In week 13 of riboferin, interferon and Victrellis......hemoglobin went down each week, lowest was 7 or 70, not sure if it's different in America. I am in Canada...started me on Eprex and lowered my daily riboferin. Seemed to help. Had CT scan on Monday and showed varicose around esophagus and in stomach..... Doctor did scope yesterday and was going to rubber band them......didn't see any around esophagus but grape like ones in stomach...he put me on a blood pressure medicine to make sure they don't burst....this is very new as before I handy Any problems with either stomach Ir esophagus or reflux etc....he is sending me to another specialist who will 'Glue' them ???.....my viral load went from 8 million to 300,000 in 4th week Before starting the victrellis...latest viral load I will get back Monday....platelets non existent, hardly any white cells, red cells look mishapen and my General Practioner is ready for me to stop but has placed his trust in the specialists who know what to expect and what to do...he did say tho, if he sees that the treatment is helping with the hep c but us killing me in other ways he Will intervene. I found out I caught this in a blood transfusion traced back to 1979. I live alone but my daughter does stop by.....any advice or help is greatly appreciated......oh, also my gums have been bleeding, and every morning, this morning in particular my mouth s full of blood and clots......worse lying flat...and advice pl...Ty all so much
First of all you really need to listen to your specialist as a GP does not have the experience to make the call, what your on here in the states is called Procrit to raise your HGB. I am curious if they did a week 8 PCR which would have been with victrelis after week 4 week?
It sounds from what your saying that you might have cirrhosis? As for the bleeding gums that can be caused by low platelets, depending on how low they are would tell if that is a concern. Make sure they are keeping a close eye on your lab work.............. Wishing you the best.
There is some cirrhosis now......the Eprex is what lance armstrong took to put oxygen in cells I think.....that and lowering the riboferin a tad has brought hemo up to the 9's again.......but platelets are Really low and these varicose on the stomach is what is scaring me.....
That is what we call Procrit and it is the right thing to do to boost one's HGB levels so that is good, I would not be to concerned about the other until you hear what the specialist says...
I do wonder though why your doctor is not following protocol when it comes to viral load testing as it is important to have one done at week 4, then week 8 and 12. It seems he skipped the week 8 test and I'm not sure why.
Try not to worry to much, remember don't be afraid to call him if things seem worse........ Hang in there.
"every morning, this morning in particular my mouth s full of blood and clots."
This may be a sign of bleeding varices. When the blood clots it is usually dark and sometimes black and has a jelly like consistency. Bleeding varies are highly dangerous and can cause shock and death. You should go to the nearest large hospital near where you live and tell them you have cirrhosis and portal hypertension. You may need immediate banding (Endoscopic variceal banding (or ligation)) to stop the bleeding.
What are bleeding varices?
Varices are dilated blood vessels usually in the esophagus or stomach. They cause no symptoms unless they rupture and bleed. Bleeding from varices is a life-threatening complication of portal hypertension. Portal hypertension is an increase in the pressure within the portal vein (the vein that carries blood from the digestive organs to the liver) due to blockage of blood flow throughout the liver.
This increased pressure in the portal vein causes the development of large, swollen veins (varices) within the esophagus and stomach. The varices are fragile and can rupture easily, resulting in a large amount of blood loss.
The complications you are describing you have complete cirrhosis and portal hypertension. This is advanced liver disease and hepatitis C treatment can lead to dangerous blood levels. A general practitioner is NOT qualified to treat you as they have little to no knowledge or experience managing liver disease and especially advanced liver disease which if not managed properly can lead to very serious medical issues or death.
"platelets non existent, hardly any white cells"
Bleeding gums and nose bleeds are common signs of low platelets and coagulation issues which is common in advanced cirrhosis. Very low platelets under 25,000 can be dangerous and can lead to internal bleeding which can usually be seen as bruising under the skin.
Since you don't mention the levels of your platelets, WBC, hematocrit, bilirubin, INR are we can only imagine how the treatment is effecting your health.
Once the immediate crisis is over you need to be seen by a gastroenterologist at a liver disease clinic at a minimum or treat by a hepatologist at a liver transplant center. Advanced cirrhosis of the liver is a very serious health condition that requires proper specialize care for the best chance of a good outcome. Improperly treated cirrhosis can be fatal.
Good the help you need now. The longer you wait the worse your liver disease will become.
Adverse Events Common With Triple Therapy in HCV Cirrhosis
Reuters May 22, 2013 - By David Douglas
In cirrhotic patients, triple-therapy against hepatitis C virus (HCV) produces a high virological response rate, but at the cost of a high rate of serious adverse events, French researchers say.
In the French CUPIC cohort, four in ten cirrhotic patients on triple therapy with pegylated interferon and ribavirin plus boceprevir or telaprevir suffered a serious complication (death, severe infection, or hepatic decompensation). This cohort, Dr. Christophe Hézode told Reuters Health by email, consisted of "HCV genotype 1 treatment-experienced patients with compensated cirrhosis."
In a May 13th online paper in The Journal of Hepatology, Dr. Hézode of Universite Paris-Est, Creteil and colleagues say phase III trials have yielded similar results in treatment-experienced cirrhotics and non-cirrhotics, but patients were highly selected.
