Guest guest Posted August 10, 2001 Report Share Posted August 10, 2001 See, I'm not the only one Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2001 Report Share Posted August 10, 2001 Oh, I'm so glad I'm not alone. I am going to just take it one day/night at a time. Vicky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2001 Report Share Posted August 10, 2001 I know how all of you feel. I also stayed drained. Brain fog is terrible not to even mention all the aches we have to deal with. I use to be a very active person.....now I barely get out the house cause it hurts more than it does good. It's sad we have to go through all of this and when I was taken of tx before I had sides until I got back on it and now it's doubled. The more I take the shot the worse I fee. If it's not bad that night the next day is horrible. I wish more would understand. The shakes I have are so embrassing..especially when asked about them. At least we have each other to lean on during this trying time. I feel blessed to have found you all. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2001 Report Share Posted August 10, 2001 Vicky, I know what you mean. I am not AS sick AS often, but I am more and more tired as I go on. I don't remember the last time I did ANYTHING after work, but read or watch tv. I have not left the house. I can usually make it to church, because that's early enough in the day, that's about my only social activity. Anyway, if I have to finish, I am down to 19 weeks and counting. I think I may have to miss deer hunting this year, which I look forward to each year, but next year will be better. -dz- --- VicLea227@... wrote: > Great News Dave! > > I was non-detectable also at 4 mos. but my doc said > I had to continue > treatment for the full year. I guess each doctor > attacks this disease in > their own way. I'm at 6 refills (12 weeks as of > next week). My current > complaint is that all those close to me seems to > think that just because I've > come so far on treatment that all my sides etc. have > disappeared and I'm ok. > I may sound like a spoiled baby but I am still > having a hard time and that > just makes it a little harder. I guess what I'm > trying to say is that I feel > that no one understands or is as supportive as they > used to be. Anyway, it > feels good to be posting and I hope everyone is > doing as good as they can. > Love to All. > > Vicky > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2001 Report Share Posted August 10, 2001 I know people are always asking me how I'm doing and I usually just say " OK " , or " pretty good " , when I really mean " as well as can be expected " . In some ways I probably look healthier, because the loss of 20 pounds didn't hurt me, so I think that compounds the misunderstanding. I think I'm going to tell my Fellowship group from church not to expect me until after my tx is complete, I'm tired of calling all the time and telling them I'm not up to it, sometimes I don't think they believe me. -dz- --- Jannewilms42@... wrote: > Vicki I know just what you mean. Hubby says he > understands but he don't. He > likes to complain of his ailments and I finaly told > him last night..Yea we > all haveour crosses to bear or have you forgotten I > am going through my own > hurts right now? > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2001 Report Share Posted August 10, 2001 -dz- & Vicky, I have heard from others who did treatment and went undetectable in 3 months that they still felt sick and drained............ I was stopped in my 5th month because it was litterally killing me and that was in 97... I still have side effects from treatment.... It ruined my hair...caused brain fog and other things.... I actually felt better before I started treatment than after I was stopped....... That was my personal experience.... I am sure others may feel different than I do but I can barely do anything and I get exhausted...... I had more energy before the treatment...... Like I said we all respond different...... I will be praying that you both get thru this and stay undetected.... With lots of energy of course....... Love you guys!!!!!!! ;o Angel Hugs, Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2001 Report Share Posted August 10, 2001 -dz-, Tell them the truth.... You never know from one hour to the next how you are going to feel, and can not make a committment to being somewhere at a certain time when you don't know if you will be up to it..... I have started doing that..... The problem is it goes in ne ear and out the other. Angel Hugs, Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2001 Report Share Posted August 10, 2001 Hi SJ, I didn't leave..... I have been back and forth.... Feel like a jumping jack.. LOL.... I will be checking in whenever I am home......... Hey girl.... Can't get rid of me that easy..... ha ha .... HELLO EVERYONE FROM N. J. WAVING ATCHA~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Angel Hugs, Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2001 Report Share Posted August 10, 2001 -dz- We are all in this together..... We need each others strength to get thru this disease that we are fighting... Oh yeah!!!! We are a bunch of fighters...Yes we are. That darned Dragon doesn't stand a chance with us... ;o We are the Dragons and Dragonettes... ha-ha Angel Hugs, Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2001 Report Share Posted August 10, 2001 You hang in there