Guest guest Posted January 9, 2011 Report Share Posted January 9, 2011 Hi Tonni Welcome to the Warriors group. I am don in ks, 60, DX'd 2008, geno 1B, labs good, heart bad, no HCV TX yet. Im sorry youve had a rough go of it. It sounds to me kinda like your pain issues might be Fibromyalgia. It seems that HCV and Fibro go hand in hand for a lot of us. I tried Lyrica too, didnt do anything. I now take Oxycontin 20mg per day. They help alot more, but not always enough. I dont like opiates either - they are addictive, so I use them 'as needed' [PRN], rather than everyday like the doc thinks. I personally dont know of any pain med 'safe' for the liver. Its a matter of balance - what can one use, what can one do without. I spend a lot of days with nothing because I can deal with the pain, other days I must take something.....but then Im drugged and worthless. Im glad your getting back to seeing your docs again. You need to keep tabs on your liver, and also try for meds if you need them. Also, this year maybe the Protease Inhibitors will be approved, and added to the Interferon and Riba, about double the responce rate....for genos 1's anyway. You might want to talk to your liver doc about this. What is your genotype? Do you take any alternative suppliments? love don in ks From: Tonni <tbrende7@...>Subject: [ ] new to group Date: Sunday, January 9, 2011, 10:25 PM Diagnosed in 2007 via registered mail after donating blood...worst way to learn you are registered with Center for Disease control for having a disease that you think is like aids...never gonna get to kiss my kids again withotu fear.....never claimed to be smart. Drove around for hours just crying and thinking and found a center that had big words that read HEP C Support...went in and got informed...went hoem and told family, after removing toothbrush and razor and calling doc to schedule everyone for testing....thank God I am only one affected.After 3 attempts to get to the bottom of what all this meant and each attempt costing me more labs and treatment of the coldest kind...I quit trying....I actually got yet another head cold so bad I finally went thru the ER at a local by your income hospital...everythign changed from there..too many appointments if you ask me, bt hey, it had been about 10 plus years, so went with it....Started treatments...got great lowering numbers, but no clear.....really had no issues with treatments, shots or pills (although felt pills were worse, for never felt any change with shots)...then the heart palpitations started, about 14 weeks in....then they got worse and oh my, had to lay down to make them stop, thought heart was gonna jump from chest when I sat up, even staretd skipping beats....17 weeks in, doctor stopped treatment and said liver disease is betetr than heart disease, I agreed...so, no longer doing treatments, almost 2 years now and this bone pain is killing me...I have a son that is 12 that is a quad, I am his arms and legs, yet some days my muscles wrinkle and my bones feel like they ar egonna break any second.....tried tordol, 1000mg ibuprofen works better...I know, I know, but pain gets unbearable and you go for what works...like right now, butt to ankles, but at the center of the bone not all of it and then them hands .....it was thought to be rheumotoid arthritis by GI, but that doc gave me lyrica and said ti was nerve pain....it worked wonderfully, at first...is it that I cna do more now, so I do and then it seems the pills don't work cause then I am in major pain all over, maybe...either way, it is gettign harder and harder to handle, for ibuprofen don't touch it any more...valium 10 mg does relax enough to sleep although those are not perscribed and cried for in desperation, but nothign touches pain at its core....seeing both docs soon and praying one of you all know this pain and somethign besides burning baths that help ease the pain, yet it also is safe for this liver...thanks------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2011 Report Share Posted January 9, 2011 mo, 41, 1a, heart issues all resolved heard about the new pill to be added but not sure since just the 2 caused such heart havoc...feel we caught it soon enough though, for everythign gone now. fibromyalgia, heard of it and actually saw it for lyrica commercial....need to research more...just wondering if bone pain is inner bone, or truly bone marrow????? only real bad butt down though, hands too, but entire bone there??? usin Truman, all I got oxyxontin...that far out, for aren't the codones even less of a narcotic???do they just not work??? did you try? just wondering...took a percocet one day and fell on my butt straight to bed, can't ahve that..need relief, but need to function durign day and be able to at night if son awakes.... Tonni Brende Wife, Mother, Grandma too... "Life is not about waiting for the storms to pass... it's about learning how to dance in the rain." athan, PVL, ACC, Unknown Leukodystrophy, scoliosis, ITB therapy- He can't sit alone, who wants to. He can't stand alone, who needs to. He can't speak our language, but is more understood than most. He can melt anger with a smile. He can quiet a loud room without speaking. And he can teach every single one of us that the little things are what are important. He is our gift and we are forever grateful. http://johnathanourgift.synthasite.com/index.php From: Tonni <tbrende7@...