Re: treatment info i found

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Hep-C Treatment - my personal experience NoteI am NOT a medical doctor, and anything written in this page is based on my own experience and my own understanding of various information I have read or heard. Therefore you should not consider this page as medical advice. The beginningI was diagnosed with active Hepatitis C at the age of 29, after my routine yearly blood test results came back with elevated liver enzymes. After the standard blood tests for finding the Hep-C virus in my blood, a liver biopsy, and consultations with various doctors, I was suggested treatment with a combination of ribavirin and peg-interferon. This was the standard therapy at the time (and still is to the best of my knowledge). This page is not intended to discuss the pros and cons of accepting the treatment, but just to inform people of what might happen during the treatment. Before the treatmentBefore starting the treatment I was a very

active and athletic person. I used to swim 3 or 4 times a week, play basketball at least once a week, and go scuba diving whenever possible. I was almost never sick, not even when everyone around me got colds. Personality wise, I was very positive and happy most of the time. Luckily for me, I was doing my Ph.D. in physics at the time, so I could determine when I come and go, and how much work I have to do. What the doctors saidThe doctors were in the opinion that, since I am young and healthy, I will hardly feel any side effects during treatment. I was told this by more than one doctor. The only thing that I had to take into consideration was a flu like feeling in the first few weeks, which can be easily dealt with using any pain relieving medication. For fairness I should also say that one of the doctors told me, that during the treatment I will not be able to swim as much as I was used to, but he added that this should not be a consideration. The rest of

the side effects weren't explained to me in anything more than a slight mention, the kind you get for most medication. Treatment startI started the treatment with a daily dosage of 1200 mg of ribavirin and a weekly dosage of 180 mg of peg-interferon. The flu like symptoms did appear, and indeed with one paracetamol it passed. The first week I went on as usual, and the next week my world fell apart. It started with the weekly basketball game. I just couldn't run and jump like I used to, and after the game was over I was extremely tired, but not in the pleasant way I usually get after a good workout. The next time I went to the swimming pool I had to stop after half of what I had planned. I just couldn't go on. I also lost my appetite completely and quite suddenly in that week. The real troubleAt this point I understood that I wasn't about to escape the side effects of the treatment. But things got worse. I started having trouble sleeping, and

was tired all the time. I had a constant nausea feeling and could hardly force myself to eat even small meals. If I did force myself to eat more than a few bites, I would fall asleep within half an hour, almost fainting. Food didn't taste the same and I had a sore tongue and thrash on the corner of my mouth.At some point I started itching all over and had a rash. I started taking antihistamines, because I thought it must have been an allergy, but it didn't go away (loratadine did make me feel a whole lot better, though. I don't know why). The skin doctor told me that both my itching and my tongue were fungy, and I got treatment for that. Since then, both problems were under control, but stayed with me until the end of the treatment.I did find something that helps avoid insomnia and increases the appetite. This is cannabis, but I won't admit to using it, since it is illegal. I also found that afternoon naps made it harder for me to sleep at night, so I avoided

them.Even with these partial remedies I couldn't play basketball at all, and could barely swim. I could only work on my thesis a few hours a day. My blood counts were down - low hemoglobin, low red blood cells, low white blood cells.My hair changed - it became thin and straight (all over my body), easy to break, and fell easily.At this point I was ready to quit, and I guess I was even depressed and irritable. It didn't help that both the doctors and the support group told me that I was young and that I should be able to take the side effects easily. It also didn't help that I didn't know the side effects were not just my problem, but that almost everyone taking the treatment has them. Information to the rescueI was groping for information about my side effects and how to control them, when I came across a document called "Supporting Hepatitis C Patients Through Peginterferon/Ribavirin Treatment". This document is intended for doctors treating

Hep-C patients, but I read it anyway. I found out some things which I found quite astonishing: Almost all patients suffer from the flu like symptoms, but they pass within 4-5 weeks and are easily manageable. The percentage of people with clinical depression is about 30%, but almost all patients suffer some sort of fatigue, anxiety/irritability, insomnia, depression, dizziness, and impaired concentration. These symptoms appear in about 4-5 weeks, and increase in intensity as time goes on. Anemia is a side effect for all patients, with varying degrees of severity. This leads to weakness, but can also contribute to all the symptoms mentioned above. A low white blood cells count is also apparent in virtually all patients. This leads to high susceptibility to fungal and bacterial infection. Patients are, however, pretty immune to viral infection because of high concentration of interferon in the blood. Hair change is apparent in most

patients and lingers for a few months after treatment ends.All these side effects have medical treatment, which is mentioned in the document. Having learned this didn't make me feel any better physically, but I think I would have been better prepared mentally had I known this in advance. This is really why I am writing this, in the vein hope that someone might read it BEFORE the symptoms appear, or maybe even before starting the treatment. ConclusionTaking the ribavirin/peg-interferon treatment changed my life. In the year I took the medication I was a broken, unhappy, unhealthy man. However, the treatment seams to have worked. Hep-C RNA is no longer detectable in my blood, and my liver enzimes are back to normal. Yet I made the decision to start the treatment without being properly informed as to the consequences of my decision. I don't know if my decision would have been any different had I known this information before-hand, but I think every

