Medical Forum / Diseases and Disorders / Hepatitis / June 2009
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bluz56 - 15 Jun 2009 14:47 GMT Hello everyone, this is my first post. I was told by my doctor 4 yrs ago that I had hep-c. I started seeing a specialist 2 years ago and am now preparing for treatment. (interferon/ribavrin) They have asked me to lose some weight and mentally prepare for 48 week treatment to start in Aug-Sep.I am genotype 3. Somedays I feel very confident that I can handle this new adventure, but of coarse some days I wonder if I'll have what it takes to get thru it. My only other experience with news groups was for a panic disorder 10 years ago and I am happy to say It helped me tremendously. I have many questions about treatment and hope I will be one of the lucky folks who tolerate it well. I live alone in nortwestern Ontario,Canada, but have loving family members just down the street. I am looking forward to hearing from members of this group who can help me with my confidence, and perhaps keep a smile on my face.By reading thru some of the posts I see that many of you are extremely knowledgeable about hep-c and the treatments. I have no idea what some of the medical terms are that you are using but I'm guessing I will in a year or so. I am 54 yrs old. My name is Ken. Thank you for your time
chuck - 15 Jun 2009 17:25 GMT > Hello everyone, this is my first post. > I was told by my doctor 4 yrs ago that I had hep-c. [quoted text clipped - 16 lines] > I am 54 yrs old. My name is Ken. > Thank you for your time Welcome to the NG. Glad to have you here but sorry you have to be here. I'm finishing week 16 of a 24 week course of treatment. I too was very apprehensive when I first started but, for me anyway, the treatment hasn't been the complete nightmare I had expected. It's been more like an unpleasant dream. I tested undetectable at my 4 week viral load test and am waiting for my 12 week results. Hopefully they will come back undetectable too. I'll keep you all posted when I find out this Friday. I too live in Ontario Canada and we are lucky enough to have a 24 hour PegCare line that will address any concerns you have once you start treatment. I, fortunately have not found it necessary to use this service yet. I may be wrong but I do believe that the common course of treatment for type 3 is the same as for type 2 (which is my genotype) and is 24 weeks. I would clarify that this is indeed the case. An extra 24 weeks of treatment can be rather burdensome. Well here's wishing you a good and early response to your treatment.
read this: http://digestive.niddk.nih.gov/ddiseases/pubs/chronichepc/ and also this: http://www.docguide.com/news/content.nsf/news/852571020057CCF68525738D0072810A
bluz56 - 16 Jun 2009 14:04 GMT Hello Chuck, Thanks for the response.Could you tell me what "PegCare" is? Is that a chat line for people in Winnipeg?yuk.Does it apply to all areas of ON. Glad that thing are going well for you. Cheers
>> Hello everyone, this is my first post. >> I was told by my doctor 4 yrs ago that I had hep-c. [quoted text clipped - 37 lines] > and also this: > http://www.docguide.com/news/content.nsf/news/852571020057CCF68525738D0072810A chuck - 16 Jun 2009 15:59 GMT > Hello Chuck, > Thanks for the response.Could you tell me what "PegCare" is? Is that a > chat line for people in Winnipeg?yuk.Does it apply to all areas of ON. > Glad that thing are going well for you. > Cheers PegCare is a 24 hour help line with RNs on staff , trained to understand hepC and it's treatment. They are there to answer any questions you may have about your treatment. They will also arrange for full or partial reimbursment for the cost of treatment (1 pay $1973 for a 4 week course and it is fully covered under my employer's drug benefit plan). They will help you with contacting your own drug benefit provider (if you have one and require help) and determine what percentage of your treatment would be covered. If you have no coverage, full or partial coverage may be provided by Ontario's Trillium Fund. It is based on income and varies from case to case. In any case they will provide assistance with this. As for availability, I believe it may be a service that is provided by the pharmaceutical company my treatment specialist has prescribed to me. Other pharmaceutical companies will probably have similar, if not the exact same, service. Ask your treatment nurse about it.
bluz56 - 16 Jun 2009 17:35 GMT Thanks Chuck, I'm on the trillium band wagon, and my nurse told me not to worry and that they have the budget for me. My employer went under and may not even pay out our severance.This whole town is going under. Last year my deductible on trillium was $1600.00 plus. They base it on the year previous income. This year I guess I'm going to get some payback for that.If all goes well,the start of tx will be the end of Aug. Cheers
>> Hello Chuck, >> Thanks for the response.Could you tell me what "PegCare" is? Is that a [quoted text clipped - 16 lines] > pharmaceutical companies will probably have similar, if not the exact > same, service. Ask your treatment nurse about it. Thip - 16 Jun 2009 00:51 GMT I have many questions about
> treatment and hope I will be one of the lucky folks who tolerate it well. This is a great place for those questions, and the only stupid question is the one you don't ask. :-) Write them down as they come to you and post all you want. Best of luck!
