I was diagnosed 2 years ago with genotype 1. I contracted it from my boyfriend who didn't know he had it, my doctor said I was one of the lucky few to develop symptoms because they led to early diagnosis. At first I saw a hepetologist regularly, and it was decided that treatment could be delayed. I have no idea what stage I'm at. I've had liver ultrasound, but no biopsy. I am a single mother and have children that required my care, I have no support nearby, my liver health was ok considering I have chronic Hep C, and a history of medication reactions were the reasons behind the decision to postpone treatment. A year ago, circumstances made it impossible for me to get to the clinic, my family doctor has been monitoring my bloodwork but knows only the basics. My viral load last August was 2.70/mL. I'm not very clear what that means, but it hasn't changed much since diagnosis. I have other disorders/diseases that cause me to live in constant mild/moderate, and sometimes severe, pain. I have Tylenol 3 & Morphine for relief. I know Tylenol is bad for the liver, not sure about Morphine. I try to avoid taking anything, but if it's severe for long, after a few days of no sleep I sometimes break down. I don't eat salt, little fat, sugars and meats, lots of vegies and fruit, plenty of water and juice. I cook, don't use packaged/canned/processed foods. Hate to admit, but I smoke, still, though I've tried and will keep trying to quit. My circumstances are changing again in April, and I will once again be able to get to the clinic. My kids are now old enough that I can consider treatment, though I've heard some nightmares about side effects. My questions are...
is there such a thing as just type 1, without a or b?
how do I read my viral load?
what are the stages?
will I be able to function and care for my kids while on treatment?
does anyone know of any forms of assistance (physical, emotional, financial) in Ontario if I or my kids need it?
what is the least damaging to the liver in terms of pain relief meds?
is marijuana more or less harmful than Tylenol or Morphine?
Your viral load is high, but not unusual, but viral load has nothing to do with rate of progression of liver damage. So don't worry about viral load.
since Hep C is transmitted only through blood to blood contact you probably didn't contract it from your boyfriend, unless you shared blood.
Most importantly, you need a liver biopsy to determine your stage of liver damage. Stages are 0, 1, 2, 3, and 4. 4 is Cirrhosis. You need to know your stage so you can decide when to treat.
There are two genotype 1's: a and b. Both currently use the same treatment.
Treatment is not easy, but do-able. Many people work full time through treatment.
Tylenol is bad for the liver. You should ask your doctor about MJ and morphine or other pain relievers, but if your primary care doc only knows the basics, it would be better to see a gastroenterologist who specializes in Hep C or a hepatologist.
A biopsy is always preferable, but your Dr. can do a fibrosure (or if you are in Canada I believe they do a Fibroscan) A fibrosure is a blood test and it won't give you staging but you will know if you have cirrhosis.
It is very important to get one of those tests. If you do not have liver damage or if it is stage 1, I would advise you to wait a few years for the new drugs that will be on the market, they have fewer side effects.
The reason I am advising you to wait (*only* if your liver damage is minimal) is because from your profile, I see you have a number of health issues that I believe will compound the side effects of the current treatment available.
It is very important that you speak to a Hepatologist about these questions and find out the condition so you can make an informed decision.
Good luck to you.
Thanks for your help.
I'm not worried about viral load as I'm aware it doesn't increase liver damage. It was our doctor that said I'd contracted it from my boyfriend, as I'd been tested due to a needle stick injury a couple of years earlier and been negative, and his liver damage is far more advanced than mine. He was a drug user in the past, and had std tests done when we met, but they don't include Hepatitis unless you specifically ask. Wish that was better known to the public, the people I've told have been shocked, thought they were negative for every std.
My hepetologist didn't mention requiring a biopsy to determine stage, he said it wasn't yet necessary last year, that my liver health was ok, but to consider it for future. I'm a bit confused now, seems to be conflicting information. I intend to have a biopsy this year.
How do I find out if I'm a or b? I'm not sure if it matters, other than to compare notes with others of the same. I am aware that type 1 is the least likely to be cured, but also that treatments are continually improving. I'm sure it's not a piece of cake, but nothing worth having comes easy, so I'm more than willing to try and hope for the best. It is reassuring to hear that people work while receiving treatment, that sets my mind at ease quite a bit. Thank you soo much for that.
I did mention I know Tylenol is bad for the liver, and I avoid it. It's the morphine and marijuana I'm not sure of. I have asked my doctor, she really doesn't know, and to see a gastroenterologist requires a very long wait. I am seeing the hepetologist in late April, but I'm wondering what to use in the meantime. As I said, I rarely take anything, but my kids deserve a mother who isn't so distracted by pain and sleep deprivation that she's useless and cranky, so sometimes meds are worth the risk.
Just to clarify, Hep C is not a STD.
When they checked to find out your genotype, and told you it was 1, they probably also identified if it was 1a or 1b, but might not have told you or you might not remember. It is a blood test that the hepatologist can order in April if that info isn't in your record. Occasional Ibuprofen might be safer than occasional Tylenol, but that would be up to your doctor. Not sure about MJ or morphine. Have you been vaccinated against Hep A and Hep B? Have you been tested for HIV? Co infections with any of these would be extra burden on your liver. April is soon enough for follow up on all of this.
hi tes geno1 is one of the harder ones to cure but with the newer triple tx there is high rate of sucess my hubby on wk 16 just 8wk left he to is 1a and he was on teleprevir he was und at wk 4,8 &12 so i hope that gives you hope. Yes the treatment can be rough but its worth it in the end. You will get amazing support from thie site and really good info.keep reading and keepposting there is always loads of people ready to help anyway they can. Best wishes and good luck
Thank you. It's good to hear from people who have or are going through the treatment, and especially positive news. That sounds very promising for you and your hubby, will keep my fingers crossed for you. I've heard good things about the newer treatments so far, and it helps ease my concerns. And yes, I do believe this site is quite supportive.
I'm aware it isn't an STD, but almost everyone I've told thinks it is, and that they couldn't have it because they were tested for STDs. And the tests are run through the sexual health clinics, so their confusion is understandable. More public education is desperately needed.
I have a copy of all paperwork, but nowhere does it identify a or b. The hepetologist likely told me at the first visit, but there was alot of info to absorb. That's why I have copies of everything, to digest at my own pace. I will just have to ask in April. I can't take ibuprofen, too bad because I've heard it's somewhat safer. I have been vaccinated against both A & B, and tested for HIV. Thank you for mentioning that in case I hadn't. I know the risks are very high with co infections.
I've never heard of a fibrosure/fibroscan, I will ask the hepetologist about that, thank you. I might just bite the bullet and have the biopsy, so we have the full picture. My other health issues are the reason we've held off on treatment so far, and the newer treatments look promising for fewer risks of really nasty side effects.
my family dr told me that this disease CAN be a STD.
many websites and doctors have this same formed opinion point being that this disease can be transmitted thru sex if say the female is on her period(mentrual)blood to any tear even being microscopic on her partner.
there's too many falsehoods going around about HCV.Your average person thinks HCV is HEP A or B and anybody that has CHRONIC C are contagious.it is such a shame of the general public's ignorance of this most serious disease.i am most close-lipped where i work in a restaurant of WHO i tell of my condition i dont know what i'll say once i actually start treatment of what i will say but people are most ignorant when it comes to CHRONIC HCV.
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