Hep C Discussion Forum

mallani · mallani

Hi guys, I have seen at least 4 posts where patients have been told they have cirrhosis, on the basis of a palpable spleen and portal hypertension ( PH ). This is without a biopsy or Fibroscan. I'll explain why this may be incorrect. Spleen come in all shapes and sizes. It is usually accepted that 12cms in...

JoAnneh · JoAnneh

www.wellness.com/reference/allergies/intravenous...

mallani · mallani

Hi all, most of my symtoms are related to Rx induced anaemia. With the haemolysis of Riba, the bone marrow depression of Peg and both from the PI, it's no surprise that we get anaemic. The reduction of Hb should be at least 3gms/cc, and the aim is to get down to ~10 . Below that, many Hepatologists will star...

dragonfly · dragonfly

I don't know if anyone here in the UK is becoming increasedly frustrated at the prosect of all these new drugs with hardly any trials here. I understand that there is not that much money around at the moment but surely it's cheaper than liver transplants and cancer treatments. I had to fight for retr...

TazKat · TazKat

the protease inhibitor after 32 weeks of triple/combo treatment can i never ever do the protease inibitor ever again? if not what pipeline drugs do i need to track. i have been on riba/interferon twice & the the interferon/riba/incivik once.. lots of toxic crap put in my body.. thanks for any in...

Karen · Karen

Here is my conversation w/the Clinical Research Coordinator for the Abbott Lab trial. The purpose of the study is to monitor the development and mutation of the Hep C virus. Participates will be notified immediately if the virus becomes resistant. They will do an APRI blood test in lieu of a liver...

52baddog · 52baddog

Need to know if your liver gets a rest from the virus attack, while you are on treatment. If you don't respond to treatment, then does your viral load go up??

zuzusfam · zuzusfam

I have just started weekk #9 on tx and got to wondering about those out there who have done drug therapy more than 1x.Have you guys been on tx multiple times (or mono or double)? Do you get any sort of break between therapies? I am not sure if I could do another round. What was your motivation? Just wonderin...

Corvette Man · Corvette Man

Hi Gang, I am really having a hard time telling others what is going on with me. I am afraid I will scare people away by telling the truth. I dont want people to think I do not trust them as friends. I would almost rather people think I have liver cancer which would explain the chemo therapy. Since my job re...

mallani · mallani

http://www.aidsmap.com/Hepatitis-C-patients-with-cirrhosis-respond-well-to-boceprevir-or-telaprevir-with-careful-monitoring/page/2557617/

JoAnneh · JoAnneh

Anyone on forum have DET at 4 wk on Invicek?? I was UND 2 wk, DET 4, UND 12, 24. According to the Invicek company website I should have been taken off all meds at 4 wk! Since doctors are still learning about these Treatments, I think it's important to be aware And ask your doc tor questions. I am previ...

12Step Guy · 12Step Guy

Are we the Liver in Room 111, Gastric Bypass in 112 or Gallbladder in 114. With all the physical distress the Rx puts us thorough; we are more than our HepC. I too yearn to learn more about C. Yet Im more and more convinced that where I need to be is seeking my spiritual side. When I worked at the big Haze, we ta...

mallani · mallani

http://www.aidsmap.com/Sofosbuvir-and-daclatasvir-dual-regimen-...

Isiscat2011 · Isiscat2011

I'm into week 6 now and thought I'd share a few things that have helped me. Sort of a "favorite things" list for side effects. Would love to read other people's favorites too. 1) Rash and Itching: Aveeno oatmeal bath, benadryl topical cream (extra strength), claritin oral (for those...

sharlot50 · sharlot50

i have a question, im new to the forum and i was wondering if gastric problems are common with hepc? also is it normal to have pain in the upper right stomach with hepc?

