Aa
Blood Pooling in Fingers
If anybody has heard of this I would greatly appreciate any info.. I'm stage 4. Supposed to start treatment in Jan. At this point feel great. Gym and work 6 days a week. Tonight was lifting heavy. Bench and incline dumbbells. Happened to look down and my hands were black from mid palm to fingertips. Actually thought I had picked up dumbbell with grease on it. Washed .. realized it was me. Nice. Googled etc...nothing. Thanks in advance.
There is a meeting in Toronto this weekend with all Canada's hep specialists to discuss treatment coverage, who will be covered and who will not. My doctors office called me with the info .
I also want to, if what you are saying is true, then no treatment for me , I cannot afford to dish out that kind of money. I am p..... off . I will check with my doctor;s office this morning on this. Not a way to start my day Thanks..
My insurance co confirmed it is covered 80% other 20% picked up by drug co, minimal out of pocket fo rme to pay. Guess who wil recieve a call when I get to work My hep c nurse cinfirmed to me there are others she has who are with my ins co and they are paying . I will get back to you about this .
Although both Incivik and Victrellis have been approved in Canada they have not been approved by RAMQ. The cost is approx 6000.00 a month. I have insurance which came to an agreement with the drug company. I have to pay full amount which will be rebated on a monthly basis by my insurance co. I have no idea what would happen if there was no insurance. Good Luck.
Haven't seen it mentioned here but I take a beta-blocker (propranolol / Inderal - 80-mg bid) for my varices which keeps my heart rate down (I work out a lot too and don't even try to get into the upper heart rate zone as it is hard and maybe not so good?). I have had two bleeds (one from each end) of unknown origin and they stopped on their own. My platelets are ~50 and my INR is ~1.2. I have had the largest of my varices banded and go in Monday for an endoscopy and colonoscopy (I asked my hepa "if you only use one probe, do I get to pick which end you start at? She didn't think it was so funny lol)
I am currently taking the platelet stimulator eltrombopag (Promacta) to try to "stabilze" my platelets at 50 before staring triple therapy with Incivek. My last (3rd) Tx was with Infergen (daily interferon shot) and my platelets got down to 6 and they stopped me. I am also doing a 4 week lead of Peg?riba (not the standard for Incivek) before starting the PI to see how my platelets respond so when I shoot the "one arrow in my quiver" as Bill likes to say, I have the best chance!
The eltrombopag is working but the down side is that it is hepatoxic at higher doses, so they are closely monitoring me through an FDA mandated program called Promacta Cares (of course they care, duh - haha).
I think my 'unsucessful treatments' (2x relapser on 48-wk Peg?Riba) actually helped my as I have been stable for many years and no HCC - yet. I have no hard proof, but I think, therefore I am!
If I thought I had time, I would probably wait but I think if I can cure this now if I need a Transplant down the road, it will keep the cirrhosis from coming back which it does a high percentage of the time within 5 years.
Good, no make that Great Luck to you two and we will see each other on the other side ov SVR!!!
Chris
I am currently taking the platelet stimulator eltrombopag (Promacta) to try to "stabilze" my platelets at 50 before staring triple therapy with Incivek. My last (3rd) Tx was with Infergen (daily interferon shot) and my platelets got down to 6 and they stopped me. I am also doing a 4 week lead of Peg?riba (not the standard for Incivek) before starting the PI to see how my platelets respond so when I shoot the "one arrow in my quiver" as Bill likes to say, I have the best chance!
The eltrombopag is working but the down side is that it is hepatoxic at higher doses, so they are closely monitoring me through an FDA mandated program called Promacta Cares (of course they care, duh - haha).
I think my 'unsucessful treatments' (2x relapser on 48-wk Peg?Riba) actually helped my as I have been stable for many years and no HCC - yet. I have no hard proof, but I think, therefore I am!
If I thought I had time, I would probably wait but I think if I can cure this now if I need a Transplant down the road, it will keep the cirrhosis from coming back which it does a high percentage of the time within 5 years.
Good, no make that Great Luck to you two and we will see each other on the other side ov SVR!!!
Chris
By the way , I correct myself . Incivik was approved in Canads also in September the 2 drugs are available here .Now which one to choose.
My appointment the 24th this month is with Wong at the Vic. I started at the General with Clleland. Guy is burnt out. That is when I called a friend who is Dr and got a referral for St Luc"s, a Dr Fournier. I am seeing Wong (which took a while to arrange) to basically confirm I am on the right path with Fournier. I can"t wait till 2013. Wish you the best.
