Aa
Riba dose reduction
My weight is 124lbs and my doctor started me with 1200mg which I think was too high. Then on week 4 I dropped my hgb from 135 to 110. She now wants me to drop it to 600mg. I am on triple therapy with Victrelis and am on week 5. Still waiting for first viral load results. I dont think I should reduce it to 600mg so will be taking 800mg. Any advise will be appreciated. My nuse said it will not effect SVR as long as its 50% of the dosage, but to take a chance and go to borderline dose. I am only not sure about one thing; since I just started taking Victrelis two days ago not sure if that will furhter have my Hgb down so in that case maybe I should go for 600mg as she said. And Victrelis is giving me such a bad taste in my mouth...hope it goes away with time.
Alas, spinach and lemon juice are safer recommendations, especially since many people who read our posts here may not know of the risks of oysters.
Yes, I am aware of this potential problem. I made a point of mentioning that I was in Australia, which doesn't have quite the same problems with their waters as the US. Australian testing of all areas of oyster farming are thorough and constant, as Australia is one of the biggest suppliers of oysters around the world.
But, so saying, I am aware of the risk, but I buy from the best suppliers up here and believe that so far, the benefits have outweighed the risks.
Best to keep my recommendations to the spinach and lemon juice, huh?
But, so saying, I am aware of the risk, but I buy from the best suppliers up here and believe that so far, the benefits have outweighed the risks.
Best to keep my recommendations to the spinach and lemon juice, huh?
Asle, I know you have been around here for a while now and are generally quite knowledgeable about HCV, but are you aware that all HCV patients are generally advised to completely refrain from eating raw oysters due to risk of infection with Vibrio vulnificus? It is a big threat off the US coasts, and is also found in other waters. A CDC report on the disease, http://wwwnc.cdc.gov/eid/article/19/8/12-1861_article.htm, cites a study which shows a very high fatality rate of 69%.
To verify if this was also a problem in Australian waters I googled the term "Vibrio vulnifucus Australia" and found an Australian report at https://www.health.gov.au/internet/main/publishing.nsf/Content/cda-cdi2903l.htm that states
"V. vulnificus illness has been reported worldwide and usually occurs in the warmer months. Gastroenteritis associated with ingestion of uncooked seafood (particularly oysters) contaminated with V. vulnificus is rarely reported. However, primary septicaemia may occur in those with chronic liver disease, haemochromatosis, or immune disorders. The case fatality rate is 50 per cent, increasing to 90 per cent in those with hypotension.1 This clinical syndrome includes fever, chills, hypotension, shock, and metastatic necrotizing cutaneous lesions. Thrombocytopaenia and disseminated intravascular coagulation are common complications."
It is not recommended for those with Hepatitis C to eat any raw oysters. I just wanted to make sure you are aware of the risk.
To verify if this was also a problem in Australian waters I googled the term "Vibrio vulnifucus Australia" and found an Australian report at https://www.health.gov.au/internet/main/publishing.nsf/Content/cda-cdi2903l.htm that states
"V. vulnificus illness has been reported worldwide and usually occurs in the warmer months. Gastroenteritis associated with ingestion of uncooked seafood (particularly oysters) contaminated with V. vulnificus is rarely reported. However, primary septicaemia may occur in those with chronic liver disease, haemochromatosis, or immune disorders. The case fatality rate is 50 per cent, increasing to 90 per cent in those with hypotension.1 This clinical syndrome includes fever, chills, hypotension, shock, and metastatic necrotizing cutaneous lesions. Thrombocytopaenia and disseminated intravascular coagulation are common complications."
It is not recommended for those with Hepatitis C to eat any raw oysters. I just wanted to make sure you are aware of the risk.
I am in the last 7 weeks of 48 Triple with Incidioous.(Incivek)
I have been anemic all the way through treatment. At the start of treatment my HGB levels were 146, 3 weeks in, 110. 4 weeks, 89. I started on 1200mg Riba, but we dropped to 800mg.
I was still Detected at wk4, but with a log drop of 6. we dropped the Riba further to 400mg. 3 weeks later (week 8) I was Undetected and have stayed so during treatment.
My HGB levels fell further to 76, and as Procrit isn't used here as a 'rescue' drug, I had a few pints of blood. We stayed like this, HGB levels back up to around 90, til I finished the 3 months of Incivo. Then my HGB levels got to 110, so I increased Riba by a pill a week, and stopped at 1000mg.
HGB levels dropped alarmingly, now at 80 again. Riba reduction to 600mg.
I'm just trying to illustrate that Riba reduction, when under the advice of a cool and great Medical Team, can be the way to go.
The SX of Procrit can be really uncomfortable for some, and even though my team could've had it prescribed if I really wanted it, we managed the anemia mostly through Riba reduction and increases.
Decreasing the Riba gives the body a break.
It's the way I have limped through treatment.
I also eat as much steamed spinach with lemon juice as I can muster. And when I can afford it, big fresh raw Australian oysters. That really has helped. I'm just too broke to afford oysters at the moment, and I really think that is contributing to my anemia.
So, for me, my 2 bobs worth, I go with the Riba reduction, blood tests every couple of weeks, or weekly, just to keep an eye on it.
And as can do said, when you reach Undetection, there is more room to play.
I'm so tired of treatment now. I'm tired of being tired. But I am limping through.
Good luck.
I have been anemic all the way through treatment. At the start of treatment my HGB levels were 146, 3 weeks in, 110. 4 weeks, 89. I started on 1200mg Riba, but we dropped to 800mg.
