Guest guest Posted August 8, 2000 Report Share Posted August 8, 2000 Kris hi where do you live for school to have already started? i live in ga and melissa starts aug 21 my daughter is also 13 years old she will be going in to the 8th grade her hands are effected and i know this will be a problem this year her walking is better but her left leg seems to curve out but so far shes doing better no crutches or wheelchair lately she does let me know when she is hurting then says she will see how shes doing in a hour then take something mornings will be the trick Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2000 Report Share Posted August 9, 2000 Hi Robbin, We live in North Carolina.. Used to live in Lawrenceville Georgia have been here now for almost 7 years. One thing our tecahers here have said they can do for Ashton (who is in the 8th grade also) is to give her a copy of their notes so that it keeps her writing to a minimum & hopefully the pain too! Whre is the web site you were talking about about pain & weather? I would be interested because I have read some articles that say that weather & arthritis pain are not related but I know from the way Ashton responds it has to be! We soent part of teh summer in the west(very dry ) soon after we got back home to all the humidity & rain her pain worsened. So what does that say? Laet me know if you get a web address for that site... Thanks Kris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2000 Report Share Posted August 9, 2000 Hey Kris. We live in Lawrenceville Ga. If you haven't been here in seven yrs boy you would be shocked!! Anyways just wanted you guys to know we are leaving tonight for the JRA conference in Orlando. Wish us luck. Hopefully I will have some pictures to send you. Talk to you soon. Angel Beers. (McKenzie 5yrs) Re: Hi to all Hi Robbin, We live in North Carolina.. Used to live in Lawrenceville Georgia have been here now for almost 7 years. One thing our tecahers here have said they can do for Ashton (who is in the 8th grade also) is to give her a copy of their notes so that it keeps her writing to a minimum & hopefully the pain too! Whre is the web site you were talking about about pain & weather? I would be interested because I have read some articles that say that weather & arthritis pain are not related but I know from the way Ashton responds it has to be! We soent part of teh summer in the west(very dry ) soon after we got back home to all the humidity & rain her pain worsened. So what does that say? Laet me know if you get a web address for that site... Thanks Kris For links to websites with JRA info visit: http://www.geocities.com/Heartland/Village/8414/Links.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2000 Report Share Posted August 9, 2000 Kris your not far from us where is your doctor? i sent out a email with sites on it i went by melissas school today and they have been fixing up there they have portables there now and i have to go see whats going to be out there so i know to let them change melissas schedule if they have stuck her out in those lololol how tall is your daughter? and what does she like doing? also since her and melissa are in the 8th maybe they can chat online also lets keep in touch Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2000 Report Share Posted August 9, 2000 Kris forgot to ask this i have a sister up in asheville N C Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2000 Report Share Posted August 10, 2000 Robbin, Hi, We live just North of Charlotte,North Carolina. Our ped. Rheumatologist is at Duke University Medical Center. Which for us is about a 21/2 hour drive each way,as there are no ped rheumy's in Charlotte. My daughter is about 5'1 but only weighs 70 pounds. She will be 14 this year and is in the 8th grade. I'm sure she would like to chat with your daughter. She has met two other girls from the JRA list that she also chats with. It's nice for them to not only have a friend but a friend that understands the problems that they can encounter at school ect.... It seems that poeple have a hard time understanding JRA & the fact that some days our children appear normal & others they may not or that while there are days that everything appears fine,things may not be as they seem. Our children seems to be lost out there ...with the bulk of public awareness being placed on other more " popular " (for lack of a better word) diseases. It can be sooo frustrating. ...Sorry about that every once in awhile I just feel I gotta get up on my soapbox lol. Look foward to hearing from you Kristi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2000 Report Share Posted August 10, 2000 Hi Kris lolol soapbox sounds good lolololol your right about what you said to our rhuemy dr is at egelston childrens hospital what are the ages of your daughters friends online ? Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2000 Report Share Posted August 11, 2000 Robbin, Ashton has a friend on line that is 13 & one that is 14 both have JRA.. they don't get to write as often as they would like bacause of school ect. But itis nice to have someone else that you " know " with JRA. I am very familiar with Egleston. When we lived in Georgia my daughter went there for her cardiology appts. Hope all is well with you...... Kris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2000 Report Share Posted August 11, 2000 Kris melissa goes to egleston for therapy kendra is her therapist there the kids need to get instant messanger lololol cheap to no LD calls if your daughter wants to email or talk to melissa let me know i will send in private her email address Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2000 Report Share Posted August 20, 2000 Hi Robbin, Here in Maui my daughter started school on July 27th this year. That's since they switched over to a year-round schedule. Still go for the same total number of days, though. Josh will be starting school on the 23rd. He registered and got his class list last week. Parent orientation is tomorrow night. His first year at intermediate, middle school. This is exciting! So far, the arthritis is cooperating, too. It will be a little stressfull for him, I'm sure, so I'm just hoping that doesn't stir anything up. He's starting to get a little nervous but that's just the way he is in a new situation. Take care, Georgina Robbin40@... wrote: > > Kris > hi where do you live for school to have already started? > i live in ga and melissa starts aug 21 > my daughter is also 13 years old she will be going in to the 8th grade > her hands are effected and i know this will be a problem this year > her walking is better but her left leg seems to curve out but so far shes > doing better > no crutches or wheelchair lately > she does let me know when she is hurting then says she will see how shes > doing in a hour then take something > mornings will be the trick > Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2000 Report Share Posted August 20, 2000 Hi Kris, Thanks for sharing the news. I, too, hope that this is the worst of it. Maybe it will be a really good year for Ashton Aloha, Georgina dkakheath@... wrote: > > Hi.. Sorry I haven't been on this summer but I have tried to read posts as > much as possible. It has been a hectic summer. I see teher are alot of new > names since I last had a chance to write. My daughter is 13 & has > Polyarticular JRA .. she was diagnosed 1 1/2 years ago. She is on > Relefan(antiinflammatory) Methotrexate subQ injectionand Folic Acid. Well > Ashton is back at school,school seems to start earlier every year. We had a > pretty good summer JRA wise ..Ashton has done very well. Now that school has > started & her habits as far as walking & sitting have changed she has started > to experience alittle more pain,but we are praying that this is the worst of > it. The school has been great this year so far about accomadating Ashton's > needs. Earlier communication this year I believe made the difference . I wish > every one well & look foward to hearing from all & I'm sure you'll hear from > me!!! lol > Kris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2001 Report Share Posted August 29, 2001 Hi Cher, welcome to Gi-world, you will find friends here and also a lot of knowledge. 2b is easier to treat so you lucked out there . Doc is great too..................Take Care, Connie Welcome Cher __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2001 Report Share Posted August 29, 2001 Hi Cher, welcome to Gi-world, you will find friends here and also a lot of knowledge. 2b is easier to treat so you lucked out there . Doc is great too..................Take Care, Connie Welcome Cher __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2001 Report Share Posted August 29, 2001 Hi Cher, Welcome to the group, you have definitely come to a great place. Not just for the info, but for the support you will need. The only blood test results you mentioned were your ALT and AST. Were your other tests, like bilirubin, albumin, and platelets normal? (Get your own copies of all test results!) I personally find biopsy reports very confusing, so don't feel bad! One problem is that there are so many different scales, or ways of scoring the biopsy specimen, and of course some of it is individual interpretation, too. I think I have some info or links on biopsy reports I can post, but it may just muddy the water even more! However, it's pretty safe to say that when you see the terms " bridging fibrosis " and cirrhosis that things are not good. That is NOT to say that things are hopeless either! Things definitely are NOT hopeless, and treatment can benefit you greatly. I question your doctor recommending 'rebetron' to you though. That is the 'old' combo. What you need to get on is the new pegylated interferon, with ribavirin. The one thing that you have going for you is that you are genotype 2b. Genotype 2s are the easiest to treat of all genotypes. I would get as aggressive as possible, and if your GI isn't going along with this than I'd look for someone else. Having cirrhosis makes things harder, but