Cirrhosis - LFTs - Glucose

I'm diagnosed with 'early cirrhosis'. Six mos post treatment and virus free, my ALT/AST is 31/26. Here's what my docs says in response to my inquiry:

<i>I'm happy with the current enzyme levels.  Teens would be ideal but 20's is fine as well. I think you have a good chance of reversal of damage as I don't think your liver has passed "the point of no return".  Time, of course, will tell.</i>

I'm posting this because we have a few of us with similar damage levels and it might be of interest to the others. "The point of no return". It has an ominous ring, don't it?

Also, a question for the gang about glucose. Mine is right on the cusp of out of range to the high side. When does it become an issue? Should I be concerned now? Should I be working on eliminating all refined sugar from the diet? What else?

[pigeonca]

Regarding glucose, buy a blood sugar meter and test yourself one hour after meals and again two hours after meals for several days to see how high you go.  This will tell you far more than a fasting blood sugar test, which only indicates problems when you're pretty diabetic.  Basically, you should not go over 140 at one hour, 120 at two.  Eliminating refined sugar won't do the job.  First of all, white bread, believe it or not, is way worse than any sugar.  Fruit juice is a no-no, as are most refined carbs.  You will need to play around with this to see what sends your blood sugar up.  There is a wonderful support group, alt.support.diabetes, which you should check out.  And a good book is Gretchen Becker's "Prediabetes."  Metformin is an excellent med for early diabetes/prediabetes. Best of luck.  This is not terribly difficult to conquer if you want to.
pigeon

[copyman]

i have not tx'd yet and my lipids & glucose are out of normal range. there is a direct corralation with the liver and glucuse. my glucose level went as high as 120 with 126 being diabetic so i cut out sugar, carbs, etc and got it down to 103(up to 99 normal). i'm hoping to avoid becoming a diabetic. high frutose sryup is one of the worst things and is in so many foods & drinks, especially soda. they say this is one of the reasons americans are so FAT. kids are even overweight more then ever with drinking soda all the time.  i have read that one of the extra hepatic things that could come with hcv is diabetes so please be careful and get it under control now.

[Forseegood]

Copy that, Copy Man! sorry...anyway, yeah, couldn't agree with you more, high fructose corn syrup, to me, is a scourge on our land... to be a drama queen about it...it's in so many things it ain't funny, and nothing gets your glucose up like that stuff...

[FlGuy]

Those are some attractive numbers.  The envy of many, I'm sure.  As long as you have arrested the damage, you have begun the return.  And it's a question we've had all along - what is it that we recover and to what extent.  I think it was Mike a while back who said something to the effect that it depends on the extent to the area of the portal vein.  Maybe he can give his learned view.  The doc ('the one who should know') echoed what yours said, upon eradication should gain back a stage or two.  The question that I've never heard succintly answered is if there are some dead spots, what happens to those.  Is dead, dead?  In another year that will be a fish to fry for me. I'm grateful that you will have that information for me later on, you trail blazer.
As I said the other day, the endo gave me the 'thumbs up' (and thanks for the remarks). But, there was a 'but'.  Blood sugar has gone awhack again, although not as whacked as previously.
  I have an rx for insulin again which I'm not at all crazy about. But, tx will take care of that pretty soon. If you have not had an HGB A1C, you should. It will give you your average blood sugar over the past 90 days which is a more significant assessment than poking and metereing yourself.
This is where I get lost a little bit.  HCV does affect blood sugar, but I don't know if the effect is from the virus or the damage done to the liver.  If the former, your probably looking at diet modifications (sugar, carbs out, proteins veggies in) and smaller more frequent meals.  If the latter, and you liver is still in self-repair mode, maybe the gooder eating and gradual organic system improvement will right the ship.
But keep in mind, that when we speak of all things like eyes, blood pressure, aches and pains and such these are things that come with graying hair, diminishing hair, fuzzy memory which is God's gift to the over 50 crowd (you just joined the club didn't you).
Goofy, you sound like you're in pretty good shape, for the shape you're in.  And although we believe that having young ones keeps us young, the march of time has it's own pace.
I'm sure that this answers none of your questions, but that's my role here and I intend to meet expectations.  If you haven't seek out an endo and get that perspective.  The whole deal about glucose clinging to RBC's sort of makes my head spin and there may be some bearing on your continued recovery in the hgb department.

[Morgaina]

I really agree with cutting out any processed foods, ESPECIALLY white flour and any kind of sugar or fake sugar stuff (Brian still hangs out with me). I started that about 35 yrs. ago (depending on my particular life environment at the time). I can feel my body gunk up when I get broke, cheap or lazy and eat that stuff (no, I'll never be as good as Rocker but I did try at one point).

My sister is a nurse an told me that there can be a part of your liver that can die but not stop general functioning just occasionally interrupt it. Like when I "hit the tree". (It is now a EVENT with my family). Does make sense as long as the portal veins are still functioning, but I am the mentored one around here.