To evaluate the effect in "real-world" patients, the team analyzed 497 patients who reached at least week 16 in a 48-week triple therapy early access program. All had previously received interferon.
Forty percent (199 patients) had serious adverse events, with 58 patients stopping their treatment as a result. Refractory anemia was also common. Six patients died and another 32 (6.4%) had severe infection or hepatic decompensation or another serious event.
Death or severe complications were related to platelet counts at or below 100,000/mm3 (odds ratio 3.11) and albumin <35 g/dL (OR 6.33).
In patients with both of these risk factors, who accounted for 7.9% of the cohort, the rate of severe complications was 44.1%, "suggesting that they should not be treated with the triple therapy." In the remaining 92.1%, the risk was at or below 7.1%.
In an intention-to-treat analysis in the 292 patients treated with the telaprevir combination, HCV RNA was undetectable in 78.8% at week 12 and 67.1% at week 16. In the 205 given boceprevir, the corresponding proportions were 54.6% and 58.0%.
Although the safety profile of triple therapy is poor in a real-life setting, the approach "was associated with high rates of on-treatment virological response," the authors report.
Overall, they say "Serum albumin level and platelet count should be evaluated to determine the risk/benefit ratio of triple therapy in cirrhotic patients and to decide treatment."
"Patients combining a platelet count of less 100,000 /mm3 and serum albumin below 35 g/L should not be treated with a triple combination," Dr. Hézode stressed.
"The other patients," the team concludes, "could be treated cautiously and carefully monitored."
Commenting on the findings by email, Dr. Savino Bruno of A. O. Fatebenefratelli e Oftalmico, Milan, Italy told Reuters Health that "risk overcame benefit" in a number of patients. However, "a more reliable on-treatment stopping rule... may maximize benefit and minimize risk."
Other research on the CUPIC cohort that was recently presented at the 48th annual meeting of European Association for the Study of the Liver, sheds more light on a related strategy. In that study, by investigators including Dr. Hézode found that independently of cirrhosis severity, baseline concentration of apolipoprotein H was associated with early virological response.
Hi Hector, thank you for writing to me....if you read what I wrote at the beginning....I went into hospital yesterday for banding or ligation by gastro specialist....I had CAT scan on Monday and he saw the varicies, so took me right in....he didn't see any on esophagus but did see grape like ones in stomach area.....he didn't band any but is sending me to another specialist next week who will " GLUE" them......the only chemistry I have ever received back myselfnwas august 23rd...... Albumin 35. Bilirubin 24.
Potassium 3.6. aLT. 70. AST. 91. GGT 77. Alkaline phosphase 140
Hemoglobin 93. Went down to 78 but with Eprex and lowering riboferin it has raised a little to 93
Hematocrit 0.28. RBC. 2.63. WBC. 2.0.
Platelets 71. INR. 1.1. Neutrophils 0.92. Lymphocytes 0.96
Don't know if this helps at all, please advise.......after 4 weeks on only interferon and riboferin, Before Victrellis my viral load went from 8million to 300,000. I will receive tomorrow the newest viral load
I agree with Hector about the possible seriousness of your sypmtoms. In your place, I would already have gone " to the nearest large hospital near where you live and tell them you have cirrhosis and portal hypertension"
A couple quotes from the posted study:
"the safety profile of triple therapy is poor in a real-life setting"
"a more reliable on-treatment stopping rule... may maximize benefit and minimize risk."
We sometimes think that FDA approval is the end of the research and we can close the book on approved drugs. The reality is that things like dose adjustment and 'futility rules' are often only figured out after the fact. The PIs are a wonderful developement in increasing SVR, but we should continue to study and learn if we want to get the most out of them.
Hi and Ty for your kind answer.....it is a holiday here in Canada tomorrow, so doctor and clinics closed......would you Really suggest I should go to emerg. I'm a little worried as I am alone most of the time...I was told to go If vomit blood, have stomach pain etc.....but you have me a tad worried now....appreciate all responses Ty soooooo much
Ty......I really don't want to stop...as it seems if you come this far....you know? But I get what your saying......I don't thunk they are bleeding yet...he gave me nadalol to keep blood pressure down....he is my gastroenterologist ......but there wasn't anything to band or ligate when he went in yesterday....next week he is sending me to this other specialist who GLUES them so they don't burst or bleed.....I do have a nurse Practioner that I can call and will call tomorrow...she is the one who has set this all up with funding and all.....my GP is very concerned but says he will stay out of it so far as these 2 know what to expect with treatment and what to do....but he did say that as soon as he sees that even if is helping with the hepc But is causing severe problems elsewhere , then he will intervene....I am on victrellis which I see is part your name.....are you in treatment atbthe moment....how arebyoun
Hi Sharon, how are you doing? To answer your question, I did Treat with Victrelis, for 28 weeks, and also did the EPO (Eprex/Procrit) shots, from week 9~19, and then reduced my Ribavirin, and stopped the Procrit shots. I did end uo clearing the virus,and my HGB went back to normal, at 6 months post treatment.
Wishing you luck, with your (glueing) procedure, and you are being very brave, my heart goes out to you~ Katy
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