Medical Forum / Diseases and Disorders / Hepatitis / June 2009
Hep C diagnosis...help!!
|
|
Thread rating:  |
kipster - 22 May 2009 15:00 GMT hi all
i was diagnosed yesterday with Hep C. I began having liver problems (started as pain, scans showed cirrhosis, tests found high iron retention, varices, etc--but no hemochromatosis) 4 years ago and was tested for Hep C but came up Negative. I had my blood checked Monday owing to diabetes Type II and there it was--Positive for Hep C.
i have no idea where i got it, but possibly from tatoos, sex, yadda yadda. i have an appointment with a specialist in a couple weeks. i imagine he will run tests again.
Are there many false positives? Assuming I have it, what will I see in treatment, realistically? can i travel overseas in the middle of treatment? Or should I calm down and not feel like this is almost a death sentence? I have spent time online researching but I'm now finding as I dig deeper, I run into conflicting information. Am I in the right place here on this list?
Thanks all.
kip
Thip - 22 May 2009 16:01 GMT > hi all Rule #1: Don't panic. This is not a death sentence.
Rule #2: Watch the Internet research. There's a lot of old and bogus stuff out there.
Rule #3: It's irrevelant how you got it. What's relevant is that you have it.
Having said that, you're now in the right place to ask questions. Yes, it could be a false positive but most likely isn't. Reaction to treatment is highly individual. Some folks sail on through, some practically fall off their feet, and most are inbetween with ups and downs. Traveling is up to how you feel and your doctor.
Take a deep breath, write down your most pressing questions, and post them here. And ask your doctor questions! I'm blessed with a very good and very patient one, but not all of them are like that. You might have to make him talk to you. I prefer not to talk to the nurses because some of them hand out the goofiest statements you've ever heard.
I understand that "death sentence" feeling. It took me awhile to get past it. Luckily, I stumbled onto this ng and they all helped put Humpty Dumpty back together again. :-)
kipster - 23 May 2009 09:41 GMT thip said:
>Take a deep breath, write down your most pressing questions, and >post them here. three pressing questions.
1. are most people who are in otherwise good health accepted for treatment. (Note: i am overweight but not tremendous, and i have light diabetes type II. I have varices and some iron issues but not due to Hemochromotosis). im 56, i dont drink, do drugs, and i am keeping my BP low.
2. if the treatment is NOT successful, do they try other stuff?
3. is there a way to get by with Hep C if i dont respond to the treatments and they are unsuccessful?
thanks. and man, im glad this group is here.
kip
Thip - 23 May 2009 12:32 GMT > thip said: > [quoted text clipped - 8 lines] > Hemochromotosis). im 56, i dont drink, do drugs, and i am keeping my > BP low. Your diabetes may present a challenge depending on how bad it is. Are you able to control it? Your doctor will porbably want to keep a very close eye on it. I did have a friend with very bad Type II and the doctor refused to treat until his numbers were within normal ranges for 30 days (he'd also had 2 heart attacks). Also--and everyone else from ash-c chime in if you disagree!!!!--it's possible the diabetes came with the HCV. I've heard of it disappearing after successful treatment.
> 2. if the treatment is NOT successful, do they try other stuff? There's not much else to try except clinical trials. There is one treatment that is extremely rigorous and debilitating. I didn't last very long on it but several have made it all the way through with success. And there are several promising drugs coming down the pike.
> 3. is there a way to get by with Hep C if i dont respond to the > treatments and they are unsuccessful? I have stage 4/grade 4 liver disease, pre-cancerous lesions, high iron, and lead a very full, rich life. I have to be careful to manage the fatigue but other than that, the dragon can go take a flying leap for all I care. I work full-time, am active in my church, and have 5 grandkids (I'm 56, probably had this since '74). For a long time, I let the HCV control my life and I was frantic to get rid of it, but now it's become this unpleasant thing I have to put up with, kinda like a wart. If I go into liver failure tomorrow, que sera sera, but I could rock on for 10 more years. It was a huge struggle to get here, but I'm ok with whatever happens. Life is meant to be enjoyed.
> thanks. and man, im glad this group is here. > > kip Yeah, me too! When my husband died this was one of the first places I came for support. It's been a lifesaver in more ways than one.