J2theB · J2theB

http://www.gilead.com/pr_1757156

JoAnneh · JoAnneh

I am on week 28 of 48, I am now sleeping a lot Like I did in the Beginning w Invicek, Is this the norm? I can only do so much and declining Get together a lot. Watching TV and reading w Some housework seems to Be What I can do.....is this the Norm

bigleftyinaz · bigleftyinaz

http://member.myshaklee.com/us/en/products.php?sku=20960

davesf · davesf

Happy Thanksgiving to all. I'm thankful that aside from this pesky HCV thing I have my health. I'm grateful that it's a treatable disease and that I have wonderful friends on this forum to help me through it. I'm happy that today I get to relax and cook a good meal with my wife Jen who I love. I'll even get to...

mallani · mallani

Since the 1990's, volumes have been written about the differences between Genotype 1a and Genotype 1b. Researchers have gone to extraordinary lengths to try to highlight any differences. This is a summary of what was thought, and how it is today with the new Trial drugs. The geographical distribut...

marktrux · marktrux

I was just wondering how members and the medical community will look back on the current SOC's. Will we look back on them as the lifesavers they appear to be or will we look back on them as some form of barbaric medieval torture that was rushed into production to satisfy the stockholders of Big Pharma...

Suzanneaz · Suzanneaz

I reported a side effect to my Drs office today . what a mistake Instead of just making a note and asking how I was doing, they said go to the ER, they wont see me until 10 days after my4 week blood which I done earlier today before I called my Drs office. So off to the ER, who is having the busiest day theyve...

marktrux · marktrux

I recently had both a HCV fibrosure and ASH fibrosure done. The ASH test came back with a Fibrosis score of .46(borderline F1/F2) and a Steatosis score of 0.66-moderate Steatosis. The HCV test resulted in a 0.46(F1/F2) Fibrosis score and a Necroinflammat Activity score of 0.21(A0/A1). When I went...

mallani · mallani

I think there is too much early reporting in the media, of each stage of the multiple trials of the multiple new drugs. I can understand the DrugCo's want to keep Hepatologists informed of progress. Really, do we care about a Phase 2 trial reporting 100% SVR 4? (Gilead). It might be good for the share p...

Michaele · Michaele

Hi all, hope your all tolerating Tx well , breaks by heart to read of all the pain and misery some are going through: all are HEROs. I just received a Rx toothpaste which is 1.1% sodium fluoride, comes with warning about use in people on low sodium or no sodium diets. 1 gram paste contains 11gm sodium , any...

dragonfly · dragonfly

Hi, Has anyone else apart from Steve in the UK been offered a place on a trial? Regards, Dragonfly x

greenqueen · greenqueen

http://www.hcvadvocate.org/news/newsLetter/2012/advocate1112.html

mallani · mallani

Just a quick one. I've been asked a few times about whether mutations will show up in our VL tests. The answer is 'YES' , for all Roche PCR tests. The 'target' used is a stable strand of RNA transcripted to DNA , present in all genotypes and in all viral mutations.

Karen · Karen

FRIDAY, NOVEMBER 2, 2012 FDA Hepatitis Update - Victrelis (boceprevir) labeling update On November 2, 2012, the Victrelis (boceprevir) package insert and Medication Guide was updated to include postmarketing information about serious acute hypersensitivity reactions observed during bo...

JoAnneh · JoAnneh

Since starting triple tx in May my tongue hurts! And I am on shot 25 of 48! Any suggestions? I use sensitive toothpaste And doc prescribe mouth wash too. Is this staying till I stop tx? I have slept all day after my 25th shot too. To think some stop at 24 Oh I just need to focus and be thankful for any chan...

