Aa
Still Undetectable
Hi All, I don't post ofton but I wanted to share my good news with everyone. I finished TX the last day of May 2005, had my 6 month test last week still undetectable!!!!!!
For those that don't remember me I was symtomatic before TX my stats were 43 year old female,genotype 1, 4 millon copies stage 4 grade 8 with bridging fibrosis. Scoring system was the Ishak methad, staging goes from 0 to 6 so I didn't have cirrhosis yet.I was also coinfeted with hep B, also showing undetectable.
My life seems to have been on a rollercoaster ride for the last 2 years.I found out I had hep c&b in Sept. 2003 then in Nov. I had my gallbladder removed and liver biospy done, 4 months later I had to have neck fusion surgery.Finally in June 2004 I started my TX.
I had almost every side in the book and then some,half way through the Tx my Doc said I probably had some fibromyalgia before Tx,if that is what it was it got worse.I also had a retinal hemorrhage behind my right eye,it is rare but I would stress that you get a baseline eye exam before Tx and if you have any eye problems during Tx tell your Doc ASAP.
Eventually it corrected on its own but the Doc did say if I had to treat again my eyes would have to be watched closely.
This Tx can be done,but it is hard on most people,I counted how many pills I was taking,in a months time it was over 600 pills and the shot once a week can you imagine, it was a wonder I could even walk. I do feel like the Tx has left me with lasting sx,I have been going to pool therapy it helps.
Continued!!!
For those that don't remember me I was symtomatic before TX my stats were 43 year old female,genotype 1, 4 millon copies stage 4 grade 8 with bridging fibrosis. Scoring system was the Ishak methad, staging goes from 0 to 6 so I didn't have cirrhosis yet.I was also coinfeted with hep B, also showing undetectable.
My life seems to have been on a rollercoaster ride for the last 2 years.I found out I had hep c&b in Sept. 2003 then in Nov. I had my gallbladder removed and liver biospy done, 4 months later I had to have neck fusion surgery.Finally in June 2004 I started my TX.
I had almost every side in the book and then some,half way through the Tx my Doc said I probably had some fibromyalgia before Tx,if that is what it was it got worse.I also had a retinal hemorrhage behind my right eye,it is rare but I would stress that you get a baseline eye exam before Tx and if you have any eye problems during Tx tell your Doc ASAP.
Eventually it corrected on its own but the Doc did say if I had to treat again my eyes would have to be watched closely.
This Tx can be done,but it is hard on most people,I counted how many pills I was taking,in a months time it was over 600 pills and the shot once a week can you imagine, it was a wonder I could even walk. I do feel like the Tx has left me with lasting sx,I have been going to pool therapy it helps.
Continued!!!
This is the greatest news for me. I will be going for my 6 month post in Jan.06. Everyone tells me that they see a huge change in me. I feel great and almost finished renovating my home. That took a stop when my husband and I started the meds. He still is undetectable. Geno type 2. I am geno type 1B. That information gives me great hope. Thanks
Gina
Gina
yes indeed!!! hope i can enjoy it and not spend the whole time worring i'll get the virus back...
(((SKRUFFKINS)))
(((SKRUFFKINS)))
Corn & Okie, congratulations! Debra, the recovery continues after tx, even past the first year out; there is more hope there.
My son was also told by the Red Cross this summer that he could not give blood. A routine question asked if he lived in a household with someone who had had any of various blood borne diseases; the list included HepC. As he understands it, he would not be an acceptable blood donor for one year after my SVR, having lived in the same household with me. I think the wires were crossed a bit, since I had been SVR for a year already. MN
My son was also told by the Red Cross this summer that he could not give blood. A routine question asked if he lived in a household with someone who had had any of various blood borne diseases; the list included HepC. As he understands it, he would not be an acceptable blood donor for one year after my SVR, having lived in the same household with me. I think the wires were crossed a bit, since I had been SVR for a year already. MN
HEY YOU GUYS NICE TO HEAR FROM YOU BOTH, AND ON THE SAME DAY!!! :0)
(((CORN))) CONGRADULATIONS!!!! OH MY GOSH IS THAT A RELIEF OR WHAT?...yes thanksgiving will be great this year,we have so much to be thankful for...sorry to hear about the rough time on tx you had...don't give up yet on being hopeful that those sx will go away someday...you're only 6 months out and it is just now starting to clear your system...remember they make you wait at least 6 months before getting pregnant so they know it stays in you for that long at least...i pray you really begin seeing those things disapear in the next 6 months...