Sara - 23 May 2009 16:38 GMT > > thip said: > [quoted text clipped - 44 lines] > Yeah, me too! When my husband died this was one of the first places I came > for support. It's been a lifesaver in more ways than one. Thip, you are still my heroine :)
Kip, hang in there. Treatment is pretty brutal, but doable for most of us. We are here for you, ask your questions and whine your whines, we all were there at one time or another, many of our veterans more than once! I was lucky and the treatment worked first time through. I had some of the 'bad' going for me -- age (56 now, went thru TX in 06 so was 53 then), I was overweight (still am, sigh), and had it for probably 30+ years before I was diagnosed. I had a lot of side effects, but they were fairly mild compared to other stories I read here! I am still virus free and feeling pretty good :)
OH yeah, don't want to disappoint anyone -- remember when you start treatment to drink LOTS of water. I'd actually recommend you start upping your water intake now to get used to drinking it. My doc told me to drink half of my body weight in ounces of water every day, over and above anything else I drank. You will find you feel dizzy, nauseaus, and just plain crummy when you don't get enough water -- the meds are extremely dehydrating.
PS to Thipper -- we finally sold the house and are planning to move to GA in about 3 weeks or so -- got an apt in Fort Oglethorpe (very near Chattanooga). We really will have to work on getting together!
Sara
Thip - 23 May 2009 18:09 GMT On May 23, 7:32 am, "Thip" <m...@privacy.net> wrote:
> "kipster" <bassopho...@gmail.com> wrote in message PS to Thipper -- we finally sold the house and are planning to move to GA in about 3 weeks or so -- got an apt in Fort Oglethorpe (very near Chattanooga). We really will have to work on getting together!
Sara
YEAH!!!!!!!
greyhackles - 25 May 2009 02:26 GMT >> thip said: >> [quoted text clipped - 16 lines] >disagree!!!!--it's possible the diabetes came with the HCV. I've heard of >it disappearing after successful treatment. [...]
You're remembering a few posts we've had here over the years from folks who cleared successfully and then had their type II diabetes eventually resolve. And there's plenty of literature linking chronic HCV to increased incidence of diabetes.
About the only comment I have is the presence of varices might cause some issues with therapy, due to the potential for thrombocytopenia. Assuming a doctor is willing to initiate therapy, the patient should get platelet counts early and often during the induction period (roughly the first couple of months)...
Cheers
/greyhackles
kipster - 25 May 2009 09:01 GMT greyhackles said:
> About the only comment I have is the presence of varices might cause some > issues with therapy, due to the potential for thrombocytopenia. Assuming a > doctor is willing to initiate therapy, the patient should get platelet counts > early and often during the induction period (roughly the first couple of > months)... my diabetes numbers are good--my glucose is now under control with glimepiride 4mg 1X per day. thats a very light dose and providing i lose weight as anticipated, and work a fastidious diet, i could drop the meds down the road according to my doctor.
the varices are there--i control my BP with a light medication, and i am exercizing and expect to lose a lot of weight with my diabetic diet. maybe 75 lbs. so my varices will be in a body with no high BP or bad glucose problems soon.
everyone is walking on eggshells about the question i have about living if turned down for treatment or an unsuccessful course. can people live with Hep C for a semi-normal lifespan by following stringent dietary and physical fitness programs? or am i looking at 10 years before liver failure or transplant, regardless?
you all said to ask questions, so there you go sorry if i appear scared. cuz i am!
thanks
kip
greyhackles - 25 May 2009 16:05 GMT >greyhackles said: >> About the only comment I have is the presence of varices might cause some [quoted text clipped - 25 lines] > >kip I don't know about eggshells, but the fact is that most people - as in roughly 90% - do not suffer life-ending consequences from chronic HCV. Of course, statistics mean nothing to the individual patient, but there we all are.
Clearly, improving your overall physical health is in your best interests, regardless of whether you attempt therapy, or even the outcome of therapy. Diabetes and high blood pressure can dramatically affect quality of life, so getting and keeping those under control is likely at least as important as managing the HCV.
wrt to the HCV, finding out your genotype, as has been mentioned, is the next important step. If you are genotype 2, there's an excellent chance that a 6-month course of therapy could be successful.
Cheers
/greyhackles
Thip - 25 May 2009 20:40 GMT > you all said to ask questions, so there you go sorry if i appear > scared. cuz i am! > > thanks > > kip I think I can say with 100% accuracy we've all been there!
Dwight - 26 May 2009 03:17 GMT > greyhackles said: >> About the only comment I have is the presence of varices might cause some [quoted text clipped - 25 lines] > > kip I haven't read the other replys yet, but I have had hep-c since a shoulder surgery in 1981 (I think that is were I got it). I went through tx the first time in 1998 and the second time in 2004. I've had cirrhosis since at least 1993 when I had my first biopsy, or maybe even 1992. I'm not expecting to have liver failure as the cause of my demise. Since I found out I've started eating better and quit partying. The last biopsy showed that my liver wasn't any worse than it was 16 years ago. You may have to alter your lifestyle a little, but that depends on how you were living before. I don't live by any strict diet or exercise plan now, too busy enjoying life.
