Hep C Discussion Forum

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.

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...

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 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,

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

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

Hi and welcome

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

best

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

Thanks for the welcome and all the advice.

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

Caroline

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