bluz56 - 16 Jun 2009 14:05 GMT Thanks Thip, Will do... Cheers
> I have many questions about >> treatment and hope I will be one of the lucky folks who tolerate it well. > > This is a great place for those questions, and the only stupid question is > the one you don't ask. :-) Write them down as they come to you and post > all you want. Best of luck! Dwight - 16 Jun 2009 03:54 GMT > Hello everyone, this is my first post. > I was told by my doctor 4 yrs ago that I had hep-c. [quoted text clipped - 16 lines] > I am 54 yrs old. My name is Ken. > Thank you for your time You've found this place and it is a good place to ask questions. The best thing I can tell you is to go into tx (treatment) with an open mind and don't be too worried about it. The reactions to tx are as wide and varied as the people who go through it. My first time through tx was in 98 and I hadn't heard any horror stories, come to think of it I hadn't heard any stories at all about tx. The doctor warned me that there might be some side effects, but I went through tx without any problems that I can remember. The second time was a little rougher, but I made it through it and am still around. I wasn't one of the lucky one's I never reached undetectable. I will probably go through tx again some day, but it won't be soon. My body has been pretty stable for the most part and if nothing else tx has slowed the dragon down to a crawl. If you don't have a good hobby, you might want to find one. Several of the people here got me back into playing music and it has been a great distraction both during and since tx.
I'm curious, does bluz56 have anything to do with music?
Dwight
bluz56 - 16 Jun 2009 13:23 GMT Hello Dwight, Thanks for the advice.Open mind it is. Bluz56 has several connotations. #1-I have a blue,1956 Cadillac that I have kept running and looking fairly decent for the last 15 years. That's a hobby,but not for the 6-7 months of winter we get here. #2-I am a huge blues fan and fancy myself a lyric writer. That could be a winter hobby.I'm not as productive on the song writing as I used to be, but I will certainly have some blues material developing in the next year. I've seen a lot of blues acts in my life and hope to see a bunch more. I have co-written songs with friends who are prominent on the Canadian blues scene.I look forward to telling you about it over the next while. Cheers.
>> Hello everyone, this is my first post. >> I was told by my doctor 4 yrs ago that I had hep-c. [quoted text clipped - 36 lines] > > Dwight Thip - 16 Jun 2009 23:54 GMT > Hello Dwight, > Thanks for the advice.Open mind it is. [quoted text clipped - 9 lines] > scene.I look forward to telling you about it over the next while. > Cheers. Oh geeeeeeeez, we need Elmo! Bluz, Elmo was a huge part of this group for just about forever, but he slayed his dragon and eventually moved on. He's very much into blues (saw a pic of him once with Johnny Winter, which had me green with envy) and you two probably would get along famously. Elmo, where are you???!
bluz56 - 17 Jun 2009 11:31 GMT I saw Johnny Winter last year or the year before. He's been here twice, and was all that I had expected and more. I like "Elmo" already Thip. Cheers
>> Hello Dwight, >> Thanks for the advice.Open mind it is. [quoted text clipped - 20 lines] > had me green with envy) and you two probably would get along famously. > Elmo, where are you???! Thip - 18 Jun 2009 01:06 GMT > I saw Johnny Winter last year or the year before. He's been here twice, and > was all that I had expected and more. I like "Elmo" already Thip. > Cheers Dang, last time I saw him was in the early 70's. He had all that fabulous long white hair then, and oh, did he play that guitar!!! I think "Second Winter" is just about my all-time favorite album. I like his other stuff, but he really showed out in his early days.
Paul - 16 Jun 2009 08:32 GMT On Mon, 15 Jun 2009 09:47:52 -0400, "bluz56" <bluz56@tbaytel.net>, in message ID <Ir2dnczT87mdzKvXnZ2dnUVZ_rednZ2d@tbaytel.net>, in the newsgroup alt.support.hepatitis-c wrote:
>Hello everyone, this is my first post. >I was told by my doctor 4 yrs ago that I had hep-c. [quoted text clipped - 16 lines] >I am 54 yrs old. My name is Ken. >Thank you for your time Welcome to this NG. Sorry to hear that you have hep-c. Genotype 3 is usually treated for 24 weeks rather than 48 as it tends to be treated the same as genotype 2 (which I had). However, there have been rumblings that geno 3 is a little bit harder to shift than 2 and there were noises coming from some quarters to treat it for a bit longer than 2 - though I don't know if anything came of that. I can't quote any medical sites on that as I don't know how valid those noises were. Anyway, treatment (tx) doesn't make brussel sprouts grow out of your ears or make you grow an extra leg. Most people find tx unpleasant, annoying, but doable. At either end of the extreme sometimes people's bodies react badly enough to be taken off it and at the other end, there may be only minimal side effects experienced. The overwhelming majority are in that middle ground though. The good news is that geno 3 is easier to treat then geno 1. There is a greater chance of freeing yourself from the virus. You do need to discuss treatment length with your doc though. I'm a bit out of touch but there was talk of splitting the difference with geno 3 and going for 36 weeks. However, I don't know what came of all that or even how authoritative that talk was.