[pigeonca]

I advocate metering blood sugar after meals for several reasons. First of all, people who don't have problems tolerating glucose don't have high blood sugar, EVER.  From there, the development of diabetes is gradual, and the American Diabetes Association has established limits beyond which diabetes can be diagnosed. And, most importantly, blood sugar levels above 140 - at any time - cause damage.  (With a little hunting, I can find references for all these statements).  

When my brother became diabetic (defined by the ADA at that time as having a fasting blood sugar of 140 or more; nowadays it's 126), he was sent to diabetes class.  A number of his fellow students, also newly diagnosed, already had retinal damage, amputations, neuropathies, etc.  These were not people who had neglected medical care.  They were simply diagnosed too late.  But the medical profession has to establish protocols and follow priorities.  The economics of medicine can be deplored but they can't be thrown out the window - costs truly do need to be monitored in some manner.  

We, who are proactive patients, have the know-how (otherwise we wouldn't be in this forum) to step out of the statistics and demand proper medical care.  If your blood sugar indicates ANY intolerance to glucose you need to know the specifics. Tell your doctor you need that meter. I've found that when I present him with a list of journal references, my doctor usually caves to my requests. I wish I could get Kaiser to pay for a facelift.

pigeon

[Eisbein]

Jim and I just finished a discussion on glucose, as mine rose post tx into the abnormal range, and he was concerned about his.
Lots of skin talk of course, but glucose and lipids are discussed in detail.
Started 8/22 worried about HIV/AIDS, and continues 8/15 symptoms of Hepc, no, the other way around.
Skip the skin stuff if you can. I disagree with the idea of bying a meter and testing after a meal. Glucose readings depend on the type of meal, and the glucose challenge, which would be the next best thing to test post prandial, is hardly being used anymore. Just asked my endocrinologist about it. Those posts are at the bottom, and go to archive any moment.

Ina

[mikesimon]

If one is on TX or has stopped TX recently an HbA1c may not be reliable. It is likely to be on the low side due to hemolytic anemia that many experience while on TX.
From:http://www.journals.uchicago.edu/CID/journal/issues/v37n4/30812/30812.text.html
"Because HbA1c measurements represent an average of serum glucose
concentrations measured over the course of &#8764;120 days, the patients could have had both very high and very low glucose levels within that period of time and still have had an estimated average glucose level, as measured by the HbA1c value, within normal limits. However, other measurements of glycemic control, all of which were abnormally high, argue against this possibility.
During hemolysis, a state of shortened survival for circulating erythrocytes, the number of glycosylated hemoglobin molecules in circulation is reduced. In addition, the number of immature and less-glycosylated erythrocytes increases to relative abundance. Medications that cause even subtle hemolysis without anemia may interfere with the accuracy of HbA1C measurements [6]. All 4 of the patients in this series were taking a medication reported to cause varying degrees of hemolysis. Two of the 4 patients were receiving dapsone [7], 1 patient was receiving ribavirin [8], and the last patient was an African American man receiving TMP-SMX [9]."
I have found glucose monitoring devices to be extremely accurate nothwithstanding Eisbein's endocrinologist's opinion to the contrary and I compare my fasting glucose with the lab's on a  weekly basis and they are practically identical. Of course, isolated readings here and there won't tell the story and post prandial readings are critical but if you are willing to poke yourself 4 to 6 times a day you'll really know what's going on. I had an HbA1c of 2.8 once during TX back in 2001 and no one could figure it out. After a lot of research I deduced it was the ribavirin caused hemolytic anemia. I'd wait at least 3 months and 4 would be better after stopping TX to get an HbA1c that will be reliable.
I'll try to dig up cirrhosis material if I get some time.
Mike

[Eisbein]

You are correct, measuring the fasting glucose with those little home meters would be one way of doing it.
I was referring to the post above, were pigeonca suggested to buy a meter, and measure after a meal.
Sorry if I was not clear.

Ina

[GoofyDad]

Thanks for all the intelligent comments. What did I ever do to deserve those? I'll definitely follow up on the sugar.

On cirrhosis regression, I'll have to pull out my informative bx reading. It talks specifically about intact portal veins an how that does not support a diagnosis of 'true cirrhosis'. Sould like maybe that's the distinction that leaves the door open for regression.

FLguy asks: you just joined the [over 50] club didn't you.
The he<x>ll</x> you say you dogone cotton picker. 48 pal, and that ain't for a couple weeks yet anyway! BTW: I'm gonna be in JAX next week (I think they have a Hooters on every corner there) - typing this reminds me I forgot to get a hotel - oooops.

[GoofyDad]

Thanks for the discussion guys. I'll kick things around when I see my PCP in a week. If I'm getting this, generally, it seems that the same protocols apply to me as would apply had I a healthy liver.

---

Mike says: if you are willing to poke yourself 4 to 6 times a day you'll really know what's going on.

No wonder that forsee is so danged smart.....Friendly too.

[FlGuy]

Enjoy Jax.  I almost ended up there.  If not for the kindness and patronage of one of the big dogs in the company, I'd be living and working there now.  I go there a couple of times a year but our office there is on the south edge of the city.  Never been to the real downtown area but hear that it's pretty nice.  Good luck on finding the Hooters you seek.  If you have some free time scoot over to St. Augustine.

