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Posted 2/7/2012 2:36 AM (GMT 0)
Hi Everyone,

I am a new member here. To tell you a little about myself --

I've had Hepatitis C since around 1970 but never had any symptoms or problems until about 2 years ago when I developed a case of oral lichen planus. about a year ago, I began to notice I tired easily, was often nauseous, and begin to bruise easily and sores took longer to heal.

3 months ago I had a CT scan and found I have the beginnings of cirrhosis. I also have lost about 3/4 of my hair, am dizzy a lot, have a small amount of ammonia but can't handle the lactulose, and the worst thing so far is I have an odor that smells like I am dying.

I live in a very rural area but last week went into the City and saw a specialist. He said I could start treatment but would have to start with Interferon/Ribavirin rather than the new drugs. It seems if you have never had treatment before, insurance will not pay for the new drugs until you have a failure with the old ones. This was very disappointing for me to hear as I have genotype 1a and the odds are not so good with the old treatment. Also, my mother also had Hep C and almost died with the Interferon treatment.
She subsequently died of liver cancer about 10 years after this treatment.

I do have a couple of questions.

Does anyone know what the odds of clearing the virus are for genotype 1a with only the Interferon/Ribavirn? And then what the odds are with the new drugs?

Also, is there any way to begin treatment with the new drugs? Through a study or any other way?

Also, this is so gross, but it is really my most burning questions since I can find no information on it and my last doctor just kind of looked at me weird when I told him. I usually have a body odor like that of very stinky feet and a sickly sweet smell combined. I am not diabetic. btw, my feet don't stink. :-)

I'm glad to be here and hope to be able to make a strong contribution to the forum as time goes by.
Posted 2/7/2012 3:00 AM (GMT 0)
Hi, Shikopa, and welcome to the forum. I'm sorry you are feeling the effects of hep C. You've done well not to have had symptoms until 2 yrs. ago.

Regarding treatment, the new 3-drug treatment is no longer in trials. It became available to the public in May 2011. I understand that the odds of Sustained Viral Response (SVR) with this treatment, if you have genotype 1a, are 70-90%. But it is a very rough treatment from what I've read--lots of bad side effects from the protease inhibitor. There are some other treatments currently in trials. However, if you live in a remote area, the chances of your getting into such a trial may be nil. They would want you to have frequent blood work and follow-up visits.

The standard treatment has a 50-50 rate of SVR in genotype 1a. That is why the new treatment has been so exciting for those with 1a.

I have rarely heard of cirrhosis being diagnosed by CT scan. The gold standard is a liver biopsy. Have you ever had one? I would suggest that you do so before trying any type of treatment, so you know exactly what is going on.

I had not heard of insurance not covering the new treatment unless a patient had previously failed treatment. It may be according to what insurance you have.

Since it has been so long since you were infected, you need to keep a close watch on your lab work and also have a CT or MRI with contrast at least once a year. HCV can progress to liver cancer and ESLD. I'm very sorry about your mom. Perhaps you can prevent that happening to you.

I can't answer your questions about body odor except to say that it is not a result of hep C.

Hugs,
Connie
Posted 2/7/2012 3:20 AM (GMT 0)
Thank you for your kind welcome Connie.
The specialist I just saw said I did not need a liver biopsy to begin treatment and that the Cat Scan was good enough. I don't actually have insurance and am only on medicaid so maybe that's the deal with having to do the old meds first. He says if you fail on the old meds, then you can try the new ones and that the reason behind this is the cost of the new drugs.

I qualify for Medicare in July and think I may hold off on any treatment until then so I can be free to choose doctors. This doctor said that 6 months will not make any difference said the progression of the virus is slower in women and 6 months is not really that long overall. I will be moving into a larger city by then also.

What is ESLD?

Thanks,
Shikopa
Posted 2/7/2012 3:51 AM (GMT 0)
Hi Shikopa,

Welcome to Healing Well. I am sorry that you are dealing with hep C and liver disease.