I was still Detected at wk4, but with a log drop of 6. we dropped the Riba further to 400mg. 3 weeks later (week 8) I was Undetected and have stayed so during treatment.
My HGB levels fell further to 76, and as Procrit isn't used here as a 'rescue' drug, I had a few pints of blood. We stayed like this, HGB levels back up to around 90, til I finished the 3 months of Incivo. Then my HGB levels got to 110, so I increased Riba by a pill a week, and stopped at 1000mg.
HGB levels dropped alarmingly, now at 80 again. Riba reduction to 600mg.
I'm just trying to illustrate that Riba reduction, when under the advice of a cool and great Medical Team, can be the way to go.
The SX of Procrit can be really uncomfortable for some, and even though my team could've had it prescribed if I really wanted it, we managed the anemia mostly through Riba reduction and increases.
Decreasing the Riba gives the body a break.
It's the way I have limped through treatment.
I also eat as much steamed spinach with lemon juice as I can muster. And when I can afford it, big fresh raw Australian oysters. That really has helped. I'm just too broke to afford oysters at the moment, and I really think that is contributing to my anemia.
So, for me, my 2 bobs worth, I go with the Riba reduction, blood tests every couple of weeks, or weekly, just to keep an eye on it.
And as can do said, when you reach Undetection, there is more room to play.
I'm so tired of treatment now. I'm tired of being tired. But I am limping through.
Good luck.
Congratulations for achieving SVR! I just got off the phone with another hep C nurse. I just got to know her personally and I asked her for second opinion. She said as long as i get full dose for the first 4 weeks of Riba reducing it to 50% is ok. She said " we do it all the time". But I am still taking 800mg instead of 600mg. By the way i just weighed myself and realised I lost 5lbs. I am less then 120lbs now. I just want to make it until Dec 5 when I see the nurse and my hgb report, if its up again than I will continue taking 800mg.
When I mentioned to nurse about the article about keeping Riba on higher dose she said nothing is conclusive yet and there are many conflicting reports.
When I mentioned to nurse about the article about keeping Riba on higher dose she said nothing is conclusive yet and there are many conflicting reports.
I agree with can-do-man, but am worried about your nurses attitude. It can be difficult to negotiate that kind of thing, but sometimes it helps to provide them links to the science that backs up what you are saying, or maybe even print it out and give it to them. She may also not want to give you procrit unless your levels drop a lot further, or may choose transfusion before procrit. Some doctors rely first on transfusion, some on procrit, and some use both. When I was on triple tx my HGB dropped as low as 101 and my hepatologist refused to give me procrit unless it dropped below 100. He also didn't even consider dropped my ribavirin from my 1000mg starting dose, but we were both less inclined to drop the dosage because I had already failed two previous treatments and was (am) cirrhotic too. It was a difficult year but I did achieve SVR. I hope you make it too!
Thank you so much for the information. I told my nurse but she doesnt agree and kept on saying 50% of the reduction is ok. My viral load test will be in on December 2. meanwhile she is taking off for Ireland for a week and will see me Dec 5. Since yesterday I am on 800mg without her consent. I also think I should be on $1000mg but am afraid Hgb will go down further without Procrit (by the way is it iron injection). I cant ask her for it as she will not like it that I did not follow her advise. I would change my nurse but here in Toronto (not sure how it works in USA) it will take a while. I am in a pickle.
Yes its first time treatment and I am not cirhottic.
Yes its first time treatment and I am not cirhottic.
I would like to add I also did Victrelis and yes it will lower your HGB, the key is becoming und before to much dose reducing, as for that nasty metal taste. It never really goes away but you do get more used to it.
In trials they started dosage of at least 1000 to 1400. The weight you have given should be 1000 to start, 1200 seems a tad bit much for your weight. Sense you just finished 4 weeks you were just in the lead in stage and should now be on the Victrelis. The goal is to become und by at least the 8 week mark... I disagree with the nurse saying 50% is just as good as you will see below a link I will post talking about this. Besides if it would not effect SVR rates then they would just start everybody at a 50% reduction.
That said once one has become Und then lowering the Riba does not seem to effect those rates, myself I would ask to reduce to 1000 and begin the rescue drug Procrit at least until I had my 8 week results. And und at week 8 means only 28 total weeks of treatment compared to doing 48 weeks if not. Of course I am guessing this is your first time treating and are not cirrhotic. Lowering your Riba after a 8 week und to 800 or even 600 should not effect your outcome. Welcome to the forum and good luck.
Here is the link, Pooh posted a very good article on this in that link.
http://www.medhelp.org/posts/Hepatitis-C/WEIGHT-BASED-DOSING-QUESTION/show/1603484
That said once one has become Und then lowering the Riba does not seem to effect those rates, myself I would ask to reduce to 1000 and begin the rescue drug Procrit at least until I had my 8 week results. And und at week 8 means only 28 total weeks of treatment compared to doing 48 weeks if not. Of course I am guessing this is your first time treating and are not cirrhotic. Lowering your Riba after a 8 week und to 800 or even 600 should not effect your outcome. Welcome to the forum and good luck.
Here is the link, Pooh posted a very good article on this in that link.
http://www.medhelp.org/posts/Hepatitis-C/WEIGHT-BASED-DOSING-QUESTION/show/1603484
Have an Answer?
You are reading content posted in the Hepatitis C Community
Learn about this treatable virus.
Getting tested for this viral infection.
3 key steps to getting on treatment.
4 steps to getting on therapy.
What you need to know about Hep C drugs.
How the drugs might affect you.
These tips may up your chances of a cure.
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