[Kalio1]

I wonder how many of us Geno 3's are cirrhotic?

[mikesimon]

I test myself with a "little home meter" before meals and after meals. I got my doctor to write a script for additional test strips(covered by copay) which gives me 40 test strips a week and I use that many and more. My HbA1c is 4.5 but I am compulsive about glucose control. I became diabetic either as a result of liver transplantation (which isn't uncommon) or as a result of steroid intravenous treatments for rejection (this shocks the pancreas). The point is, after transplantion there is a detailed regimen of drugs and monitoring for the liver alone so it was quite easy to stick glucose monitoring in there with the rest of that elaborate routine. For people that are not as compulsive as I am home monitoring may not be adequate or appropriate. But, for those nuts who don't mind pricking the side of their fingers 5 or 6 times a day they should accurately know their glucose situation. Mike















home monitoring may not be adequate or appropriate.

[Eisbein]

Obsessive compulsive in regards to glucose monitoring LOL...but that is your only flaw, right?, I'll overlook this one :)

Listen, I would like to come back to the post prandial testing, but radiology saw something on my mammo, and they scheduled me for an 8AM MRI, so I have to go to bed early.
It is very difficult for me to put my thoughts together and write, so leave me a note that you be back. My husband is diabetic, and endo doesn't want us to test after meals, only fasting.
I like to give you his explanation tomorrow, but late in the evening.

Ina

[mikesimon]

I'm not going anywhere. Where else do I have unless I do some work?
Mike

[mikesimon]

Last question first: I use insulin - N and Lispro.
I agree that one slice of bread (say 12 carb grams) should not result in 139 post prandial reading. Though that might be considered to be within "normal" post prandial range I would think that anyone testing PP would know that their carbohydrate intake was too little for that result and bright red flags would be waving wildly. If, however, the carb intake was 75 grams the PP would not be as troubling. You stated "Another words, there is no chart that would correlate for example 352 carbs should = a 2 hour post prandial rise to 131" I know you are very bright so I am puzzled by that example as 352 carbs reflects what I would consider to be binge eating and is way too many carbs for anyone, be they nondiabetic or diabetic.
I can't argue with your doctor's approach - it's working and with your profile and 60 grams of carbs per day in addition to exercise I would expect that it would. I saw a study, maybe 1 or 2 years ago, that showed that blood sugar correlates with the incidence of cardiac event in a parallel relationship and this was true even below the threshold for diabetes. In short, sugar in the blood is bad for everyone and as blood sugar increases so too does cardiac event in a parallel relationship. It was expected that as blood sugar declined to the nondiabetic number the parallel lines would merge together but they did not- they remained parallel. Am I making this clear? Probabaly not so I'll leave is at: sugar in the blood is bad.
Karen, my better half, can eat ANYTHING & EVERYTHING and her blood sugar might get to 115 - it might, but it will likely be lower. Her insulin response in abundant and efficient - she has no problem. You said "He thinks that charting the fasting glucose over approx 6 month will give him the answer, and apparently he is correct, because all my 2006 medical books confirm this approach." What is the answer he's looking for? I would guess that you're insulin challenged, at least, and that with the diet and exercise plan he suggested he hopes you can achieve and maintain adequate glucose control. I would also think that he would be able to tell you what he wants your PP to be, given that carb intake. Yes, strips are expensive and especially so when one tests as frequently as I do. Since I am diabetic my goal is tight control. I have heard diabetics say that their blood sugar isn't that bad because they don't need insulin. I don't really care what one uses as long as they are controlled - control is crucial. My situation is not typical. The highest my cholesterol has ever been is 120. My triglycerides are low and I am not overweight. While doing my first  TX I had trouble eating anything due to nausea. I asked if I could eat a donut in the AM and cover with insulin. I was told it was okay so now I eat what I want and cover - that explains my frquent testing. I think that for a person concerned about their glucose, if they educate themselves about carb intake and test with a meter before and after meals they'll know whether they have a problem. That's really what I was saying. I don't think we disagree on that or anything that I can see. It seems as though the threshold for the diagnosis of "diabetes" lowers as time passes and knowledge increases - so too has the recommended HbA1c for diabetics. I don't care what they call you so much as what is your average blood sugar - the lower the better. I doubt I've said much, if anything, after all this writing so I apologize if I've merely rambled. I wish you good luck and good control.
Mike

[Eisbein]

Hi Mike, I am trying to sum up what my endocrinologist said.
I told him, I wanted to use my husbands glucose meter, and check my fasting, as well as the post prandial, reason being, that on the monthly CMP's, my glucose kept fluctuating between 102-104. That had started right after finishing tx, and I became concerned.

He discouraged post prandial testing, saying that there are no charts that correlate the carbohydrate intake with a 1 or 2 hour post prandial rise in glucose. That for example one slice of bread should not bring on a rise to 139, which would still be considered normal, but would be too high for a single slice of bread.
That people tend to underestimate the amount of carbohydrates they take in with any given meal...not counting the carbs in sauces, dressings, ketchup etc...
Another words, there is no chart that would correlate for example 352 carbs should = a 2 hour post prandial rise to 131.