Not sure about the body odor, but if it is breath:

Fetor hepaticus From Wikipedia, the free encyclopedia

Fetor hepaticus or foetor hepaticus (see spelling differences), also known as breath of the dead, is a condition seen in portal hypertension where portosystemic shunting allows mercaptans to pass directly into the lungs. It is a late sign in liver failure. Other possible causes are the presence of ammonia and ketones in the breath. The breath has a sweet, faecal smell to it.

ESLD is for End Stage Liver Failure.

I hope that you are able to start treatment soon and that it is successful for you.

Emma
Posted 2/7/2012 3:59 AM (GMT 0)
Hi..and Welcome Shikopa,
ESLD is End Stage Liver Disease (Just what it sounds like...it is the last stage of liver disease prior to death.) Liver disease can be caused by many different things. In my hubby, the Hep C caused cirrhosis, which then progressed to End Stage Liver Disease (scarring of the liver so badly it can't do it's job of sifting out toxins from the blood which accounts for the ammonia build up).

As far as the smell you are talking about, my hubby smells strange (don't know how to describe it) when the toxins build up in his body because he hasn't been able to have 3 Bowel movements a day. He has to have lots of BMs as that is the only way for him to get rid of the toxin build up since his liver isn't working now. (It was really hard for him to understand that 3x daily BMs were needed to sift the toxins out of his body.) If not he smells strange and acts strange from the HE (heptic encephalopathy).

There are many folks on here that are more knowledgeable and they will be a long shortly to answer or add to what I have written. Sorry you are going through this and hope you are able to find treatment for the Hep C that works for you.
Angie1953

Post Edited (Angie1953) : 2/6/2012 9:03:05 PM (GMT-7)

Posted 2/7/2012 4:04 AM (GMT 0)
Thanks Emma.
I think I'm still a ways from dying and anyway it's not my breath. Sometimes I smell it in my clothes closet when I've come in from the outside and it must seep from my pores and get in the clothes I don't wash with each wearing, like sweaters.
Ah well. At least it is good to know it's not from the Hep. Maybe it's just hormones.
Posted 2/7/2012 4:17 AM (GMT 0)
Shikopa, lots of things medically are centered on cost and whether or not you have insurance and what kind. You will have more options with Medicare. I encourage you to get a good hepatologist when you get Medicare. Ask him/her about a biopsy.

Do you eat a lot of garlic or onions? Pungent food odors can escape through the pores. Medications also do the same thing.

Your hair loss is also rather strange. I would say that is also not connected to hep C. To treatment, yes, but not without it. I've had some thinning since being on anti-rejection meds. If you are taking any meds, one of them could be the culprit. Vitamin over-use can also cause loss of hair.

Hugs,
Connie
Posted 2/7/2012 4:21 AM (GMT 0)
Hello Shikopa,

My partner has Hep C. He was also infected in 1970, but his disease progressed much earlier. Perhaps because he also drank alcohol, a lot of alcohol.

He had the stadard 2 drug treatment in 2003, but it did not work. He is 1a.

His cirrhosis progressed to End Stage Liver Disease during 2010. He quit drining and became eligible for transplantation in 2011. He also had a tumor discovered during his evalution for tranplant.

He DID have an odor, like he was dying. His bedding and hair smelled. I washed his pillow tics often and his bathrobe frequently. It was pretty upsetting. It is interesting that you notice it, as he did not.

Maybe because your ammonia isn't too high yet.

Mike was only on Medicaid and he took lactulose but also Xifaxan, which we got covered by Medicaid after a bit of a fight, but that really helped with the ammonia.

Is there a chance you would qualify for a transplant either before or after your treatment?

Mike will have to do treatment down the line, but for now, he is recovering from his surgery and going on about his life.

