much water as possible. The RIBA seems to really effect my eyes and I am concerned that it has happened so early in the treatment. Just wondering, what made you choose to go ahead and start SOC treatment rather than wait for interferon free treatment in the future or try to get on a trial? How many weeks is your treatment?

Hi there CKncali, 24 weeks my friend. Well that's a very good question. I've had other folks ask me about that too. Why go through this when we're at the threshold of easier treatments.

At this point I am blessed to have really good insurance and I may not have it in the near future was probably the biggest factor. Another factor is I have a supremely rockin' husband, who is willing to carry the load we used to carry together. I could not do this without him. How I can ever repay him for this? Speaking currently, he is on his last class for his BA degree. Next Friday is his last class.  I'm currently in really good shape, liver and body wise. Non cirrhotic, which is amazing because I've had this for over 33 years. I stopped drinking alcohol in '89 and became a vegetarian that year also, which I'm sure has a lot to do with the condition I'm in now. I started working out and moving my body in the mid '90's.

I'm tired of waiting, worrying and ready to get on with the 2nd part of my life.

I turned 50 last week and am excited to get on with it I want energy again. I feel like I've had permanent jet lag for 30 years. I didn't know for 22 years that I had this virus. I just thought it was normal to feel tired all the time

My mom, who is 75, runs circles around me.... I should have that too, since we are genetically about the same. I also came in contact, about 6 months ago, with an amazing medical clinic with a NP that, I swear, is an angel in disguise. She told me she would get me through the treatment with such sincerity and compassion, all the lights became green and "it was time to pass go and collect my $200". The last time I did treatment I did 11 weeks, "au natural" w/o any meds to ease the sx. It was 10 years ago and I spent most of the time on the floor with horrible migraines. It is better now. Uncomfortable true, but doable.

It sounds like you may know about Peoples Co-op since you mentioned Jimbos. They have this organic coconut water that is like manna from heaven. They keep it frozen. I also switched to coconut yogurt. Manna from above.

At this point in treatment I'm dancing in my home. It's really just flapping my arms mostly but it's movement. I'm like a vampire with skin like tissue paper now. Sun & heat is a no no for me. Yes, my eyes have been affected too. I'm just taking it easy. I will gladly trade off a stronger eyeglass rx for SVR. I honor you for jumping in and taking care of this. It's a very positive & loving thing to do for oneself.

Sorry for the windy response. I love to write and this forum has been an unexpected blessing. My friends here even like me when I'm mean and cranky.
 big hug for you,

Ckncali wrote:

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Hi Dillo,  Changing the walk routine is difficult for me. I am still doing my daytime walks. Got a big Hat and wear long sleeves and sunscreen And try to go when it is cloudy. The trial I am on is only for 8 weeks so am hoping the RIBA won't be too hard on me. I have also been on another forum with ION 2 and 3 participates. The folks not taking the RIBA are having very few side effects and most are going UND by  first or 2nd week so it looks very promising. best of luck on your treatment.

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 Its good your not having to change you walks because of the meds. Your doing about all you can do to protect yourself.  It usually effects everyone the same but different. I went through a time with Riba the Peg and Incivek, a time with just the Peg without the Riba but not a time without the Peg and Riba. Sometimes hard to tell which one of the Peg and Riba is causing a particular sx.  I noticed more clarity without it, a burst of energy when beginning it again, and more tiredness and fatigue with both of them as it accumulates. Headaches lately and I just use Tylenol. Sometimes more itchy than others. Its always been a little different from week to week My total sx on the whole treatment have been small compared to some others so I thank my lucky stars for that.

I have also noticed some going UND that early and some really upset that they have not. Most go UND within 4 weeks so no fault in that I would think. I have seen some reports in relapse with the ION 2 but then treatment is extended so that's a bit still undetermined and some treatments with some GT's could still have Peg and Riba as is on some Gilead applications for approval I've seen. Maybe just a way to get some things pre-approved to save time later when everything is all worked out.  

I am more of the "it ain't over till it's over kind of guy" especially since I have heard the big pharmas (and Doctors) talk before. Hopefully it will be the holy grail  we needed for Hep C in all GT's and the insurance folks won't mess with people as to what they will cover and what they won't per GT.

Best of luck on your treatment.