He thinks that a 2 hour post prandial rise to 140, and a 1 hour post prandial to 120 are general numbers.
That if a patient has a rise of above 140 after eating a couple of french fries obviously has a problem, and that in such a case the fasting glucose would also show elevated numbers.

Like I said to Jim, the questionable period arises when a fasting glucose is consistently between 100-126. In that case, in order to establish insulin resistance, he measures also the triglycerides, and if they are also elevated, he starts handing out diet and exercise leaflets. He wouldn't dream of waiting for a patient to get a reading of 126, he considers consistend readings of 100-126 pre-diabetic, and calls for the war lords.

After watching my glucose (102-404) and elevated triglycerides (225) for about 7 month post tx, he insisted on a radical reduction in carbs (below 60 grams a day), and at least 6 hours a week of exercise. I followed instructions for 2 month, with dramatic results...glucose 97, triglycerides 112.

He thinks that charting the fasting glucose over approx 6 month will give him the answer, and apparently he is correct, because all my 2006 medical books confirm this approach.
Using the glucose meter or lab results makes no difference.
But free glucose meters and testing strips are only given for free to established diabetics. That stuff can get quite exspensive if one has to pay out of pocket.

Well, I am not sure I made myself very clear, but this is the best I can do with pencil and paper.

Give me your take please.
And how are you keeping your glucose in such a good range?

Ina

[Eisbein]

Mike, I am a dead duck tonight, please come back tomorrow late, I like to add a few more words to the glucose ramblings, and clarify a few things. I wish Jim would read this, because this was a concern of his. I think I save this thread for him.

You are calling me Eisben, that means nothing...I am Eisbein, which is the name for a German dish, sauerkraut and pig foot, or pork foot...really delicious stuff...hey, I just gave my enemies ammunition !!! :)

Ina

[mikesimon]

I noticed that I misspelled your name the last few times. I used to get it right but I seemed to have lapsed. I'll check back and see what new stuff you have for me. Mike

[Eisbein]

Mike, I am screaming mad. I just wrote this long post to you, and when I clicked the post button, it disappeared, as well as med help site.
I am so pissed, because it is 2AM, and it took me half an hour to write. Did that ever happen to you?
I have a full plate for the next 5 days, so I wont't be able to write.
I apologize, I really wanted to beat the post prandial glucose issue a little more to death.
Now how can I click "post", and the whole thing goes away.
Good grief, if you could hear me cursing...mf, cs, f..st!!!
Catch you some other time.

Ina

[mikesimon]

I've had that happen to me and I was so mad I could spit. I bet you haven't heard that expression in a while - if ever. There's no rush about this. I'll check here and, if and when you post, I'll see it and get back to you. All is well. Mike

[Eisbein]

Hey Mike, are you still reading here. I can't believe this thread has not gone to the archives.
I lost my train of thought in regards to the post-prandial testing.
Pre diabetes has moved to the back burner.
They saw something on my breast MRI, and it was recommended I see a surgeon for further evaluation.
Of course I see myself already at Sloan Kettering...so difficult to remain positive, while trying to overcome post tx depression ( mild though).
Besides, I am battleing with the same sides as DD. He has yet to mention something that I can't relate to.

Well no, that is not correct...he didn't chime in on the cannibalism, LOL...oh what the heck, I am just running my mouth saying nothing.

I wonder how long they plan to keep you on low dose, now that you are negative again. Hope you will ask what they are trying to accomplish.

Anyway, just wanted to say hi.
Ina

[jmjm530]

I have a weeks pass to a local gym pool but held off using it until I saw my last derm. I wanted him to see me 'before' in case it changed things. I have one more derm to see so may wait or may not. My skin appears to be A LOTS less sensitive these days so I don't think I'll have a problem and the plus may be that the cholrine will repress any fungal or bacterial issues. We'll see.

As to V-Beam or IPL, I read it both ways but as mentioned, yesterday's derm acknowledged he didn't know all that much about it and referred me to a laser specialist. Sort of pissed off that I spent $250 consulting the wrong doctor especially since his web site and office staff suggested that's what he does. Turns out he mostly does cosmestic surgery and mostly nose jobs. LOL. Anyway, he seemed honest, did make some helpful comments suggesting that my head "fullness" may indeed be more related to tightened neck muscles than rosacea or sinusitis, gave me a good consult and his office manager was kind of hot and she was either being professionally very friendly or interested. We'll see on that. LOL.

[jmjm530]

That should be "turns every pimple into a mountain (not molehill), of course. I am curious what this shrink has in mind with brain
"retraining" so let me know. A couple of years ago I saw a doc on Nick Nolte where he was on a suitcase full of supplements and seeing a doctor who used a video-game like machine to "retrain" his brain. I'm telling you, that guy really seemed like a mess. Nolte that is.

[jmjm530]

I'm supposed to call her regarding an insurance form so I have an entree if I want. Fortunatly not planning on having any work done there cause based on my relationship history don't want someone I'm dating in the same room with me under sedation and a knife. LOL.