Topic		Started By	Replies	Views	Last Post
	Enlarged spleen and portal hypertension (Preview) Hi guys, I have seen at least 4 posts where patients have been told they have cirrhosis, on the basis of a palpable spleen and portal hypertension ( PH ). This is without a biopsy or Fibroscan. I'll explain why this may be incorrect. Spleen come in all shapes and sizes. It is usually accepted that 12cms in...	mallani	0	1004	Dec 17, 2012 by mallani
	Medicine that has caused Hep C (Preview) www.wellness.com/reference/allergies/intravenous...	JoAnneh	0	664	Dec 16, 2012 by JoAnneh
	Anaemia is good! (Preview) Hi all, most of my symtoms are related to Rx induced anaemia. With the haemolysis of Riba, the bone marrow depression of Peg and both from the PI, it's no surprise that we get anaemic. The reduction of Hb should be at least 3gms/cc, and the aim is to get down to ~10 . Below that, many Hepatologists will star...	mallani	24	1916	Dec 15, 2012 by 52baddog
	Trials (Preview) I don't know if anyone here in the UK is becoming increasedly frustrated at the prosect of all these new drugs with hardly any trials here. I understand that there is not that much money around at the moment but surely it's cheaper than liver transplants and cancer treatments. I had to fight for retr...	dragonfly	3	829	Dec 13, 2012 by mallani
	if i failed on (Preview) the protease inhibitor after 32 weeks of triple/combo treatment can i never ever do the protease inibitor ever again? if not what pipeline drugs do i need to track. i have been on riba/interferon twice & the the interferon/riba/incivik once.. lots of toxic crap put in my body.. thanks for any in...	TazKat	3	749	Dec 13, 2012 by mallani
	Abbott trial or wait for Gilead (Preview) Here is my conversation w/the Clinical Research Coordinator for the Abbott Lab trial. The purpose of the study is to monitor the development and mutation of the Hep C virus. Participates will be notified immediately if the virus becomes resistant. They will do an APRI blood test in lieu of a liver...	Karen	2	851	Dec 11, 2012 by Karen
	Does your viral load go up, if you are a non-responder to treatment??? (Preview) Need to know if your liver gets a rest from the virus attack, while you are on treatment. If you don't respond to treatment, then does your viral load go up??	52baddog	2	661	Dec 11, 2012 by mallani
	??? about repeat drug therapies (Preview) I have just started weekk #9 on tx and got to wondering about those out there who have done drug therapy more than 1x.Have you guys been on tx multiple times (or mono or double)? Do you get any sort of break between therapies? I am not sure if I could do another round. What was your motivation? Just wonderin...	zuzusfam	4	800	Dec 10, 2012 by TeddyTrout
	Telling others... (Preview) Hi Gang, I am really having a hard time telling others what is going on with me. I am afraid I will scare people away by telling the truth. I dont want people to think I do not trust them as friends. I would almost rather people think I have liver cancer which would explain the chemo therapy. Since my job re...	Corvette Man	24	1421	Dec 10, 2012 by Corvette Man
	Triple therapy in cirrhotics (Preview) http://www.aidsmap.com/Hepatitis-C-patients-with-cirrhosis-respond-well-to-boceprevir-or-telaprevir-with-careful-monitoring/page/2557617/	mallani	1	634	Dec 9, 2012 by JoAnneh
	Did my doctor make mistake on duration?? (Preview) Anyone on forum have DET at 4 wk on Invicek?? I was UND 2 wk, DET 4, UND 12, 24. According to the Invicek company website I should have been taken off all meds at 4 wk! Since doctors are still learning about these Treatments, I think it's important to be aware And ask your doc tor questions. I am previ...	JoAnneh	12	1018	Dec 8, 2012 by JoAnneh
	The liver in Room 111 (Preview) Are we the Liver in Room 111, Gastric Bypass in 112 or Gallbladder in 114. With all the physical distress the Rx puts us thorough; we are more than our HepC. I too yearn to learn more about C. Yet Im more and more convinced that where I need to be is seeking my spiritual side. When I worked at the big Haze, we ta...	12Step Guy	18	1086	Dec 7, 2012 by 12Step Guy
	? Will this be the best combo (Preview) http://www.aidsmap.com/Sofosbuvir-and-daclatasvir-dual-regimen-...	mallani	6	1120	Dec 7, 2012 by Bills
	Side Effects: Favorite Helpers (Preview) I'm into week 6 now and thought I'd share a few things that have helped me. Sort of a "favorite things" list for side effects. Would love to read other people's favorites too. 1) Rash and Itching: Aveeno oatmeal bath, benadryl topical cream (extra strength), claritin oral (for those...	Isiscat2011	48	10427	Dec 6, 2012 by John William
	digestive system problems (Preview) i have a question, im new to the forum and i was wondering if gastric problems are common with hepc? also is it normal to have pain in the upper right stomach with hepc?	sharlot50	24	3121	Dec 5, 2012 by margie
