First things first. If you haven't already, you need to find a liver doctor who specializes in treating hepatitis c. They can usually be found in the larger, city teaching hospitals. Unless you have someone local, it's worth the trip at least for an initial consultation.
You doctor will explain treatment options and answer questions. You can also run by him any and all medications you're taking or want to take.
But generally, yes, avoid alcohol if you're a stage 4. Tylenol is probably OK but in limited quantities. Again, your liver doctor can be of help here. Most doctors don't have a problem with milk thistle as long as you're not on treatment.
I personally would lay off any agressive changes in diet, vitamins, minerals, supplements, etc. until you talk to your doctor. Also stay away from any internet or new-age "cures" for hepatitis c. Currently, the only universally available drugs that can actually kill the virus are pegalayted interferon and ribavirn. There are some other exciting drugs in trials but won't be generally available for a couple of years.
Because you're a stage 4, you shouldn't wait to get evaluated. If you treat promptly and are successful, the liver will start to heal itself. If you delay, your cirrhosis may get worse.
Do you know your viral count and what genotype you are? If not, ask your doctor. Also, as a stage 4 you should have an endoscophy to check out your insides. They often do it right in the doctors office or in the hospital as a day patient. Takes about 20 minutes and you don't feel a thing (or remember it :)) with the fast-acting sedation now being used.
Many people have stage 4 and get cured and your chances today are better than ever with the higher success rates of current drugs and exciting new drugs in the wings.
Foreseegood posted this study below in another thread, but I think it's worth moving up here. Very encouraging data, IMHO.
J Clin Gastroenterol. 2005 Sep;39(8):737-42.
Treatment of chronic hepatitis C virus infection via antioxidants: results of a phase I clinical trial.
Melhem A, Stern M, Shibolet O, Israeli E, Ackerman Z, Pappo O, Hemed N, Rowe M, Ohana H, Zabrecky G, Cohen R, Ilan Y.
Liver Unit, Department of Medicine, Hebrew University, Hadassah Medical Center, Jerusalem, Israel.
BACKGROUND: The pathogenesis of chronic hepatitis C virus (HCV) infection is associated with a defective host antiviral immune response and intrahepatic oxidative stress. Oxidative stress and lipid peroxidation play major roles in the fatty liver accumulation (steatosis) that leads to necro-inflammation and
necrosis of hepatic cells. Previous trials suggested that antioxidative therapy may have a beneficial effect on patients with chronic HCV infection. AIMS: To determine the safety and efficacy of treatment of chronic HCV patients via a combination of antioxidants.
METHODS: Fifty chronic HCV patients were treated
orally on a daily basis for 20 weeks with seven antioxidative oral preparations(glycyrrhizin, schisandra, silymarin, ascorbic acid, lipoic acid, L-glutathione,and alpha-tocopherol), along with four different intravenous preparations(glycyrrhizin, ascorbic acid, L-glutathione, B-complex) twice weekly for the
first 10 weeks, and followed up for an additional 20 weeks. Patients were monitored for HCV-RNA levels, liver enzymes, and liver histology. Assessment of quality of life was performed using the SF-36 questionnaire. RESULTS: In one of the tested parameters (eg, liver enzymes, HCV RNA levels, or liver biopsy score), a combination of antioxidants induced a favorable response in 48% of the patients (24). Normalization of liver enzymes occurred in 44% of patients whohad elevated pretreatment ALT levels (15 of 34). ALT levels remained normal throughout follow-up period in 72.7% (8 of 11). A decrease in viral load (one log or more) was observed in 25% of the patients (12). Histologic improvement(2-point reduction in the HAI score) was noted in 36.1% of the patients. The SF-36 score improved in 26 of 45 patients throughout the course of the trial(58% of the patients). Treatment was well tolerated by all patients. No major
adverse reactions were noted.
CONCLUSIONS: These data suggest that multi antioxidative treatment in chronic HCV patients is well tolerated and may have a beneficial effect on necro-inflammatory variables. A combination of antiviral
and antioxidative therapies may enhance the overall response rate of these patients.
Some of what you say makes sense but what we're talking about here is a stage 4, who has never treated before. Would you advocate this type of therapy as an alternative to Peg Interferon and Ribavirin?