bluz56 - 16 Jun 2009 13:32 GMT Hello Paul, The doctor I have, has spoken only of a 48 week tx. I will be better prepared for my next appointment, I think I sat in stunned silence for most of the last.I will be able to speak on the subject with more certainty soon,I hope. I am trying to get myself in better shape.I got laid-off over 2 years ago and became more of a couch potato than I had been previously.Losing some weight is paramount to countering some side effects.(i think)But dieting is a bitch for people with a lust for life.ha Cheers
> On Mon, 15 Jun 2009 09:47:52 -0400, "bluz56" <bluz56@tbaytel.net>, in > message ID <Ir2dnczT87mdzKvXnZ2dnUVZ_rednZ2d@tbaytel.net>, in the [quoted text clipped - 48 lines] > for 36 weeks. However, I don't know what came of all that or even how > authoritative that talk was. chuck - 16 Jun 2009 16:03 GMT > Anyway, treatment (tx) doesn't make brussel sprouts grow out of your > ears or make you grow an extra leg. Just noticed last week that my arm hairs and my shoulder hairs have rally gotten quite bushy lately. I don't know if this will last afterwards.
Waterspider - 16 Jun 2009 09:24 GMT > Hello everyone, this is my first post. > I was told by my doctor 4 yrs ago that I had hep-c. [quoted text clipped - 16 lines] > I am 54 yrs old. My name is Ken. > Thank you for your time Hi Ken,
I just turned 55 and was diagnosed with hep C after having it for over 20 years. I live alone on the coast of BC, and I had genotype 3. Yes, had-- the pegylated interferon & ribavirin treatment (we shorten it to "tx" here) worked and I've been clear since finishing my 24 weeks in 2002. Or was it 2001? Anyway, the treatment was the hardest thing I've ever done in my life, and the best thing I've ever done in my life. I was in poor health when I started and had considerable liver damage, so I suspect that made my side-effects worse than if I'd been otherwise healthy. Or not. Everyone's experience is different, no rhyme nor reason. Everyone does seem to agree that the first shot is the hardest, probably because everyone is scared shitless the first time they inject the interferon.
Genotype 3 is considered winning the hep C lottery; it (along with geno 2) is the easiest to cure and the protocol for tx is 24 weeks. Not sure why they've got you down for 48, I'd confirm that. Genotype 1 is far more common, and that's the 48-week cruise. I'm also wondering why you're just lining up for tx now, four years after diagnosis.
In a month or so, I strongly suggest that you begin taking antidepressants and continue through tx. The drugs do not do wonders for one's disposition and sanity. Get all your chores done and plan on taking it real easy while you're on tx. No new projects, no extended holidays, no stressful situations that can be avoided. You're gonna be tired and cranky to say the least. Let someone store your guns for you. Stock up on pot; it will cure any nausea caused by the (other) drugs. Stock up on books, computer games and videos; nobody feels much like socializing while doing tx, and reading is so much fun... by the time you get to the second chapter, you've forgotten the first so you can re-read the same thing and it's brand-new all over again.
Do some Google homework to learn about a healthy diet for liver disease and stick to it. Sarah will tell you about drinking lots of water, and she knows of what she speaks. Of course you know by now not to drink alcohol. Watch out for bad science and snake oil... there is a bit of it floating around, but we'll set you straight if we have the opportunity. Welcome to the Order of Dragon Slayers, and now, what about those questions?
Waterspider
bluz56 - 16 Jun 2009 13:44 GMT Not sure why
> they've got you down for 48, I'd confirm that. Genotype 1 is far more > common, and that's the 48-week cruise. I'm also wondering why you're just > lining up for tx now, four years after diagnosis. I will confirm this at my next appointment,It is entirely possible that I am wrong about that (and many other things) Do you think they should have started the tx sooner or are they rushing me?