-- Edited by Dillo on Friday 14th of June 2013 04:29:31 PM

You are most welcome! It feels good to be helpful especially now at this point in treatment. Most of the time now I spend contemplating my feet..lol... not really just joking K

Kellie wrote:

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Hi Tig, welcome to the club!

Could it be a small case of thrush? Do a bit of research on this. I am on the Incivik. I came down with a small case of this a few weeks ago. Pretty common. These things can happen when our immune systems are taxed. These chemicals are very strong.

I started gargling with a diluted solution of  braggs organic apple cider vinegar 2wice daily.  Seemed to do the trick for me. Oral hygiene is very important. Get a new toothbrush too.

If the docs diagnose thrush there is a Magic Mouthwash you can get by prescription too. I heard this works really good too.

I hope this helps

Kellie, I looked that up and you may be onto something with that Thrush. It looks very similar and rather description is spot on! That would explain why I'm afebrile too. I'm going to work on that angle, thank you!

I really appreciate the welcome and your advice! Today was my 4th injection and I'm experiencing more side effects than before. Besides my throat issues, my inner ears have started itching, perhaps due to the oral problems. Overall itching comes and goes, fatigue is worse than it has been. I'm really having some fun today, I can hardly wait for the VICTRELIS! 

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Welcome CkNCali, This is a great forum, with wonderful caring folks willing to share their experience & hope. I'm on Riba too (triple treatment with Incivik) - going into 9 weeks this week. I've had problems with the sun and heat since the first week. I've always been sun & heat sensitive, so this may have something to do with it. Also it may be more Incivik related. I do have a riba rash now(mostly around my joints, ankles; wrists; inside of my arms.

It's good that you're exercising early on in treatment. At about this point, the best I can do is flap my arms alot. I drink about a gal of liquids a day. When water gets to be too much, I switch to coconut water. It's good for electrolytes and I think has added bennies, which because of the brain fog I cannot think of right now.

Don't be afraid to ask the doc for something to help sleep if it becomes an issue. Sleep deprivation makes the body have to work harder at healing. I've got a small rx of Xanax & Atarax. It's coming in handy now. Welcome again - you are in great company Kellie

Welcome Ckncali and Tig.

Tig, i am on same treatment with Vict. Seems like you just get used to the 2 drugs for 4 weeks then here comes the Victrelis, a whole new ball game. Hang in there i have faith you can do it. Especially if i have done it.

Hi and welcome

honey and muthwash helped in my case...also salt warm water gargling

best

Hi Tig, welcome to the club!

Could it be a small case of thrush? Do a bit of research on this. I am on the Incivik. I came down with a small case of this a few weeks ago. Pretty common. These things can happen when our immune systems are taxed. These chemicals are very strong.

I started gargling with a diluted solution of  braggs organic apple cider vinegar 2wice daily.  Seemed to do the trick for me. Oral hygiene is very important. Get a new toothbrush too.

If the docs diagnose thrush there is a Magic Mouthwash you can get by prescription too. I heard this works really good too.

I hope this helps

I want to introduce myself to the group here as I'm getting things moving forward in a hurry and am already wanting the support of a like minded group of individuals. I was diagnosed in 1996, GT 1a after a needle stick injury. Tried mono therapy unsuccessfully in 96 and my GI doc didn't care for the percentages at that time so we didn't retry therapy then. I recently obtained a new doc, a Hepatologist and on May 23, 2013 decided on giving triple therapy a go. Started Pegasys Pro Click 180 and Ribavirin 1200mg on May 23 and will start the Victrelis next week.

I'm beginning to feel the effects of the two drugs already and am not looking forward to the addition of the Victrelis next week. Over the last 4 days I've developed an awful sore throat, appears to be Strep, but not running a fever. I've got a medical background so I'm familiar with most things medicine so I'm familiar with things in general but the triple therapy is a whole new ball game for me and each day is a new experience with this stuff. I picked a week to develop this throat infection on a week that my doc and his entire staff are on vacation. His stand in replacement simply said to go to the ER, hell, I could've figured that one out. I wanted some information not directions to the hospital. Is this a condition to expect or anticipate? I'm treating it with saline gargles, and NSAIDS. Before I go to the ER I would like to know what you had to say. I don't want to be treated by an unknowing Resident that throws a wrench into my now 4 weeks of treatment. The infection seems like I said to be Strep, white patches and a nice red tinge to everything. But it isn't getting worse, it seems to be staying the same and I haven't run a temp. It's very sore, hard to swallow, but am hydrating and can tolerate yogurt, soft foods and soups. Is this to be expected? If so I'm not going to go to the ER, at least not for every new symptom that comes down the pike. I've read any number of other websites, forums and the like and haven't really received a knowledgeable response on the throat. I'd appreciate any replies! Thanks for your time...