>Subject: [ ] new to group Date: Sunday, January 9, 2011, 10:25 PM Diagnosed in 2007 via registered mail after donating blood...worst way to learn you are registered with Center for Disease control for having a disease that you think is like aids...never gonna get to kiss my kids again withotu fear.....never claimed to be smart. Drove around for hours just crying and thinking and found a center that had big words that read HEP C Support...went in and got informed...went hoem and told family, after removing toothbrush and razor and calling doc to schedule everyone for testing....thank God I am only one affected.After 3 attempts to get to the bottom of what all this meant and each attempt costing me more labs and treatment of the coldest kind...I quit trying....I actually got yet another head cold so bad I finally went thru the ER at a local by your income hospital...everythign changed from there..too many appointments if you ask me, bt hey, it had been about 10 plus years, so went with it....Started treatments...got great lowering numbers, but no clear.....really had no issues with treatments, shots or pills (although felt pills were worse, for never felt any change with shots)...then the heart palpitations started, about 14 weeks in....then they got worse and oh my, had to lay down to make them stop, thought heart was gonna jump from chest when I sat up, even staretd skipping beats....17 weeks in, doctor stopped treatment and said liver disease is betetr than heart disease, I agreed...so, no longer doing treatments, almost 2 years now and this bone pain is killing me...I have a son that is 12 that is a quad, I am his arms and legs, yet some days my muscles wrinkle and my bones feel like they ar egonna break any second.....tried tordol, 1000mg ibuprofen works better...I know, I know, but pain gets unbearable and you go for what works...like right now, butt to ankles, but at the center of the bone not all of it and then them hands .....it was thought to be rheumotoid arthritis by GI, but that doc gave me lyrica and said ti was nerve pain....it worked wonderfully, at first...is it that I cna do more now, so I do and then it seems the pills don't work cause then I am in major pain all over, maybe...either way, it is gettign harder and harder to handle, for ibuprofen don't touch it any more...valium 10 mg does relax enough to sleep although those are not perscribed and cried for in desperation, but nothign touches pain at its core....seeing both docs soon and praying one of you all know this pain and somethign besides burning baths that help ease the pain, yet it also is safe for this liver...thanks------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2011 Report Share Posted January 9, 2011 Hi Tonni 1A is good. I am a 1B. The new meds maybe will work for you, and maybe you can treat again, and 'cure' this time. Talk to your liver doc about it. Click this link, read the article, then look at the right side menu for more info: http://Hepatitis Cnewdrugs.blogspot.com/2010/12/2011-hepatitis-c-and-wall-street-part.html Here is info on Fibromyalgia - click this link: http://health.dir./group/ /links/010___HCV_and_FIBROMYALGIA_001254351819/ Oxycontin are time release, so they dont drug me too badly. They are easier to get prescribed too, because the Codones and Perc's are what junkies use. I have tried everything for pain, and the Oxycontins work the best without blowing my mind. They take a bit to kick in, but then Im good most of the day or night. I get them from my GP doc. Ask your doc about them. If your having inner bone pain, you might want to get that checked out. If its just joint and muscle pain, it may be the Fibromyalgia. If the Lyrica worked for you, then that is what it sounds like to me. Please check out the groups HCV LINKS Library. I have collected tons of info on alternative and conventional protocals for all our use. Click this link, or click LINKS on any group page: http://health.dir./group/ /links/ love don in ks From: Tonni <tbrende7@...>Subject: [ ] new to group Date: Sunday, January 9, 2011, 10:25 PM Diagnosed in 2007 via registered mail after donating blood...worst way to learn you are registered with Center for Disease control for having a disease that you think is like aids...never gonna get to kiss my kids again withotu fear.....never claimed to be smart. Drove around for hours just crying and thinking and found a center that had big words that read HEP C Support...went in and got informed...went hoem and told family, after removing toothbrush and razor and calling doc to schedule everyone for testing....thank God I am only one affected.After 3 attempts to get to the bottom of what all this meant and each attempt costing me more labs and treatment of the coldest kind...I quit trying....I actually got yet another head cold so bad I finally went thru the ER at a local by your income hospital...everythign changed from there..too many appointments if you ask me, bt hey, it had been about 10 plus years, so went with it....Started treatments...got great lowering numbers, but no clear.....really had no issues with treatments, shots or pills (although felt pills were worse, for never felt any change with shots)...then the heart palpitations started, about 14 weeks in....then they got worse and oh my, had to lay down to make them stop, thought heart was gonna jump from chest when I sat up, even staretd skipping beats....17 weeks in, doctor stopped treatment and said liver disease is betetr than heart disease, I agreed...so, no longer doing treatments, almost 2 years now and this bone pain is killing me...I have a son that is 12 that is a quad, I