Aa
Please allow me to introduce myself
Hi, everyone,
I've been reading this site for a while, and now that I'm on tx, I can see the value of actually becoming a member. I do learn so much here, and the recent post about the tires just knocked me out!!! I needed a good laugh, and I sure got it. I really appreciate the way you folks support one another, and I can use some of that, too.
So here's my stats: 55, F, Geno 1b, dx 1996 through a routine blood donation (I had been negative in 1992). Pretty sure I acquired it through work as an ED nurse. I've had no striking sx, no abnormal labs, bx in 2007 was Grade 2 Stage 2. Recently got the opportunity to participate in Telaprevir Phase III trial, VX 108. Since they request that I not share specific info about the trial itself, I'll just say that you can learn the particulars by googling it, but I am getting SOC and a chance of also receiving Telaprevir. I was required to have another liver bx before beginning the trial, and it had been just 17mos since my previous bx, but the result was surprising: a significant decrease in inflammation, Grade 1-2, Stage 1. Of course I had the bx just to be in the study so I didn't think about changing my mind when I learned my bx results were improved. What I've been doing over the past year and a half is receiving lots of bodywork, including structural integration and visceral manipulation; regular acupuncture; and taking a Chinese herbal formula called HepatoC. I've just begun 4th week of tx, took 4th Interferon last night. I've read lots of your comments about clinical trials, and I am feeling the frustration of the blinding, not knowing if I'm getting the Telaprevir or not, and knowing that it will be some time before I get any real information about how I'm doing. Meanwhile, though, the treatment is all free and I am getting good care. Just found out yesterday that my Hgb dropped below 10 (started out 12.5), so my Riba has been cut in half till next weeks' visit. That explains the dreadful fatigue!!! So many other sides: GI burning, abdominal cramping and diarrhea, anal irritation, moody, nervous, and irritable, insomnia, headache, muscle and joint pain, funny taste in my mouth and can't tolerate strong tasting foods, and now worsening nausea to boot. My study coordinator says I may feel better in 1-2 months as my body becomes used to the drugs. I've added Pepcid, Zoloft, sometimes Immodium, and now Zofran to my daily regimen of pills.
Is there a question in here? Yes! Do other people experience feeling better after a certain point? I know it's different for each person, but I'm curious about that. To me, it seems like the build-up of the drugs in the body would NOT make one feel better. Also, is the anal irritation common? I guess that particular side made me think I might be getting the Telaprevir. No rashes yet, occasional itching, did I leave anything out? I'm also kinda freaked out about the possibility of long-lasting repercussions from the study drugs, especially diabetes and thyroid and immune problems, since I already have hypothyroidism and diabetes runs in the family. The decision to treat at this time had a lot to do with coming to a place in my life where I could take some time off for my healing, and also knowing that I am not getting any younger or necessarily any more healthy. It seemed like a good idea to treat when I'm in good shape, though I am certainly questioning my decision daily since I've been feeling so bad.
Thanks for reading this long post, I really look forward to reading your replies. Grateful for any support.
Lapis
I've been reading this site for a while, and now that I'm on tx, I can see the value of actually becoming a member. I do learn so much here, and the recent post about the tires just knocked me out!!! I needed a good laugh, and I sure got it. I really appreciate the way you folks support one another, and I can use some of that, too.
So here's my stats: 55, F, Geno 1b, dx 1996 through a routine blood donation (I had been negative in 1992). Pretty sure I acquired it through work as an ED nurse. I've had no striking sx, no abnormal labs, bx in 2007 was Grade 2 Stage 2. Recently got the opportunity to participate in Telaprevir Phase III trial, VX 108. Since they request that I not share specific info about the trial itself, I'll just say that you can learn the particulars by googling it, but I am getting SOC and a chance of also receiving Telaprevir. I was required to have another liver bx before beginning the trial, and it had been just 17mos since my previous bx, but the result was surprising: a significant decrease in inflammation, Grade 1-2, Stage 1. Of course I had the bx just to be in the study so I didn't think about changing my mind when I learned my bx results were improved. What I've been doing over the past year and a half is receiving lots of bodywork, including structural integration and visceral manipulation; regular acupuncture; and taking a Chinese herbal formula called HepatoC. I've just begun 4th week of tx, took 4th Interferon last night. I've read lots of your comments about clinical trials, and I am feeling the frustration of the blinding, not knowing if I'm getting the Telaprevir or not, and knowing that it will be some time before I get any real information about how I'm doing. Meanwhile, though, the treatment is all free and I am getting good care. Just found out yesterday that my Hgb dropped below 10 (started out 12.5), so my Riba has been cut in half till next weeks' visit. That explains the dreadful fatigue!!! So many other sides: GI burning, abdominal cramping and diarrhea, anal irritation, moody, nervous, and irritable, insomnia, headache, muscle and joint pain, funny taste in my mouth and can't tolerate strong tasting foods, and now worsening nausea to boot. My study coordinator says I may feel better in 1-2 months as my body becomes used to the drugs. I've added Pepcid, Zoloft, sometimes Immodium, and now Zofran to my daily regimen of pills.
