I have stage 4 and my platelets have been running between 120-140 for the last 15 years. It is not a good way to monitor progression. Why would you wait to treat if you are a Stage 3/4? It's time to treat now or at least when the protease drugs are available in 2011.
Sorry, I see you have done treatment before. As a relapser or non-responder, you should wait for telaprevir or boceprevir ujnless you are geno 3 in which case the new drugs won't really help you. You shouldn't progress so fast that itg will too late to wait for the new drugs.
I wouldn't go by what Susie says if I were you. No body can say how fast a person's liver damage will progress. We do know that as we get older, the damage progresses faster, especially after 50. Do you know what stage you are at or are you just guessing that you have progressed this far?
Sorry to say this, but you need a biopsy to see where you are now before you can make an informed decision. We need to remember that there is no guarantee that the new PIs will be out next year.
As of '08 biopsy showed fret was stage 0. No way he's anywhere close to cirrhosis.
Also he is not a relapser or non responder, he had to stop triple therapy early due to other issues.
Fret, if you're worried about yourself and those platelets tanking I doubt you'll have anything to worry about.
"I wouldn't go by what Susie says if I were you. No body can say how fast a person's liver damage will progress."
Dianne, everyone is an adult here and no one talks in absolutes. Chances are more than not a person with hep C, even cirrhosis liike myself, will not progress so fast that they can't wait a few months or even a year. We all know that anything can happen regarding an unapproved drug, or a person's liver, but again, chances sre excellent thst the drug will be available in the early to middle of 2011. At the Vertex Advocacy meeting on Nov. 3rd, we were told that everything is on track and ready to go.
Thanks Trinity, I didn't know any of that. Was Fret on one of the protease as his 3rd drug?
Well Trinity, I agree with you, if he was a stage 0, he likely has many many healthy years ahead. He may never progress if he takes good care of himself. I wonder if there is a resistance that builds up with Boce. I know that with telaprevir, if you are a geno 1b, the resistance if you don't clear, is very weak. It takes about 2 years and geno 1b patients can use the drug again like when the protease and poolymerase are combined, without interferon. I wonder if it is the same with Boceprevir? This is the first thing that has ever been better for us genotype 1b's.
"Will they (platelets) go down in a dramatic manner or can a person actually monitor their platelet levels and get on tx when it gets to a certain number? "
The reduction of platelets is cause by an enlarged spleen which develops do to hypertension. There is no coordination between HCV and portal hypertension. HCV caused liver disease and fibrosis which results in portal hypertension. If you platelets start going down below 100,000 then you have advanced liver disease. Waiting until you have advanced liver disease will make it more difficult for treatment to achieve SVR.
The obstructed flow of blood through the portal vein (portal hypertension) causes the spleen to enlarge by causing an increase in pressure inside the vessels of the spleen. The spleen stores red and white blood cells and platelets (fragment of cells that are used to clot blood). An enlarged spleen traps platelets lowering levels in the blood which can lead to the inability of blood to clot. This is called Thrombocytopenia and is common in people with cirrhosis. You don't necessarily have any physical symptoms with an enlarged spleen.
Is there a better way to guide the progression of HepC than a liver biopsy?
There is no progression of HCV unless you mean viral load which can be monitored with a HCV RNA test. The progression is of liver disease is what is import not HCV. HCV does not kill you. It the the liver damage caused by the virus that can be fatal if it progresses to End-Stage Liver Disease. Biopsy in the US is the only way to stage liver disease. I guess in Europe they use fibroscan also.
The generality is that platelets decrease with progressing liver cirrhosis, but that's a rule of thumb, NOT a given in all cases. As example, my husband was stage 4 with liver cancer and still had normal platelet counts.
By no means is 'watching platelets' a good way of gauging liver health. Also, remember that many other conditions can contribute to low platelets, and sometimes people have low platelets for no identifiable cause. When low platelets are seen in conjunction with other symptoms of cirrhosis it can further reinforce a suspected diagnosis, but it sure is not a diagnostic test by a long shot.
My feeling is that it can help in the assessment of already existing cirrhosis but has no utility in assessing pre-cirrhotic damage.
my platelets are at 92 last two bloodworks i had....and my liver biopsy was stage 1-2 a year ago...hope my biopsy was accurate..
my platelets are dropping faster than a prom queens dress on prom night...from 99k in march, to 89k in september. i'm stage 3 prolly 4, geno 1a, i hope to start soc tx in a couple of weeks. i was told that if they get around 40k, i will have to stop tx. the good news is that i had an IL28-B DNA test that shows i am a CC allele type6y. this is the best group to be in for standard treatment; 80% cure rate.
as previously stated, we are all different, but as time goes by, the disease does not get any better....i can't wait to start treatment....i'm excited.
Fret, did you ever post what arm you were in? I just scanned your posts but it may have been there and I missed it.
Also if you got Boceprevir have you heard anything about your mutational analysis?
