criteria for treatment

[cowboysgirl1]

Mt fiance has been diagnosed with hep c. I'm trying to get him treatment, but the facility that he is in won't tell me the criteria for treatment. I've seen his blood tests and they show high on ast and alt levels. Does anyone know what the doctors are looking for as far as when they will start treatment?

[MajNeni]

Lucy, do not worry too much about what tx is going to do to you.  Sounds like your work situation is supportive.  I would not automatically take off the first two weeks before I even start, just call it day by day according to how the tx hits you.  Many times the day is tough to start, but once you push yourself out of bed - and frankly, out the door - it gets much better.  Being busy is infinitely better than staying unoccupied, with not much but tx and symptoms to think about.

MotherofThree,
good luck with your shot tomorrow.  Life is still life, and you are still living yours!  Right?

Maj Neni

[mother of three]

I started my treatment on 10-22 my first night was one i'll never forget  , but not doing to bad now ,going into my third wk on wensday , and i've only called off one day, I try to get the day after my shot off so I can rest,I take motrin if I feel achey .so good luck. and if you need to chat this is a wanderful sight.

[Sweetlucy]

Helloevery one today is my first time in this site.  I amvery excited to know I amnot alone.  I amabout to have mu biospy done on 11/18 at the VA medical center in Baltimore.  I have buggedthose people for a sooner date and they move me up a whole month.  Justthe waiting is ddriving me crazy.  I hademy ultrasound and did blood work.  Seen a psychiatrist andcurrently on AD which was a condition for my treatment because I use to take and AD. I an willing justas long as I can get treatment and do what I have to.  I know it is not curable but it is treatable.  So I have a positive outlook  even though I am very nervous and scared.  I haveallmy test result and keeping a book of my own.  I don't know if these results are good or bad will some one please help me.  HGB - 13.2, MCV-39.9, Monocyte 10.7, Eosinophil 0.2. AST-54, ALT-55, CO2-30.0- My ultrasound looked good they found to be normal in texture.  Iknowthe only real way is tohave the biospy done.  What should I look for on by test.  I have told my boss at work and they are supportive of me.  I donot want to take the first two weeks of my treatment off from work but the medical team keeps telling me to think about it.  I keep telling my self that I am not going to let it whip me like that and I would rather take off only when needed to keep my self busy.  I donot want to sit around and think about my illness.  I know I am going to beat this.  Any response will be appreciated.  God Bless you all

[MajNeni]

I used to have what I called "the dreaded hot heads."  It was like a major hot flash.  I often had them at night, and woke up drenched from the chest up.  Then I noticed it was often coming on soon after I took my riba pills.  This sx has not bothered me so much since about week 24; sometimes I still get a flush, but it goes away without disaster.  (I'm post men., tapered off from 5 yrs of HRT last fall, before I started on tx.)  Maj Neni

[berlynn]

Thanks for the response. I go to the GYN Tuesday. Hopefuly this is just one of wonderful world of sides. As to the Neupogen, do you think my ANC level is low enough to warrant it. From what I've read, it seems to have sides of it's own?  nausea? Oh boy,more sides. I don't want to take it unless I really have to. I don't want my tx doses lowered either, so I'll do what I have to.   Thanks again for your geneosity of time to all of us. berlynn

[cowboysgirl1]

Thanks for the information, the reason I came here was to find out more information so I could take the right steps in his best interest. They seem to have their heads up their you know whats, and don't what to help. Where he is has a lot to do with it, but that doesn't mean he doesn't deserve care. I wrote to him and told him to ask for more tests, ie genotyping and biopsy, and this week they are supposed to do more blood work. they told me this would be done every three months to monitor his condition. I want to stay on top of his care, and I guess I need a little guidence as to where I need to start. Any help you can offer I'd surely appreciate. Thx Sheila

[layla]

Yes I am well into tx. I am going to do 60 weeks of tx. Counting the weeks is too hard so I just go by months normally. The numbers are lower! Thanks for the encouragement. It's nice. LL

