Medical Forum / Diseases and Disorders / Hepatitis / August 2006
I NEED HELP POSTING MESSAGES - THIS IS FOR THE NEWBIES !!!!!!
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Abby - 19 Aug 2006 02:48 GMT I hope I didn't lose this post. I've been trying to post it but kept getting lost in cyberspace somewhere Was trying to post reply to people who are just beginning this treatment for Hep C -
This is for anyone diagnosed with Hep C who is offered treatment. I'm Geno 3 and to make a real long story short because I have good news for you - here goes. Today I'll do my 9th injection and then I'll only have 15 more to go to complete the 24 weeks of tx. As far as side effects go, I have had a few bouts with diarrhea, mild to severe anxiety, a few crazy dreams and sleepless nights, a weird little rash on the top of both my feet, lost about 10 pounds at first and have gained back 5. I have had some episodes of lower leg and foot circulation and I still don't know what that's about and if it continues or becomes worse I'll tell a doctor. In the very beginning of treatment my periods started back and I had terrible PMS. That happened to me on weeks 3 and 4 and now its back to what it was - nothing. (I'd been free from that for about a year) This week I began to notice the fatigue people speak of on tx and you'll know it if it hits you its like no other tiredness I've ever had. It is this - walking up four flights of steps and you are only half way there and you don't know if you have the energy to get to the top and you don't want to give in and go back down and wait for the elevator. I couldn't figure out why my Dr. told me he would prefer it if I took it easy on weight training and kickboxing and now I now why. I'd probably injure myself from trying to do what I used to do. So, I'll be lazy and wait for this to be over - I've missed out on workouts for long periods of time before -usually due to feeling lousy from symptoms of Hep C! Hmmm what else - yesterday I noticed I was peeling around my ankles. That's from a little bit of sun I got while on vacation and yes - I did go on vacation with the meds and had a great time - felt wonderful. And, last night I was up at 3:00 a.m. with a head ache. I took two aspirin with oj and went back to bed. (Dhaaa!) Probably, the worst part of all of this has been my Dr. He's an a.s and I will probably ask my family physician who I really like to monitor me from here on out if there are no serious problems. He wanted me to see a specialist, I did see the guy a few times, he's an a.s and I don't wanna see him anymore. I wonder if the anxiety comes from this Dr. Anyway - enough of that don't want to waste time whining although people that know me would get a good laugh from that last statement! The way I look at this thing now is I wish I'd never researched Hep C after I was dxed. I panicked from what I read online. I went into denial and caused myself more liver damage. I am between a stage 2 and stage 3 of fibrosis. I think we need to look at it this way - you have a life threatening disease but there is a treatment. Percentage wise - we have a great opportunity to be rid of this disease and reverse some to all damage done. Why hesitate? Go for it! If it becomes too terrible we can chose to quit. But I don't know of anyone who would chose to die from liver disease. Its the worst. Good luck to you and everyone here going through this. Peace & Love - Abby
greyhackles - 19 Aug 2006 02:56 GMT >I hope I didn't lose this post. I've been trying to post it but kept >getting lost in cyberspace somewhere Was trying to post reply to >people who are just beginning this treatment for Hep C - [snipped]
And the original attempt showed up this morning...