NOT impossible! The new pegylated interferons do work better in people with cirrhosis than the old Rebetron combo. And yes, there has been plenty of evidence that you can reverse fibrosis, and it's the fibrosis that causes the cirrhosis. The liver is an amazing organ, and it WILL heal itself if given half a chance. One thing I would definitely recommend is to NOT quit treatment at 24 weeks, which is commonly done with your genotype, but to stay on for a full year. I know that doesn't sound great, but it greatly increases your chance of getting rid of some of that fibrosis in your liver, and having a viral response too. Another option to consider is adding the antiviral medication Amantadine, taking it along with the Peg-Intron and ribavirin. There have been some studies that show adding it to the combination of interferon and ribavirin can increase your chance of a sustained response. It's a pretty inexpensive medication, and worth a try, IF you can get your doctor to write the prescription. I would try and get started on treatment as soon as possible. As for side effects - they are so different for everyone, it's impossible to say how you will be affected. However, most studies show that people find the pegyalted interferon easier to deal with than the old 3 times a week interferon. This is also an area where having a really good, experienced doctor can make a difference. He needs to know how to best treat any side effects you might have. And I'd start with a good antidepressant - NOW! Even without treatment what you've been going through is depressing enough! Another thing you really need to do is stop eating anything that is iron-fortified. Read the labels. Cereals are some of the worst offenders, but usually in the 'organic' area you can find some. Definitely no vitamins with iron! How much of the vitamin E are you taking? I would take at least 800IU, maybe even 1200IU. All the stuff you said you are taking sounds pretty good. You might add a calcium supplement, taken with meals. Besides the fact that you can probably use the extra calcium, it will also inhibit iron absorption. I really recommend a GOOD brand of milk thistle, one that has been tested or studied, like Maximum Milk Thistle or Thistlyn. What ever you do, try to think positive! There are people who have cirrhosis who do clear this virus, and go on to lead normal, healthy lives! Don't listen to the negative talk, it will only bring you down. Attitude DOES make a difference! Ok, I'm going to go see what info I have in my files that might be of some help to you. Take care, and remember that we are here for you. Claudine __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2001 Report Share Posted August 29, 2001 Hi Cher, Welcome to the group, you have definitely come to a great place. Not just for the info, but for the support you will need. The only blood test results you mentioned were your ALT and AST. Were your other tests, like bilirubin, albumin, and platelets normal? (Get your own copies of all test results!) I personally find biopsy reports very confusing, so don't feel bad! One problem is that there are so many different scales, or ways of scoring the biopsy specimen, and of course some of it is individual interpretation, too. I think I have some info or links on biopsy reports I can post, but it may just muddy the water even more! However, it's pretty safe to say that when you see the terms " bridging fibrosis " and cirrhosis that things are not good. That is NOT to say that things are hopeless either! Things definitely are NOT hopeless, and treatment can benefit you greatly. I question your doctor recommending 'rebetron' to you though. That is the 'old' combo. What you need to get on is the new pegylated interferon, with ribavirin. The one thing that you have going for you is that you are genotype 2b. Genotype 2s are the easiest to treat of all genotypes. I would get as aggressive as possible, and if your GI isn't going along with this than I'd look for someone else. Having cirrhosis makes things harder, but NOT impossible! The new pegylated interferons do work better in people with cirrhosis than the old Rebetron combo. And yes, there has been plenty of evidence that you can reverse fibrosis, and it's the fibrosis that causes the cirrhosis. The liver is an amazing organ, and it WILL heal itself if given half a chance. One thing I would definitely recommend is to NOT quit treatment at 24 weeks, which is commonly done with your genotype, but to stay on for a full year. I know that doesn't sound great, but it greatly increases your chance of getting rid of some of that fibrosis in your liver, and having a viral response too. Another option to consider is adding the antiviral medication Amantadine, taking it along with the Peg-Intron and ribavirin. There have been some studies that show adding it to the combination of interferon and ribavirin can increase your chance of a sustained response. It's a pretty inexpensive medication, and worth a try, IF you can get your doctor to write the prescription. I