Jan. I know what you mean about people not understanding. It is a lonely disease. I got a lot of comfort from this group because we all know what it's like. Even good friends who tried couldn't know or understand. I appreciated their caring but the real understanding came from this group - and still does. Be strong, Dennis Re: [ ] PCR I know how all of you feel. I also stayed drained. Brain fog is terrible not to even mention all the aches we have to deal with. I use to be a very active person.....now I barely get out the house cause it hurts more than it does good. It's sad we have to go through all of this and when I was taken of tx before I had sides until I got back on it and now it's doubled. The more I take the shot the worse I fee. If it's not bad that night the next day is horrible. I wish more would understand. The shakes I have are so embrassing..especially when asked about them. At least we have each other to lean on during this trying time. I feel blessed to have found you all. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2001 Report Share Posted August 12, 2001 I think you are right. There are always those who think they know what it is that you should do, better than you know it yourself. My body tells me what I should do after work is rest. To thine own self be true. -dz- --- Jannewilms42@... wrote: > Maybe you should DZ. If it helps you out then do > what you have to. God knows > what U R going through even though they don't..So > friend feel no guilt. Only > we can take care of us and understand what we are > going through not anyone > else. > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2001 Report Share Posted August 12, 2001 Thank you for your honesty. I was riding a cloud for a while, but I have to keep in mind that it is by no means over. I have heard from others that it took a couple of months to start feeling better after discontinuing the tx. I pray that you start feeling better. I will prepare myself for the worst and hope for the best and expect something in between. -dz- --- diane214@... wrote: > -dz- & Vicky, > I have heard from others who did treatment and > went undetectable in 3 > months that they still felt sick and > drained............ I was stopped > in my 5th month because it was litterally killing me > and that was in > 97... I still have side effects from treatment.... > It ruined my > hair...caused brain fog and other things.... I > actually felt better > before I started treatment than after I was > stopped....... That was my > personal experience.... I am sure others may feel > different than I do > but I can barely do anything and I get > exhausted...... I had more energy > before the treatment...... Like I said we all > respond different...... I > will be praying that you both get thru this and stay > undetected.... With > lots of energy of course....... Love you guys!!!!!!! > ;o > > > > Angel Hugs, > > Diane > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2001 Report Share Posted August 12, 2001 Amen to that. I have already given up my guitar lessons long ago, for that reason. That is the only commitment I have after work, and I always have good intentions, but I am learning that when I get home from work, you can stick a fork in me. I'm done. -dz- --- diane214@... wrote: > -dz-, > Tell them the truth.... You never know from one > hour to the next how > you are going to feel, and can not make a > committment to being somewhere > at a certain time when you don't know if you will be > up to it..... I > have started doing that..... The problem is it goes > in ne ear and out > the other. > > > > Angel Hugs, > > Diane > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2001 Report Share Posted August 12, 2001 Well, if Bilbo Baggins can slay a dragon, then so can I! Let's do it! -dz- --- diane214@... wrote: > -dz- > We are all in this together..... We need each > others strength to get > thru this disease that we are fighting... Oh > yeah!!!! We are a bunch > of fighters...Yes we are. That darned Dragon doesn't > stand a chance with > us... ;o > We are the Dragons and Dragonettes... ha-ha > > > > Angel Hugs, > > Diane > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2001 Report Share Posted August 13, 2001 Connie I don't think the two sips of beer you took would cause this so don't be worrying about that please. Have you tried using all natural personal products like deodorant and things like that and are you staying away from toxic cleaners and smelling gasoline, lighter fluid, and stuff like that. We keep my husband away from all that stuff or he wears a mask while using these types of things. I know you are stressing out wondering what else out there you could do to help. With your other health problems that maybe the cause also of the viral load coming down slowly I just do not know. All you can do is keep it up as long as you can or your body will let you and know you are doing all you can. Stress is as bad on the liver as you know as anything else is and we can not quit worrying I know. What did your doctor seems to think about the viral load coming down so slowly? was good at 3 months so maybe with your other health problems and medications it will take another month of aggressive treatment to show it is coming down. now has to have a unit of blood removed every two weeks to get his iron level down for the PCT he has with the Hep C and then he can get off of the Interferon. He will be on it for