Is there a question in here? Yes! Do other people experience feeling better after a certain point? I know it's different for each person, but I'm curious about that. To me, it seems like the build-up of the drugs in the body would NOT make one feel better. Also, is the anal irritation common? I guess that particular side made me think I might be getting the Telaprevir. No rashes yet, occasional itching, did I leave anything out? I'm also kinda freaked out about the possibility of long-lasting repercussions from the study drugs, especially diabetes and thyroid and immune problems, since I already have hypothyroidism and diabetes runs in the family. The decision to treat at this time had a lot to do with coming to a place in my life where I could take some time off for my healing, and also knowing that I am not getting any younger or necessarily any more healthy. It seemed like a good idea to treat when I'm in good shape, though I am certainly questioning my decision daily since I've been feeling so bad.
Thanks for reading this long post, I really look forward to reading your replies. Grateful for any support.
Lapis
I am glad you responded to that guy Jim - got to keep the grains of salt and common sense in there .......
Welcome lapis - tired, cranky, diarrhea, achingness all over, fever, strange nose stuff happening, irritable with idiots or sometimes just with anyone - they should try it - , breathless, can't walk 20 metres or up stairs at all, did I mention tired? But I had a really good week last week - week 6. a bit ****ED it didn't stay like that - raised my expectations somewhat. Sometimes I have a good hour. 20 minutes ago I told a student that "that was a really stupid question"....from a profession where every question is a good question.....lol all day.....
I am going to try the raisins!
Blame it all on the meds and enjoy being and doing whatever you want - patience, committment, any A-type personality traits have all disappeared with the energy levels.
I am 55 yr old female, geno 1b, grade 1 stage 1, had HCV 20 - 25 years, in week 7 of treatment - to go 48 weeks ( I hope no more).
Welcome lapis - tired, cranky, diarrhea, achingness all over, fever, strange nose stuff happening, irritable with idiots or sometimes just with anyone - they should try it - , breathless, can't walk 20 metres or up stairs at all, did I mention tired? But I had a really good week last week - week 6. a bit ****ED it didn't stay like that - raised my expectations somewhat. Sometimes I have a good hour. 20 minutes ago I told a student that "that was a really stupid question"....from a profession where every question is a good question.....lol all day.....
I am going to try the raisins!
Blame it all on the meds and enjoy being and doing whatever you want - patience, committment, any A-type personality traits have all disappeared with the energy levels.
I am 55 yr old female, geno 1b, grade 1 stage 1, had HCV 20 - 25 years, in week 7 of treatment - to go 48 weeks ( I hope no more).
Nice to meet you all........... The new folks that is.. Nice to see the older folks here too!
(No intention of calling anyone old)
(No intention of calling anyone old)
I hadn't finished reading your post and all the following posts. Just wanted to add that the things Mr Liver and Jim are pointing out to you are very important.
Marcia
Marcia
It caught my eye immediately. I was singing along.... Was going to start my post with either continuing the lyrics or writing Sympathy for the Devil.... but I restrained myself, 'cause this was your first post.
Glad you liked my journal, i try to keep it as simple and factual as possible. Usually doctors don't lower the riba dose or prescribe Epo shots before the hgb goes below 10. Mine has been dropping very gradually, so there has not been any 'cause for alarm. Even though I feel as if it was way lower. I guess, since you are in a study, you will not receive rescue drugs, so they lower the dose instead. My hepatologist suggested to me to eat a lot of raisins, to help with the hgb, so I have organic raisins near my bedside and nibble on them all the time.
Marcia
Glad you liked my journal, i try to keep it as simple and factual as possible. Usually doctors don't lower the riba dose or prescribe Epo shots before the hgb goes below 10. Mine has been dropping very gradually, so there has not been any 'cause for alarm. Even though I feel as if it was way lower. I guess, since you are in a study, you will not receive rescue drugs, so they lower the dose instead. My hepatologist suggested to me to eat a lot of raisins, to help with the hgb, so I have organic raisins near my bedside and nibble on them all the time.
Marcia
Welcome to the group.