I also am in Montreal andwill be starting treatment also in new year .Victrelis is the only drug approved since September in Montreal , th other drug Incivik will only be approved in a few months . I am seeing hepc specialist at thr Royal Victoria Hosptila=-Dr Wong, I also had an appointment with Dr BaffIths- woman at the Mtl General Hosp. I decided to go with Dr Wong he runs the Hep Clinic , he also just returned from the San Framcisco AASLD conference withall the updates . We will discuss my options whether to treat now or wait for newer drugs coming out in 2013 .Good luck
Could it be Cryoglobulinemia? My husband developed purple spots on his legs and had dark spots on his finger tips at the end of his second treatment for Hep C a year ago. His hepatologist referred him to a dermatologist, who thought it might be Cryoglobulinemia. The dermatologist did some tests and ruled out Cryoglobulinemia, which apparently is often present in patients with chronic Hep C. Here is some info: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001567/
Advocate 1955
Advocate 1955
Mirrors my situation. After 6 months I began pulling strings in frustration. In Canada it is very much who you know. Once I did that things progressed rather quickly. That said I have delayed two months. Mainly for family reasons. . Thanks for your reply.
Progression seems to be much quicker once your at the wrong end of the spectrum I had to wait a total of about 8 mos from diagnosis of compensated cirrhosis to begining of tx. I wish I knew then to stomp my feet and advocate. I did SVR but I know additional liver damage came while everyone had their thumbs up their arses.
My suggestion is get the ball rolling. Get your physicals. Get you meds Get yourself well.
My suggestion is get the ball rolling. Get your physicals. Get you meds Get yourself well.
BTW...Will unsuccessful treatment set me back? As in the way surgery did you. Thanks
I am seeing hepatologist at what is considered the premier Hep C program in Quebec. All in french. Although I am bilingual up to a point the medical terminology is profoundly different. I have an appointment with a McGill hepatologist ( English and transplant center ) in 2 weeks as a second opinion.
I have had a an MRI recently and do regular bloods Alpha Feta Protein. When I said my main Dr (hepatologist) was reluctant to discuss, it was specifically in regards to odds and whether unsuccessful treatment will set me back. She was adamant. "Just do the treatment" In other words I do not have time to **** around if you are not serious. Such is the impression I received.
I am deeply grateful for the time and effort you have taken to reply. As always, insightful and informative. Please rest assured that I in no way take this lightly nor do I under estimate the seriousness of the challenges involved.
My thoughts are with you. In life and meditation
I have had a an MRI recently and do regular bloods Alpha Feta Protein. When I said my main Dr (hepatologist) was reluctant to discuss, it was specifically in regards to odds and whether unsuccessful treatment will set me back. She was adamant. "Just do the treatment" In other words I do not have time to **** around if you are not serious. Such is the impression I received.
I am deeply grateful for the time and effort you have taken to reply. As always, insightful and informative. Please rest assured that I in no way take this lightly nor do I under estimate the seriousness of the challenges involved.
My thoughts are with you. In life and meditation
Hi.
I am glad you have an appointment with “hep doctor”. I assume this is either a gastroenterologist or hepatologist? You really need to see a hepatologist. Why? Because once a person becomes cirrhotic (stage 4) there are many other issues beside hepatitis C that you have to deal with, one being the need for you to have to have your health constantly monitored from now on. I am unfamiliar with how the Canadian Health System works but somehow, someway, you need to have a hepatologist, preferably at a liver transplant center overseeing your care. One example to make my point…as a cirrhotic you must be screened for liver cancer every 6 months with one of the following, ultrasound, CT scan or MRI. If not caught early liver cancer (HCC) can be fatal. You don’t want to ignore liver cancer. I have liver cancer and it is a life changing diagnosis. You do NOT want this to happen to you!
You say your “main doctor” is reluctant to talk to you about this illness. Perhaps it is that she/he knows they are not qualified to do so? If they are a primary care doctor they are not qualified to diagnosis you! Cirrhosis of the liver if it progresse,s can be a fatal disease. This is nothing to be taking lightly. Like you, I had the beginning stage of cirrhosis and never felt better in my life except for fatigue which I thought was related to age. I am 59 ½. This was after almost 40 years of having chronic hepatitis C. But then I had an operation and the anesthesia and caused my cirrhosis to progress to decompenstated cirrhosis, other wise known as End-Stage Liver Disease. At that point (2 years ago now) I was no longer able to work. My fatigue became profound. Just walking a block or two would leave me breathless and exhausted. Then this June 1st I was diagnosed with liver cancer (HCC). Once you have liver cancer the only hope for long term survival is a liver transplant. YOU DON”T WANT THIS TO HAPPEN TO YOU.
