Hep C Discussion Forum

Enavigo3891 · Senior Member

RE: New member introduction

OldenSlow · Senior Member

Optimistic - Glad the problem seems to be resolving for you. I would think there's a fair amount of variance in water requirements. Body weight, diet, activity level, local temperatures... seems to me there are multiple factors that would influence how much a given person might need. Rule of thumb is 2-3 quarts/day. I seem to do well as long as I get around 2 quarts. Don't want to spend ALL my time in the bathroom. :)

optimistic · Member

day five of treatment, i drank lots of water like a camel yesterday. no headaches yesterday, i slept well last night and no headache today. thanks all for the advice. funny how a simple thing like water can solve a problem. smile

optimistic · Member

thanks for the reply. yesterday i drank lots and lots of water, and of course i was back and forth to the bathroom plenty. this morning i woke up without a headache., but since taking my meds this morning i have the slight makings of a headache also i feel a little spacey. one thing i find since starting my meds is i like quiet more than usual i dont want to talk to to many people except my wife and cat. i am new to this treatment and i dont know about all of the high and low levels of my blood when i get my 4 week bloodwork and meet with my doctor i will ask him all of the pertinant questions and post my before and one month progress.

Enavigo3891 · Senior Member

optimistic wrote:
thanks for the info, i drink spring water daily but not 2-3 quarts living in miami we dont trust the city water even our indoor sphynx cat drinks only spring water, but that is another story sensitive stomach and no hair but he is a really cool cat. i will increase my water intake as of today. it sucks having headaches. peace.

Hi Optimistic - I'm not on the Oly, I'm on Sovaldi + Riba so it's hard to say which drug causes which side effect (in my opinion). I'm on day 27 of treatment and in the beginning I got some ridiculous headaches. The kind that affect your thinking, your vision, etc and make you want to crawl into a dark and quiet room. As OldenSlow suggested - I related it entirely to my water consumption. I've never been a big water drinker but since starting treatment I went and bought myself one of those 2QT tupperware things and I make sure I drink at least one full one per day, 1.5 if I can. Since paying more attention to the water, I haven't had one of those miserable headaches. I've even been able to stop a few that I felt coming on by chugging water! Granted I use the bathroom more than a pregnant lady these days but hey... if it makes things more acceptable, I'm game! Good luck and keep on trucking!

optimistic · Member

thanks for the info, i drink spring water daily but not 2-3 quarts living in miami we dont trust the city water even our indoor sphynx cat drinks only spring water, but that is another story sensitive stomach and no hair but he is a really cool cat. i will increase my water intake as of today. it sucks having headaches. peace.

OldenSlow · Senior Member

Many are reporting headaches, especially early in treatment. I had a few myself. Are you getting enough water? I thought I was, but after cranking up my intake to 2-3 quarts/day, things smoothed out.

optimistic · Member

thanks wayne for the welcome. going on my third day of meds, last night i had a severe headache, unusual for me got out of bed very early lying there head pounding hopefully this too shall pass. looking forward to a nice sunny day. keep the faith

OldenSlow · Senior Member

Hi Optimistic,

Wanted to add a warm welcome, as well!. Happy you found us. Sounds to me like you've got a good doctor in your corner. You are being treated with the best meds currently available, and with the fewest side effects. You should do quite well. Like you, my approval came surprisingly fast and I was very happy about that. It doesn't always go that way. I say we count our blessings and get on with it. ;)

wayne

optimistic · Member

thanks for the kind welcome. i do not know much about the medical terms, but when i meet with my doctor in 4 weeks i am sure i will have a better understanding of them and then i will share with the forum what i know and understand.it has only been two days since i started the meds. it is so unusual with the majority of doctors they keep you coming back many times for whatever reason,but with this doctor it was different i met with him in october and he said a new medication was about to be approved by the fda at the beginning of the year. he also stated that the treatment was very expensive so i thought that i be left out of the loop. he did not contact me for appointments or even contact me at all. until i got a call from a speciality pharmacy stating that i was approved for this medication i could not believe it my wife and i are so elated over this. i guess miracles do happen. thanks for the encouragement and i will keep everyone posted.