Thank you guys for bringing that report up to todays threads. It's good info that I'm sure alot of people will appreciate.
I'm in stage 3 so I'm doing the monster combo; I believe these alternatives are reserved for those with lesser damage.
Even after successful tx many of us will still have some liver damage, and these alternatives may be something to consider at that point. And for those who are waiting or can't do tx right now as a maintenance program. When I'm finished tx I will still have to work on my liver health. Getting rid of the HCV is just the 1st step. thanks for listening
Also, as regards to this particular case, please see my addendum to this study on the Cirrhosis and Milk Thistle thread if you want to. Of course, everyone has to talk to confer with their doc as to treatment plans. Good luck to you!!!!
As a stage four, I really don't think you want to spend time on any alternate therapies like described in the Israeli study. The only proven way to reverse liver damage is to kill the virus. Right now that is combination therapy using peg interferon and ribavirin.
Hopefully, when Cuteus said "very scary biopsy results", she meant that in a psychological sense. Truth is many people live totally normal lives with cirrhosis for many years.
As I said before, there has never been a better time to be treated as today, cirrhosis or not. What you want to do is find a really good liver specialist and get on the program. Leave the alternative therapies to those with less liver damage.
Before you start getting your dander up again, let me re-iterate that I'm not encouraging this stage 4 poster, or any others, to substitute conventional treatment for alternatives. I didn't want to open a new thread to bring people's attention to this interesting study that Foreseegood posted in a thread below.
Jim, your personal bias against herbs and vitamins is interesting in light of your enthusiatic advocacy for "watchful waiting." I'm beginning to think you're guilty of the same closed-mindedness that you recently accused Cuteus of.
Having said that, I do appreciate your contributions to this forum. I think you have a lot of insight to offer and I love your impeccable grammar and spelling :)
very scary biopsy results, I agree. I would be freaking out also. But a lot of people are living with cirrhosis, mostly because the tx did not work for them.
Try to insist on individualized treatment, due to the advanced liver damage. If you are a genotype 2 or 3, that generally gets treated 24 wks,but remember that is for the average patient, advanced damage should get more attention, in my opinion, due to the antifibrotic effetcs of interferon, but even that length of time seemed to have worked for some folks here.
if you are genotype one that usually gets 48 wks, and since fibrosis and cirrhosis lower the response to the current meds, extending tx might offer a better shot at reaching the virus stored in the scar tissue. some studies on rats(not too far from us guinea pigs) have shown no significant improvement in fibrosis from milk thistle and other antioxidants, Perhaps due to the advanced damage.
get the consult with a hepatologist as soon as you can.
I assume from the end of your post that this is all good spirited, and frankly that's all I'm interested here. From your opening line I wasn't quite sure.
My reaction had nothing to do with my or anyone else's dander. Painintheside, a stage 4, posts his story and you post a small Israeli study on antioxidant therapy in answer. In his thread.
Are you actually suggesting that Paintheside, a stage 4, not treat with Peg Interferon and riba and try antioxidants instead? If not, why did you post the study in this thread. I'm confused.
Also, you don't seem to understand my position on vitamins, herbs, etc. First, I'm not against herbs and vitamins -- I just don't advocate them blindly, nor do I think they're an alternative to treatment for those with significant liver damage.
And lastly, I an not an advocate of "watchful waiting" versus treating. I'm an advocate of keeping that OPTION open for those with no or minimal liver damage.
Now, if you can explain to me how this demonstrates my "closed-mindedness" I'm all ears.
Just wanted to say, this study was also jointly done here in Atlanta, that might give it more credibility for some. And since it's been published in PubMed and The Journal of Gastroentology,among others, even my somewhat famous hepatologist was remarking on it.
By all means, some cirrhotic patients have cleared the virus with the pegalated interferon drugs which probaby has saved some of them from ESLD! That's great progress and gives many hope. A few years ago I remember they were warned against them; each person has to deal with their own particular case individually with their doc's help.
But I do know a few cirrhotic patients that take similar regimens w/out any problems, if for any reason they have already taken and not cleared with the interferons, etc.." Like I said, it's something to talk about with our doctors, hopefully, your doctors are as open minded as mine.
