Hi Sue! All of my hematologists thought the flushing was due to polycythemia vera, but without the JAK2 mutation, you're highly unlikely to get a diagnosis. It's complete bullshit. I've had my blood tested for the JAK2 mutation and also had a bone marrow biopsy to check for the mutation, but both came back negative. Something like 95% of people with PV have this mutation so it is now a major diagnostic criteria from WHO. However, check this shit out! I saw a post from another thread here on Mayo Connect where someone mentioned that they had their DNA done through 23andMe and uploaded their raw data to a site called Livewello. Livewello searches through all of your raw DNA data and produces a variant report for you. You can actually get thousands of variant reports. Anyway, I ran a report on my DNA to check for any variants in the JAK2 gene and looky looky...hope this works.
As soon as i got. The results from my bloodwork. That told. Me. I was clear of the virus i felt. Good! I fi ished all of my harvoni pills 1. A day that is the beauty of harvoni! You should start to feel ready. After. Your treatment get active and forget about your disease! It is over. Live life love. Life!
That's an outstanding outcome. I'm now in search of a MD in the CT., MASS. area for an assessment. Although my blood tests look fine and only the MRI showed damage my condition is deteriorating far worse than I ever thought after a year past treatment. I'm truly happy I'm hearing positive results from many..
I had hepatitis c (genotype 2a) for 23 years and towards the end was very sick (it was irritating how many health care workers told me that it wasn't from the hep c that I felt sick because hep c has no symptoms. That is not correct, especially once you have had it that long!). I was treated in 1997 with interferon and Ribavarin, 3 shots a week for 9 months. I am now in remission, virus undetected. They did not say cured back then. My son, aged 36, contracted the virus from a probe that was inserted in his scalp during his birth and was also treated with interferon and Ribavarin. Neither one of us has felt 100% since treatment. He told me he had research this online and had found a mao clinic paper about post-interferon syndrome, but couldn't find it again later. (He thought it had been purposefully taken down so that people wouldn't file lawsuits against the makers of the drugs, and so that others would not shun treatment. I'm not sure. But I can not find that paper either, and would love to.) In any case, I was pleased to come across post by others who have not felt well since treatment, and mentioning a diagnosis of post-interferon syndrome, be wise it is validating to those of us who are doctors have dismissed even the notion of it. Does anyone know where I can find that paper, or anything about post-interferon syndrome? Although I am so glad to have cleared the virus, I am still, this many years later, suffering from severe fatigue, some brain fog, achy muscles, back pain and some gut issues, which I did not have before treatment. Any information about this would be great.
I'm full term military and a retired SGM, I've used more second effort in 10 minutes in the field than most will use in 5 life times. To suggest an enormous battery of additional drugs after being literally desimated by Harvoni was a suggestion I actually prayed I'd never here of from any site let alone this one. With 2 PhD 's for children, both told me my possible end result due to the fact that once again $$ comes before care in the USA,, I suppose what's next is another thank me for my service,,, please dont.
I treated for hep c 3 years ago and had terrible side effects from the drug Harvoni, I am still suffering with the following symptoms,,Chronic fatigue, dermatitis issues, weight loss of over 60 pounds, head aches, tinnitus, neuropathy of the hands and feet, gastrointestinal problems digesting food, nausea , vomiting, brain fog and severe back pain. I am wondering if anyone else has experienced the same reaction to Harvoni? I have lost my quality of life and no one can figure out just what is going on with my body. It's also very difficult to find a Doctor who will admit this drug was too strong for some people and the damages it has caused many of us. I would love to hear from anyone else out there who is also dealing with life after Harvoni.
I treated for hep c 3 years ago and had terrible side effects from the drug Harvoni, I am still suffering with the following symptoms,,Chronic fatigue, dermatitis issues, weight loss of over 60 pounds, head aches, tinnitus, neuropathy of the hands and feet, gastrointestinal problems digesting food, nausea , vomiting, brain fog and severe back pain. I am wondering if anyone else has experienced the same reaction to Harvoni? I have lost my quality of life and no one can figure out just what is going on with my body. It's also very difficult to find a Doctor who will admit this drug was too strong for some people and the damages it has caused many of us. I would love to hear from anyone else out there who is also dealing with life after Harvoni.
I took harvoni for 3 months, missing only 1 dose which I made up quickly. No side effects at all. Tiredness was equal to tiredness prior to taking. I received my 2 month blood test after treatment & I AM CURED!!
I took harvoni for 3 months, missing only 1 dose which I made up quickly. No side effects at all. Tiredness was equal to tiredness prior to taking. I received my 2 month blood test after treatment & I AM CURED!!