As Mr. Liver indirectly suggests, just because you became SVR doesn't mean what you did (or took) was helpful or would be to others. In other words you no doubt became SVR in spite of some of the things you did and took, not because of them. Mr. Liver mentions two hepato-toxic drugs as one example, as well as aspirin, which was the one pain killer my liver specialist told me to stay away from. (His choice and the choice of many other liver specialists is Tynlenol).
You also say in another recent post that you drank red wine 3X week during treatment. Again, I can state with assurity that you became SVR in spite of the red wine during treatment and not because of it.
As to your triple dose of interferon, I'd also be interested in the specifics of your dosing, because my knee jerk reaction is that you couldn't have had that much interferon on hand because of insurance reasons and what probably happened is that you took the full syringe, instead of a partial syringe, which would not be a triple dose but just maybe a certain per cent more. Speculation here, but the exact dosing would be helpful.
Hopefully you don't take this as a criticism, but when a geno 1 posts they became SVR after only 16 weeks, there is always the posssiblity that someone new will start jotting down all the things the person did to become SVR. I applaud your SVR but would hate to see people go out and buy aspirin, take hepa-toxic drugs, and drink wine 3X week on treatment. Not to mention all that spinach which contains oxalic acid.
-- Jim
As Mr. Liver indirectly suggests, just because you became SVR doesn't mean what you did (or took) was helpful or would be to others. In other words you no doubt became SVR in spite of some of the things you did and took, not because of them. Mr. Liver mentions two hepato-toxic drugs as one example, as well as aspirin, which was the one pain killer my liver specialist told me to stay away from. (His choice and the choice of many other liver specialists is Tynlenol).
You also say in another recent post that you drank red wine 3X week during treatment. Again, I can state with assurity that you became SVR in spite of the red wine during treatment and not because of it.
As to your triple dose of interferon, I'd also be interested in the specifics of your dosing, because my knee jerk reaction is that you couldn't have had that much interferon on hand because of insurance reasons and what probably happened is that you took the full syringe, instead of a partial syringe, which would not be a triple dose but just maybe a certain per cent more. Speculation here, but the exact dosing would be helpful.
Hopefully you don't take this as a criticism, but when a geno 1 posts they became SVR after only 16 weeks, there is always the posssiblity that someone new will start jotting down all the things the person did to become SVR. I applaud your SVR but would hate to see people go out and buy aspirin, take hepa-toxic drugs, and drink wine 3X week on treatment. Not to mention all that spinach which contains oxalic acid.
-- Jim
Congratulations on your SVR. I'd like to hear more about your dosing of IFN and how long your tx lasted ? How did you get so much extra interferon ?
I have to point out for those who might read your post, that Valerian is hepato-toxic and should be avoided by anyone with a compromised liver. The aspirin is also not advised especially if someone is on tx. Low platelets are associated with HCV, and anyone with lower than normal platelet counts can expect that tx will always lower them further. Low platelets inhibit the blood from clotting properly. Aspirin is a very effective blood thinner which will only add to the inability of your blood to clot. This practice could potentially result in a serious medical condition.
I understand that you feel these things worked for you, and I have no reason to believe they didn't.I mention them only because both are potentially dangerous for the general population of those infected with HCV.
Mr Liver
I have to point out for those who might read your post, that Valerian is hepato-toxic and should be avoided by anyone with a compromised liver. The aspirin is also not advised especially if someone is on tx. Low platelets are associated with HCV, and anyone with lower than normal platelet counts can expect that tx will always lower them further. Low platelets inhibit the blood from clotting properly. Aspirin is a very effective blood thinner which will only add to the inability of your blood to clot. This practice could potentially result in a serious medical condition.
I understand that you feel these things worked for you, and I have no reason to believe they didn't.I mention them only because both are potentially dangerous for the general population of those infected with HCV.
Mr Liver
Hi and welcome I am new here, but I had contracted Hep C in 1992. In 2002 I started Tx, I was informed that I had the most resistant hep c, and noone had responded to Tx with my type, so I experiemented on myself, instead of taking the dose of interferon prescribed by the Dr, I thought why waste the med, so I took the full bottle of interferon and injected it, stayed on reg dose of riboviron for 19 weeks, got procrit when my Hgb dropped, my hair started to thin so I shaved my head, avoided tylenol products,
for headaches took asprin and the procrit helped eliminated the headaches and helped alot alot with moods, tiredness, the nausea subsided, I added spinach, other dark green leafy veggies, fruits, and minimal protien.
For acid reflux, heartburn indigestion I took Nexium.
