Guest guest Posted December 31, 2009 Report Share Posted December 31, 2009 Hi Debbie I will try to answer your last question first. In 2010 or early 2011, [Teleprevir and others], protease inhibitors for hepatitis C, will be added to the I/R TX. These are expected to double the SVR rates, and half the TX time. http://health.dir./group/ /links/009B___Teleprevir_001257485307/ http://www.sdbj.com/article.asp?aID=355043502.3079895.1855373.115014.9180008.274 & aID2=142712 & mostread=true Right now they are finishing up clinical trials, and seem to be working well. There are many future irons in the fire, so to speak, but many will take time to develop and be approved. The first we are likely to see are the Protease inhibitors added to the Interferon/Riba TX, as I said late 2010 - early 2011. Then there is talk that the Anti-virals alone may beat HCV. http://www.reuters.com/article/idUS158608+02-Nov-2009+PRN20091102 http://www.medpagetoday.com/MeetingCoverage/AASLD/16818 There is also HCV vaccines in the works, that may be used with or without the I/R TX. http://www.aidsmeds.com/articles/hiv_hcv_vaccine_1667_17601.shtml http://www.medicinenet.com/script/main/art.asp?articlekey=109024 There is talk of combo treatments. Medical Science is working hard to come up with answers. Dont give up hope. I have been trying to keep up with all the reports, and have created a news archieve of sorts for 2009 in the groups links section. Please look through it and see if there is any info useful to you. http://health.dir./group/ /links/NEWS_ARTICLES_001251495695/ Here are other good sources for info. http://www.janis7hepc.com/ http://www.hepatitis-central.com/ About your Cryoglobulin and Kidney issues, I am aware that many [30%+] HCV infected people have these related problems. I have a folder in the links section, but Im afraid I dont have much info as yet. http://health.dir./group/ /links/011___HCV_and_Cryoglobulinemia_001257592597/ The entire links library. [see folders 011 for HCV related conditions.] http://health.dir./group/ /links I shall keep on looking for you. Perhaps I can find some natural alternatives also.My day today is pretty well shot by the doctor appmt I had. Maybe some of the other members here will give you some feedback also. We will all do our best to help you with info and support. Keep thinking positive, we care. love don in ks From: debayers2u <billyb092@...>Subject: [ ] Re: HCV treatment and Kidney Problems Date: Wednesday, December 30, 2009, 5:22 PM Hi thereSorry I may not have been real clear in my last post. It was 4:30AM..I tried the interferon 4 years ago and after a week had the neuropathy in the legs, knees down. I had to stop after the second injection as I lost all feeling in the legs. It got better over time but still nerve damage is painful today.I started daily injections 2 weeks ago. Since I have cryoglobulinwhich is a small vessel vasculitis as a side effect of the Hep C, and ruematoid factor as well as lymphoma cells, I took 4 weeks ofRetuxin to push this side effects down. I started the injections and ribaviren, and had neuropathy after one week. I just started again last night 1/2 dose to see if I can handle it. I wish therewas something less toxic I could take that would not result in theneuropathy and nerve damage so I could get cured. The doctor says I have lost 9 of the 14 channels in my kidneys from the cryoglobulin and I have having chest pains so I assume it is clogging up my heart vessels as well. I have slight possitive on the cancer cells so if not cured, over time, will develop cancer.I am a single mom of two and my daughter has no father so I am all she has. She is an angel and 9 years old. She deserves a fabulous happy child hood and not one with a sick mom...I really need a cure.What is this new drug coming in 2010 I hear about??? Is it less toxic or just the same in pill form?? Thanks, Debbie>> Hi Debbie> Welcome to the group.> I have questions.> > [1] You say a 'neuropathy' resulted from the HCV TX? [Pain in legs.]> What did your doctor say about this side effect?> > [2] What exactly were your kidney problems? Your DX?> Why did your doctor put you on Retuximad?> > [3] You said - 'I had the same reaction after only one week.'> Was this reaction because of the Retuximad, or after you started HCV TX with Retuximad?