I have Hep C geno type 1b most likely contacted due to blood transfusion in 1979 had interferon ribavirin horrible side effects and did not work now after all these years I have been diagnosed with early Cirrhosis just started a 12cweek treatment on day 6 with EPCLUSA 400/100mg tablet so far side effects are very minimal have a dull headache for a couple of hours after I take at 9:00AM daily and I feel chilly and more fatique. I can deal with this just want to get healthy Anyone else have any experience with EPCLUSA ?
I took harvoni beginning Jan 2015...12 weeks was cured. I'm wondering if you have had any other health problems, such as cyst/tumors on pancreas,liver or lungs. I only know of one other person that took harvoni and we both developed tumors...could be a coincidence...I don't know him personally (friend of a friend) I just had to have part of my pancreas and spleen removed. I'm trying to find out if it had anything to do with the drug ???? Please let me know.
I developed a cancerous tumor on my pancreas also and had to have part of my pancreas and my spleen removed, they also took my gallbladder for some reason (was having no issues there) but six years later, I'm now having big problems with my sugar levels and have lost 22 pounds. I'm a small person to begin with so of course I'm trying to get that weight back. I do believe the harvoni caused the tumor and I also noticed they no longer advertise for harvoni. Is it still even on the market??
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I've never heard of WHO or JAK2, must research.
That's an outstanding outcome. I'm now in search of a MD in the CT., MASS. area for an assessment. Although my blood tests look fine and only the MRI showed damage my condition is deteriorating far worse than I ever thought after a year past treatment. I'm truly happy I'm hearing positive results from many..
I'm full term military and a retired SGM, I've used more second effort in 10 minutes in the field than most will use in 5 life times. To suggest an enormous battery of additional drugs after being literally desimated by Harvoni was a suggestion I actually prayed I'd never here of from any site let alone this one. With 2 PhD 's for children, both told me my possible end result due to the fact that once again $$ comes before care in the USA,, I suppose what's next is another thank me for my service,,, please dont.
I treated for hep c 3 years ago and had terrible side effects from the drug Harvoni, I am still suffering with the following symptoms,,Chronic fatigue, dermatitis issues, weight loss of over 60 pounds, head aches, tinnitus, neuropathy of the hands and feet, gastrointestinal problems digesting food, nausea , vomiting, brain fog and severe back pain. I am wondering if anyone else has experienced the same reaction to Harvoni? I have lost my quality of life and no one can figure out just what is going on with my body. It's also very difficult to find a Doctor who will admit this drug was too strong for some people and the damages it has caused many of us. I would love to hear from anyone else out there who is also dealing with life after Harvoni.
Hello @ramo, I'm sorry to hear about the side effects you are experiencing. Here is some information I've found about Harvoni.
MedicalNewsToday -- Harvoni Side Effects:
-- https://www.medicalnewstoday.com/articles/326075.php#side-effects
Mayo Clinic has some information that you may find helpful for coping with side effects of hepatitis C drugs:
-- https://www.mayoclinic.org/diseases-conditions/hepatitis-c/in-depth/hepatitis-c-drug-side-effects/art-20121674
While we wait for other members who have used Harvoni for treatment, has your doctor offered any suggestions to help cope with the side effects?
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2 ReactionsThanks so much for all this information. I am hoping to find other people who are also suffering side effects of Harvoni.
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3 ReactionsI took harvoni for 3 months, missing only 1 dose which I made up quickly. No side effects at all. Tiredness was equal to tiredness prior to taking. I received my 2 month blood test after treatment & I AM CURED!!
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1 ReactionCheap Harvoni - onlinecheappills.com
I have Hep C geno type 1b most likely contacted due to blood transfusion in 1979 had interferon ribavirin horrible side effects and did not work now after all these years I have been diagnosed with early Cirrhosis just started a 12cweek treatment on day 6 with EPCLUSA 400/100mg tablet so far side effects are very minimal have a dull headache for a couple of hours after I take at 9:00AM daily and I feel chilly and more fatique. I can deal with this just want to get healthy Anyone else have any experience with EPCLUSA ?
I developed a cancerous tumor on my pancreas also and had to have part of my pancreas and my spleen removed, they also took my gallbladder for some reason (was having no issues there) but six years later, I'm now having big problems with my sugar levels and have lost 22 pounds. I'm a small person to begin with so of course I'm trying to get that weight back. I do believe the harvoni caused the tumor and I also noticed they no longer advertise for harvoni. Is it still even on the market??