Mama Lama aka Carol from Florida
Posted 2/7/2012 4:29 AM (GMT 0)
Thanks Angie.
This makes me think I will start using the Lactulose the doctor gave me. I have a huge problem of always thinking I know more than the doctor. Ha.
Posted 2/7/2012 4:44 AM (GMT 0)
First off, you need a new doctor, preferably a hepatologist. There is no way to diagnose cirrhosis with a CT scan. As for the 3 part treatment, Incivek is available to naive (first time) patients. You need to check up on this, as the manufacturer said the treatment will be for everyone, regardless of whether one has insurance. You really do need to take lactulose. It tastes crappy, but it works. I can't believe it when people say they won't take it due to the taste. When my HE was bad, I took 30 cc. up to 3-5 times a day, whatever it took to keep my head as clear as possible. Better to choke the stuff down, than be slow and stupid. You're on the right track, go to a hepatologist, take your meds and eat properly. Be well.
Posted 2/7/2012 4:28 PM (GMT 0)
RE Lactulose: One of our posters had a really graphic post recently. Hubby was about in coma in hospital. Lactulose was essential to avoid DEATH. He couldn't manage oral treatment, so they first used an ng tube (in nose to stomach) and finally as an enema.

I think drinking the goo in juice is the way to go!

Good Luck

Mama Lama

Post Edited (MamaLama) : 2/7/2012 9:32:12 AM (GMT-7)

Posted 2/7/2012 4:54 PM (GMT 0)
Shikopa
My hubby drinks the lactalose in juice or mixed with Crystal Light. Almost every time he "has mental difficulties" it has to do with not enough BMs per day. It didn't make sense to us, until the Dr. explained the body's mechanics...and that p--ping is the only way the body has to get rid of all the body's toxins once the liver is not functioning well. The lactalose make you p--p which clears the ammonia out of the body (and brain).  I can't tell you how many times Dr. has told us this before it really SUNK IN.  Guess we thought we knew more than Dr. too. nono


Last visit from Dr, hubby explained he can't do 3 BMs a day, except when he has Denny's milk shakes. Dr. laughed, but ordered the nursing home to provide him 2 Denny's milk shakes a day. (They were not amused, but do make him two shakes a day, explaining they don't have the staff for Denny's delivery.)

Glad to hear you are planning to take the lactalose. 

Take care.

Angie1953

Post Edited (Angie1953) : 2/7/2012 10:01:30 AM (GMT-7)

Posted 2/7/2012 5:10 PM (GMT 0)
MamaLama,

   GOO?   Do you mean that life saving wonderful magic elixier*, Lactalose?    yeah

Angie1953

*elixier  - a medicine touted as a cure all

Posted 2/7/2012 5:56 PM (GMT 0)
YUP, the same!!!!!
Posted 2/7/2012 6:56 PM (GMT 0)
Welcome shikopa to our wonderful forum.  So sorry you are dealing with this disease and lactolose.  It's got to be one of the worse tasting meds on the market.   But it is a necessary evil in the treatment of high ammonia levels.   Keep testing it with different liquids....My husband finally found  the most tolerable for him was mixing it with sparkling soda.

And like you, my husband's cirrhosis was diagnosed with a CT scan.  The doctor said that he didn't want to risk my husband bleeding to death with a biopsy when I asked him about it.   I guess it's like if it looks like a skunk and smells like a skunk then it's most likely a skunk.  He took the results of the CT scan along with my husband's history,symptoms and blood tests and diagnosed cirrhosis. 

Again welcome......we are glad you found us........thoughts and prayers.......... 

Posted 2/7/2012 8:42 PM (GMT 0)
The doctors are taking an educated guess of cirrhosis when they don't do a biopsy. You cannot see scarring on an MRI, or CT scan. The doctors made that point with me when I tried not to get my first biopsy. A biopsy is the gold standard. When it came to taking lactulose, I simply used a small medicine cup (30 cc.) filled it and tossed it down like a shot of whiskey. From what I've read, that shouldn't be too tough for most folks here.
Posted 2/8/2012 4:21 PM (GMT 0)
smilewinkgrin  I take Lactulose 3 tablespoons sometimes 4 times a day. It taste like sugary syrup. I do not think it taste that bad. 3 bowel movements a day! I wish! Lactulose works different on some people than others. Rarely do I have 2 BM's a day. Some days I have none but have plenty of gas and wish I could go on those days. I think Maaloxx or Kaopectate taste nasty compared to Lactulose.
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