would try and get started on treatment as soon as possible. As for side effects - they are so different for everyone, it's impossible to say how you will be affected. However, most studies show that people find the pegyalted interferon easier to deal with than the old 3 times a week interferon. This is also an area where having a really good, experienced doctor can make a difference. He needs to know how to best treat any side effects you might have. And I'd start with a good antidepressant - NOW! Even without treatment what you've been going through is depressing enough! Another thing you really need to do is stop eating anything that is iron-fortified. Read the labels. Cereals are some of the worst offenders, but usually in the 'organic' area you can find some. Definitely no vitamins with iron! How much of the vitamin E are you taking? I would take at least 800IU, maybe even 1200IU. All the stuff you said you are taking sounds pretty good. You might add a calcium supplement, taken with meals. Besides the fact that you can probably use the extra calcium, it will also inhibit iron absorption. I really recommend a GOOD brand of milk thistle, one that has been tested or studied, like Maximum Milk Thistle or Thistlyn. What ever you do, try to think positive! There are people who have cirrhosis who do clear this virus, and go on to lead normal, healthy lives! Don't listen to the negative talk, it will only bring you down. Attitude DOES make a difference! Ok, I'm going to go see what info I have in my files that might be of some help to you. Take care, and remember that we are here for you. Claudine __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2001 Report Share Posted August 29, 2001 Hi Cher, Welcome to the group, you have definitely come to a great place. Not just for the info, but for the support you will need. The only blood test results you mentioned were your ALT and AST. Were your other tests, like bilirubin, albumin, and platelets normal? (Get your own copies of all test results!) I personally find biopsy reports very confusing, so don't feel bad! One problem is that there are so many different scales, or ways of scoring the biopsy specimen, and of course some of it is individual interpretation, too. I think I have some info or links on biopsy reports I can post, but it may just muddy the water even more! However, it's pretty safe to say that when you see the terms " bridging fibrosis " and cirrhosis that things are not good. That is NOT to say that things are hopeless either! Things definitely are NOT hopeless, and treatment can benefit you greatly. I question your doctor recommending 'rebetron' to you though. That is the 'old' combo. What you need to get on is the new pegylated interferon, with ribavirin. The one thing that you have going for you is that you are genotype 2b. Genotype 2s are the easiest to treat of all genotypes. I would get as aggressive as possible, and if your GI isn't going along with this than I'd look for someone else. Having cirrhosis makes things harder, but NOT impossible! The new pegylated interferons do work better in people with cirrhosis than the old Rebetron combo. And yes, there has been plenty of evidence that you can reverse fibrosis, and it's the fibrosis that causes the cirrhosis. The liver is an amazing organ, and it WILL heal itself if given half a chance. One thing I would definitely recommend is to NOT quit treatment at 24 weeks, which is commonly done with your genotype, but to stay on for a full year. I know that doesn't sound great, but it greatly increases your chance of getting rid of some of that fibrosis in your liver, and having a viral response too. Another option to consider is adding the antiviral medication Amantadine, taking it along with the Peg-Intron and ribavirin. There have been some studies that show adding it to the combination of interferon and ribavirin can increase your chance of a sustained response. It's a pretty inexpensive medication, and worth a try, IF you can get your doctor to write the prescription. I would try and get started on treatment as soon as possible. As for side effects - they are so different for everyone, it's impossible to say how you will be affected. However, most studies show that people find the pegyalted interferon easier to deal with than the old 3 times a week interferon. This is also an area where having a really good, experienced doctor can make a difference. He needs to know how to best treat any side effects you might have. And I'd start with a good antidepressant - NOW! Even without treatment what you've been going through is depressing enough! Another thing you really need to do is stop eating anything that is iron-fortified. Read the labels. Cereals are some of the worst offenders, but usually in the 'organic' area you can find some. Definitely no vitamins with iron! How much of the vitamin E are you taking? I would take at least 800IU, maybe even 1200IU. All the stuff you said you are taking sounds pretty good. You might add a calcium supplement, taken with