"Retraining" the brain sounds feasible and let me know what protocol they use. Anything to keep the brain active should help. Things like crossword puzzles, chess, cards, even writing. Passive stuff like watching TV probably won't.

Like I said, skin is almost normal but the real test will come this winter when I go outside for walks. And the real, real test, next summer when I will try some outdoor sports. This summer as you know I've been babying the skin -- no sun, nothing.

My physical strength and stamina are fine -- ran some stadium steps today -- but seem to have lost some motivation. Part of the problem I think is that I've been doing nothing for over a year now -- no work, very little social contact, etc. -- and it's hard to jump back into the saddle.

I did try about two months post tx, but the rosacea was a big set back, sort of like a kick when I was down. Maybe still haven't gotten up even though skin is better.

You say: "There is so little I enjoy now, I can't get exited much about anything."  Yes, I have that too. Maybe part of the isolation thing again. Thought of taking some ADs but had a bad reaction to Wellbutrin a few months ago. We'll see. Chinese herbs are another route, might also help with your brain fog. If I did it this time I'd seek out someone with credentials like Misha Cohen. Again, we'll see.

What's with the 9-month post tx PCR? You really think that necessary as long as your enzymes are normal? My next PCR will be at the 1 year mark and then the 2 year mark. Beyond that I doubt if I will ever test unless my enzymes spike.

What else -- GERD is like 90% gone and the rest I don't really care about. Take a Pepcid AC maybe twice a month if I eat bad or too late. One of the days I'll probably get scoped again to double-check on my short-something Barrets. Hope it stays "short" because don't want to go back on PPI's. Sinus problems no worse than pre-tx and same with Prostate. I think tx just turned every pimple into a molehill. Right now I'm taking NO medications although I'm sure I'll be put on Lipitor later this month. Will see someone else on laser eventually but now the problem is that there's no redness to treat although you can see the veins if you look hard enough and I have no doubt they could become inflamed again with too much sun, etc. Maybe a little bit of that V-Beam you talked about to nip the bigger veins on nose, etc. I mean I probably wouldn't even be diagnosed with rosacea now if I walked into a new derms office without giving prior history and photos. In fact, when the hot lady at the nose-job derm came in to give me the names of some laser docs, she seemed suprised at the dx of rosacea because she couldn't see any redness. But hey, I've got the photos :)

What else...sleeping more than normal...some minor (hopefully) stomach issues and bloating. Doc thinks it's probably added fiber in diet. I'm having some x-rays, sonogram done for liver and he said it will pick up on the stomach. No real discomfort but not 100% normal either.  He also told me to take the serum insulin test when I mentioned I thought I may have pre-diabetes. Are you familiar with the test?

That's about it. A good year and a half out of my life so far, but I don't have to tell you that. On "paper" I really look good, just have to get my mind to catch up with the body I guess.

Be well.

-- Jim

[Eisbein]

Just found this post, didn't think you or Mike were still checking.

...was kind of hot and she was either being professionally very friendly or interested. We'll see on that. LOL.

Well now, that situation looks complicated. Unless you are planning a nose job, not sure how you can go back to the office. Maybe a question about the bill, or you lost the receipt and need it for tax purposes would warrant another call. I guess there are always ways.
I have debated ripping some shingels of my roof in hopes to get the roofer back :)

I met through med help a lady that lives only a couple of miles from my house, and we are talking a lot on the phone. She saw her hematologist, and he has tx patients with interferon for Leukemias, not the peg kind though.
Apparently he has had plenty of complaints about post tx brain fog, and he is sending patients to a psychiatrist who is retraining their brain, as I understood, no drugs.
I am more than interested...what do you say to that, is that possible?
Hope you see this.
Is your brain clearing up? Mine is not, coupled with some depression and constant anxiety. I am pretty uncomfortable in my skin, but I can attack only one problem at a time, so brain stuff will be addressed early next year
My 9 month PCR will be drawn on monday.
I thought I would be enjoing SVR life, but still not, just too many post tx problems.
I wish you would talk more in details about any post tx issues, I mean other than skin. Looks like we are getting Rosacea finally under control. But how about energy, motivation, focusing, concentration, joint stuff, intestinal stuff, sleep disorders.
There is so little I enjoy now, I can't get exited much about anything.
Luckily I managed to divorce med help somewhat. I only read posts from "old timers" now, or if a headline grabs my interest.

I talked my endocrinologist into lending me one of his books, guess the title...The metabolic syndrome.
One thing that jumped into my face...protease inhibitors can acutely induce insulin resistance, they are talking of course about HIV drugs. But that side may also transfer to the HCV drugs.
I still don't know if diabetes must be part of of the MS, in order to be called MS. I am beginning to think not, but paves the way for development of it.

Just rambling again,
Ina

[Eisbein]

You are not in an enviable position. The dating scene is a minefield, for both sexes. Yet I may be joining at some future date. Hubby is decades older, and unless fate has a cruel joke planned for me, I'll be leaving scent marks in the bushes...a women in her sixties lol..that is when I get this testosterone issue resolved.
He, hubby, thinks I ought to vacation in Alaska, were the ratio is in my favor, and unearth a retired professor who fled from a menacing world looking for solitude. Of course he means when I am a merry widow.
Am I making sense here, or am I on one of my riddle talks?
Anyway, the problem is, I had the best, and not sure if it is possible to change expectations.