As far as treatment…You still have the opportunity to treat and be cured as long as your cirrhosis is compensated. No one can say how long you will be compensated. If could be for many years or you could have an event like I did and decompensate at any time. So you should not have any elective surgeries. Anesthesia is very hard on the liver and can cause rapid advancement of the disease. No alcohol and no pain killers except Tylenol, under 2 grams per day. How must your odds are reduce because you have cirrhosis is all a matter of the degree of your liver disease. A hepatologist will give you a full workup to determine exactly how damaged your liver is. So I assume you have genotype 1 hep C as you mention VICTRELIS? One test you should ask for is the IL28B genomic test. It could give you an idea of your chances of curing your hep C. I would suggest you focus on all the options you still have to cure yourself of hep C and stop the progression of your liver disease. I would give anything to be in your position with the new drugs that are available. Cirrhotic’s have never had a better chance of curing their hep C.
In summary: You need to try treatment. It may be your last chance to live a full and healthy life.
From where I stand I would make curing your hep C the number one priority in your life. I know this is hard to understand when you feel well. But you need to think about this. We are talking about your very life here. To develop End-Stage Liver Disease, become disabled, and deal with all of the complications of liver disease and either liver failure or liver cancer will destroy most thing that you take for granted in your current life and a liver transplant is a major life changing event not only for yourself but everybody around you.
Don’t take no for an answer. You must advocate for yourself. Don’t let any one get in the way of you getting the best diagnosis, treatment you can. You very life may depend on it.
Best of luck.
Hector
I am glad you have an appointment with “hep doctor”. I assume this is either a gastroenterologist or hepatologist? You really need to see a hepatologist. Why? Because once a person becomes cirrhotic (stage 4) there are many other issues beside hepatitis C that you have to deal with, one being the need for you to have to have your health constantly monitored from now on. I am unfamiliar with how the Canadian Health System works but somehow, someway, you need to have a hepatologist, preferably at a liver transplant center overseeing your care. One example to make my point…as a cirrhotic you must be screened for liver cancer every 6 months with one of the following, ultrasound, CT scan or MRI. If not caught early liver cancer (HCC) can be fatal. You don’t want to ignore liver cancer. I have liver cancer and it is a life changing diagnosis. You do NOT want this to happen to you!
You say your “main doctor” is reluctant to talk to you about this illness. Perhaps it is that she/he knows they are not qualified to do so? If they are a primary care doctor they are not qualified to diagnosis you! Cirrhosis of the liver if it progresse,s can be a fatal disease. This is nothing to be taking lightly. Like you, I had the beginning stage of cirrhosis and never felt better in my life except for fatigue which I thought was related to age. I am 59 ½. This was after almost 40 years of having chronic hepatitis C. But then I had an operation and the anesthesia and caused my cirrhosis to progress to decompenstated cirrhosis, other wise known as End-Stage Liver Disease. At that point (2 years ago now) I was no longer able to work. My fatigue became profound. Just walking a block or two would leave me breathless and exhausted. Then this June 1st I was diagnosed with liver cancer (HCC). Once you have liver cancer the only hope for long term survival is a liver transplant. YOU DON”T WANT THIS TO HAPPEN TO YOU.
As far as treatment…You still have the opportunity to treat and be cured as long as your cirrhosis is compensated. No one can say how long you will be compensated. If could be for many years or you could have an event like I did and decompensate at any time. So you should not have any elective surgeries. Anesthesia is very hard on the liver and can cause rapid advancement of the disease. No alcohol and no pain killers except Tylenol, under 2 grams per day. How must your odds are reduce because you have cirrhosis is all a matter of the degree of your liver disease. A hepatologist will give you a full workup to determine exactly how damaged your liver is. So I assume you have genotype 1 hep C as you mention VICTRELIS? One test you should ask for is the IL28B genomic test. It could give you an idea of your chances of curing your hep C. I would suggest you focus on all the options you still have to cure yourself of hep C and stop the progression of your liver disease. I would give anything to be in your position with the new drugs that are available. Cirrhotic’s have never had a better chance of curing their hep C.
In summary: You need to try treatment. It may be your last chance to live a full and healthy life.
From where I stand I would make curing your hep C the number one priority in your life. I know this is hard to understand when you feel well. But you need to think about this. We are talking about your very life here. To develop End-Stage Liver Disease, become disabled, and deal with all of the complications of liver disease and either liver failure or liver cancer will destroy most thing that you take for granted in your current life and a liver transplant is a major life changing event not only for yourself but everybody around you.