Cinnamon Girl · Guru

Hi Terri, welcome to the forum! Sorry to hear about your diagnosis of Hep C, we all know how scary it can be at first but it is very treatable especially now with the new drugs that are available, and Sovaldi + Olysio is a very powerful combination.. We have a group of members doing the same treatment and they are responding very well, with minimal side effects.

It all seems very confusing at first so I`ll just explain a bit about Hep C. Anyone who is infected with this virus can pass it on to another person via blood to blood contact, you can`t just be a `carrier`, so you stand as much chance as anyone else of being cured.

There are several different strains of the Hep C virus, called `genotypes`, and you have genotype 1. I think the `bad gene` you mention is what`s know as the `Q80K polymorphism`, and people are usually tested for that if their doctors are considering putting them on treatment with Olysio. Because you`ll also be taking Sovaldi you will still stand a very good chance of success, so try not to worry.

I hope that helps sort of some of the confusion! Best of luck with getting your insurance approval, keep in touch and let us know how it goes!

tgirl · Newbie

Hello,

I'm a little nervous talking about this for it is the first time I've ever spoke about it. You see I'm a carrier of a rare hep c1 virus. I have been convinced by my hep Dr. to take the cure. It will be solvaldi and olysio. I was told it is harder to cure a carrier. I was also told I have never been nor will I ever be nothing but a carrier. I don't understand all of this but I've never been sick and am scared of getting sick. I also feel the great urge to do this in hopes that my blood will be cured from this virus I carry. All my organs are in great shape. I've been a very lucky and blessed person. In return I feel I need to do this to help the cure for everyone. I've read some of your chats and I pray for all of you. Is there any advice you can give me? Do you know how sick I will get or if I will at all being that I'm only a carrier. Thanks for listening. also I was told that there are several different types of c1 and if I had not other bad gene in my body then if I understood him right I wouldn't need the cure but I have one other bad gene and it is the lung cancer gene and that is why I need the cure. the type I have will attack my lungs also. I quit smoking that day. I haven't smoked in 8 days. I'm waiting on my insurance to approve my medication. it takes 10 days. hopefully in a couple of weeks I'll be on my way.

Tig · Admin

Hello Optimistic,

I'd like to welcome you to the forum too! You've started one of the newest and most effective treatments there is to combat this virus. Your chances for SVR have never been higher! If you would like to share some information like your genotype, etc., it will allow us to provide better informed opinions. It's up to you. The side effects you've mentioned aren't unusual and once your body adjusts to these new medications, hopefully they will lessen in severity. Fortunately there aren't many side effects with these new drugs. We have several people here on these new treatments that will be happy to talk with you about their experiences on treatment. Good luck and keep us informed as you go forward with Tx.

Tig

optimistic · Member

great thanks for the welcome. good luck with those results. i look forward to reading them. my second day of treatment and i feel a little dizzy or a little out of it, maybe it is my imagination who knows. my doctor asked me to do blood work in 4 weeks, i did my blood work on wednesday one day before i started my medication. good luck to all.

Rybronco · Veteran Member

Hey Optimistic,

Welcome. I'm new here too, I started the same regimen on Feb 21st. There are many folks here on the Sov/Oly regimen and I have not read ANY reports of serious sides. I have read, and you will too, the powerful effect of this combo on the virus.

I had my two week labs drawn yesterday, I will post the results when I get them.

Stay strong and rockon!

optimistic · Member

hello all i am new to this forum. i just received my olysia and sovaldi on march 5th and started taking them on the 6th today at 10:00 a.m. will be my second set, so far no noticeable side effects. i am 58 years old and found out in oct.2013 that the hcv was present. so happy that my insurance approved my prescription.good luck to all being treated with this medication.

Enavigo3891 · Senior Member

Someone else just posted a link in the "my meds are on the way .... (almost)" post... That link is to an article which specifically states that Express Scripts are pushing docs to hold off prescribing Sovaldi to those who can wait due to the cost. As Tig said - my concern would be someone changing their minds between now and may. The more I read about how the healthcare industry seems to be flipping out about this Sovaldi - the happier I am that I started when I did. I should be long done with it by the time all the big wigs get together and try to stop approving it all together.