(((OKIE))) my long lost friend...how are you??? i sure have missed you around here...where have you been hanging out? i bet you're working like crazy now that your off tx...well, whatever ya been up to i hope it's fun! it must be so nice being off tx and having that probability of being clear forever! i pray your next pcr goes as expected...i hope you post your results so we can come to your party!!!
i pray both of you are clear forever and can enjoy the rest of your hep free lives...so nice to hear from both of you...
you guys, chevy's on vacation and wont be back till after thanksgiving...i'm sure she'll be so happy to see your posts!!!
luv ya guys,
sandi
me, i'll be ending treatment finally on new years eve, i've been on full tx since october 2003!!! i'm not sure if ya remember but i had the breakthrough at 7 months into tx and extended over a full year after i started showing clear again...i don't have a great chance of svr but i still have a small chance because of extending tx, so i keep my hopes up...
hope ya stick around for a few days you guys!!!
(((CORN))) CONGRADULATIONS!!!! OH MY GOSH IS THAT A RELIEF OR WHAT?...yes thanksgiving will be great this year,we have so much to be thankful for...sorry to hear about the rough time on tx you had...don't give up yet on being hopeful that those sx will go away someday...you're only 6 months out and it is just now starting to clear your system...remember they make you wait at least 6 months before getting pregnant so they know it stays in you for that long at least...i pray you really begin seeing those things disapear in the next 6 months...
(((OKIE))) my long lost friend...how are you??? i sure have missed you around here...where have you been hanging out? i bet you're working like crazy now that your off tx...well, whatever ya been up to i hope it's fun! it must be so nice being off tx and having that probability of being clear forever! i pray your next pcr goes as expected...i hope you post your results so we can come to your party!!!
i pray both of you are clear forever and can enjoy the rest of your hep free lives...so nice to hear from both of you...
you guys, chevy's on vacation and wont be back till after thanksgiving...i'm sure she'll be so happy to see your posts!!!
luv ya guys,
sandi
me, i'll be ending treatment finally on new years eve, i've been on full tx since october 2003!!! i'm not sure if ya remember but i had the breakthrough at 7 months into tx and extended over a full year after i started showing clear again...i don't have a great chance of svr but i still have a small chance because of extending tx, so i keep my hopes up...
hope ya stick around for a few days you guys!!!
i once heard that there are a few foods that help increase platelets.. for what its worth: chinese red dates (available thru asian food stores) and Okra.
Look, all the best. The good news is also part of the bad news. And what I mean by that is some riba researches suggest that the degree of anemia is related to plasma serum riba levels. So hopefully what that means in your case is that enough riba is currently getting into your system even though you are being under-dosed by weight. (These same researchers challenge weight-based dosing as not being all that accurate.) That said, to give yourself the best chance at SVR, you want more riba and Procrit to make the xtra riba possible. Or, you can move to Sweeden. :)
-- Jim
-- Jim
You and I started TX at almost the same time. I remember most of what you went through.
He is a huge <font size="6" color="red">Congratulations</font
God Bless
TonyZ
I'm on it Monday for sure.
You and I have talked about the second opinion, I'm on that too.
Preciate the advise y'all.
You and I have talked about the second opinion, I'm on that too.
Preciate the advise y'all.
You're a male, over 50, and have had almost a four point drop in Hgb in little over a month. No wonder you're feeling tired.
Remember, it's not just the absolute Hgb number, but how fast it's fallen from baseline.
Procrit takes 2-4 weeks to kick in, so you definitely would want to ask your doc for Procrit concurrent with any increase in riba. The extra riba will also take approx 2-4 weeks to affect your Hgb so hopefully they will balance out.