> Did you take the Retuximad with the Interferon/Riba?> > [4] What does your doctor say about all this - your kidney problems and doing HCV TX?> Has your doctor suggested any alternative kidney meds that work with HCV TX?> > Im sorry your having problems.> Many people have kidney problems from HCV TX, and I would like to know more about it.> I will do research on this topic for both you, me, and the group.> Perhaps others here have experianced simular situations, and will comment.> > love> don in ks> > > From: "debayers2u" <billyb092@...>> > Hi All> > I am so happy to see someone finish the process and be virus > free..I was diagnosed 4 years ago and tried the interferon but> had a neuropathy, nerve pain reaction in my legs and feet. I > had to stop the treatment. My kidneys are in trouble so I > tried Retuximad this time for 4 weeks prior to doing the interferon.> I had the same reaction after only one week. Has any one had a > person with the problem where they tried a different protocol > or allergy med with it?> > >------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2009 Report Share Posted December 31, 2009 DonThe one thing that I have to warn you about with the Trio, is that it is definitely not always in half the time by any means. From day one that I began this Clinical, it was never going to be a 24 week treatment. Always knew it was 48 weeks at the least and maybe even longer. That part was because I was a Non-Responder the first time around, although my viral count at the end of the 12 weeks on the first one, showed that I was almost cleared.My sister-in-law was treatment naive when she began her clinical; but, they decided she had to do the whole 48 very soon into it because it affected her platelets so badly that they had to reduce her dosage several times.Debbie, I'm not sure that your doctors would be all that pleased to put you on the new Trio. It's still the same dosage of Interferon and Ribivirin and from what I could understand, you have an allergy to the Interferon. I'm really hoping that your doctors will finally find a good way around the neuropathy problems.Just today I was picking my brother up from the doctors because he can barely walk. After just about a year of trying to find out why he has so much pain in his legs, she finally thinks it may have nothing whatsoever to do with his Hep C; but, rather, his diabetes. So she's going to send him to a Neuropath!! I have the Fibro that I've suffered with since my first treatment, although I suspect the Hep C treatment had nothing to do with it. For me, it's the most debilitating part of my whole health issue.Jump right in anytime, Debbie - let us be your support to the best of our ability. Even if it's to do with how unfair this is for your daughter!! But, always try to remember, it's better that she have a mother, even ill - than not to have you there to turn to as she plods her way through the teens. I have 2 great neices and a great nephew that lost their sole parent 7 years ago to a sudden heart attack. It's been particularily awful for the youngest, who was only 10 just about 11 at the time.Gloria Hi Debbie I will try to answer your last question first. In 2010 or early 2011, [Teleprevir and others], protease inhibitors for hepatitis C, will be added to the I/R TX. These are expected to double the SVR rates, and half the TX time. http://health. dir.groups. / group/HepCWebWar riors/links/ 009B___Teleprevi r_001257485307/ http://www.sdbj. com/article. asp?aID=35504350 2.3079895. 1855373.115014. 9180008.274 & aID2=142712 & mostread=true Right now they are finishing up clinical trials, and seem to be working well. There are many future irons in the fire, so to speak, but many will take time to develop and be approved. The first we are likely to see are the Protease inhibitors added to the Interferon/Riba TX, as I said late 2010 - early 2011. Then there is talk that the Anti-virals alone may beat HCV. http://www.reuters. com/article/ idUS158608+ 02-Nov-2009+ PRN20091102 http://www.medpaget oday.com/ MeetingCoverage/ AASLD/16818 There is also HCV vaccines in the works, that may be used with or without the I/R TX. http://www.aidsmeds .com/articles/ hiv_hcv_vaccine_ 1667_17601. shtml http://www.medicine net.com/script/ main/art. asp?articlekey= 109024 There is talk of combo treatments. Medical Science is working hard to