Tig · Admin

Hi Zavr,

Under normal circumstances yes, one month should be more than adequate. I wasn't on Sovaldi but all of these approvals seem to come down to the almighty $dollar$. When I decided to treat, my plan approved it immediately and approved all subsequent requests while I was on hold with my specialty pharmacy. Like the others here, my drugs were approved on a month to month basis. I had considered waiting to treat for a few months but the fear of them changing their mind made me choose to treat immediately and I'm glad I did. If you haven't checked with the various patient assistance programs that help you with finances (copays) and supplies, do so. You can do that ahead of time without time constraints. We have all of that info here and I'll provide it if you need it. Good luck!

Tig

zavr · Veteran Member

nevermind... Just checked the status, and it was reverted to "canceled/unable to process online" for all 3 medications. I'll guess I will start arguing with them in mid-May, to get started in mid-June. Do you think 1 month would be reasonable amount of time to expect to get approved?

zavr · Veteran Member

Darn it... Thank you for this information - I'll try to stop the preauthorization process for Sovaldi, so that I can start in June. My question is: the preauthorization was required for Sovaldi, however, the Riba and interferon are already being processed by my mail order pharmacy (express scripts). Do you think it might be a problem for me to hang on to the riba and interferon until June, which is when I will order the first refill of these 2 drugs?

-- Edited by zavr on Thursday 27th of February 2014 03:26:13 PM

Enavigo3891 · Senior Member

Good Morning Zavr,

Good to hear you're reading up on things however just 1 word of caution in your decision to start your treatment in June. I see you're in the US - when you're approved for all your meds, you will not get the full 12 weeks at once. You will get them in 28 day supplies and the insurance companies have expiration dates on the pre-authorizations they give. For example - I was approved for 12 weeks of treatment Sovaldi/Riba on 2/3/14 but my pre-auth expires 4/28/14 which means I have to get all my meds by then. I initially had considered the same, waiting until after my house was built but then i found out I would have to go through the authorization process all over again. Plus, you will have to see your doc regularly while on treatment for blood work and check ups - I guess if your doctor and specialty pharmacy are okay with you getting shipments of your meds and storing them at home in preparation while not treating then maybe it's fine but you may want to check in with your doc on that. Best of luck!

zavr · Veteran Member

Thank you all so much for the warm welcome! So, my insurance is giving me the run around with Sovaldi, so it looks like it will be a few weeks until I get started. I realized that there is a silver lining (yay to horrible insurance! smile ), because it gave me a chance to read up a bit more on the side effects, and decide to wait to start treatment in June (which is when my schedule is a bit less overwhelming).

In the meantime, I will read all I can about making the treatment a little less hard on the body. Speaking of making things easier on the body, I spoke to my doctor about the counteracting the side effects of treatment, and he suggested taking 250mcg of Vitamin B12, 2000 UI of Vitamin D, as well as a couple of cups of coffee. I'm sure most of you know these bits of advice, but perhaps it will help someone.

Take good care,

zavr

mallani · Guru

Hi Natalia,

Welcome from me as well. Hope all goes well with your treatment. Once you start, you can post in the 'On Treatment' section of the Forum, and feel free to ask any questions.

Sovaldi has minimal side effects, but Peg. and Riba have their problems. Everyone varies in their response. I personally did not have any brain fog from my 48 weeks treatment, so I would not be overly concerned about your academic duties. Keep us informed. Cheers.

Matt Chris · Guru

Hello Natalia

Welcome to the forum as well, hope your 12 weeks go well. Getting used to the meds and how they change your sleep and rest patterns can alter your energy. Sometimes napping during the day can help if you can find the space. Listening to your body at the right times can help lessen the fog. Sometimes each person has to find there own way to balance their daily schedule.

matt

Tig · Admin

Hello Natalia,

I'd like to welcome you to the forum too! I took the triple treatment of Int/Riba/Victrelis and definitely experienced my share of brain fog. I like to call it my time in the Space Academy! It did increase in severity as time went on but there were times when my memory was clear and I took advantage of those lucid moments and took care of things that needed my best attention. I found myself being very forgetful and realized quickly that I had better do something to assist my memory or suffer the consequences. I started a journal, set alarms to remember medication times, and appointments, etc. My wife was also very helpful in reminding me to do certain things. I found that a trusted friend was helpful when needed.