am his arms and legs, yet some days my muscles wrinkle and my bones feel like they ar egonna break any second.....tried tordol, 1000mg ibuprofen works better...I know, I know, but pain gets unbearable and you go for what works...like right now, butt to ankles, but at the center of the bone not all of it and then them hands .....it was thought to be rheumotoid arthritis by GI, but that doc gave me lyrica and said ti was nerve pain....it worked wonderfully, at first...is it that I cna do more now, so I do and then it seems the pills don't work cause then I am in major pain all over, maybe...either way, it is gettign harder and harder to handle, for ibuprofen don't touch it any more...valium 10 mg does relax enough to sleep although those are not perscribed and cried for in desperation, but nothign touches pain at its core....seeing both docs soon and praying one of you all know this pain and somethign besides burning baths that help ease the pain, yet it also is safe for this liver...thanks------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2011 Report Share Posted January 10, 2011 Thank you for all the research...will get to it tonight...snow day for kids the pain is not joint pain, but truly like I can feel the inner lining of where the blood would flow thru the bones..the major foot and hand pain beyond the bone pain, yes, the lyrica has worked for that, but nothing but a burning tub soak has touched the bone pain. I continue to think of retreating, but truly afraid of the heart issue...they say it could have turned into heart disease, but that it could have been treated with medication.....after treatments stopped, I got the H1N1 and I got the palpitations back bad, but I also had a very bad head cold....could the palpitations been from all my head colds and not treatment??????????????????? Just lingering thought. When I heard of a new treatment, I was ready to jump, thne I heard it was just adding a pill to the old and all hope died, as doc said I can not go back on what I already did, so she felt it not for me. Well, I finally saw ENT and they say I have 2 spurs pressing on my septum, one on each side, so surgery is Feb 18th..a bit nervous, for my sister in law in SD just dies the evening of an outpatient ENT surgeyr...but if my time, my time...anyway, I am going to reapproach if this surgery seems to make a difference on my head colds, for I knwo I can't prove which one caused the issue, but if one disappears, maybe I can convince them???? Thanks again for everything Tonni Brende Wife, Mother, Grandma too... "Life is not about waiting for the storms to pass... it's about learning how to dance in the rain." athan, PVL, ACC, Unknown Leukodystrophy, scoliosis, ITB therapy- He can't sit alone, who wants to. He can't stand alone, who needs to. He can't speak our language, but is more understood than most. He can melt anger with a smile. He can quiet a loud room without speaking. And he can teach every single one of us that the little things are what are important. He is our gift and we are forever grateful. http://johnathanourgift.synthasite.com/index.php From: Tonni <tbrende7@...>Subject: [ ] new to group Date: Sunday, January 9, 2011, 10:25 PM Diagnosed in 2007 via registered mail after donating blood...worst way to learn you are registered with Center for Disease control for having a disease that you think is like aids...never gonna get to kiss my kids again withotu fear.....never claimed to be smart. Drove around for hours just crying and thinking and found a center that had big words that read HEP C Support...went in and got informed...went hoem and told family, after removing toothbrush and razor and calling doc to schedule everyone for testing....thank God I am only one affected.After 3 attempts to get to the bottom of what all this meant and each attempt costing me more labs and treatment of the coldest kind...I quit trying....I actually got yet another head cold so bad I finally went thru the ER at a local by your income hospital...everythign changed from there..too many appointments if you ask me, bt hey, it had been about 10 plus years, so went with it....Started treatments...got great lowering numbers, but no clear.....really had no issues with treatments, shots or pills (although felt pills were worse, for never felt any change with shots)...then the heart palpitations started, about 14 weeks in....then they got worse and oh my, had to lay down to make them stop, thought heart was gonna jump from chest when I sat up, even staretd skipping beats....17 weeks in, doctor stopped treatment and said liver disease is betetr than heart disease, I agreed...so, no longer doing treatments, almost 2 years now and this bone pain is killing me...I have a son that is 12 that is a quad, I am his arms and legs, yet some days my muscles wrinkle and my bones feel like they ar egonna break any second.....tried tordol, 1000mg ibuprofen works better...I know, I know, but pain gets unbearable and you go for what works...like right now, butt to ankles, but at the center of the bone not all of it and then them hands .....it was thought to be rheumotoid arthritis by GI, but that doc gave me lyrica and said ti was nerve pain....it worked wonderfully, at first...is it that I cna do more now, so I do and then it seems the pills don't work cause then I am in major pain all over, maybe...either way, it is gettign harder and harder to handle, for ibuprofen don't touch it any more...valium 10 mg does relax enough to sleep although those are not perscribed and cried for in desperation, but nothign touches pain at its core....seeing both docs soon and praying one of you all know this pain and somethign besides burning baths that help ease the pain, yet it also is safe for this liver...thanks------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2011 Report Share Posted January 10, 2011 FYI Don,Oxycontins are worse than percoset they are heroin in a pill that's what junkies abuse. But they start with the perks, sorry. Oxycontins are the most abused pill out their because they are so addicting. Be Careful of Them.thanksSharonFrom: Tonni Brende <tbrende7@...