	12 weeks 100% SVR woot woot!!!! (Preview) http://www.gilead.com/pr_1757156	J2theB	6	820	Dec 2, 2012 by mallani
	Is this normal? (Preview) I am on week 28 of 48, I am now sleeping a lot Like I did in the Beginning w Invicek, Is this the norm? I can only do so much and declining Get together a lot. Watching TV and reading w Some housework seems to Be What I can do.....is this the Norm	JoAnneh	6	871	Nov 30, 2012 by JoAnneh
	Shaklee interferon (Preview) http://member.myshaklee.com/us/en/products.php?sku=20960	bigleftyinaz	1	700	Nov 26, 2012 by mallani
	Give Thanks! (Preview) Happy Thanksgiving to all. I'm thankful that aside from this pesky HCV thing I have my health. I'm grateful that it's a treatable disease and that I have wonderful friends on this forum to help me through it. I'm happy that today I get to relax and cook a good meal with my wife Jen who I love. I'll even get to...	davesf	6	775	Nov 23, 2012 by gatekeep
	Geno1a vs. Geno 1b (Preview) Since the 1990's, volumes have been written about the differences between Genotype 1a and Genotype 1b. Researchers have gone to extraordinary lengths to try to highlight any differences. This is a summary of what was thought, and how it is today with the new Trial drugs. The geographical distribut...	mallani	11	1363	Nov 22, 2012 by Cinnamon Girl
	ten years from now (Preview) I was just wondering how members and the medical community will look back on the current SOC's. Will we look back on them as the lifesavers they appear to be or will we look back on them as some form of barbaric medieval torture that was rushed into production to satisfy the stockholders of Big Pharma...	marktrux	4	745	Nov 22, 2012 by Phil G
	What a mistake :( (Preview) I reported a side effect to my Drs office today . what a mistake Instead of just making a note and asking how I was doing, they said go to the ER, they wont see me until 10 days after my4 week blood which I done earlier today before I called my Drs office. So off to the ER, who is having the busiest day theyve...	Suzanneaz	12	4072	Nov 20, 2012 by Mary Jane
	fibrosure test results (Preview) I recently had both a HCV fibrosure and ASH fibrosure done. The ASH test came back with a Fibrosis score of .46(borderline F1/F2) and a Steatosis score of 0.66-moderate Steatosis. The HCV test resulted in a 0.46(F1/F2) Fibrosis score and a Necroinflammat Activity score of 0.21(A0/A1). When I went...	marktrux	3	1983	Nov 20, 2012 by mallani
	New drug information overload! (Preview) I think there is too much early reporting in the media, of each stage of the multiple trials of the multiple new drugs. I can understand the DrugCo's want to keep Hepatologists informed of progress. Really, do we care about a Phase 2 trial reporting 100% SVR 4? (Gilead). It might be good for the share p...	mallani	7	992	Nov 13, 2012 by Bouba
	prevident 5000 plus 1.1% sodium fluoride Rx tooth paste is it safe? (Preview) Hi all, hope your all tolerating Tx well , breaks by heart to read of all the pain and misery some are going through: all are HEROs. I just received a Rx toothpaste which is 1.1% sodium fluoride, comes with warning about use in people on low sodium or no sodium diets. 1 gram paste contains 11gm sodium , any...	Michaele	6	1989	Nov 10, 2012 by Michaele
	Trials UK Gilead (Preview) Hi, Has anyone else apart from Steve in the UK been offered a place on a trial? Regards, Dragonfly x	dragonfly	0	646	Nov 10, 2012 by dragonfly
	HCV Advocate Newsletter - November 2012 (Preview) http://www.hcvadvocate.org/news/newsLetter/2012/advocate1112.html	greenqueen	7	1089	Nov 8, 2012 by Bouba
	Does VL tests pick up mutations? (Preview) Just a quick one. I've been asked a few times about whether mutations will show up in our VL tests. The answer is 'YES' , for all Roche PCR tests. The 'target' used is a stable strand of RNA transcripted to DNA , present in all genotypes and in all viral mutations.	mallani	0	593	Nov 6, 2012 by mallani
	FDA Hep Update (Preview) FRIDAY, NOVEMBER 2, 2012 FDA Hepatitis Update - Victrelis (boceprevir) labeling update On November 2, 2012, the Victrelis (boceprevir) package insert and Medication Guide was updated to include postmarketing information about serious acute hypersensitivity reactions observed during bo...	Karen	1	737	Nov 5, 2012 by Biggyb
	Fussy!! 48 weeks! (Preview) Since starting triple tx in May my tongue hurts! And I am on shot 25 of 48! Any suggestions? I use sensitive toothpaste And doc prescribe mouth wash too. Is this staying till I stop tx? I have slept all day after my 25th shot too. To think some stop at 24 Oh I just need to focus and be thankful for any chan...	JoAnneh	14	980	Nov 5, 2012 by JoAnneh
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