/greyhackles
elmoemerson@webtv.net - 19 Aug 2006 14:54 GMT I NEED HELP POSTING MESSAGES - THIS IS FOR THE NEWBIES !!!!!! Group: alt.support.hepatitis-c Date: Fri, Aug 18, 2006, 6:48pm (CDT-2) From: abbycsu@yahoo.com (Abby) I hope I didn't lose this post. I've been trying to post it but kept getting lost in cyberspace somewhere Was trying to post reply to people who are just beginning this treatment for Hep C - This is for anyone diagnosed with Hep C who is offered treatment. I'm Geno 3 and to make a real long story short because I have good news for you - here goes. Today I'll do my 9th injection and then I'll only have 15 more to go to complete the 24 weeks of tx. As far as side effects go, I have had a few bouts with diarrhea, mild to severe anxiety, a few crazy dreams and sleepless nights, a weird little rash on the top of both my feet, lost about 10 pounds at first and have gained back 5. I have had some episodes of lower leg and foot circulation and I still don't know what that's about and if it continues or becomes worse I'll tell a doctor. In the very beginning of treatment my periods started back and I had terrible PMS. That happened to me on weeks 3 and 4 and now its back to what it was - nothing. (I'd been free from that for about a year) This week I began to notice the fatigue people speak of on tx and you'll know it if it hits you its like no other tiredness I've ever had. It is this - walking up four flights of steps and you are only half way there and you don't know if you have the energy to get to the top and you don't want to give in and go back down and wait for the elevator. I couldn't figure out why my Dr. told me he would prefer it if I took it easy on weight training and kickboxing and now I now why. I'd probably injure myself from trying to do what I used to do. So, I'll be lazy and wait for this to be over - I've missed out on workouts for long periods of time before -usually due to feeling lousy from symptoms of Hep C! Hmmm what else - yesterday I noticed I was peeling around my ankles. That's from a little bit of sun I got while on vacation and yes - I did go on vacation with the meds and had a great time - felt wonderful. And, last night I was up at 3:00 a.m. with a head ache. I took two aspirin with oj and went back to bed. (Dhaaa!) Probably, the worst part of all of this has been my Dr. He's an a.s and I will probably ask my family physician who I really like to monitor me from here on out if there are no serious problems. He wanted me to see a specialist, I did see the guy a few times, he's an a.s and I don't wanna see him anymore. I wonder if the anxiety comes from this Dr. Anyway - enough of that don't want to waste time whining although people that know me would get a good laugh from that last statement! The way I look at this thing now is I wish I'd never researched Hep C after I was dxed. I panicked from what I read online. I went into denial and caused myself more liver damage. I am between a stage 2 and stage 3 of fibrosis. I think we need to look at it this way - you have a life threatening disease but there is a treatment. Percentage wise - we have a great opportunity to be rid of this disease and reverse some to all damage done. Why hesitate? Go for it! If it becomes too terrible we can chose to quit. But I don't know of anyone who would chose to die from liver disease. Its the worst. Good luck to you and everyone here going through this. Peace & Love - Abby /////////// Yep, the stuff made me mentruate too. :-) elmo
http://community.webtv.net/elmoemerson/DocElmosHepFile
http://community.webtv.net/elmoemerson/TheFamilyAlbum
Cactus Jammies - 19 Aug 2006 22:57 GMT I NEED HELP POSTING MESSAGES - THIS IS FOR THE NEWBIES !!!!!!
/////////// Yep, the stuff made me mentruate too. :-) elmo =====================
never did get your foreskin back though, did you Elmo?
cactus jammies
elmoemerson@webtv.net - 20 Aug 2006 14:08 GMT Re: I NEED HELP POSTING MESSAGES - THIS IS FOR THE NEWBIES !!!!!! Group: alt.support.hepatitis-c Date: Sat, Aug 19, 2006, 9:57pm (CDT+5) From: CactusJammies@tetrahedron.net (Cactus Jammies) <elmoemerson@webtv.net> wrote in message news:17736-44E71815-178@storefull-3252.bay.webtv.net... I NEED HELP POSTING MESSAGES - THIS IS FOR THE NEWBIES !!!!!! /////////// Yep, the stuff made me mentruate too. :-) elmo ===================== never did get your foreskin back though, did you Elmo? cactus jammies //////// No, it's been a continual woody ever since. elmo
http://community.webtv.net/elmoemerson/DocElmosHepFile
http://community.webtv.net/elmoemerson/TheFamilyAlbum
Ally - 19 Aug 2006 15:20 GMT > I couldn't > figure out why my Dr. told me he would prefer it if I took it easy on > weight training and kickboxing and now I now why. I'd probably injure > myself from trying to do what I used to do. So, I'll be lazy and wait > for this to be over If you can do workouts even a little, I recommend continuing. I have been going to the gym 5-6 days a week all thru my tx and really think it has made a huge difference in the sides and the outcome of it all. The first 12 weeks was hard because that is when I had the most sides but still I persevered and am glad for it. I am now in week 20 and am feeling stronger then ever (thanks for the Aranesp shot I started 3 weeks ago) and am even adding workouts. Yes, some of my muscle mass decreased but I did what I could and feel like I am starting to gain my strength back.