If your doc is one of those "I don't use Procrit" or "Wait until you're Hgb is under 10" types, then consider getting a second opinion elsewhere.
On a personal note, I ended up in the ER with Hgb 11.4 at week 3 from a pre-tx 14.9. Had I waited until Hgb 10, I dobut if I would have been able to continue treatment without severly reducing my meds. Something you don't want to do, especially during the first 12 weeks of treatment. All the best luck.
-- Jim
Remember, it's not just the absolute Hgb number, but how fast it's fallen from baseline.
Procrit takes 2-4 weeks to kick in, so you definitely would want to ask your doc for Procrit concurrent with any increase in riba. The extra riba will also take approx 2-4 weeks to affect your Hgb so hopefully they will balance out.
If your doc is one of those "I don't use Procrit" or "Wait until you're Hgb is under 10" types, then consider getting a second opinion elsewhere.
On a personal note, I ended up in the ER with Hgb 11.4 at week 3 from a pre-tx 14.9. Had I waited until Hgb 10, I dobut if I would have been able to continue treatment without severly reducing my meds. Something you don't want to do, especially during the first 12 weeks of treatment. All the best luck.
-- Jim
Thanks Veg! My doc is prepared to go down to 30 - but let's hope I don't see that extreme! Hopefully I'll start heading in the other direction soon here - apparently the P-guys do bounce around a bit. At 60 I was lower than the Doc thought I would go - and he's not showing much concern - so it's a wait-see.
Yes I've seen the study results on the larger doses of riba. I dunno, I walked into this somewhat ignorant and just followed the doc's orders.
Hell I had to drive down to his office today to get the 10/3 cbc results to compare. At this point I'm copied on everything going forward.
I'll attempt a call on the subject on Monday. Gotta tell ya though, the kick ass fatigue is setting in this week.
Hell I had to drive down to his office today to get the 10/3 cbc results to compare. At this point I'm copied on everything going forward.
I'll attempt a call on the subject on Monday. Gotta tell ya though, the kick ass fatigue is setting in this week.
Goof:
This is the reply I got from the Nurse I was telling about on the other forum, she's a great source of info, you should frequent her forum, email if you're interested and I will give you the link....
Veggie....what a great idea! I can't go to the mountain so the mountain comes to me sort of thing......LOL....
I think you're going to like this booklet. It's a "doctor's treatment guide"....comes from a site that teaches doctors how to treat Hep C. All articvles written by top hepatologists. The latest volume is always in our education folder in case others are interested. (Also the side effect Booklet)
Page 21, left side of page, talks about what to do for LOW PLATELETS (Thrombocytopenia).
Usually the people who start treatment with a low platelet count are the ones that we see have this low numbers. The Pegasys med insert says that if the platelets go below 50, the Peg dose needs to be reduced.....HOWEVER, many doctors continue giving full dose even when the platelets are lower. I've had patients that had only 33 and were hemophiliacs.
The reason they do this is because the cases of spontaneous bleeding from low platelets are very rare. More experienced doctors have no problem continuing full dose. At one of the speaker's meeting I attended, the speaker asked us to raise our hand if any of our patients had bled because of low platelets cause by Peg and only 2 people raised their hand (there practitioners there from all over the US.)....and one of them was Dr Afdhal who is one of the best known hepatologists. He had a patient spontaneously bleed when the platelets got down to 28 but obviously he treats the sicker patients .
Of course close follow up is very important.... not waiting a whole month to recheck the platelets (tell him to ask the lab to use a pediatric tube when they take blood...that way he doesn loose as much blood.)
Oprelvekin (Neumega) can be used to increase the platelets, HOWEVER, I have not seen it used often. It causes fluid retention on 100% of patients with 77% needing diuretics (to get rid of fluid). Fluid retention would create its own set of problems....mostly cardiac....the heart would have to work harder to pump the extra fluid.....and for someone who has anemia, that would be even worse. It could also increase blood pressure, risk of varices bleeding, ascites (fluid in abdomen).
I think whether his dose is cut will depend on how experienced his doctor is.