Since all meds are filtered through the liver as well as kidneys and lympatic system, I would try to avoid as many meds as possible while on TX so that the TX can be more effective,
ask for Procrit,
get a heating blanket, they come in throw sizes now, it helps with the muscle aches, long soaks in tub also help, will help with anal irritation also, I assume that is from the diarrhea,
hot water bottle for ab cramps,
sharpe cheddar cheez and yogart for the diarrhea,
for mood swings try to remind yourself that it is the meds messing with you. Our thought processes determine how we react to any and everything. Herbal teas also help, as well as Valerian Root (natures Valium)
for insomnia-melatonin, it works for ADHD children to help them sleep when their medswear off, it helps while on TX also.
my hep c has been non-detectable since tx in 02, the Center for Liver Desease & Control at U of Pittsburgh attributed the success to my more than tripling the dose of interferon, and diet, however FDA will not permit Drs' to prescribe that much and alot of people can not handle to side effects and go off Tx after about 2 mths.
Good luck. I hpe that everyone here can have as positive results as I have since I took meds in 02,
for headaches took asprin and the procrit helped eliminated the headaches and helped alot alot with moods, tiredness, the nausea subsided, I added spinach, other dark green leafy veggies, fruits, and minimal protien.
For acid reflux, heartburn indigestion I took Nexium.
Since all meds are filtered through the liver as well as kidneys and lympatic system, I would try to avoid as many meds as possible while on TX so that the TX can be more effective,
ask for Procrit,
get a heating blanket, they come in throw sizes now, it helps with the muscle aches, long soaks in tub also help, will help with anal irritation also, I assume that is from the diarrhea,
hot water bottle for ab cramps,
sharpe cheddar cheez and yogart for the diarrhea,
for mood swings try to remind yourself that it is the meds messing with you. Our thought processes determine how we react to any and everything. Herbal teas also help, as well as Valerian Root (natures Valium)
for insomnia-melatonin, it works for ADHD children to help them sleep when their medswear off, it helps while on TX also.
my hep c has been non-detectable since tx in 02, the Center for Liver Desease & Control at U of Pittsburgh attributed the success to my more than tripling the dose of interferon, and diet, however FDA will not permit Drs' to prescribe that much and alot of people can not handle to side effects and go off Tx after about 2 mths.
Good luck. I hpe that everyone here can have as positive results as I have since I took meds in 02,
All of you have really brightened up my day!! So grateful for all the posts: humorous, compassionate, informative, playful... I know I've come to the right place!!!
geterdone and FIGuy, I was beginning to wonder when someone would notice my musical reference...
sunqueen, wow, you answered every single one of my sx, thanks for injecting your sense of humor, it's something I must remember!! The humor really helps, you and others have reminded me of that. Thanks for the good tips too.
And everyone else...I feel like you guys threw me a welcoming party! And I didn't have to leave home, put forth much effort, or try to pretend like I was really feeling okay. Thanks, all. You guys rock!!
Lapis
geterdone and FIGuy, I was beginning to wonder when someone would notice my musical reference...
sunqueen, wow, you answered every single one of my sx, thanks for injecting your sense of humor, it's something I must remember!! The humor really helps, you and others have reminded me of that. Thanks for the good tips too.
And everyone else...I feel like you guys threw me a welcoming party! And I didn't have to leave home, put forth much effort, or try to pretend like I was really feeling okay. Thanks, all. You guys rock!!
Lapis
Welcome to the jungle...as one of the guilty party during Jackie & the Tire, even I have to admit that, if I hadn't posted to this forum yet, the Jack & Tire would have brought me out, too!
Me, 52...nope, 53 in a week+, F - G1. I just completed my 2nd shot yesterday (Friday). I've been lucky in the beginning...minimal sides. But I have a long haul, at least 48 weeks, and I'm pretty sure there will be plenty of time for sx to shift. But I'm enjoying the poop out of it for now. I remain "cautiously optimistic."
So glad you decided to join us here. We look forward to following your journey..please keep us posted.
regards & welcome**
Peg
Me, 52...nope, 53 in a week+, F - G1. I just completed my 2nd shot yesterday (Friday). I've been lucky in the beginning...minimal sides. But I have a long haul, at least 48 weeks, and I'm pretty sure there will be plenty of time for sx to shift. But I'm enjoying the poop out of it for now. I remain "cautiously optimistic."
So glad you decided to join us here. We look forward to following your journey..please keep us posted.
regards & welcome**
Peg
Yes, they all hang out in my house and pop out of the cupboards and closets when I need a wee boost!
Btw, I had to google 'chippendales' - i thought they were antique furniture.
I think I have a cultural handicap...
Epi :)
Btw, I had to google 'chippendales' - i thought they were antique furniture.