person has the right to know what he or she is getting into, and I know that knowing this information helped me deal with the side effects mentally.So here are some advice I have for people taking the treatment: Read all 3 parts of the document "Supporting Hepatitis C Patients Through Peginterferon/Ribavirin Treatment" - Report1.pdf, Report2.pdf, Report3.pdf. Understand that you WILL ALMOST CERTAINLY get side effects if you start the treatment. How much they will affect your life depends more on your lifestyle than on your age. If you are an athlete then you will have to quit that while in treatment. If you are a construction worker I can only guess that you won't be able to continue working. If you work in an office you'll probably be able

to go on almost as usual, but take into account that you might need to cut down on the hours you spend at work. Even housekeeping might become problematic while in treatment. While in treatment, avoid large meals. Eat small meals, and as many as you can. Drink as much as you can. A little bit of exercise is recommended, but don't overdo it - that will make you feel worse. Protect your health better than usual: Avoid sick people, avoid whatever makes you allergic, maintain oral hygiene, don't go to the swimming pool (it's full of bacteria and fungus even when there's chlorine in the water), etc. Do things you like to do, and things that make you happy. Believe your own feelings. The treatment is difficult, and don't let others tell you different. If you start the treatment or are in the middle of the treatment then good luck and I hope I helped, Yishai ShimoniJina

<dapples57@...> wrote: They need too legalize Marijuana, it's been around for far too long to not be. It's better than having a bottle of whiskey and doesn't make ya violent either, Cop probably took their weed home and smoked it. : ) Jina We are all wanderers on this earth. Our hearts are full of wonder, and our souls are deep with

dreams.--Gypsy Proverb Tim Parsons knoxville,tn 37931 865-588-2465 x107 work www.knoxville1.com

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Dear Tim,I read your recounting of treatment with great interest and had to respond. Other than the fact that when I went on treatment I was a 50-something y-o female, the side effects, reactions and everything else you mention mirror my own experience with treatment to a tee! Except for one thing...after 18 months of combo therapy just like yours, 15 of which I was clear of the virus, I relapsed immediately upon stopping. I'm still glad I did it, as I gave my liver a break from the virus for 18 months. I hope I can stay healthy until VX 950 is on the market and I can try that. My docs tell me it has great potential (shorter duration of treatment, fewer side effects). I'm very happy for you that you stayed clear, and wish you all the best. I also agree that a well-informed patient does much better than one who has to find out as he/she goes along.Love and healing to all,gavrielaHillbilly Tim <knoxweb1@...> wrote: Hep-C Treatment - my personal experience NoteI am NOT a medical doctor, and anything written in this page is based on my own experience and my own understanding of various information I have read or heard. Therefore you should not consider this page as medical advice. The beginningI was diagnosed with active Hepatitis C at the age of 29, after my routine yearly blood test results came back with elevated liver enzymes. After the standard blood tests for finding the Hep-C virus in my blood, a liver biopsy, and consultations with

various doctors, I was suggested treatment with a combination of ribavirin and peg-interferon. This was the standard therapy at the time (and still is to the best of my knowledge). This page is not intended to discuss the pros and cons of accepting the treatment, but just to inform people of what might happen during the treatment. Before the treatmentBefore starting the treatment I was a very active and athletic person. I used to swim 3 or 4 times a week, play basketball at least once a week, and go scuba diving whenever possible. I was almost never sick, not even when everyone around me got colds. Personality wise, I was very positive and happy most of the time. Luckily for me, I was doing my Ph.D. in physics at the time, so I could determine when I come and go, and how much work I have to do. What the doctors saidThe doctors were in the opinion that, since I am young and healthy, I will hardly feel any side effects during treatment. I was

told this by more than one doctor. The only thing that I had to take into consideration was a flu like feeling in the first few weeks, which can be easily dealt with using any pain relieving medication. For fairness I should also say that one of the doctors told me, that during the treatment I will not be able to swim as much as I was used to, but he added that this should not be a consideration. The rest of the side effects weren't explained to me in anything more than a slight mention, the kind you get for most medication. Treatment startI started the treatment with a daily dosage of 1200 mg of ribavirin and a weekly dosage of 180 mg of peg-interferon. The flu like symptoms did appear, and indeed with one paracetamol it passed. The first week I went on as usual, and the next week my world fell apart. It started with the weekly basketball game. I just couldn't run and jump like I used to, and after the game was over I was extremely tired, but not in the

pleasant way I usually get after a good workout. The next time I went to the swimming pool I had to stop after half of what I had planned. I just couldn't go on. I also lost my appetite completely and quite suddenly in that week. The real troubleAt this point I understood that I wasn't about to escape the side effects of the treatment. But things got worse. I started having trouble sleeping, and was tired all the time. I had a constant nausea feeling and could hardly force myself to eat even small meals. If I did force myself to eat more than a few bites, I would fall asleep within half an hour, almost fainting. Food didn't taste the same and I had a sore tongue and thrash on the corner of my mouth.At some point I started itching all over and had a rash. I started taking antihistamines, because I thought it must have been an allergy, but it didn't go away (loratadine did make me feel a whole lot better, though. I don't know why). The skin doctor told me