Be sure to get plenty of rest, hydrate faithfully (2-3 liters of good water/day) and eat a good, healthy diet. Eating is often the last favorite thing on your to do list, but it will really help your strength and memory more than anything. Avoid the empty calories and processed junk. When you eat, make it count!

It's a good time to have a supportive network. This forum and the many friends I made here made my treatment much easier. The advice is worth it's weight in gold! Good luck, we're here if you need us!

Best, Tig

TimS44 · Veteran Member

Hi Zavr,

I am on the same combo of drugs myself. I am about 11 days in and I would say there is a minor amount of "brain fog". For myself, it's limited to mostly forgetting smaller things. My pills, for example, I always remember within an hour or so (once I had to count my solvaldi to make sure I took it). I would say while I don't feel as sharp as normal perhaps, I feel as though I can certainly pull it into focus for things at work. As hrsetrdr mentioned and many will tell you sx are so varied for person to person. I'll let you know if it seems to change as I get further in. Overall sx haven't been bad and this seems to be a great tx as far as success rates. I wish you all the best going forward!

Tim

Enavigo3891 · Senior Member

Welcome Zavr,

I cannot speak for the effects of the peg but I am on Sovaldi + Riba and I too was concerned about the side effects interfering with my work. As previously mentioned everyone is different. I can tell you that I am into day 9 of treatment and feel I do experience some "fogginess" but it does not usually rear it's ugly head until later in the day. I start work at 7am everyday and work until 5pm. I too am in a position where I am required to "be sharp" (I do commercial insurance investigations). I have been noticing that I start fading, so to speak around 3:30pm-4pm. And by my drive home at 5pm I'm fairly certain I get home on "Muscle memory" and not my own cognitive thinking. I've been making sure I go to bed (at least lay down) by 9pm to try and turn off my brain and get an adequate amount of rest. I have noticed that water intake and the choice of foods I eat during the day seem to play an important role in how clear my head is by the end of the day. As it's only been affecting me later in the day I have just been sure to work twice as hard/quick earlier in the day or tackle tasks that require a great amount of concentration first thing in the morning.

Good luck with your treatment.

hrsetrdr · Guru

Hi Zavr,

Welcome to the forums. Like you, I was diagnosed with HCV in 2009; I treated with the Peg+Riba+Boceprevir combination so I can only speak to the effects of those drugs and not the Sovaldi. I did personally experience the cognitive difficulties that you've heard about, however each individual's reaction to the drugs can vary so I can't predict what yours will be. Many here using the Peg-inf would take their injection on Friday afternoon, and experience increased sx in the following 12-24 hours. In my case, the following Monday~Tuesday was when the pronounced effects would occur.

I wish you the best for your successful treatment, and hope that the sx will not be too much of a burden with your work.

zavr · Veteran Member

Dear all,

I have been diagnosed with HCV in 2009, which I appear to have gotten in a hospital in the 80s, when I was a child growing up in Eastern Europe. I am just now joining this forum, because I have finally decided to go ahead and start the treatment. My doctor just prescribed the 12wk course of Peg-INF + Riba + Sovaldi earlier this afternoon, and I should receive the meds (if all goes well with insurance) within a month or so. My liver is in decent shape, with ALTs just slightly elevated. Other liver parameters are within range, and my viral load just a hair below 400K. Otherwise, my health is generally good (except for generalized anxiety that is treated with an antidepressant).

I am not certain if there are questions I can ask here, or if this is something that should be saved for the other sections of the forum. I guess I'll go ahead and ask one, unless I hear your gentle nudges to move the question to a new post. :)

My concerns are mainly regarding the cognitive side effects of the treatment. I have a very stressful academic job, where I am expected to be focused and productive. Because of these demands, I am worried that the treatment will be detrimental to my performance at work, as I hear that treatment often causes a "foggy brain" and memory difficulties. Would anyone be able to speak to these side effects? This might be a false hope on my part, but I wonder if these side effects are worse just a few days after each interferon injection? Thus, if one gets the injection on Friday, are the side effects less pronounced during the regular work week? I might be completely wrong about this, since it is possible that the cognitive effects come from the other 2 drugs (not simply the interferon injection). Either way, I am grateful for this forum. Just writing my worries out has made me feel a little better already.

I hope you are all well, and I look forward to spending more time on this forum and "e-meeting" you all!

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