Ally
Barbara - 19 Aug 2006 17:42 GMT Ally, That's wonderful. I've been a workout nut forever and so glad to hear it's helping you. Keep going. My best, Barbara
> > I couldn't > > figure out why my Dr. told me he would prefer it if I took it easy on [quoted text clipped - 13 lines] > > Ally Di Di - 19 Aug 2006 17:58 GMT > > I couldn't > > figure out why my Dr. told me he would prefer it if I took it easy on [quoted text clipped - 13 lines] > > Ally That's amazing you can still work out. I was doing power yoga twice a week, working out at a gym and walking a few days a week when I started all this, but I've had to quit all except the walking, which I try to do at least 4 times a week. I'm pretty slow (used to be a fast walker) but I'm at least doing it and when I do, it does make me feel better. I do some stretching and would like to find a yoga that's more stretching and less strenuous. I am too short of breath to do heavy work outs though. I went to a wedding and tried to dance (used to dance alot too) and made it through 1 dance, but got too short of breath.....I know I'll get back to some of these activities when this treatment is over, but right now it's not working. My hat's off to you!
Di
Ally - 19 Aug 2006 18:21 GMT > That's amazing you can still work out. I was doing power yoga twice a > week, working out at a gym and walking a few days a week when I started [quoted text clipped - 9 lines] > > Di Have you checked your hemoglobin? I found that the lower it got, the harder it was to workout. When it was at it's lowest, I could barely do anything but had to force myself thru the workouts as best I could and forget about going for a walk, no way, I was too weak. I then added the aranesp (like procrit) and wow, what a difference that has made. Provigil helps too. I feel very lucky to feel as well as I do at this point especially since I'll be doing this for 60+ weeks (I still don't have an end date, sigh).
Ally
Di Di - 19 Aug 2006 21:27 GMT > > That's amazing you can still work out. I was doing power yoga twice a > > week, working out at a gym and walking a few days a week when I started [quoted text clipped - 20 lines] > > Ally My hemoglobin has stayed right around 11.2, which is just a little under the normal range. I'm just having trouble keeping my white count up. I was thinking after I wrote last time - I bet you're lots younger than me though! HA! What is your genotype? I didn't know anyone went past 48 weeks. I learn so much from this group.
Di
Ally - 20 Aug 2006 04:49 GMT > My hemoglobin has stayed right around 11.2, which is just a little > under the normal range. I'm just having trouble keeping my white count > up. I was thinking after I wrote last time - I bet you're lots younger > than me though! HA! What is your genotype? I didn't know anyone went > past 48 weeks. I learn so much from this group. I'm G1A and am 42 years old so yes, I imagine that helps a lot. My Dr said age, weight and gender play a big role so was excited to see how the tx would work on me since since I fit the bill. She was actually surprised when I got so many sides in the beginning but maybe it has made a difference now that I am past that first 13 weeks. The reason I am doing it so long is that my Dr wants me to do an additional 48 weeks starting when I reach a negative reading. My VL is at 170 now (yay) but it needs to be below 25 to come back as negative. I am hoping beyond hope that my blood test next Friday shows that, then I will only have to do this for a total of 68 weeks.
Ally
Di Di - 20 Aug 2006 16:40 GMT > > My hemoglobin has stayed right around 11.2, which is just a little > > under the normal range. I'm just having trouble keeping my white count [quoted text clipped - 14 lines] > > Ally Good luck on your blood test. I really didn't expect mine to be none detected, so it was a wonderful surprise. Did your doc think that women or men (gender) had less side effects? I was in really good shape when I started, didn't really have any side effects from the hep C - that's prob why I didn't think to be tested or anything. I found out when I was going in for other testing (even though my liver function tests had been a little high for years)
Ally - 21 Aug 2006 12:02 GMT > Good luck on your blood test. I really didn't expect mine to be none > detected, so it was a wonderful surprise. Did your doc think that women [quoted text clipped - 3 lines] > was going in for other testing (even though my liver function tests had > been a little high for years) Thanks. She said the women have a better chance for tx to work then men, she didn't mention anything about it making a difference for sides. Since I'm the youngest patient she has had, I think she thought I might have less because of my age and the fact that I am very fit.
Ally
kjoh - 22 Aug 2006 04:20 GMT "Since I'm the youngest patient she has had, I think she thought I might have less because of my age and the fact that I am very fit." Ally
Ally may I ask how old you are? Are you the one who works out? I've got the newbies all mixed up. Whereabouts do you live?
Kathy Not nosey, just curious.
Ally - 22 Aug 2006 14:48 GMT > "Since I'm the youngest patient she has had, I think she thought I might > have less because of my age and the fact that I am very fit." Ally [quoted text clipped - 4 lines] > Kathy > Not nosey, just curious. I'm 42 and yes, I am the one who works out. :) I live in Buffalo, NY
Ally
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