Unfortunately, there is no food that increases platelets. I also remind people to try to avoid activities that could result in injury. Let me know if you have any questions.
Silvia
The Clinician's Companion. Volume VII
http://www.projectsinknowledge.com/init/g/1688/1688_Monograph.pdf
This is the reply I got from the Nurse I was telling about on the other forum, she's a great source of info, you should frequent her forum, email if you're interested and I will give you the link....
Veggie....what a great idea! I can't go to the mountain so the mountain comes to me sort of thing......LOL....
I think you're going to like this booklet. It's a "doctor's treatment guide"....comes from a site that teaches doctors how to treat Hep C. All articvles written by top hepatologists. The latest volume is always in our education folder in case others are interested. (Also the side effect Booklet)
Page 21, left side of page, talks about what to do for LOW PLATELETS (Thrombocytopenia).
Usually the people who start treatment with a low platelet count are the ones that we see have this low numbers. The Pegasys med insert says that if the platelets go below 50, the Peg dose needs to be reduced.....HOWEVER, many doctors continue giving full dose even when the platelets are lower. I've had patients that had only 33 and were hemophiliacs.
The reason they do this is because the cases of spontaneous bleeding from low platelets are very rare. More experienced doctors have no problem continuing full dose. At one of the speaker's meeting I attended, the speaker asked us to raise our hand if any of our patients had bled because of low platelets cause by Peg and only 2 people raised their hand (there practitioners there from all over the US.)....and one of them was Dr Afdhal who is one of the best known hepatologists. He had a patient spontaneously bleed when the platelets got down to 28 but obviously he treats the sicker patients .
Of course close follow up is very important.... not waiting a whole month to recheck the platelets (tell him to ask the lab to use a pediatric tube when they take blood...that way he doesn loose as much blood.)
Oprelvekin (Neumega) can be used to increase the platelets, HOWEVER, I have not seen it used often. It causes fluid retention on 100% of patients with 77% needing diuretics (to get rid of fluid). Fluid retention would create its own set of problems....mostly cardiac....the heart would have to work harder to pump the extra fluid.....and for someone who has anemia, that would be even worse. It could also increase blood pressure, risk of varices bleeding, ascites (fluid in abdomen).
I think whether his dose is cut will depend on how experienced his doctor is.
Unfortunately, there is no food that increases platelets. I also remind people to try to avoid activities that could result in injury. Let me know if you have any questions.
Silvia
The Clinician's Companion. Volume VII
http://www.projectsinknowledge.com/init/g/1688/1688_Monograph.pdf
Congratualtions on your SVR status. I'm sorry about your daughter's horrible experience. Mike
Califia I quit taking my vitamins right after the tx I was so sick of all the pills,now I'm back taking my C&E's I also take calcium.
Do you think I should take Sam E or anything else that would be helpful.
everyone- Thank You for all the kind words,like I said ya'll are a great group of people.The Best!!!!!!!!
Love Debra
Do you think I should take Sam E or anything else that would be helpful.
everyone- Thank You for all the kind words,like I said ya'll are a great group of people.The Best!!!!!!!!
Love Debra
First off congrats to you. A rough time you had for sure. So happy for you keep healthy.
I haven't been here for a long time again. I was 2B did 24 week peg/copeg. I finished TX in Feb 2004. Isn't that funny I had to go to oldhippiechicks web page to remember when I completed TX. HA HA, see you do get better and it does become a dream after TX. I'm still healthy and doing all the things I used to do. I only had a 6 month post TX PCR and was clear then. I go next month for Liver Function Test just to see whats up. I had beginning stage Cirrosis when I started TX. For all of you on TX keep up the good work, it is worth all the pain because once it's over it over. Life after TX is great. The only remaining SX I have is brain fog but that may be contribuited to getting older who know or cares Life is good. Kill the dragon.
