I am a 72yo retired ICU/ER Nurse(also an Electrical Engineer) I had Hep C from a dirty needle stick in ICU (1990) Over the next 25yrs I battled Hep C with the only drug availably...Interferon. Did not work. Few years later tried pegulated interferon. Worked but I could n't keep Hgb > 8. Not good. Kept passing out. Long story short, a drug finally came out that was 99% effective...Harvoni(My name is Harv. The stuff was made for me. lol However, it had already beat up on my liver for 20 some odd years and left me with stage 4 cirrhosis. There is no stage 5. Heretofore, I had been "compensated" with no clinical symptoms and good lab work. Then(about 10 days ago I twice passed a large amount of tarry black liquid stool. As a nurse I immediately knew it was an upper GI bleed. Also as a nurse, I knew that this bleeding could be(probably is) the results of Portal Hypertension/cirrhosis..
After gastro. MD informed me that I have GAVE. Gastro Atrial Vascular Ectasia or "Water Mellon Belly". Got an appointment in 7 weeks. I have between now and then to generate all my relevant questions.
PS They took me off my Prodaxa (Anticoagulant.) I was taking for previous a-fib. Have had one previous stroke from a-fib. Difficult decision....hmmmm….Stroke or bleed to death. What do you guys
As I understand , there are several other medical issues that are associated with GAVE as CalGal and you stated . By the way, your guys synoptis was very informative and accurate. To add to this list I submit:
1. Sjögren's (pronounced "show grins") syndrome is a chronic (or lifelong) condition that causes dry mouth and dry eyes. The syndrome also can affect any of the body's glands, including those that secrete sweat, saliva and oil. I have this also
2. Portal hypertension: Portal hypertension(Can't be measured but I'm sure I have) involves the portal vein which carries blood from the digestive organs to the liver.
The most common cause is cirrhosis of the liver, but thrombosis (clotting) might also be the cause.
I would like to find a support group for GAVE. This site does not have one.
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harv24jg active Comment
Apr 04
I did 12 week treatment with Harvoni for Hep C. Now cured of Hep C Yeah!!! I did experience hair loss that is not returning....I constantly have itchy feeling throughout my body and scalp.(drives my crazy )sometimes feels like being picked with tiny needles from the inside. I keep getting a reoccurring rash on my neck and chest, which itches. I never had any of these issues until I used Harvoni, I am sure they are the cause. I've been going to a dermatologist..no results he suggests an allergist. I guess I'll try that next. The rash has discolored my skin. Anyone else experiencing this?
I will say I never had cataracts before Harvoni. I noticed my vision got blurry after treatment and never cleared up. In the past three months, about 2 years after the treatment, I had both cataracts removed. Coincidence?
2yrs post harvoni hair loss depression
Hi Domco
I treated in the past for hep c with interferon 3 times but unfortunately it did not work. I was diagnosed with cirrhosis in Jan 2008. When the new meds were approved I treated with Harvoni and was finally cured of hep c 2 years ago but because of all the liver damage due to many years of infection I still have cirrhosis.
The good news is that with cure our cirrhosis may begin to improve with time.
Also, itching can be caused by cirrhosis. Some people try using oatmeal soap or soaking in oatmeal baths soaks.
How were you diagnosed with cirrhosis? Do you know your MELD score? Are you seeing a hepatologist associated with a liver transplant center? Not to say you are in need of a transplant but doctors at a liver transplant center are best equipped to follow patients like us with advanced liver disease.
Sorry for all the messages, I wanted to let you know that the last article has other peopls's experiences at the bottom of the articles.
I mainly wanted to say, you are not alone, there are others.
That's why there is a law suit.
Doctors are saying the drug was approved so quickly that there wasn't time to learn about long term problems so they want raw clinical trials.
I wish you the best, Dee
http://nolahepper.blogspot.com/2015/08/harvoni-fda-side-effects-reported.html
http://www.reuters.com/article/us-gilead-sciences-fda-idUSKCN0P92IZ20150629
Hi I didn't do Harvoni but I see you have been waiting for an answer. I think it is possible that these side effects are due to Harvoni.
I have seen others have problems afterwards. To me your side effects remind me of when I finished Interferon. I had brain fog and my eyes were very dry. I had to use eye drops.
I saw an article about Yale suing the FDA for raw clinical data so that doctors can make a better decision on what they want to prescribe for their patients. What that means to me, just another patient like you, is that doctors are thinking that not all of the clinical data was released. I think they are having problems. Just a naive opinion.
I''l get the article