Larry King interviewed Robert Blake after he was reliesed from prison, and he asked him, if he had only one wish, what would it be. Blake...to fall in love one more time. He was 72 at the time of the interview.
These september affairs, they can simmer along, or they burn everything in its path.
As long as you are prepared....get moving...and I surely wish you luck.
-------------------
Looks like you are doing not too bad overall. Can't say the same for me.
Nope, I am not familiar with serum insulin testing. But if you find out, let me know too.
The shrink turns out to be a psychologist in Idaho, so my insurance may not cover him. I will call this week and dig up more info. Nothing moving too fast here. Got a colonoscopy coming up, and if he can't get all around to the cecum (where it hurts) I will get the camera pill.
Then an excisional breast biobsy, and, and, and...surgeon gave me 90% that it will be nothing.
Brain will be last on the list, even though it's really first, but got to have a body to carry the brain around, so in that sense body comes first.

V-beam takes care of the little ones, IPL zaps the bigger isolated ones...is that not how you understand it too.

Now I am reading that diabetes precedes the metabolic syndrome.
Good grief, that whole subject is surely confusing.

Yeah, I am testing at 9 month. Nervous nelly until the one year is in. Also plan on moving, but woudln't if it came back pos. It does happen you know...somtimes, like 1/2 % or so.

Lets see what your cardiologist says.
I bet your diet is out the window, low sodium never got of the ground, and home cooking was wishful thinking. Prescription...statins for you.

No, you are not diabetic :)
Ina

[jmjm530]

"V-beam takes care of the little ones, IPL zaps the bigger isolated ones...is that not how you understand it too.
------------------------------------------
No. IPL (not technically a laser) works deeper and more subtly. V-Beam (a laser) works more superficially and more dramatically. Less treatments needed with V-Beam but potentially more risky in the wrong hands. On the other hand, potentially better results. Last laser guy I saw recommeded 5-7 IPL treatments first and then he'd finish off any veins with V-Beam that the IPL missed. That would cost big bucks. LOL. Right now, face looks pretty good, like pre-treatment THANKFULLY so not sure what the next laser person will recommend, if anything. My guess is V-Beam but only for some obvious veins on nose, etc, that I had prior to tx. In the old days they just zapped those with an electrical device, maybe still do. My concern is how the skin will hold up during the winter and next summer. If it would stay the way it is now I wouldn't do anything. Of course, both rosacea and seb derm are cylical but I'm trying to be optimistic. Current daily regimen is wash face twice a day with Cetaphil Cleanser. No medications, no moisturizers, no sun screens. If I feel a very mild "itch" at night I hit it with the Clindamycin the next morning. If I see a pimple starting, I hit it with the Rezamid or Sulfaced. The past two weeks just used Clindamycin one weekend and the Rezamid one day. I'm ready for the swimming pool test but maybe leave well enough alone. LOL. I'm telling you, for a while I though there would be no light at the end of this tunnel, what a nightmare. I hope it continues like this and your skin clears up as well. It may take you more time since you were on the treatment drugs longer, but I think time is the healer.  

Here's a Cetaphil Cleanser study: http://tinyurl.com/p5vzg
Good stuff. You can use it with and without water. Anything you don't wipe/rinse off acts as a moiturizer.

[Eisbein]

I want you to know, I wrote my comments about your diet first, than I went upstairs to read, and what do I see...salmon addiction !
So, who says I can't finger the bad boys.

Thanks for the laser talk. My spiders are tiny, tiny, and very close together, very much on the surface, and lots of them. Maybe that's why she suggested the V-beam right away. But she is big shots nurse, and not the laser tech. I will consult with the tech in about 3 month.
In the meantime I have an ultrasound of the legs done. I consulted with a vascular group about some bigger spiders on my legs. They bother me to no end, I mean the looks. They do things different there, only work on legs. They laser the real big ones, the ones you can't see, and inject the little ones. They apparently use a probe, and stick that thing in a big vein, turn on the juice, and pulverize them. Sounds easy enough, but I don't like anything injected into the little ones, so that may become a problem.
Big shot only works on facial stuff, and he said the V-beam is not suited for the legs at all.

I am having a cortisol challenge test done. I can't accept the fact that I am reacting so poorly to stress. I mean if I see somebody wearing a blue and a green sock, I can stress over that :), you know what I mean. And I certainly was not that bad before, or even during tx. I don't have full blown Addisons disease, but I think adrenal fatigue is a real possibility. Doctors usually dismiss that, but I won't let that slide. They also have a saliva test, which measures the cortisol in the tissue, and is supposed to be more accurate.You spit in a different container several times a day, because cortisol level fluctuate during the day, with the highest level in the morning.
For that I would have to go to an alternative practioner.

Did you ever read about adrenal fatigue? I know I keep coming back to those little glands. But they also make DHEA, a precurser to testosterone. I am below normal on DHEA, and I bet all my money, that this weekend I will be posting about zero levels of testosterone.