Tig

Ckncali wrote:

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Hi Everyone, I have been reading your messages for  a while and wanted to introduce myself. I diagnosed myself with HepC 3 years ago after several years of a variety of symptoms including extreme fatigue.. While my liver damage appears to be non existent i believe the virus had attacked my central nervous system causing years of undiagnosed symptoms. I am now on my 6th day of treatment on Gileads ION3 clinical trial with sofusbuvir and ledipasvir with RIBA for 8 weeks. I see that there are some people on this forum on the same trial and I would like to share with you my experience while going through this trial.

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 Hi CKNcali

Hope your doing ok on the Gil triad. Thats a great one to be on. I am a member on another forum where lots of people are on either the ION 2 or 3.

I hear is is best to avoid the sun as much as possible if your in one of the Riba arms. I have heard of some getting bad riba rashes from the sun.  I live in Texas and I am on triple treatment with just the Pegasys and Riba now. I avoid the sun as much as possible wear long sleeve t-shirts etc when I can. I am pretty much nocturnal on  my walks with my dog. I also have some PAD and during the Incivek walking was hard. It's getting better now that off of it but I don't push it. We used to do 3 to five mile hikes every couple of days before treatment. Your doesn't have as many sides but it is good to allow yourself to be sick while on treatment.

If your still fine with the walks I'd suggest night time ones. I start when it's still light but the sun has mostly gone down or about to. A big flashlight and of course with me my 2yo 90lb lab is a good partner cause when I get tired she still pulls me along

-- Edited by Dillo on Friday 14th of June 2013 02:42:31 AM

Thanks for the welcome and all the advice.

Not sure what other meds you can take with the trial meds, but you might want to see if thou can take Zyrtec. Just make sure you are drinking a ton of water and hydrate your skin with lotion or oils..... I use baby oil and coconut oil. You can always use an umbrella when you walk for extra shade.

Welcome - you'll find the forum a great support. 

Caroline

Welcome to the forum! You are among great people and support here! I am not on the same treatment as you, but am on RIBA. What concerns do you have? 

Hi and welcome from me too, and thanks for introducing yourself!  Well done for getting on ION-3, as you`ve already seen, we have other members currently on the same trials and I`m sure they would be happy to talk with you and share their experiences.   Please feel free to start a new thread in the `Clinical Trial Participants` section too.

Many people do find they have to avoid being out in strong sunshine when on treatment containing ribavirin, although it sounds like you`re taking all the necessary precautions, and as long as you`re not having any problems with itching or rash then the fresh air and exercise is likely to be doing you good.  

Dryness is a typical treatment side effect, so make sure you`re drinking enough water and other liquids to keep yourself well hydrated.  Riba can cause difficulty sleeping and some people find taking it earlier in the day or evening helps with that, but I`m not sure about your dosing schedule and protocol on the trial.

All the best of luck!    ~ Jill

Hi, Thanks for the welcome.  I like to do a 5mile walk every day and I wear a long sleeve shirt and hat and sunscreen on the walk but wonder if i should not be out in the sun at all to avoid  RIBA rash problems.  Since starting the treatment my eyes have become very dry and irritated, so not sure if that is from RIBA or one of the other drugs. 

(Edited by request)

Hi Everyone, I have been reading your messages for  a while and wanted to introduce myself. I diagnosed myself with HepC 3 years ago after several years of a variety of symptoms including extreme fatigue. While my liver damage appears to be non existent i believe the virus had attacked my central nervous system causing years of undiagnosed symptoms. I am now on my 6th day of treatment on Gileads ION3 clinical trial with sofusbuvir and ledipasvir with RIBA for 8 weeks. I see that there are some people on this forum on the same trial and I would like to share with you my experience while going through this trial.

(Edited by request)