come up with answers. Dont give up hope. I have been trying to keep up with all the reports, and have created a news archieve of sorts for 2009 in the groups links section. Please look through it and see if there is any info useful to you. http://health. dir.groups. / group/HepCWebWar riors/links/ NEWS_ARTICLES_ 001251495695/ Here are other good sources for info. http://www.janis7he pc.com/ http://www.hepatiti s-central. com/ About your Cryoglobulin and Kidney issues, I am aware that many [30%+] HCV infected people have these related problems. I have a folder in the links section, but Im afraid I dont have much info as yet. http://health. dir.groups. / group/HepCWebWar riors/links/ 011___HCV_ and_Cryoglobulin emia_00125759259 7/ The entire links library. [see folders 011 for HCV related conditions.] http://health. dir.groups. / group/HepCWebWar riors/links I shall keep on looking for you. Perhaps I can find some natural alternatives also.My day today is pretty well shot by the doctor appmt I had. Maybe some of the other members here will give you some feedback also. We will all do our best to help you with info and support. Keep thinking positive, we care. love don in ks From: debayers2u <billyb092aol (DOT) com>Subject: [ ] Re: HCV treatment and Kidney Problems Date: Wednesday, December 30, 2009, 5:22 PM Hi thereSorry I may not have been real clear in my last post. It was 4:30AM..I tried the interferon 4 years ago and after a week had the neuropathy in the legs, knees down. I had to stop after the second injection as I lost all feeling in the legs. It got better over time but still nerve damage is painful today.I started daily injections 2 weeks ago. Since I have cryoglobulinwhich is a small vessel vasculitis as a side effect of the Hep C, and ruematoid factor as well as lymphoma cells, I took 4 weeks ofRetuxin to push this side effects down. I started the injections and ribaviren, and had neuropathy after one week. I just started again last night 1/2 dose to see if I can handle it. I wish therewas something less toxic I could take that would not result in theneuropathy and nerve damage so I could get cured. The doctor says I have lost 9 of the 14 channels in my kidneys from the cryoglobulin and I have having chest pains so I assume it is clogging up my heart vessels as well. I have slight possitive on the cancer cells so if not cured, over time, will develop cancer.I am a single mom of two and my daughter has no father so I am all she has. She is an angel and 9 years old. She deserves a fabulous happy child hood and not one with a sick mom...I really need a cure.What is this new drug coming in 2010 I hear about??? Is it less toxic or just the same in pill form?? Thanks, Debbie>> Hi Debbie> Welcome to the group.> I have questions.> > [1] You say a 'neuropathy' resulted from the HCV TX? [Pain in legs.]> What did your doctor say about this side effect?> > [2] What exactly were your kidney problems? Your DX?> Why did your doctor put you on Retuximad?> > [3] You said - 'I had the same reaction after only one week.'> Was this reaction because of the Retuximad, or after you started HCV TX with Retuximad?> Did you take the Retuximad with the Interferon/Riba?> > [4] What does your doctor say about all this - your kidney problems and doing HCV TX?> Has your doctor suggested any alternative kidney meds that work with HCV TX?> > Im sorry your having problems.> Many people have kidney problems from HCV TX, and I would like to know more about it.> I will do research on this topic for both you, me, and the group.> Perhaps others here have experianced simular situations, and will comment.> > love> don in ks> > > From: "debayers2u" <billyb092@.. .>> > Hi All> > I am so happy to see someone finish the process and be virus > free..I was diagnosed 4 years ago and tried the interferon but> had a neuropathy, nerve pain reaction in my legs and feet. I > had to stop the treatment. My kidneys are in trouble so I > tried Retuximad this time for 4 weeks prior to doing the interferon.> I had the same reaction after only one week. Has any one had a > person with the problem where they tried a different protocol > or allergy med with it?> > >------------ --------- --------- ------ Quote Link to comment Share on other sites More sharing options...
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