I really worry about pointing people with liver disease in the direction of herbs and supplements.
I think ( and I have thought this through) that it may be irresponible.
People who have not studied the disease come here for advice,and to serve them up 'studies' such as those recently posted is not going to help and could do a lot of harm.
These are not scientific,insfofar as there is no placebo group and the results have not been replicated.
The controversial New Mexico article was ,in my opinion total garbage and I do not believe that three people from a transplant list were restored to health as claimed.
It is wholly anecdotal,there was no follow up ect.
The author unequivocaly,and uncritically endorses a whole swathe of seperate supplements within a trivial one page report.
There is enough quackery on the internet without the need to seem to endorse it here-particularly to people who don't have time to waste.
I too am susceptible and went through my own Chinese Herbs and supplements phase.
Now, I am in no position to dampen the opinions of others,this is a forum with all that implies-play the supplement card if you wish,but please,only to to those who have time on their side.
Whoa group - neutral corners for a few minutes please! :)
I seem to be the only person whose posts I read on here that is graded on the Knodell scale of 1 to 6. I am a Grade 5, partially cirrhotic.
Mostly I see references to 1 to 4 grading. Anyone else on here graded on the Knodell scale?
Because it occurs to me that maybe some of these new folks who are saying they are a "4", may be graded on a 1 to 6 scale. Possible?
Last night was #3 / 45 to go! Sides are mild so far, praise the Lord!!
Thanks for any insight you can give me on the Knodell 1-6 -vs- the ? 1-4 ... God bless -
Good point. We really should specify, for example, stage 4 out of 4, or stage 4/4, or stage 4 Metavir when referring to stage.
Unfortunately, a lot of people don't know what their stage is not to mention which system it's scored on. To your question, this may help or confuse: http://janis7hepc.com/biopsy.htm
maybe I missed it, but where in that study did they include cirrhotic patients? It did not break it down by damage. I did read one study where they found no reversal of fibrosis in lab animals with this regimen. Perhaps it prevents further damage? because it does not seem it will help with damage reversal.
I agree that after tx, we should continue on improving our liver health by beneficial antioxidants and good eating habits. I just have to convince myself to start.
As a newbie, you obviously aren't familar with the culture of this forum. We're permitted only six new threads daily, so it's quite common for posters to use existing thread for a variety of topics, rather than use new threads.
You're connecting dots that aren't there. My posting of the study had absolutely nothing to do with advocating alternative treatments to the person who opened the thread. That connection is in your mind only.
Now my dander is up.
I'll demonstrate how you've been close-minded when you demonstrate how I've encouraged folks with significant liver damage to substitute alternative treatments for conventional treatments. Believe me, you can check every post I've ever made during the past two years and you'll never find anything that even comes close to implying that. I
On the other hand, I can find plenty of posts from you that are critical of herbs and supplements. Your bias, based on your personal experience, is very clear.
With respect your post is the second response in the thread and therfore bound to percieved by the questioner as a reply to them.
I'm glad I'm not within striking range of your dander!!!
I was graded as stage 4-Cirrhosis, grade 3 inflamation, by the hospital pathologists.
Dr Gish, a specialist in San Francisco, had a look and placed me at 4-5 transitioning on the 0-6 Ishak scale with inflamation grade 2. I believe that places me as just entering a cirrhotic condition, which I'll take over a blanket diagnosis of 4-Cirrhosis.
So there's room for interpretation. Gish's office also states they have a 30% probability of grading high & 30% of grading low because tissue sample is so small. Gish provided a lengthy report explaining how he reached his conclusions. I didn't understand half of it, but the fancy vocabulary was pretty impressive and lent a level of credibility.
I'll begin treating next week, or the week following.
Best of luck to you. Give it some time and you'll adjust to your new situation. I spent the last 2 months since biposy eating well, exercising, and doing stuff I may not be up to once I start treatment.
Nope. And some of what you say makes sense too, hang on, a lot of what you say makes sense! What I try to do, and I "think" you try to do this as well..is post with many people in mind while still trying to address an individual issue.
I think that's maybe one reason why some of us get misunderstood from time to time.