meals. Besides the fact that you can probably use the extra calcium, it will also inhibit iron absorption. I really recommend a GOOD brand of milk thistle, one that has been tested or studied, like Maximum Milk Thistle or Thistlyn. What ever you do, try to think positive! There are people who have cirrhosis who do clear this virus, and go on to lead normal, healthy lives! Don't listen to the negative talk, it will only bring you down. Attitude DOES make a difference! Ok, I'm going to go see what info I have in my files that might be of some help to you. Take care, and remember that we are here for you. Claudine __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2001 Report Share Posted August 29, 2001 Hi Cher, Welcome to the group, you have definitely come to a great place. Not just for the info, but for the support you will need. The only blood test results you mentioned were your ALT and AST. Were your other tests, like bilirubin, albumin, and platelets normal? (Get your own copies of all test results!) I personally find biopsy reports very confusing, so don't feel bad! One problem is that there are so many different scales, or ways of scoring the biopsy specimen, and of course some of it is individual interpretation, too. I think I have some info or links on biopsy reports I can post, but it may just muddy the water even more! However, it's pretty safe to say that when you see the terms " bridging fibrosis " and cirrhosis that things are not good. That is NOT to say that things are hopeless either! Things definitely are NOT hopeless, and treatment can benefit you greatly. I question your doctor recommending 'rebetron' to you though. That is the 'old' combo. What you need to get on is the new pegylated interferon, with ribavirin. The one thing that you have going for you is that you are genotype 2b. Genotype 2s are the easiest to treat of all genotypes. I would get as aggressive as possible, and if your GI isn't going along with this than I'd look for someone else. Having cirrhosis makes things harder, but NOT impossible! The new pegylated interferons do work better in people with cirrhosis than the old Rebetron combo. And yes, there has been plenty of evidence that you can reverse fibrosis, and it's the fibrosis that causes the cirrhosis. The liver is an amazing organ, and it WILL heal itself if given half a chance. One thing I would definitely recommend is to NOT quit treatment at 24 weeks, which is commonly done with your genotype, but to stay on for a full year. I know that doesn't sound great, but it greatly increases your chance of getting rid of some of that fibrosis in your liver, and having a viral response too. Another option to consider is adding the antiviral medication Amantadine, taking it along with the Peg-Intron and ribavirin. There have been some studies that show adding it to the combination of interferon and ribavirin can increase your chance of a sustained response. It's a pretty inexpensive medication, and worth a try, IF you can get your doctor to write the prescription. I would try and get started on treatment as soon as possible. As for side effects - they are so different for everyone, it's impossible to say how you will be affected. However, most studies show that people find the pegyalted interferon easier to deal with than the old 3 times a week interferon. This is also an area where having a really good, experienced doctor can make a difference. He needs to know how to best treat any side effects you might have. And I'd start with a good antidepressant - NOW! Even without treatment what you've been going through is depressing enough! Another thing you really need to do is stop eating anything that is iron-fortified. Read the labels. Cereals are some of the worst offenders, but usually in the 'organic' area you can find some. Definitely no vitamins with iron! How much of the vitamin E are you taking? I would take at least 800IU, maybe even 1200IU. All the stuff you said you are taking sounds pretty good. You might add a calcium supplement, taken with meals. Besides the fact that you can probably use the extra calcium, it will also inhibit iron absorption. I really recommend a GOOD brand of milk thistle, one that has been tested or studied, like Maximum Milk Thistle or Thistlyn. What ever you do, try to think positive! There are people who have cirrhosis who do clear this virus, and go on to lead normal, healthy lives! Don't listen to the negative talk, it will only bring you down. Attitude DOES make a difference! Ok, I'm going to go see what info I have in my files that might be of some help to you. Take care, and remember that we are here for you. Claudine __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2001 Report Share Posted August 29, 2001 Cher, Nice to meet you! Your geno of 2b is, according to statistics, MUCH easier to get into remission than what most of us heppers are, 1A or 1B. I'm 1B and I'm in remission, so if I can do it you can too! (if you decide to that is) I have no liver damage, but a lot of hep c symptoms - chronic