Berlynn, I'm glad you had a nice time with your grand childred. Try to keep your mind on other things so you won't have time to worry too much. I think that ER doc was an idiot for saying that to you. When I was told I had HCV it was by a non HCV educated PA. SHe just called me and said you have HCV, it's a life threatening disease, call a specialist. That's it! It was late Friday afternoon so I couldn't even call any other docs. It was the worse weekend I can remmeber. LAter when more informed myself and my husband called and wrote her superiors to inform them she needed to be educated on HCV and instructed how to inform patients properly as this devasted us unneccessarily. Let us know how things go.
(Layna is a lovely name).

[GI.PA]

Changes in your cycle, frequency and ammount can be noted on treatment.  We dont know why exactly but things do seem to return to normal after treatment.

Your ANC (neutrophils) are just a tad low but not requiring any dosage reduction and shouldnt be playing a role in your symtoms.

GI.PA

[berlynn]

Thanks for the info and comfort. I found out that I had HC when I went for a physical last year to see if I was premenopausal.Getting older s***s sometimes, does'nt it?  I was also told that this was not the case ( premen), but guess what, you have Hep C instead. What a shocker that was.

I have also been waking up at night freezing, because I was drenched from night sweats. I was surprised that the ER doc told me that it could be caused by cancer, what next? I have an appt. with a GYN on Tuesday. I'm rooting for menopause, even if it does mean I'm getting older.

I took my 3yr. grandson and my 2yr. grandaughter trick or treating tonight. They were so cute, Layna loved the decorations and especially the pumkins. I really want to enjoy many more times like tonight with them.  Take care,   berlynn

[berlynn]

Thanks for the info and comfort. I found out that I had HC when I went for a physical last year to see if I was premenopausal.Getting older s***s sometimes, does'nt it?  I was also told that this was not the case ( premen), but guess what, you have Hep C instead. What a shocker that was.

I have also been waking up at night freezing, because I was drenched from night sweats. I was surprised that the ER doc told me that it could be caused by cancer, what next? I have an appt. with a GYN on Tuesday. I'm rooting for menopause, even if it does mean I'm getting older.

I took my 3yr. grandson and my 2yr. grandaughter trick or treating tonight. They were so cute, Layna loved the decorations and especially the pumkins. I really want to enjoy many more times like tonight with them.  Take care,   berlynn

[DownThisRoad]

I didn't realize you were so far into tx until I just now read your thread and it hit me, wow how time flies for all of us.

You are really reaching your finish line. You've worked hard to get there. Keep going!!

[layla]

I have had constant female problems since the start of tx. No one mentioned this until I asked and my docs office said it's reported often for women on tx. I've had no period for months then 2 close together, severe lower back and abdominal pain, much heavier than normal bleeding, and while all labs are fine. Since I've asked I have found other women on tx that experience similar problems. I did have a full GYN check before the start of tx and everything was ok. I'm 44 and F. At this check-up the Gyn said I was definately not pre menopausal but it sure seems like it now. I did not have these problems before tx but I continue to have them. Others told me it goes back to normal after tx. I'm taking shot 35 today. It may be something different for you but female problems are normal during tx for many. Yet another sx! (Oh I am not recommending anything just sharing my experience). LL

[berlynn]

Hi, I'm new to this site so I hope you don't mind my posting to you. I am 46, F and last Mon. I had shot 20/48, I'm a 1. I found this site a few days ago. Unfortunately I am not as knowledgeable as most here seem to be about my blood test info, plan to remedy that soon.
     Anyway, I had quite a scare today. Please excuse, if this is to graphic. On Tues.I started(my time otm.)It started out the same as usual but by today, I had had 24 hrs. of extremely heavy (very unusual for me)flow. I Just wanted to sleep and was pretty out of it. My daughter became concerned and requested I call my DR. I could not get ahold of them so I called the Pegasyst nurseline. The nurse was concerned that my platelets were dropping and that I wasn't clotting. To shorten this, I ended up in the ER. My platelet count came back OK and I was told to go to a GYN asap as it could be a sign of something wrong, the ER dr. said cancer. But I'm hoping(crazy as this sounds) that it's the beginning of menopause or something like it.
      My blood test did show that my Neutrophils ABS count was low 1.3. They told me to take the results to my GI and that I should be put on neutropenia. Can you please give me some info on the neutropenia, or regarding anything else that might help?
        Thank you,   berlynn