Where you say that he should go to a hepatologist (agreed) and explore going on treatment asap (agreed)...if for any reason he's not able to go on treatment...pre-existing conditions, etc. (not every cirrhotic patient is given the go-ahead to treat as you well know) he could maybe explore anti-oxidants etc. to help with symptoms and inflammation issues. This is also said for the benefit (perhaps?) of another person with cirrhosis who might be reading this and can't do conventional treatment for whatever reason.
Let this be said once again...I am of the strong opinion that people in higher bx grades try to do the treatment above all else, "if" they are able to. I really believe that you can concomitantly believe in "treatment" under the right circumstances and anti-oxidants and herbs at the same time in other circumstances. I think this is where some of us get in trouble, some people can't seem to make that "compute" in their own minds, this issue can get so emotional. Again..I'm not accusing you of this. I feel you to be a highly intelligent, reasonable person.
I tried to delineate that in order of priority, but like I said, sometimes some of us say something "controversial" or whatever and it can "trigger" a person's emotional response and get lost in translation. I've done it myself I'm sure.
And btw, I know of a few friends with cirrhosis, non-responders or whatever, who are leading "pretty much" normal lives and have had cirrhosis for a number of years, there are degrees to that to.
With all due respect, why do you insist on pointing out the more inferior study, while not mentioning anything about the Israili-Atlanta study with much more credibility?
There's another way to look at this. Firstly, it's been said over and over again that these regimens don't help everybody, why use your empirical evidence of not being helped by them to make a sweeping judgement on it's effectiveness for everyone else? Would a non-responder or relapser on conventional treatment do that?
Secondly, were you badly effected by your experience with herbs and/or anti-oxidants? Any lasting side effects? I think not. These particular regimens we are speaking about (in this study) are relatively benign, if you don't think so, please show me "your" evidence to the contrary.
I am waiting to do the conventional treatment, and I personally do not find it "irresponsible" to talk about a relatively benign regimen that has helped me immensely, (and many others by the looks of it) for the benefit of non-responders, relapsers, stage 0-1, etc. who might very well benefit at least in terms of helping their symptoms and possibly inflammation issues, I don't know how many times I have to qualify that. (I know I sure apprecitate the fact that they have helped me with my symptoms.) I would think it irresponsible not to, for these people who "cannot" do "conventional treatment." Why should they be shut out of something that could possibly help them?.. for the sake of the naysayers??? Again, with all due respect.
Forseegood said prev: "I think this is where some of us get in trouble, some people can't seem to make that "compute" in their own minds, this issue can get so emotional."
I agree with much of what you say, but I don't think the problem in my case has anything to do with carrying those two issues at the same time. Again, I am not against exploring antifibrotics whether they be drugs, herbs, etc.
What I do fear -- and HCA said it so well -- is that many come here scared and sick with little background in Hep C. They are looking for answers. And while again I agree with your overall take, to answer a stage 4's question with a study on antioxidants seems counter-productive at best.
This is above all a support group first (Medhelp's terms, not mine) and intellectual discussion group second. :) We should all keep this in mind.
HCA is way off base in calling it "irresponsible" for us to post studies about alternative treatments. His/her attempt to stifle or censor our discussion is what's really irresponsible. We're all adults here. Everyone is free to come to their own conclusion(s) about the significance of posted studies. If a particular study don't interest someone, they should simply ignore it.
I think HCA, like Jim, is making some connection between the posting of the above study and the Stage 4 poster. I, for one, wasn't encouraging that person to forgo treatment for alternatives and I don't think you were either.
If my posting had been the fifth or sixth in line on this thread, would that have been okay? Perhaps you should take me at my word that I wasn't advocating forgoing conventional treatment. YOU misunderstood.
Tall said prev: "if my posting had been the fifth or sixth in line on this thread, would that have been okay? Perhaps you should take me at my word that I wasn't advocating forgoing conventional treatment..."
Well, then I guess we're all on the same page finally. We all think that because "Painintheside" is a stage 4, that the best route to follow is to get evaluated for conventional combo treatment. Like HCA, I also thought your post was in direct response to Paintheside's since it directly followed.
Ahhh, I get it. You just want to stir up some conflict...right?
You say to Foreseegood above...."to answer a stage 4's question with a study on antioxidants seems counter-productive at best."