Dwight
Waterspider - 25 May 2009 03:40 GMT > 1. are most people who are in otherwise good health accepted for > treatment. (Note: i am overweight but not tremendous, and i have light > diabetes type II. I have varices and some iron issues but not due to > Hemochromotosis). im 56, i dont drink, do drugs, and i am keeping my > BP low. Short answer: Yes!
> 2. if the treatment is NOT successful, do they try other stuff? Short answer: Yes! "Other stuff" being perhaps another drug added to the normal treatment of pegylated interferon and ribavirin. Or, they will repeat the treatment, sometimes for a longer duration.
> 3. is there a way to get by with Hep C if i dont respond to the > treatments and they are unsuccessful? Short answer: Yes! Doing treatment, even if it's unsuccessful, does good things for your liver by holding the virus at bay. Some people even see a lessening of their stage of liver damage.
Your genotype will reveal more information on the duration of your treatment and your odds for SVR (sustained viral response or "whoopee, I'm cured!"
You are embarking on a most interesting, life-changing journey. The hardest part of the treatment is getting yourself psyched up for it, but if you can do that you can do the treatment.
Do take anti-depressants, and (ideally) begin a couple/few months before you start treatment; they take a while to do their thing, and sometimes prescription dosage and drug adjustments are necessary to get it right.
Do not stop asking questions here and remember that the only stupid questions are the ones you don't ask. We're happy to help. Gives us a chance to show off our knowledge, because we were all at exactly the same place as you are today-- scared, bewildered and not knowing anything about hepatitis c.
Welcome to the Dragon Slayers Club.
Waterspider
ironjustice - 24 Jun 2009 16:33 GMT On May 23, 1:41 am, kipster <bassopho...@gmail.com> wrote:if the treatment is NOT successful, do they try other stuff? <<
They have already told you about the iron level in your body. They are targeting iron / iron reduction therapy in diabetes AND in hepatitis C.
Treatment of iron reduction therapy / bloodletting for your conditions is NOT a treatment doctors and nurses use as much as they could. They have shown one of the reasons iron reduction therapy is not used as much as it could be used is because doctors and nurses are afraid or simply REFUSE to use it because it is "too much like work" ..
"Interferon-alfa-2a is very expensive to use and associated with significant side effects (severe weakness, altered mental status, and depression)."
Hepatitis is treated with bloodletting. Hepatitis is treated with interferon.
One of the reasons phlebotomy isn't used as a treatment in hepatitis is .. staff enthusiasm. They DO use interferon though with rapturous abandon. The staff .. lack the enthusiasm to bloodlet .. the patients ..
This means people are being **forced** to pay for high priced drugs because nurses and doctors refuse to administer a medical treatment ..
"I don't want to bloodlet people"
That sounds bizarre ..
"Interferon-alpha lowers red blood cells / erythrocytosis"
http://tinyurl.com/yfk2yp
Complaints of headache, dizziness, vertigo, tinnitus, and visual disturbances are common. Another characteristic symptom is pruritus (40-50% of PCV patients), especially after hot showers. Many patients also experience an uncomfortable "burning" sensation in the fingers and toes called erythromelalgia.
b. Myelosuppressive Therapy - Interferon-alpha is also an effective myelosuppressive agent but is very expensive to use and associated with significant side effects (severe weakness, altered mental status, and depression).
-------------------
"Interferon-alpha inhibits erythropoiesis"
Interferon-alpha-induced apoptosis in human erythroid progenitors. Exp Hematol. 1995 Nov;23(12):1310-8. Tarumi T, Sawada K, Sato N, Kobayashi S, Takano H, Yasukouchi T, Takashashi T, Sekiguchi S, Koike T. Department of Internal Medicine II, Hokkaido University School of Department of Internal Medicine II, Hokkaido University School of Medicine, Japan.