fatigue, muscle aches, joint aches, insomnia, irritability, headaches, yadda yadda. Cuz of the symptoms, and cuz I felt at 46 and otherwise pretty darn healthy, I'd go for the treatment, knowing I could always quit if it got too much. Well, for me, the interferon shots really helped eliminate my joint pain and muscle aches while I was doing them. I did a shot every other day, not the normal 3 a week (peg wasn't available when I started last spring). I finished treatment this past April and feeling pretty good, all things considered! My doc is working with me, as my hep symptoms have returned after treatment, BUT I'm virus " free " for now! My 6th mo post treatment pcr is in Oct. Whatever you decide, I'll support you in your decision. I avoid lots of medical mumbo jumbo but it sounds like you have cirrhosis? If so, then I'd lean toward doing the treatment as opposed to not. Course, you could wait a while if you wanted, to see what new treatments may come up, or it may not be a good time in your life to take a year out for treatment. Which is kinda what treatment is, 48 weeks of being very selfish - where you try for no stress, lots of naps and rest, taking care of yourself in every way. I haven't met anyone yet who has achieved that 100% hahaha but we try. Good luck to you. Let us know what you decide. alley icq 12631861 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2001 Report Share Posted August 29, 2001 Cher, Nice to meet you! Your geno of 2b is, according to statistics, MUCH easier to get into remission than what most of us heppers are, 1A or 1B. I'm 1B and I'm in remission, so if I can do it you can too! (if you decide to that is) I have no liver damage, but a lot of hep c symptoms - chronic fatigue, muscle aches, joint aches, insomnia, irritability, headaches, yadda yadda. Cuz of the symptoms, and cuz I felt at 46 and otherwise pretty darn healthy, I'd go for the treatment, knowing I could always quit if it got too much. Well, for me, the interferon shots really helped eliminate my joint pain and muscle aches while I was doing them. I did a shot every other day, not the normal 3 a week (peg wasn't available when I started last spring). I finished treatment this past April and feeling pretty good, all things considered! My doc is working with me, as my hep symptoms have returned after treatment, BUT I'm virus " free " for now! My 6th mo post treatment pcr is in Oct. Whatever you decide, I'll support you in your decision. I avoid lots of medical mumbo jumbo but it sounds like you have cirrhosis? If so, then I'd lean toward doing the treatment as opposed to not. Course, you could wait a while if you wanted, to see what new treatments may come up, or it may not be a good time in your life to take a year out for treatment. Which is kinda what treatment is, 48 weeks of being very selfish - where you try for no stress, lots of naps and rest, taking care of yourself in every way. I haven't met anyone yet who has achieved that 100% hahaha but we try. Good luck to you. Let us know what you decide. alley icq 12631861 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2001 Report Share Posted August 29, 2001 Cher, Nice to meet you! Your geno of 2b is, according to statistics, MUCH easier to get into remission than what most of us heppers are, 1A or 1B. I'm 1B and I'm in remission, so if I can do it you can too! (if you decide to that is) I have no liver damage, but a lot of hep c symptoms - chronic fatigue, muscle aches, joint aches, insomnia, irritability, headaches, yadda yadda. Cuz of the symptoms, and cuz I felt at 46 and otherwise pretty darn healthy, I'd go for the treatment, knowing I could always quit if it got too much. Well, for me, the interferon shots really helped eliminate my joint pain and muscle aches while I was doing them. I did a shot every other day, not the normal 3 a week (peg wasn't available when I started last spring). I finished treatment this past April and feeling pretty good, all things considered! My doc is working with me, as my hep symptoms have returned after treatment, BUT I'm virus " free " for now! My 6th mo post treatment pcr is in Oct. Whatever you decide, I'll support you in your decision. I avoid lots of medical mumbo jumbo but it sounds like you have cirrhosis? If so, then I'd lean toward doing the treatment as opposed to not. Course, you could wait a while if you wanted, to see what new treatments may come up, or it may not be a good time in your life to take a year out for treatment. Which is kinda what treatment is, 48 weeks of being very selfish - where you try for no stress, lots of naps and rest, taking care of yourself in every way. I haven't met anyone yet who has achieved that 100% hahaha but we try. Good luck to you. Let us know what you decide. alley icq 12631861 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2001 Report Share Posted August 29, 2001 Cher, Nice to meet you! Your geno of 2b is, according to statistics, MUCH easier to get into remission than what most of us heppers are, 1A or 1B. I'm 1B and I'm in