Jim, get a grip. I wasn't "answering" Painintheside's question. I wasn't addressing her/him at all. Quit connecting dots that aren't there.
I'm sorry about your recent diagnosis. I know it's traumatic to get that kind of news. As you can tell from the posts above, there's some confusion among some of our newer members about my position on treatment. Allow me to make myself very clear:
At Stage 4, you MUST treat with Interferon and Ribavirin. There is no other reasonable option at this time for you. If I were in your shoes, I would be seeking conventional treatment immediately.
Please excuse me for hijacking your thread to post the study about alternatives. I did not mean to imply, in any way, that you should pursue this path. That's why I didn't address my post to you, nor reference you or your case. Again, sorry for the confusion, if you had any.
Best wishes to you.
Yep, we're on the same page. I'm glad you finally figured that out.
Ha, things heat up fast around these parts huh? At the risk of sounding like I'm breaking off into a team, something I try to avoid...on the issue of the now nortorious posting of the Israili-Atlanta study on this particular thread, why don't we all just give Ms. Tally a break and take her at her word? If there was a concern that a newbie might miscontrue this; Lord knows she's explained her real intentions enough for me.
As to newbies coming to this board and other hep c boards...hurting and wanting answers...I would guess we are all highly sensitive to this sad situation..in that we were all "just diagnosed" newbies at one time ourselves. But that's not to say that these people are not intelligent and discerning individuals, capable of reading and comprehending any and all information put forth. It's ultimately up to them to sort it all out for themselves (along w/ their docs) like we did. They are forewarned at the beginning that we are all just talking about our own personal experiences and positing our own personal opinions, none of us are trained medical doctors. We can only exert so much influence.
Which begs the question, can we all at least try to read each other's posts carefully so we rarely have to keep reiterating points made when there are extenuating circumstances? I realize I'm a relative newbie just posting here (even though I'd been lurking for a lot longer)and I don't want to come off as an "impudent upstart", but man, I get soooo tired of having to qualify my statements over and over again. Maybe even more tired than you guys are having to read it! Sorry if I come off as impatient. I'm probably just being a butthead.
It is great that we can at least come here for comfort and support and esprit de corps, along with all the information.
Thank you everyone!
First, I am a female. I am stage 4 out of 4 and Grade 3 out of 4. I will be starting tx in about two weeks. I see the director of hepatology of Cleveland Clinic. I left his office in a daze after receiving this news and didn't even think to ask him if i could take vitamins or things like that. Im going on Pegasys and Copegus. Now knowing all that, can anybody give me advice on how better to take care of my liver until tx starts. I think i will be on tx for 24 weeks. Does that sound right with stage 4? Still looking for help please? Tjanks you!
Sounds like you're in good hands at the Cleaveland Clinic. Based on the 24-weeks of treatment, I'm assuming you're a genotype 2 or 3.
Genotype is the strain of hepatitis c virus you have. Fortunately, genotype 2 and 3 are the easiest to cure with an average cure rate of around 80 per cent.
You'll get various advice about vitamins, minerals, herbs, milk thistle, etc. The important thing at this point so close to treatment is to run EVERYTHING by your doctor first. If he's hard to reach, ask for his Nurse Practionier (NP) and he or she will give you the rundown or relay the message. This includes vitamins, supplements, milk thistle, drugs, anything. And, of course, the obvious -- no drinking or recreational drugs at this point although your doctor may allow marijuana or medical marijuna once on treatment to help with side effects.
On a personal note, I was advised not to take any herbs, milk thistle or vitamins containing iron while on treatment. Your doctor may or not have a different take. The inteferon/ribavirn combination is a pretty powerful one and really doesn't need much help especially with your genotype. The only other thing that can affect treatment is your weight. The closer you are to your ideal weight the better.
It's normal to be in a daze at this point, but the two most important points to remember are first that you have the easiest strain of hepatitis c to cure and second, that once you're cured the liver has the unique ability to heal itself.
Stick around, ask questions, and we'll help as much help as we can. Sorry this whole thread got off track but I hope you find this helpful.
24 weeks is the protocol for genotypes 2 and 3,which respond better than type one.