Recombinant human interferon-alpha (rIFN-alpha) inhibits erythropoiesis, in vivo and in vitro. In an attempt to clarify mechanisms related to this inhibition, effects of rIFN-alpha on highly purified human peripheral blood burst-forming units-erythroid (BFU-E) (20-60% purity) were compared with effects on erythroid progenitors in various stages of development. Day-1 and -7 cultured cells were equivalent to primitive BFU-E and colony-forming units-erythroid (CFU-E), respectively. Day-1 BFU-E supported by recombinant human erythropoietin (rEpo) and interleukin-3 (rIL-3) was inhibited by rIFN-alpha in a dose-dependent manner, and a significant inhibition occurred at 2000 U/mL rIFN-alpha. Limiting dilution analysis demonstrated that rIFN-alpha directly inhibits BFU-E rIFN-alpha inhibited the proliferative capacity or the colony expression of erythroid progenitors, with no relation to the stage of development, but inhibition of differentiation was not apparent. This evidence suggested that apoptosis of erythroid progenitors was induced by IFN-alpha. When day-7 cells were incubated with IFN-alpha in the presence of rEpo, there was an increased breakdown of total cellular DNA into DNA fragments of less than 5 kb; hence, the inhibitory effect of IFN-alpha on erythroid progenitors may mediate apoptosis.
PMID: 7589287
-------------------------
Iron reduction therapy in hepatitis C EDITOR,—Three papers in the July issue report on the possible association between iron and tissue damage in conditions other than haemochromatosis. Tan et al (Gut 1997;41:14–18) found that gastric cancer cells are more susceptible to photodynamic therapy when iron is removed. Boucher et al (Gut 1997;41:115–20) found that treatment of hepatitis C with interferon leads to a decrease in liver iron content. Bacon (Gut 1997;41:127–8) briefly commented on the association between iron and hepatitis C, including some evidence that iron depletion may be beneficial in patients who fail to respond to interferon á. Shortly after Bacon et al’s pioneering report in 1993 on iron reduction therapy in hepatitis C,1 and mainly because of a lack of any other option at the time, we started applying this form of therapy in our growing population of patients who had failed to respond to interferon and who had the unfavourable 1b genotype. The simplest and cheapest way to reduce body iron stores is repeated drawing of one unit of whole blood (as for haemochromatosis). However, we encountered several unexpected difficulties in our attempts to implement a phlebotomy programme for patients with chronic hepatitis C. A small group of patients are reluctant to undergo repeated phlebotomy because of ethnic or psychological reasons (there is a belief that blood equals life and therefore that blood loss depletes the body of life giving power). A second group cannot tolerate blood loss because of recurrent episodes of faintness and presyncope. These patients need several hours’ observation, a chaperone, and sometimes intravenous fluid before they can be discharged home. In a third group venous access is a problem. The large bore needles of standard phlebotomy bags can be inserted into large straight veins only. Most female and some male patients do not have suitable veins and this problem becomes more serious with age. This obstacle can be overcome by improvisation with smaller bore needles but this has the disadvantage of slower flow, increased stasis and coagulation within the tubing, sometimes necessitating reinsertion of the iv line. A fourth impediment in a busy gastroenterology/ hepatology department is lack of enthusiasm among nursing staff and a shortage of beds and space in the recovery room. It also seems unwise to place patients with chronic hepatitis C undergoing phlebotomy and large quantities of potentially hazardous blood alongside uninfected patients recovering from endoscopy. This also limits the time available for phlebotomy. We devised a simple way to circumvent all of these difficulties: all new patients with chronic hepatitis C (unless they have an iron deficiency) are shown a 50 ml syringe as early as possible in their workup. They are told that from now on they should ask for all blood tests to be taken only with such syringes and that any surplus blood should be discarded with the syringe in the biohazard containers. This also applies when vacutainer tubes are used. As iron overload in these patients is not as great as in those with haemochromatosis, iron depletion can be accomplished in 20–40 phlebotomy sessions (a 50 ml syringe can contain ~70 ml blood). Thus iron reduction therapy is achieved more slowly than with conventional phlebotomy but is integrated into the routine workup and is accepted by both patients and staff alike. We hope that our method may be useful to other clinicians in the field. Y LURIE M BEER GABEL I LAMBORT T SOUMATZKY S D H MALNICK D D BASS Kaplan Medical Center,Affiliated to the Hebrew University Medical School and Hadassah, PO Box 1, Rehovot 76100, Israel
Who loves ya. Tom
Jesus Was A Vegetarian! http://tinyurl.com/634q5a
Man Is A Herbivore! http://tinyurl.com/4rq595
DEAD PEOPLE WALKING http://tinyurl.com/zk9fk
> >Take a deep breath, write down your most pressing questions, and > >post them here. [quoted text clipped - 15 lines] > > kip Dwight - 22 May 2009 21:28 GMT > hi all > [quoted text clipped - 19 lines] > > kip What thip said. I have all of the same problems, except I'm Positive for hemochromatosis as well. I've been through tx twice, first time no problem, second time wasn't a whole lot worse, but neither was successful. I never missed any work. Hang in there and stick around, there are still a few old-timers around to help you out if you have questions. Do you play guitar? ;)
Dwight
kipster - 23 May 2009 09:30 GMT Dwightt asked:
>Do you play guitar? ;) presently i am an upright bassist working out of Nashville. i play all over the country, hence the worries about Hep C treatment. do you play music?