Don’t take no for an answer. You must advocate for yourself. Don’t let any one get in the way of you getting the best diagnosis, treatment you can. You very life may depend on it.
Best of luck.
Hector
you seem like you are an excellent candidate for treatment. in my very unscientific survey, folks that were physically active prior to treatment and also are emotionally stable seem to do much better than those that are not as fit emotionally and physically.
blessings
eric
blessings
eric
i figured i had no option, but to treat. liver disease would likely kill this body in a few years via cancer, ruptured varices or end-stage liver disease. also as i got sicker i would be a burden to my loved ones and society, and i would no longer be able to care for the other beings that i have a desire to help. I am 7 weeks in and undetected. i would do it again in a heart beat.
eric
eric
my platelets were bouncing aroung 100 before i started treatment 7 weeks ago. my doctor was emphatic that i have an EGD to check for varices. She said they are seeing patients with esophageal varices that do not cause the patient any problems during treatment, but then after a successful treatment the varices ruptured. at this point they do not know why this is happening. as Hector stated a ruptured varice can become a life-threatening emergency. at the university clinic where i treat they are checking all their patients with portal hypertension and cirrhosis before treatment. if the patient has Grade 2 or 3 varices, they are treating the varices prior to treating the HCV. My varices were only Grade 1, so i lucked out.
to view an abstract entitled " Physical exercise increases portal pressure in patients with cirrhosis and portal hypertension" go to http://www.ncbi.nlm.nih.gov/pubmed/8898644
blessings
eric
to view an abstract entitled " Physical exercise increases portal pressure in patients with cirrhosis and portal hypertension" go to http://www.ncbi.nlm.nih.gov/pubmed/8898644
blessings
eric
I have an appointment 24th this month with a hep Dr to get second opinion and get some questions answered . My main Dr has been fine but reluctant to discuss certain matters that are of a concern to me. One being as to what the odds are for success with Stage 4. I get "Just Treat" Fair enough, I have done my own research and have a fair idea.
The second concern I have is.....If the treatment is not successful am I then worse off than when I started? My main Dr will not answer this either, once again I get ..."Just do the treatment"
Thanks in advance.
The second concern I have is.....If the treatment is not successful am I then worse off than when I started? My main Dr will not answer this either, once again I get ..."Just do the treatment"
Thanks in advance.
Outstanding explanation. Makes sense. I am aware of portal hypertension. and varices . I was supposed to have gastroscopy and bone scan. but requisition was lost at hospital. ( All in French ..my aching head ) They said no problem as we are going forward with treatment. I was supposed to start treatment with Victrellis this month but delayed till after Xmas. Figured if I have had this for thirty plus years i and two months make a difference I am buggered anyway.
Thank you to all for replies. Such a marvelous resource.
Thank you to all for replies. Such a marvelous resource.
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.
105,000 platelets are plenty. You shouldn't have bleeding under your skin unless you have a high (International Normalized Ratio) (INR) value and are having long times when clotting your blood. If you are bruising under your skin you need to notify your doctor as this could be an indication liver disease problems.
I am not sure what you have done about your cirrhosis as you don't say.
Are you familiar with portal hypertension? Has your doctor mentioned this? This is a complication due to cirrhosis. If you have cirrhosis your liver is scared throughout. Portal hypertension is caused by the blood that normally flows up from the lower parts of your body through the liver and back to your heart. Well if you can imagine instead of your liver being blood rich your liver now prevents the flow of blood because of the amount of scar tissue in your liver. So the blood finds other routes to flow back up and into your heart. These veins don't normally carry this much blood. So the pressure builds up. Like trying to put a lot of water through a thin water hose. This is called portal hypertension. This process enlarges the veins in your esophagus and in your intestines. If the pressure becomes too high for the veins to handle, they burst and then a cirrhotic will either vomit blood or defaecate blood. This can be a life-threatening condition.
Have you been checked for varices with an endoscopy?
Do you have them. How advanced are they?
Why is this important?
You mention you life heavy weights. Lifting heavy weights increases blood pressure. Depending on how advanced your liver disease is, weight lifting can cause varices to bleed. While you are compensated it is probably not a problem, but in the future unless you stop the progression of your cirrhosis, it will be a serious issue. But at that point you will probably be too fatigued to lift any heavy weights at all. And if you progressed to advanced End-stage Liver Disease you will lose all of your muscle mass. You should take to your doctor (hepatologist) about this and let him know you are doing this.
Are you planning on treating your hepatitis C soon?
I hope so you appear to be well enough to still have that option.
Hector