> Sent: Mon, January 10, 2011 9:40:17 AMSubject: Re: [ ] new to group - Tonni Thank you for all the research...will get to it tonight...snow day for kids the pain is not joint pain, but truly like I can feel the inner lining of where the blood would flow thru the bones..the major foot and hand pain beyond the bone pain, yes, the lyrica has worked for that, but nothing but a burning tub soak has touched the bone pain. I continue to think of retreating, but truly afraid of the heart issue...they say it could have turned into heart disease, but that it could have been treated with medication.....after treatments stopped, I got the H1N1 and I got the palpitations back bad, but I also had a very bad head cold....could the palpitations been from all my head colds and not treatment??????????????????? Just lingering thought. When I heard of a new treatment, I was ready to jump, thne I heard it was just adding a pill to the old and all hope died, as doc said I can not go back on what I already did, so she felt it not for me. Well, I finally saw ENT and they say I have 2 spurs pressing on my septum, one on each side, so surgery is Feb 18th..a bit nervous, for my sister in law in SD just dies the evening of an outpatient ENT surgeyr...but if my time, my time...anyway, I am going to reapproach if this surgery seems to make a difference on my head colds, for I knwo I can't prove which one caused the issue, but if one disappears, maybe I can convince them???? Thanks again for everything Tonni Brende Wife, Mother, Grandma too... "Life is not about waiting for the storms to pass... it's about learning how to dance in the rain." athan, PVL, ACC, Unknown Leukodystrophy, scoliosis, ITB therapy- He can't sit alone, who wants to. He can't stand alone, who needs to. He can't speak our language, but is more understood than most. He can melt anger with a smile. He can quiet a loud room without speaking. And he can teach every single one of us that the little things are what are important. He is our gift and we are forever grateful. http://johnathanourgift.synthasite.com/index.php From: Tonni <tbrende7@...>Subject: [ ] new to group Date: Sunday, January 9, 2011, 10:25 PM Diagnosed in 2007 via registered mail after donating blood...worst way to learn you are registered with Center for Disease control for having a disease that you think is like aids...never gonna get to kiss my kids again withotu fear.....never claimed to be smart. Drove around for hours just crying and thinking and found a center that had big words that read HEP C Support...went in and got informed...went hoem and told family, after removing toothbrush and razor and calling doc to schedule everyone for testing....thank God I am only one affected.After 3 attempts to get to the bottom of what all this meant and each attempt costing me more labs and treatment of the coldest kind...I quit trying....I actually got yet another head cold so bad I finally went thru the ER at a local by your income hospital...everythign changed from there..too many appointments if you ask me, bt hey, it had been about 10 plus years, so went with it....Started treatments...got great lowering numbers, but no clear.....really had no issues with treatments, shots or pills (although felt pills were worse, for never felt any change with shots)...then the heart palpitations started, about 14 weeks in....then they got worse and oh my, had to lay down to make them stop, thought heart was gonna jump from chest when I sat up, even staretd skipping beats....17 weeks in, doctor stopped treatment and said liver disease is betetr than heart disease, I agreed...so, no longer doing treatments, almost 2 years now and this bone pain is killing me...I have a son that is 12 that is a quad, I am his arms and legs, yet some days my muscles wrinkle and my bones feel like they ar egonna break any second.....tried tordol, 1000mg ibuprofen works better...I know, I know, but pain gets unbearable and you go for what works...like right now, butt to ankles, but at the center of the bone not all of it and then them hands .....it was thought to be rheumotoid arthritis by GI, but that doc gave me lyrica and said ti was nerve pain....it worked wonderfully, at first...is it that I cna do more now, so I do and then it seems the pills don't work cause then I am in major pain all over, maybe...either way, it is gettign harder and harder to handle, for ibuprofen don't touch it any more...valium 10 mg does relax enough to sleep although those are not perscribed and cried for in desperation, but nothign touches pain at its core....seeing both docs soon and praying one of you all know this pain and somethign besides burning baths that help ease the pain, yet it also is safe for this liver...thanks------------------------------------ Quote Link to comment Share on other sites More sharing options...
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