thanks for the insights
kip
Dwight - 24 May 2009 06:33 GMT > Dwightt asked: > [quoted text clipped - 7 lines] > > kip I used to try playing a lot of guitar from the mid to late 60's to mid 80's. To say I wasn't any good would be an understatement. I started playing again in 2004 during my last round of tx. Trying to learn correctly and have been getting better. Music helped me get through the last round of tx and I have Elmo, Russ, and Shawn to thank for getting me back into playing. I wish they were still around. I did talk to Russ a few days ago on his birthday, but haven't heard from Elmo or Shawn in a while. I believe CJ is still involved in playing, but I don't know of anyone else here.
I'm 53 as of yesterday and I feel pretty much like thip about the hep-c. I've decided to enjoy my life and quit worrying so much about the hep, if something comes along that has a good chance of getting rid of the dragon I'll probably try again. I'm not going to let it run my life anymore and I'm much happier.
If you ever make it down to the Dallas/Ft.Worth area give me a shout and I'll bring a group to come hear you play.
Dwight
anonymousone - 25 May 2009 06:03 GMT > hi all > [quoted text clipped - 19 lines] > > kip You do need to find out what your genotype is as it will give you a better idea where you stand. They dont always test for that.
Paul - 25 May 2009 13:09 GMT On Fri, 22 May 2009 07:00:24 -0700 (PDT), kipster <bassophonic@gmail.com>, in message ID <5228cada-79a9-4615-99c9-e2382c2e56ec@b1g2000vbc.googlegroups.com>, in the newsgroup alt.support.hepatitis-c wrote:
>hi all > [quoted text clipped - 19 lines] > >kip The others have beaten me to it by a day or three. Glad you felt able to post but sorry that you needed to. No point responding to your questions as the others have covered it really. Just want to post a message of support to you. This thing is beatable. I treated back in '04. It seems so long ago now but at the time it seemed to drag on forever. My one and only attempt to treat worked and the dragon has never returned. However, I did get lucky in the genotype lottery and won a 2b as first prize. If you must have hep-c, a number 2 genotype is the one to get (half the treatment time with a better chance of clearing it for keeps). A couple of weeks back I went to get tested for a load of stuff including hep-c (more for someone else's peace of mind than my own) and everything came back just fine. I have heard of rare, anecdotal instances of hep-c retuning in the early years but getting a good result 4 yrs and 8 months after tx means that I can use the c word (cure) I feel. Best of luck with it whichever way you go. May your genotype be a good one.
Waterspider - 25 May 2009 18:42 GMT > On Fri, 22 May 2009 07:00:24 -0700 (PDT), kipster > <bassophonic@gmail.com>, in message ID [quoted text clipped - 45 lines] > Best of luck with it whichever way you go. May your genotype be a > good one. Just a note to everyone that Genotype 3 is the same as 2 for tx duration and SVR odds.
About hep c "returning" after it's been erradicated... This has not been proven. I suspect the cases where it appears to have returned are in fact cases where the patient has become reinfected. And, the viral load tests of even a few years ago (and perhaps even today) cannot measure a nil quantity. So, a result of <50 copies could mean 49 copies, and 49 copies could replicate to substantial numbers in a year or two. If anyone knows, I'd be interested in the minimum quantity that can be detected in a viral load test today.
Waterspider
greyhackles - 26 May 2009 02:52 GMT >> On Fri, 22 May 2009 07:00:24 -0700 (PDT), kipster >> <bassophonic@gmail.com>, in message ID [quoted text clipped - 59 lines] > >Waterspider The most sensitive qualitative test that was used during/after my treatment was sensitive down to 5 IU/ml. This was used at end-of-therapy and at my 3, 6 and 12 month post-treatment checks. It was apparently considerably more expensive than the one that was usually used, which bottomed out at 50 IU/ml.
That was four years ago, so it would not surprise me if there was a test that is even more sensitive...
Cheers
/greyhackles
topcat - 02 Jun 2009 06:08 GMT > hi all > [quoted text clipped - 19 lines] > > kip Kip, hang on, you're in the right place here. Your doctor should be able to enlighten you more on treatment options as the test results come in These are good people here and their pretty knowledgeable, so ask questions and let us know what's going on. I think we all felt pretty hopeless at first, I know I did, but it got better over time. . Welcome to the group. joe
|
|
|