I think I have a cultural handicap...
Epi :)
My bad sides started to subside around week 12 then came back after the end of treatment and put me in the hospital with Pleuresy. Recently it started coming back again 7 months post treatment.
As far as the nose it looked like Christmas time up there ... all kinds of red and green stuff up there. But I did achieve SVR. So it was worth it. Just the return of pleuresy is scaring me.
Hang in there
Bobby
As far as the nose it looked like Christmas time up there ... all kinds of red and green stuff up there. But I did achieve SVR. So it was worth it. Just the return of pleuresy is scaring me.
Hang in there
Bobby
You got like the Chippendales chours line or something? inqiring minds would like to know.
jasper
jasper
I have had some days where I hear myself say sx? What sx? And then they come romping back in,
What's the scoop on THAT?
jasper
What's the scoop on THAT?
jasper
Hey there, welcome to our TX Circus family, you'll find something for everyone here!
Ditto to what everyone has said about sx, and they do seem to subside some time between week 8 and 12. Either that or we just get used to them!
Truly, I have had some days where I hear myself say sx? What sx? And then they come romping back in, you just learn to go with the flow and keeping logging in here!
Anyway, welcome to the family :))
Ditto to what everyone has said about sx, and they do seem to subside some time between week 8 and 12. Either that or we just get used to them!
Truly, I have had some days where I hear myself say sx? What sx? And then they come romping back in, you just learn to go with the flow and keeping logging in here!
Anyway, welcome to the family :))
Welcome.You'll be so happy you finally posted.You'll find alot of support here and many new friends that understand what your going through.
Tammy
Tammy
Hi lapis and welcome!
I'm a geno 3 and on week 20. A lot of the really annoying sx got better over time (or I got used to/treated them).
GI burning -- MD gave me sucralfate
abdominal cramping -- usually when next item is about to strike!
diarrhea -- worse at beginning
anal irritation -- mine is in the groin area
moody -- te he he!
nervous -- only when I can't find a bathroom
irritable -- ask anyone
insomnia -- ambien and tylenol pm are my two best friends
headache -- brutal. they come and go. a lot of water helps keep them away.
muscle and joint pain -- not as bad as at first
funny taste in my mouth -- uh huh. try Biotene rinse.
can't tolerate strong tasting foods -- I usually love 5 star Thai hot. Can't handle spice now.
worsening nausea to boot -- I got crystallized baby ginger root in the Asian market and chew on a bit when the waves come.
I also get itchy (scalp, inner ears) and frequent bloody noses. Nioxin shampoo has helped and Ocean nasal spray.
The worst two remain fatigue and irritability. I work in healthcare too and am completely wiped out at the end of each day.
I want to take a break for a while but I still don't know how long I'll be treating yet. It takes all of my strength to deal with people all day and I got nuthin' when I get home.
Stay positive and find friends here. They will be your lifeline through tx.
I'm a geno 3 and on week 20. A lot of the really annoying sx got better over time (or I got used to/treated them).
GI burning -- MD gave me sucralfate
abdominal cramping -- usually when next item is about to strike!
diarrhea -- worse at beginning
anal irritation -- mine is in the groin area
moody -- te he he!
nervous -- only when I can't find a bathroom
irritable -- ask anyone
insomnia -- ambien and tylenol pm are my two best friends
headache -- brutal. they come and go. a lot of water helps keep them away.
muscle and joint pain -- not as bad as at first
funny taste in my mouth -- uh huh. try Biotene rinse.
can't tolerate strong tasting foods -- I usually love 5 star Thai hot. Can't handle spice now.
worsening nausea to boot -- I got crystallized baby ginger root in the Asian market and chew on a bit when the waves come.
I also get itchy (scalp, inner ears) and frequent bloody noses. Nioxin shampoo has helped and Ocean nasal spray.
The worst two remain fatigue and irritability. I work in healthcare too and am completely wiped out at the end of each day.
I want to take a break for a while but I still don't know how long I'll be treating yet. It takes all of my strength to deal with people all day and I got nuthin' when I get home.
Stay positive and find friends here. They will be your lifeline through tx.
Welcome! finding your way can be a challenge, we all start afraid, but get through it.
Read and learn. great support system. Some of us have treated many times are geno types are different so it can be come confusing concernib treatment plans and treatment stories. Listen to your caregivers and find people of knowledge who have your type.
Best wishes and stay strong!
Read and learn. great support system. Some of us have treated many times are geno types are different so it can be come confusing concernib treatment plans and treatment stories. Listen to your caregivers and find people of knowledge who have your type.
Best wishes and stay strong!
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