This is good news,(that you have type 2or 3}
I wlil just drop my own profile in,if no-one minds.
MALE AGE 55
LOCATION; LONDON UK
GENOTYPE; 1A 1B
BIOPSY 2003- STAGE 3 OF SIX,OCCASIONAL BRIDGING
CURRENTLY RE-TREATING WEEK 21,PREVIOUS TREATMENTS,PARTIAL RESPONSE
VIRAL LOAD 1.3 MILLION I.U
AT 12 WEEKS 606 I.U
VERY ANEMIC-HG 8.7
EPO (PROCRIT) AT 80,000 P.W
REDUCED RBA -NONE FOR THREE DAYS,THEN RESUMING AT 1200mg.
BLOOD COUNT TAKEN WEEKLY.
I AM A SOFA CASE AT PRESENT (ONLY FUCTION COUPLE OF HOURS PER DAY)
I am genotype 3a and V/L of 1.5 mill. I am 5'9" and 122#. My doc said about 70% chance of clearing (i guess because of the cirrhosis). I had active TB about 14 years ago which is a concern and also had 4 reactivations of Toxoplasmosis in my eyes, which also is a concern. Its a wait and see game I guess with these issues. Is coffee and red meat ok to eat? And is mary jane something that can really help side affects of tx? Im all for herbal supplements....lol!
P.S. I am having that stomach scope next month and also I have polycystic kidneys to deal with too!
As a cirrhotic 3a, I was advised to treat for 48 weeks. They report high relapses with less treatment. At 48 weeks they claim 60% probability of cure. I'm a 47 yo male, with reasonable body mass index (5'9" @ 163 lbs naked, dry & empty, lol). I think males are harder to treat.
I was told red meat was OK in moderation, and coffee was a 'non-issue'. Just to maintain a common sense healthy diet. As Jim says, check with your doc, your mileage may vary.
My first treatment in 2000 was the old,non-peg combo.
Biochemical response only.
Treat.2 in 2001 Roche peg.+RBV 1000mg,RNA down to 6500.
Ceased owing to g.i problems.
Treat.3 2002,Same regime RNA down to 3000 at 12 weeks,ceased at week 18 due to anemia.hg 7.5
Treat 4,in progress.
My expectation is that I'll test undectable at wk.24,but that anemia will end treatment pre-maturely.
If so I will re-treat with Viradimine replacing RBV.
I also have the option of low dose IF mono maintainance therapy.
I changed doctors this year.Both are top dogs,Professors of Medicine specialing in viral Hepatitis.
My Doc. said he would like to use Fibroscan,but it cots
Welcome from the other side of the pond :)
Your profile is similar to mine. Curious what you treated with the first time (Peg Intron, Pegasys, Riba, dose, etc.) and what specifically you mean by "partial response" in terms of when you tested viral response and results.
I was also a sofa case for the first 12 weeks although my hemoglobin never dropped that low. Things are better now at week 28 but not a lot. Just gotta keep your eye on the prize.
Hope you have better luck this time around. A few days ago I spoke to a leading researcher and he said that in five years he thinks he will be able to cure just about anyone with the newer drugs currently in trial. So let's hope we both clear this time, but if not, my plan now is probably to wait for the newer drugs.
BTW do you have the Fibroscan test in England. We have three or four test units in the U.S. in trial for FDA approval. It's a very exciting development for dx, tx and research.
Marijuna (medical of course ;)) was suggested to me during tx to help nausea and weight loss. The drug does not agree with me so I declined. I personally see no problem with red meat or coffee but as I mentioned before run EVERYTHING by your doctor or Nurse Practioner. If they're going to treat you effectively, you must keep them informed of what you're taking. Your weight sounds great and this is going to help you with treatment.
Not to second guess the esteemed Cleaveland Clinc (OK I will ;) ) but have you discussed treatment length beyond the 24 weeks because of your cirrhosis? Sometimes people treat a little longer with cirrhosis, especially if they respond slowly -- although in your case your other medical concerns may be an issue.
Ask your doctor if he's planning on testing you for viral load at week 4. That tells your treatment team an awful lot regarding how the drugs are knocking down the virus.
BTW the 70% figure sounds very realistic even with 24 weeks.