[cowboysgirl1]

Thank you all for the info. I have done a lot of research, but all that I have found are basically info on ways it's transmitted and that's put me at ease to a degree. My Fiance is in prison, and he still has a year or so left. This is where I met him through a mutual friend. I just received his records, and I've contacted the prison about their course of action. This is why I asked about the criteria for treatment. They still have not done a biopsy or show any concern as to finding out his genotype. I have found out through research that genotype 1 is the most difficult to treat,and unfortunatly, the most common in the U.S. We do think we know when he may have contracted it, and how. About 5 or 6 years ago, and through IV drug use. He's only 23 now, and we hope to be able to have a family in the future. I've talked to a support organization, and they said there is no reason why we shouldn't try to conceive. We have not been intimate yet for obvious reasons, but we want to have as normal of a life as possible, once he is released. I do know that his HIV status is negative, and as far as basic health, he is healthy.  I've stressed to him that once he's home he needs to stay away from alcohol, but any other advice that y'all would have would be great to hear. I've come to this forum not only seeking advice but support from people who know first hand where I'm at.  Thanks again for posting, and I'll continue to read through the forum.

[BillyV102]

There is a web site: www.hcvinprison.org that you might want to check out.  If you click on "letters" on the right side of the page you can read letters from people in prison with HCV.  I was horrified after reading some of the letters, especially letter number 9.  Of course, I'm sure not all prisons are as inhumane as the ones I read about and your boyfriend could probably find out from others with Hepatitis C how they are being treated in his prison.

[mofo]

If after all the leg work is done, and you find yourselves considering treatment, look carefully at the downsides of treatment.  Try to weigh them carefully against the "need" to treat.  Some folks have a much more difficult time with treatment, and post treatment problems than they otherwise would with the hep c. I don't want to confuse or scare you, but it's important to have the info before hand.

[MichaelT]

Part of what needs to happen is to do testing and evaluation to rule out additional problems with the liver. General health, HIV status, so on, needs to be known too.

Assuming there aren't other significant factors, just the hep c to consider, the degree of liver disease determines whether treatment is optional, recommended, or absolutely needed. For mild liver disease, there is a debate about whether or not it is best to treat or wait.

From my perspective, mild liver disease is a matter of conscience and personal life situation to decide to treat or not. This is generally a slow moving disease. Moderate or worse needs to be treated. Even if the virus is not eradicated, treatment has been shown to benefit the liver.

Getting the news of having a chronic disease is usually quite a blow. Things usually aren't as bad as one may fear. Get evaluated by a specialist (preferably one with a LOT of experience treating this disease). Spend time learning about the disease and its treatment. Fear of this disease is dispelled by arming yourself with knowledge.  God bless!  -Michael

[GI.PA]

Whoa!!

Slow down...There are a lot of steps you are skipping.

First he must be evaluated by a specialist (usually a gastroenterologist, hepatologist or infectious disease).  Evaluation such as more lab work, an ultrasound and perhaps a liver biopsy may need to be done.  Then, and only then, can the decision to treat or not treat be made.

There is no simple list of who to treat and who not too...it is individualized.

Gi.PA

[Steve']

Well I can tell you one thing the alt & ast is not a tell tale sign at all really, there is a lot of reasons why one's alt can be high ... A lot of people on this site are great & will tell you more ... but basically he needs to have a liver biopsy done, this is the only true way of seeing the condition of your liver... the drs will also want to know which geno type of Hep-C he has got.... read some older posts on this forum you will learn plenty... Good Luck