JAY0914, did your doc suggest a CT to follow up on those labs? Maybe he will do so next time if it continues.
My biopsies came back stage 1-2 but my labs pushed doc to do more imaging revealing a cirrhotic liver. It is not the norm but can happen. As Eureka said, platelets alone are probably not enough to worry too much, but in combination with other out-of-range labs would warrant the additional imaging.
I never asked what arm I was in but I'm pretty sure I was given the boceprevir. I'll ask when I go back in January. I am not planning on monitoring my platelets at all but I need to have a liver biopsy soon. When I had some blood work done around a month ago my platelets were 326 but 6 months ago they were only 127. My belly is huge but I don't have ascities I am just getting old and fatter than I've ever been in my life. It's not funny anymore at all, once you stop working out it's really hard to start back up. Gotta force myself, that's all to it!! I was wondering about the platelets because I know some ppl who have never had a biopsy done and I was just wondering how they were watching the progression of their disease. There must be tons of ppl who are fine and don't even notice anything wrong at all and then bam! It's too late to tx! Terrible and a very sad way to go!
The point is what is causing the low platelet count if people are looking at their platelet numbers. There are many many causes for low platelet counts. BUT if we are taking about low platelet count and HCV then we are talking about "Splenic sequestration" which results of the enlargement of the spleen. When the spleen enlarges, it can retain (sequester) more than the usual amount of platelets. Common causes of low platelet count (thrombocytopenia) due to splenic enlargement include advanced liver disease (cirrhosis, for example, from chronic hepatitis B or C).
So how do we know if this is happening. A doctor can often feel (palpate) the lower edge of an enlarged liver below the right rib cage and feel the tip of the enlarged spleen below the left rib cage. OR have a ultrasound done. It will show an enlarged spleen.
What causes an enlarged spleen?
The reduced flow of blood through the portal vein (portal hypertension do to the scarring of the liver) causes the spleen to enlarge by causing an increase in pressure inside the vessels of the spleen. The spleen stores red and white blood cells and platelets (fragment of cells that are used to clot blood). An enlarged spleen traps platelets lowering levels in the blood which can lead to the inability of blood to clot. This is called Thrombocytopenia and is common in people with cirrhosis. You don't necessarily have any symptoms with an enlarged spleen, but you may feel pain or a heaviness in the upper left hand side of your abdomen.
All of which is the result of the Hep c virus having caused liver damage over many many years.
It is very common for the first sign of cirrhosis that is stumbled upon by accident to be a low platelet count as it is routinely measured in the CBC blood test. As we all know HCV antibody, RNA, albumin, creatinine and many other tests that indicate HCV and liver disease are not performed on a routine basis.
Your knowledge base and the lucidity of your expressing such knowledge is remarkable IMO. I'm actually embarrassed by my ignorance unpacking the dynamics of cirrhosis (and I have a history in health care). Certainly some of my interference is neurologic, e.g., "what did I just say" etc. We seem to share similar pathology paths with dissimilar abilities to comprehend and make comprehensible the myriad reaches of cirrhosis. Yea: I know I have a rep for verbal (and sometimes written) intelligence in my world but mine is more abstract and to a degree obscures all the swiss-chessiness of my ammonia head. Man: to wake up with lucidity and clear sclera: What that must be like. "What was I saying again?" d
I appreciate your nice comments very much.
Anything I know is from personal experience and reading. Funny how having decompensated cirrhosis can concentrate the mind. What mind I have left. I just happen to have a personality that needs to understand what is happening to me and what will happening the future. It makes it less scary for me. So you can say I am driven to know what I know. No rocket science here.
The swiss cheese comment was something I remember Norman Mailer (the writer, politician, boxer, NY intellectual) said in the late 60s early 70s. I always thought it was a good metaphor/image and it stuck in my mind for 40 years. Then as I was thinking about encephalopathy it flashed in my mind and I thought it was a perfect description of those blank spaces that happen during a HE episode.
Good luck to us both, and the rest of those afflicted of course. My best back.d
My platelets went down in 2000, followed by HCV DX. No mention of TX. This year, March they were 99, May 72, time of Biopsy about a month ago, 62. I am so grateful for the biopsy as all prior testing showed cirrhosis. Biopsy put me at Stage 3 and provided even more hope for successful TX.
With platelets that low, do you have bleeding problems?
Huh my platelets are high at 427 k and I am stage 3 week 15 of tx. I have no spleen wonder if that's got anything to do with it. Had transfusion when I had that spleen out pre '92 and another pre '92. I'm thinking that is how I got HCV as it was my most likely risk exposure other than everyday livein', but there is no carbon dating.
My platelets were 326 last time so I think I'm doing pretty good except I swell like a dang balloon. It sux like there's no tomorrow and last Saturday I saw a new doctor about it but I was told again that it's because of my HepC. Problem is, I started swelling prior to my dx of HepC. If I didn't swell up and feel like I need an energy boost daily I could feel normal again, well normal for me. lol