You've been through a lot. I haven't been following the viradamine trials that closely but conceptually it seems like the right drug for you in the event you don't clear at week 24. Curious...can the doctor's just start substituting viradamine if and when your hemoglobin falls too low, rather than taking you off treatment and starting over? The Vertex and other protease inhibitor trials also might be of interest.
Forgive me for stating/asking the obvious, but your doctor wouldn't be the first to make this mistake. Have they checked your iron stores -- specifically Ferritin and Transferrin Sat ? Procrit will not work unless they're adequate. The fix, of course, is iron supplementation. It's strange because we're usually told not to take external iron, but in some cases it is necessary.
All the best with treatment.
Are you seeing Dr. William Carey at the Cleveland Clinic? If so, I'd be happy to talk to you off-line about my experience with him. I was born and raised in Cleveland (my family's still there), but I now live three hours away.
No, I see Dr Zein @ the Cleveland Clinic. But what was your experiences with them altogether?
How was "vacation" ?
Because it was a private doctor-patient conversation, and not a published statement, I don't think it prudent to call the doctor out in a public forum. Nor, if you've so noticed, do I choose to
publically name any of the doctors I treat or consult with. Partly it's because of my own private nature and partly because I would then feel uncomfortable criticising my care which I do on occasion. This was presented clearly as an anecdotal conversation between me and a doctor/researcher I was consulting with. Please accept it in this context.
I should add that I don't think he's alone in this regard. I believe, and someone correct me if I'm wrong, that the esteemed Dr. Schiff told Snook_man something similar. There's really are a lot of very exciting stuff in trial right now and a lot of docs are very optimistic.
I was actually more suprised by his second statement -- that if I relapsed he would not recommend re-treatment with current drugs but to wait a few years until better drugs came out of trial. And he's talking to a stage 2-3. He wasn't even that concerned about re-biopsing me right away although I'm not sure if I agree there.
Does that mean there're any guarantees he's right. Of course not. But statements like this from leading researchers do offer hope and must be somehow computed in making tx decisions.
I'll ALSO add that 37 years ago, the leading heptologist of the day -- perhaps of all time -- Dr. Sheila Sherlock -- told me that my "chronic persistent hepatitis" would burn out in 4-7 years. So, yes, there're no guarantees. :)
Hi, I agree with you about "outing" docs, and anybody else in a public forum, unless the info is already out there and you've gotten direct permission from said personage.
Forgive me if I'm wrong, I know another patient of Dr. Schiffs, Snook might have something else to say, but she told me that Schiff says more like 3 years and maybe longer for the new meds. My own doc said more or less the same thing. If the new meds continue to do so well in the trials - they seem to be even more optimistic because of this. And from what I've been reading, if they do really well in those crucial last phases which they are going into - the Feds will fast track them...so maybe more like 3.
Also, I spoke on the phone with one of the main researchers responsible for the Vertex drug, I tracked him down, ha ha! He was really optomistic about their protease inhibitor; but of course he would be. Some of the things he told me really had me excited. But of course I dont want to get too carried away and I try to be cautiously optimistic about the whole thing.
If you don't know, a few other questions for your doctor or nurse:
1. What is my genotype?
2. What is my current viral load?
3. What is my ALT ?
4. What is my AST ?
5. What is my Platelet count?
6. What is my INR?
These are all simple blood tests you should already have been given.
Thank you for your reply to my confusion. I failed to tell you my age, it is 72. I have come to wonder if the specialist I go to at the VA medical center, and my personal physician have taken the attitude that my condition has reached the hopeless stage, and just don't seem to want to explain it as it relates to my age. They both ruled out the possibility of any chance of a liver transplant, and I can understand that, but I feel that there is more they could be telling me to help me better understand my future prognosis.
I do appreciate your input and realize you are not a Doctor, but your knowledge is very interesting.
Here's the support group I couldn't remember. I'd post my story here first. Apparently, they're very knowledgeable and supportive in cirrhosis, transplants, etc. And please come back and let us know what you find out and how you're doing.
Here's the link:
I can't believe the approach and attitude of your dr!!