Like I said to forseegood, impossible to prepare for everthing.
Do you think in my wildest dreams I envisioned I would be posting here 9 month post tx about no libido, adrenal glands, pimples, rashes, spider veins...lordy lord...I was prepared for all kinds of issues, just not these.

I am saving this thread, got to keep your face regimen on file.
Never heard DD talking about adrenal glands, I wonder if he had them tested.

Nooo, I don't regret tx, not for a second. It's just the way the ball bounces for some of us.

I thought that was a great idea to take pictures of you face. Wish I would have thought about that myself. I do have pictures running around with a face mask though. Wouldn't mind posting them, but don't know how to do that.

What do you think worked best on SD. My forehead, eyebrows, and chin don't seem to respond to anything. I thought it would be harder to become rosacea SVR...thought it would be the other way around.

Just rambling again.
Ina

[jmjm530]

I also found all that seb derm shampoo stuff they gave me did nothing but irritate and dry out my skin. Same with the anti-fungal creams like Keratazanole (sp)? Right now I'm using no moisturizes at least at night. But when I did use one during the day it was Cetaphil Cream moisturizer in the can. Not the Cetaphil lotion moisturizer in the bottle. The weird thing with seb derm is that while the skin appears to be all dried out, in fact seb derm is caused by overactive sebaceous glands. In other words, you may think your skin is dry but in actuallity it may be oily. Or both at the same time. Very confusing indeed. The trick seems to be to hit it with lots of different things as long as they don't irritate the skin and by that I don't mean sting a little for a minute or so because that is inevitable in the beginning. Right now my seb derm is like 95 per cent gone with zero flaking. Three months ago it was like a snow storm from my face and scalp.

[jmjm530]

What do you think worked best on SD. My forehead, eyebrows, and chin don't seem to respond to anything. I thought it would be harder to become rosacea SVR.
==========================
Assuming your seb derm isn't like raw, raw -- I'd use Elidel twice a day and Clindamycin gel once a day. You could also try alternating Sulfacet R in the mix instead of the Clindamycin like once every other or every three days. The Elidel acts like a steroid but it isn't nor will it thin the skin or cause steroid rosacea. The Clindamycin and Sulfacet have anti-fungal and anti-bacterial properties, as does the Elidel. If your seb derm is very raw, you may have to knock it down a little with a steroid as much as I hate them. If you have to go this route, don't use the steroid more than a week and then taper off maybe with hydrocortisone for another week while adding the above. Also, don't be surprised it the Elidel makes the skin a little redder for an hour or so after it goes on. Normal. You may also experience some minor sides from it (warmth, nasal congestion etc) for the first 3 or 4 days and then it goes away. The aforementioned is my own little concoction -- a little here and a little from there -- that's how I got results -- sort of intuitive experimentation. -- do I have to state I'm not a dermatologist, I just play one since I've treated for Hep C. LOL. Oh, yeah, use Cetaphil cleanser. I'll address the rest of the stuff another time.

Be well.

-- Jim

[Eisbein]

Do you think our diagnosis of rosacea was correct?
I am beginning to think it is kind of a pseudo rosacea...fake,
phony rosacea. Looks and smells like it, but is not. It's just a
feeling right now. I thing this may very well be our only bout with it. How much knowledge is out there about tx induced rosacea, very little. Maybe a better word would be...temporary rosacea, as opposed to chronic.
Your thoughts please.
Oh, is clindamycin gel drying? I found metrogel drying somewhat.
Metrogel suddenly stopped working for me a while back.
I looked in the mirror today and thought...not bad, not bad. Not there yet, but getting there.
Boy do I wish I had pictures... looked like that first lady in the pics you linked.
Did I tell you I gave up Amoxicillin, about a month ago.

Ina

[jmjm530]

You raise an interesting point that I've also pondered. What I do know is that my face and neck was violet red for some time -- that even when that calmed down, the rosacea areas (nose, cheeks, chin) were still red, that I had papules on nose and cheeks that I've never in life had before, and that I was very sensitive to sun and heat. I also know that I have surface veins on nose and upper cheeks but those were prior to treatment.

My dx was complicated in that -- assuming I had rosacea -- it was "layered" as explained with seb derm, psoriais, contact dermatitis and who knows what. Three out of four derms said I had rosacea and the fourth hedged and wouldn't make a definitive rosacea diagnosis although he treated me for it. I saw the fourth derm  when things weren't so bad.

So who really knows. Maybe I had -- and still have -- what is termed "pre-rosacea" that was flared on treatment, or maybe it was simply a tx induced rosacea that one very bigshot hepatologist said he never heard of. (I read about tx induced rosacea fulgamis (sp?) but that is not what I had.

Bottom line is as long as it goes away I really don't care but if it comes back I guess I'll have to deal with it. I'm still going to look into laser or IPL for the veins although if they remained the way they are today I wouldn't bother. More of a preventative thing I guess. BTW further reading on IPL vs V-Beam is that IPL is better for larger areas of erythma (redness) and V-Beam may be better for zapping a prominent vein here or there as it is a more narrow beam.  So if you have both redness and prominent veins, they usually start with IPL and then if you have any money left over, they will clean up anything the IPL missed with V-Beam. I have still yet to be re-evaluated, but maybe I'll start with getting some veins zapped by V-Beam myself if I can save some money. IPL can get quite pricey as it requires more treatments. I'll see.