remission, so if I can do it you can too! (if you decide to that is) I have no liver damage, but a lot of hep c symptoms - chronic fatigue, muscle aches, joint aches, insomnia, irritability, headaches, yadda yadda. Cuz of the symptoms, and cuz I felt at 46 and otherwise pretty darn healthy, I'd go for the treatment, knowing I could always quit if it got too much. Well, for me, the interferon shots really helped eliminate my joint pain and muscle aches while I was doing them. I did a shot every other day, not the normal 3 a week (peg wasn't available when I started last spring). I finished treatment this past April and feeling pretty good, all things considered! My doc is working with me, as my hep symptoms have returned after treatment, BUT I'm virus " free " for now! My 6th mo post treatment pcr is in Oct. Whatever you decide, I'll support you in your decision. I avoid lots of medical mumbo jumbo but it sounds like you have cirrhosis? If so, then I'd lean toward doing the treatment as opposed to not. Course, you could wait a while if you wanted, to see what new treatments may come up, or it may not be a good time in your life to take a year out for treatment. Which is kinda what treatment is, 48 weeks of being very selfish - where you try for no stress, lots of naps and rest, taking care of yourself in every way. I haven't met anyone yet who has achieved that 100% hahaha but we try. Good luck to you. Let us know what you decide. alley icq 12631861 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2001 Report Share Posted September 1, 2001 Dear Cher, okay...things look bleak, but that is on paper......only God knows the number of our days....not docs, not disease. I am sorry your biopsy has come back looking bad. Is there a reason your doc suggested COMBO with rebetron instead of Peg Combo?? Altho' I have just finished 13 mos. of standard combo, most folks are now being given Peg Combo and seem to be doing better (response rate) than with rebetron. I am also a 2b, diag. 6/96, have Stage II Fibrosis & always normal enzymes, had high viral load at start of Tx. You know, us 2b-ers are supposed to have a better chance to remain undectable. I believe that even if you have some liver function, you will be able to live with that. There is also an ongoing debate re: the reversing of cirhosis and/or fibrosis. Yes, the sides are not pleasant...but we all are different. As unpleasant as the sides were for me ( & I use that word mildly in my own case) it was still do-able. I was able to complete Tx. In the least, I have given my body and liver a break from the virus for a while. In the most??? Tx may have worked. Only time will tell. I'm glad you have found this site. Another great site is Hepatitis-central. There is a wealth of information there and it abounds with loving,supportive people. You will be in my prayers from here on out. take good care, mzgee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2001 Report Share Posted September 1, 2001 Dear Cher, okay...things look bleak, but that is on paper......only God knows the number of our days....not docs, not disease. I am sorry your biopsy has come back looking bad. Is there a reason your doc suggested COMBO with rebetron instead of Peg Combo?? Altho' I have just finished 13 mos. of standard combo, most folks are now being given Peg Combo and seem to be doing better (response rate) than with rebetron. I am also a 2b, diag. 6/96, have Stage II Fibrosis & always normal enzymes, had high viral load at start of Tx. You know, us 2b-ers are supposed to have a better chance to remain undectable. I believe that even if you have some liver function, you will be able to live with that. There is also an ongoing debate re: the reversing of cirhosis and/or fibrosis. Yes, the sides are not pleasant...but we all are different. As unpleasant as the sides were for me ( & I use that word mildly in my own case) it was still do-able. I was able to complete Tx. In the least, I have given my body and liver a break from the virus for a while. In the most??? Tx may have worked. Only time will tell. I'm glad you have found this site. Another great site is Hepatitis-central. There is a wealth of information there and it abounds with loving,supportive people. You will be in my prayers from here on out. take good care, mzgee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2001 Report Share Posted September 4, 2001 Dear Cher, No need to appologize to any of us. Rebetron wasn't fun, but right now, so far as I know, it's the only FDA approved treatment. Your vitamin list sounds good. Good luck, dear. We'll be here for you. LOL, Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2001 Report Share Posted September 4, 2001 Dear Cher, No need to appologize to any of us. Rebetron wasn't fun, but right now, so far as I know, it's the only FDA approved treatment. Your vitamin list sounds good. Good luck, dear. We'll be here for you. LOL, Anne Quote Link to comment Share on other sites More sharing options...
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