I go to the North Shore Long Island Jewish Health System. Dr Bernstein is a top hepatologist with publish work, they have treated people in their 70s and they have done well. GET A SECOND OPINION. And a biopsy if possible. A statement like "stages don't apply to you" make absolutely no sense!
Please see a different physician, you seem to have advanced liver damage, since varices are present, but you should be given the choice to aim for better health. You are still young enough!
I was diagnosed with Hep C back in the early 1990s. In the opinion of the Liver Specialist at that time, he blamed it's onset with a blood transfusion I received following a auto collision in 1968, back when blood was not screened as it is now. At that time he did a ultrasound follwed by a liver biopsy which revield scaring. The Hepatitis has not been a problem except for a couple of bacterial infections with high fever. With antibiotics they were checked.
Lately however,(the last 7-8 months), I have been experiencing abdominal pain and nausea. My present specialist has taken me off all medications, which included meds for HB Pressure. I have been retaining fluids in the stomach and feet area. He put on a 50MG diuretic, and an anti-nausea med. My BP is maintaining great levels, with out these meds that he stopped.
I have some days that are pretty good, and others not so good.
No appetite, and have lost about 20 lbs. during this stretch. I have had recent Colonoscopy which detected no Cancer, but some internal hemorrhoids, and no polyps. I also had an upper GI which uncovered the presence of Varies in my esophagus, although not too large yet. The specialist said that the stages 1-2-3-4 do not apply to my Hepatitis C condition.
He said that I could never under go major surgery with General anesthesia, as I most probably would not wake up from it. He said that in my present condition, I had basically 4 conditions to be aware of and do everything I could to prevent any of them. They are; Infections, Bleeding (and I do have an enlarged spleen), Fluid Retention, and Mental confusion.
I have rattled on here without getting to the question I am asking about. That is, I am developing an occasional HIC-CUP
and it is becomeing more frequent. It's rather harsh to the point that it causes real discomfort in my abdomine and throat. Not steady like the constant hic-cups we are familiar with, but come on individually many times a day, and getting to be worse as time passes. IS ANYONE FAMILIER WITH THIS PHENOMENON?
WOULD APPRECIATE INPUT. tHANKS FOR YOUR PATIENTS, and could you tell this is my first post to this forum?
Thank for stopping by and sorry you're not feeling well.
First of all, none of us are doctors here so our knowledge is limited.
It's difficult to give advice in your case because your doctor is giving you incomplete information.
Some of these questions may be redundant but I would want to know from the doctor: (1) what is my diagnosis; 2) Why exactly do the stages 1,2,3,4 not apply in my case; and (3) What is the treatment plan; (4) Why can't I undergo general anathesia; (5) how badly damaged is my liver; (6) What is the future prognosis.
Also, if I understand your story correctly you only had one biopsy in 1968? Biopsies generally are repeated every 5 years.
Please let us know what you find out and maybe we can then be of more help. If all you get is more vague answers, I would definitely see another liver specialist. You can usually find them at large city teaching hospitals, preferably those with transplant centers. They tend to have the most comprehensive facilities.
I didn't want to speculate based on your first post, but considering your recent post it appears that at least your doctors think your liver condition is too advanced to treat.
The only advice I can give you is to get another opinion if you can. And it should be from a heptologist (liver specialist a large city hospital that has a major transplant center. You'll often find that one place will give up on you, while another is willing to treat. In any event, it is unacceptable for your doctors to keep you in the dark unless that is your wish.
Can't really say whether or not your age/condition makes you a good treatment and/or transplant canidate -- but even if not, maybe there're some anti-fibrotic drugs in trial that may be able to reverse some of your liver damage. And keep in mind, there're some very exciting new and less toxic drugs, hopefully only a few years away, that may offer you some hope. And frankly, your average doctor knows very little about liver disease in general, not to mention the newer strides being made every day. Another reason to seek that second expert opinion.
Last thing...of course you're more than welcome to hang around here for support and to ask questions. But few of us here are transplant candidates so our knowledge in this area is limited.
If you go over to the Janis Web site and tell your story, you might get more help and/or they can refer you to another site that deals more with cirrhois,transplants and anti-fibrotics: http://tinyurl.com/8eqdd
All the best and don't give up hope. Just get rid of the doctor who doesn't offer you any.