two years next month. Doctor says the liver is good but the PCT may come back as soon as he comes off the Interferon since that is what has kept the PCT in remission all this time. He was not in to good a shape for 3 days after the first blood removal but better today. He is off the Ribavarin and has been for 4 months and on the once a week dose of Peg-Intron. The sides were getting so much better for him and then the blood removal sent him feeling rotten again like before so we shall see. Connie keep up the good work you are doing all you can and try not to stress to much about it that will help your liver also. I try to keep as stress free as I can and it leaves me with double the stress but it is worth it to me to try and get this dragon asleep and keep it that way. Your in our thoughts and prayers. Hang in there and try to stay positive. - I know how hard that can be but it is the best medicine. Winne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2001 Report Share Posted August 13, 2001 Connie, I am sooo sorry to hear your 24 week PCR came back badly. I hate to say this, but from what I know, you might be a " non-responder " . I think about 50% of the time, this is what happens at 24 weeks. My dr. told me that he would take me off at 24 weeks if my 3,200,000 PCR is not down to at least 320,000 (he said think of it as dropping a zero). Is your dr. going to take you off the med's? My heart sincerely goes out to you. I am right behind you, I am also a 1a and have my 24 week PCR very very very soon. My prayers and support, Edie PCR > Hi All, > I have been sitting on this for a few days. I > guess I am a bit shocked. My Viral Load was 3,484,600 > (2/14/01) at the beginning of this go round. I had > the PCR done (8/3/01) and now my viral load or > whatever it is, is 2,362,600. > Some of you might remember I am on a heavy dosage of > the Interferon, 5 mu's shot nightly also the Ribavarin > I take 6 pills @ 200 mg each, by my body weight 5 > pills of Rib would be the right dosage. I have been > doing the heavier dosage for app 3 1/2 months I have > been treated this go round very agressively. > Had got my hopes up because of my LFT's getting in > the normal range. At the start of combo, this time > they were 108 AST and 91 ALT range. Now they are: > AST 67 ALT 41.. Also my Thyroid has went overactive. > I also have diabetes now, I take 5 mg of Glucotrol XL > daily. I keep wondering what am I doing wrong. I > have been on Keflex 5000 mg 4 times a day for acute > bronchitis (actually I would only been on the first > day of Keflex) when blood was drawn. I wonder if that > could have anything to do with the high RNA. I forgot > to ask. I just can't figure out what I am doing > wrong. I took 2 sips of someones beer at a restauant > in May, I didn't figure it would do a whole lot. I > forgot to mention that also. I sit here and wonder > constantly what I am doing wrong.....Maybe some of you > know something. My Genotype is 1a..............Take > Care, Connie > I will continue this dosage as long as they let me. > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2001 Report Share Posted August 13, 2001 Hi Winne, I no longer need deorderant. That is the only plus thing the meds have done . I stay away from fumes, I use pine sol cleaner is the only thing that I could class toxic and I don't think it is.. Wow , you should hear the thunder and lightning going on here. Back to the e mail Connie. I plan on staying on the meds as long as they will give them to me. I am on them through Scherings CTC program. I was just approved to receive them tru 2/2002. The Dr I have here actually does not know too much about Hep C. As he says I am his one and only. He is just helping me basically to get on meds. He was a bit concerned a few weeks ago about my WBC, but everything turned out ok, it was up some on next labs. The measles looking rash I get has come back. I noticed it a few days ago. I think all the sides go in a circuit with me. Pain will get unbearable, and then subside some and then something else will be there in place of it (you understand what I mean?) Well I guess I should be thankful it has come down, instead of going up. Time will tell.....Take Care, Connie __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2001 Report Share Posted August 13, 2001 Edie, You know the thunder and lightning I mentioned in my other post. Well it knocked me offline, . The battery back up does not seem to be working. I was classed as a non-responder on 10/99 at 6 months. That is the purpose for the agressive treatment this time. I actually have not spoken to Dr A since getting the results. I am not real sure what he will do, but I don't think he will pull me. I figure this is just another setback I have to deal with......Take Care All, Connie PS: Good Luck, Edie on your PCR. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2001 Report Share Posted August 13, 2001 Connie, I'm really sorry to hear this! You are not doing anything wrong, you just have a very resistant strain of HCV. I don't think the Keflex would make any difference, and I know 2 sips of a beer aren't going to make a difference either. It's NOT you, it just this virus. Mine hardly dropped at all either when I was on treatment. I know you are very disappointed that your viral load has dropped so little. However, do try and look at what positive there is: Even though it took a while, your LFT are now in the normal range, and that is GOOD. In fact, if you can, I would strongly consider staying on at least the interferon for a while longer, at least a year, although I don't know that the high dosing you're doing now is really necessary. The area of maintanence dosing is still being studied, but I know a few people who are on regular or low doses just to keep any more damage from occuring to their liver. In fact, one man I know is only taking two injections of reg. dose Infergen a week, and that seems to be stopping progress. There is quite a bit of evidence that interferon can help stop and even reverse fibrosis. At this point maybe that should be your main concern. Eventually they will find a cure for this disease but you need to still be around when it gets here. I know most people thought my doctor was a bit crazy to keep me on treatment for a full year with no significant drop in viral load, even with high dosing, but now I have zero fibrosis, and that is better than the stage one I had before! There are always alternatives too, either in conjuction with interferon, or alone. I don't know of any that will actually help get rid of the virus, but there are some that do seem to help the liver and help stop or slow the damage. Unfortunately they do tend to be expensive. I really wish I had some more positive and hopefull things to say. If I think of anything, I'll let you know! Hugs, Claudine __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2001 Report Share Posted August 13, 2001 Connie, I'm really sorry to hear this! You are not doing anything wrong, you just have a very resistant strain of HCV. I don't think the Keflex would make any difference, and I know 2 sips of a beer aren't going to make a difference either. It's NOT you, it just this virus. Mine hardly dropped at all either when I was on treatment. I know you are very disappointed that your viral load has dropped so little. However, do try and look at what positive there is: Even though it took a while, your LFT are now in the normal range, and that is GOOD. In fact, if you can, I would strongly consider staying on at least the interferon for a while longer, at least a year, although I don't know that the high dosing you're doing now is really necessary. The area of maintanence dosing is still being studied, but I know a few people who are on regular or low doses just to keep any more damage from occuring to their liver. In fact, one man I know is only taking two injections of reg. dose Infergen a week, and that seems to be stopping progress. There is quite a bit of evidence that interferon can help stop and even reverse fibrosis. At this point maybe that should be your main concern. Eventually they will find a cure for this disease but you need to still be around when it gets here. I know most people thought my doctor was a bit crazy to keep me on treatment for a full year with no significant drop in viral load, even with high dosing, but now I have zero fibrosis, and that is better than the stage one I had before! There are always alternatives too, either in conjuction with interferon, or alone. I don't know of any that will actually help get rid of the virus, but there are some that do seem to help the liver and help stop or slow the damage. Unfortunately they do tend to be expensive. I really wish I had some more positive and hopefull things to say. If I think of anything, I'll let you know! Hugs, Claudine __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2001 Report Share Posted August 13, 2001 You should complete a 6 month course of the combo first, in the same dosages. You can also try and swtich to PEG-IFN, ask Dr A if he can do that.Your other tests except throid are all stable and enzymes are coming down. So not to despair. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2001 Report Share Posted August 13, 2001 You should complete a 6 month course of the combo first, in the same dosages. You can also try and swtich to PEG-IFN, ask Dr A if he can do that.Your other tests except throid are all stable and enzymes are coming down. So not to despair. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2001 Report Share Posted August 14, 2001 Thanks Doc, I sure going to try. I could probably get him to change the script, but. Schering has approved me for the Combo. I am not sure if and how they would approve me for the other. I feel lucky getting what I get............Smile, Connie And as always, Thank you Doc __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2001 Report Share Posted August 14, 2001 Thanks Doc, I sure going to try. I could probably get him to change the script, but. Schering has approved me for the Combo. I am not sure if and how they would approve me for the other. I feel lucky getting what I get............Smile, Connie And as always, Thank you Doc __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2001 Report Share Posted September 6, 2001 PCR ( polymerase chain reaction) is merely a technology or a method of measuring infective particles in the body. Total HCV-RNA by PCR tells us that there are that many virus particles circulating. By and large there is no quantitative correlation between viral load and extent or severity of the liver disease. For example in acute HCV infection the viral load may be very high but liver damage may be minimal. I hope this helps. Quote Link to comment Share on other sites More sharing options...
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