Love Peace and Happiness
I haven't been here for a long time again. I was 2B did 24 week peg/copeg. I finished TX in Feb 2004. Isn't that funny I had to go to oldhippiechicks web page to remember when I completed TX. HA HA, see you do get better and it does become a dream after TX. I'm still healthy and doing all the things I used to do. I only had a 6 month post TX PCR and was clear then. I go next month for Liver Function Test just to see whats up. I had beginning stage Cirrosis when I started TX. For all of you on TX keep up the good work, it is worth all the pain because once it's over it over. Life after TX is great. The only remaining SX I have is brain fog but that may be contribuited to getting older who know or cares Life is good. Kill the dragon.
Love Peace and Happiness
Chriskid
I have to strongly agree with Jim on the Procrit. You have had a 3+ point drop in, what, 5 weeks? There is a bunch of us anemia people here and it is not a pretty sight. 165lbs+ should be on 1200 mg of riba.
Best to you, Dana
I have to strongly agree with Jim on the Procrit. You have had a 3+ point drop in, what, 5 weeks? There is a bunch of us anemia people here and it is not a pretty sight. 165lbs+ should be on 1200 mg of riba.
Best to you, Dana
I agree about increasing the riba. You should be on a weight-based dose which usually translates to 1000-1200 mg/day for geno 1's and sometimes higher if you weigh a lot. This is especially important during the first 12-weeks of tx. Your Hgb still looks OK but if your doc is concerned then talk to him about starting you on Procrit as you increase the riba. You really want to knock the virus down to non-detectible within the first 12 weeks if at all possible to increase your chances of SVR.
-- Jim
-- Jim
<u>cornsqueezer</u> - Congratulations on reaching SVR status!!!
Alot tough work went into getting that badge. I hope your continued recovery goes well.
<u>chriskid</u> - why are they under-dosing your riba???
You've had a 1+ log drop and are definitely moving in the right direction. If you are able to safely up your riba, you should insist upon it.
TnHepGuy
Alot tough work went into getting that badge. I hope your continued recovery goes well.
<u>chriskid</u> - why are they under-dosing your riba???
You've had a 1+ log drop and are definitely moving in the right direction. If you are able to safely up your riba, you should insist upon it.
TnHepGuy
it is grand isn't it? to be hcv free! a feeling that can't be explained fully.
auggie still has the site up? I got to go update my stats!
stay well
auggie still has the site up? I got to go update my stats!
stay well
please let us know what you find out...I can imagine how outraged you must be, as a parent I would be too!
Give em heck!!!
Give em heck!!!
Congrats Debra, you've earned svr for certain. Be patient with the post tx sides. They can be quite slow to disappear but you will see improvement I'm certain. Frank
This just happened yesterday, it was not the school it was Sewart Blood Center,they go to schools for donations. Last year she was in a differant school she had to feel out paperwork one of the questions must have been about hepatitis, she told them I was on Tx for hep c but that she had been tested and ther wasn't anything wrong with her blood. They wouldn't let her donate and never told her anything else.
So this year she's at a differant school and the same blood center comes to this school for donations they look at the childrens driver licence and tell her she is on a list, that she can't give blood she said she didn't even get to fill out the paperwork.
They gave her a number to their office for me to call, talk about talking to an idiot I don't think this woman as a clue about hep c she said something about it being FDA rules I don't understand all of it yet but I will.I told my daughter I will get her off this list no matter what it takes. vegas777 I don't know if this is a mandate or not but I am going to contact American Red Cross and the CDC and any body else to find out.
Debra
So this year she's at a differant school and the same blood center comes to this school for donations they look at the childrens driver licence and tell her she is on a list, that she can't give blood she said she didn't even get to fill out the paperwork.
They gave her a number to their office for me to call, talk about talking to an idiot I don't think this woman as a clue about hep c she said something about it being FDA rules I don't understand all of it yet but I will.I told my daughter I will get her off this list no matter what it takes. vegas777 I don't know if this is a mandate or not but I am going to contact American Red Cross and the CDC and any body else to find out.
Debra
That's wonderful news, Deb. And here's to those residual sides disappearing as quickly as possible. Are you keeping up a heavy anti-oxidant regime, by any chance? That might just help accelerate the detox. Another six months might see you feeling like a new woman. Congratulations to you!
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