that both my itching and my tongue were fungy, and I got treatment for that. Since then, both problems were under control, but stayed with me until the end of the treatment.I did find something that helps avoid insomnia and increases the appetite. This is cannabis, but I won't admit to using it, since it is illegal. I also found that afternoon naps made it harder for me to sleep at night, so I avoided them.Even with these partial remedies I couldn't play basketball at all, and could barely swim. I could only work on my thesis a few hours a day. My blood counts were down - low hemoglobin, low red blood cells, low white blood cells.My hair changed - it became thin and straight (all over my body), easy to break, and fell easily.At this point I was ready to quit, and I guess I was even depressed and irritable. It didn't help that both the doctors and the support group told me that I was young and that I should be able to take the side effects easily. It also

didn't help that I didn't know the side effects were not just my problem, but that almost everyone taking the treatment has them. Information to the rescueI was groping for information about my side effects and how to control them, when I came across a document called "Supporting Hepatitis C Patients Through Peginterferon/Ribavirin Treatment". This document is intended for doctors treating Hep-C patients, but I read it anyway. I found out some things which I found quite astonishing: Almost all patients suffer from the flu like symptoms, but they pass within 4-5 weeks and are easily manageable. The percentage of people with clinical depression is about 30%, but almost all patients suffer some sort of fatigue, anxiety/irritability, insomnia, depression, dizziness, and impaired concentration. These symptoms appear in about 4-5 weeks, and increase in intensity as time goes on. Anemia is a side effect for all

patients, with varying degrees of severity. This leads to weakness, but can also contribute to all the symptoms mentioned above. A low white blood cells count is also apparent in virtually all patients. This leads to high susceptibility to fungal and bacterial infection. Patients are, however, pretty immune to viral infection because of high concentration of interferon in the blood. Hair change is apparent in most patients and lingers for a few months after treatment ends.All these side effects have medical treatment, which is mentioned in the document. Having learned this didn't make me feel any better physically, but I think I would have been better prepared mentally had I known this in advance. This is really why I am writing this, in the vein hope that someone might read it BEFORE the symptoms appear, or maybe even before starting the treatment. ConclusionTaking the ribavirin/peg-interferon treatment changed my

life. In the year I took the medication I was a broken, unhappy, unhealthy man. However, the treatment seams to have worked. Hep-C RNA is no longer detectable in my blood, and my liver enzimes are back to normal. Yet I made the decision to start the treatment without being properly informed as to the consequences of my decision. I don't know if my decision would have been any different had I known this information before-hand, but I think every person has the right to know what he or she is getting into, and I know that knowing this information helped me deal with the side effects mentally.So here are some advice I have for people taking the treatment: Read all 3 parts of the document "Supporting Hepatitis C Patients Through Peginterferon/Ribavirin Treatment" - Report1.pdf, Report2.pdf, Report3.pdf. Understand that you WILL ALMOST CERTAINLY get side effects if you start the treatment. How much they will affect your life depends more on your lifestyle than on your age. If you are an athlete then you will have to quit that while in treatment. If you are a construction worker I can only guess that you won't be able to continue working. If you work in an office you'll probably be able to go on almost as usual, but take into account that you might need to cut down on the hours you spend at work. Even housekeeping might become problematic while in treatment. While in treatment, avoid large meals. Eat small meals, and as many as you can. Drink as much as you can. A little bit of exercise is recommended, but don't overdo it - that will make you feel worse. Protect your health better than usual: Avoid sick people, avoid whatever makes you

allergic, maintain oral hygiene, don't go to the swimming pool (it's full of bacteria and fungus even when there's chlorine in the water), etc. Do things you like to do, and things that make you happy. Believe your own feelings. The treatment is difficult, and don't let others tell you different. If you start the treatment or are in the middle of the treatment then good luck and I hope I helped, Yishai ShimoniJina <dapples57sbcglobal (DOT) net> wrote: They need too legalize Marijuana, it's been around for far too long to not be. It's better than having a bottle of whiskey and doesn't make ya violent either, Cop probably took their weed home and smoked it. : ) Jina We are all wanderers on this earth. Our hearts are full of wonder, and our souls are deep with dreams.--Gypsy Proverb Tim Parsons knoxville,tn 37931 865-588-2465 x107 work www.knoxville1.com Get your email and more, right on the new .com Gavriela de Boerde Boer Design505 897 3214410 446 6333

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Ditto Tim I wish doctors would be more truthful with their patients going thru treatment and i am a nurse not a doctor but after going thru it twice and failing twice i wish like i said i knew more the first time then maybe i could have more prepared believe i was the second...May i never have to see another can of Boost again lol

Terri