In a month or so, I strongly suggest that you begin taking antidepressants
> and continue through tx. The drugs do not do wonders for one's disposition > and sanity. Get all your chores done and plan on taking it real easy while [quoted text clipped - 6 lines] > you've forgotten the first so you can re-read the same thing and it's > brand-new all over again. No one has mentioned anti-depressants to me in much detail.Depression,yes,something to combat it,no! Don't own any firearms,already got pot.Just to enhance the satellite experience of coarse. Water,water everywhere and only gallons to drink.Getting used to that now. Cheers
>> Hello everyone, this is my first post. >> I was told by my doctor 4 yrs ago that I had hep-c. [quoted text clipped - 56 lines] > > Waterspider chuck - 16 Jun 2009 17:37 GMT > Do you think they should have started the tx sooner or are they rushing > me? >clipped They usually initially determine the need for treatment by your blood liver enzyme levels (in Ontario anyway)
> No one has mentioned anti-depressants to me in much > detail.Depression,yes,something to combat it,no! > clipped My GP said that antidepressant are to be used as a treatment for depression not as a preventaion against depression. I think you may have to be depressed before they will prescibe anti-depressants to you. I could be wrong and it just may be my doctor. In any case, personally, I've noticed some shortness of temper and some higher emotions than usual but nothing I can't handle without adding another drug to my system. I currently use a myriad of other drugs to treat a heart condition, exzema caused by treatment and some sleeping difficulty also brought about by treatment.
Russian - 18 Jun 2009 00:30 GMT > I think you may have to be > depressed before they will prescibe anti-depressants to you. That's depressing !
<g,d,&r>
Waterspider - 20 Jun 2009 04:38 GMT >> Do you think they should have started the tx sooner or are they rushing >> me? [quoted text clipped - 16 lines] > caused by treatment and some sleeping difficulty also brought about by > treatment. With respect, I don't think your GP knows a whole lot about treatment for hepatitis C.
A prescription for antidepressants BEFORE tx begins is common protocol. Antidepressants take at least several weeks to settle in to doing what they should be doing, and often a type/dosage change is required. Depression is a well documented, common and often severe side-effect of tx. Suicide attempts have been noted, some of them successful. Tx-related depression is not something to take lightly.
Suri Cruise - 20 Jun 2009 08:07 GMT > >> Do you think they should have started the tx sooner or are they rushing > >> me? [quoted text clipped - 26 lines] > have been noted, some of them successful. Tx-related depression is not > something to take lightly. I'd simply add that this experience is likely to be hard enough no matter WHAT you try to do to mitigate it, please do not try to turn your hep c treatment into a contest to see how much self-flagellation you can endure. Need antidepressants and can't get an Rx because your doctor is a 'tard? There are only about sixty billion websites (www.airsealed.com , www.unitedpharmacies.com blah blah blah) to order them from.
Please use whatever you need to get through this. Well, almost, anyway;)
This morning I realized that despite having an exhausting week filled with sleep deprivation I felt better than I had at any time during treatment even while gobbling mass quantities of opiates & benzos...
Feels good to no longer be "living in Methadonia"...
chardonnay9 - 20 Jun 2009 14:29 GMT >>> Do you think they should have started the tx sooner or are they rushing >>> me? [quoted text clipped - 24 lines] > have been noted, some of them successful. Tx-related depression is not > something to take lightly. I got on antidepressants before treatment but I knew I was prone to mild depression anyway. It did take a few tries with different types till I found one I could tolerate. The problem is that whatever kind works for one person won't work for another.
I was on Zoloft at a max of 200 mg a day. Normal dose I'm told is 50-100mg. I've just gone through a gradual reduction in dose till just last week I quit altogether.
Evidently the Zoloft was contributing to my lack of energy because all of a sudden I've had more energy than I've had in decades and I'm actually cleaning my house (those who have done the tx know about that). Of course I'm still drinking colloidal silver too which also energizes.
topcat - 16 Jun 2009 21:54 GMT > Hello everyone, this is my first post. > I was told by my doctor 4 yrs ago that I had hep-c. [quoted text clipped - 16 lines] > I am 54 yrs old. My name is Ken. > Thank you for your time Hi Ken, Welcome to our little corner of the world. I finished a 48 week course in March. I remember it was a bit scary at first, but got easier over time. We all seem to be a little different in regards to tolerance, but some similarities. I had a bit of nausea at first, and some body aches but I got thru it all and if I can, anybody can! Hang on, keep us posted and ask question when you need to, some of these folks here have a lot of helful info to share. Good Luck Joe
bluz56 - 16 Jun 2009 22:42 GMT Thank you Joe I really appreciate it. Cheers
On Jun 15, 7:47 am, "bluz56" <blu...@tbaytel.net> wrote:
> Hello everyone, this is my first post. > I was told by my doctor 4 yrs ago that I had hep-c. [quoted text clipped - 21 lines] > I am 54 yrs old. My name is Ken. > Thank you for your time Hi Ken, Welcome to our little corner of the world. I finished a 48 week course in March. I remember it was a bit scary at first, but got easier over time. We all seem to be a little different in regards to tolerance, but some similarities. I had a bit of nausea at first, and some body aches but I got thru it all and if I can, anybody can! Hang on, keep us posted and ask question when you need to, some of these folks here have a lot of helful info to share. Good Luck Joe
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