----------------
Clindamycin comes in liquid and gel and both I believe have some alcohol in it. It will irritate less if you wait 30 minutes after washing your face before putting it on. Metrogel also seemed to dry out my face 4-5 months ago when I first used it but since my face calmed down a month ago, it actually feels soothing. Again, it's possible a lot of my irritation was seb derm and contact dermatitis with the contact dermatitis probably treatment induced, maybe.

Don't know if I mentioned, but I've had some stomach bloating and  it's sensitive to touch. I'm fairly trim now so no one would notice except I know my body and when I'm at this weight, etc, my waist is a good 1 inch less. Definite bloating and my gastro is running some tests. However, today I looked up Clindamycin online and guess what one of the "rare" sides were -- prominent bloating and other gastro issues. My plan therefore is to go off topical Clindamycin entirely for a month and see if the bloating resolves. Pisses me off because I think the stuff is helpful but maybe I can get the derm to recommend another topical antibiotic.

What you want is a digital cameara. They are invaluable for things like this. If your skin breaks out, you simply take a picture of it. Then you can either instantly print it out if you have a color printer, view it on your computer, upload it to a web site for viewing, email it, or bring the file to your local camera store and they'll print it for you in about 30 minutes. Beats the h*ll out of trying to describe something you had to your derm while he shakes his head. I recommend the Canon Elf. Clean pictures and easy to use. I was able to take pictures of my face quite easily even without a tripod by steadying my hand on a wall or something -- or, of course, very easy if someone else takes the pictures. Nice thing about digital is that you can take lots of pictures and then erase the ones that don't come out well. The elf, like many digitals, has a Close Up setting and can be used with or without flash. Sometimes better to use without flash to show the redness but you have to experiment.

-- Jim

[jmjm530]

Just to clarify, the reason my doc started double-dosing me in week 2 (as opposed from week 1) is because I switched doctors after week 1 and therefore he wasn't my doctor then.

[Eisbein]

Na, I better tell you now, or you think I am off my rocker...like someone else here.
I told cuteus about the retraining of the brain. She had read about that as well. She goes to this site, and plays a game were you see mixed up letters, and find the word, all in a certain amount of time...that's how I understood it. Learning to write with your left hand,learning to play an instrument etc. Lays new neurons, or something like that. It's supposed to help with senility, prolong progression to full blown Alzheimer...She sees already improvement, but she also is over one year post tx, maybe getting better on her own, maybe from the word puzzle.
I told her to come here and elaborate.
Got to go, more tomorrow.

Ina

[FlGuy]

In case you're hanging around these parts, I have a question. When you went to tx doc #2, I think he suggested the double dose of peg and I think you were already in your second week of tx. Forgetting about the increase of riba.... If you posed this question to him what do you think he'd say.  'If there is an opportunity to double dose Pegasys 180 one time in the first four weeks, which one week would get the biggest bang for the buck?'  I'd understand if you be be uncomfortable in answering.  Thing is my tx doc is not a wordly guy when it comes to treatment - he's very conservative and it was with a lot of prodding that he acknowledged pre-dosing riba for a week.  Also if regular shot day will be Friday, which day in the week would that additinal peg be advised? (on Tues for example, or a double on Friday night) Thanks Jim.  Again, if this makes you a little squirrmy, I understand.

[jmjm530]

INA,

I have no problem with your "retraining" brain thing, in fact I mentioned activities like game playing or even writing help. Use it or lose it.

FL,

I can't read my doctors mind, but I imagine he's say the first week is the most important, just because it seems to fit with the "hit it fast and hard" theory.

Personally, if you planned on double-dosing, why not just double-dose from week 1 with weekly PCRs and stop double-dosing as soon as you become non-detectible?

If your doctor approves the protocol, maybe the Pegasys Assist program can supply the xtra Peg if you can't convince your insurance company. I believe there's a good reference study on this at the ClinicalCare Options web site that is mentioned in the "Doc Eye for the Hep Guy" module. You might want to bring this to the attention of both your doctor and PegAssist. BTW how's your skin doing?  -- we need some skin-related content down here . LOL.

Be well,

-- Jim

[Eisbein]

Be back, got a bunch of tests coming up tomorrow.
In the meantime check out pogo.com.
Cuteus told me yesterday.
Ina

[FlGuy]

Thanks for the comments.  I'm having some difficulty with Insurance just getting 48 weeks approved. It will happen, the ins. just wants more documents.   With the liverhead saying if not clear at 4, then go 72 I could have insurance risk later.  It is my intent to get to und by 4.  In fact, if I get to und at week 4 I'll have some out options at 40 or 42 - maybe which can absorb the double use early on in tx.  If I DD for four weeks, I'll have to wait 4 weeks to start to make sure the Specialty Pharmacy 'thinks' that I have used 4 weekly syringes in order not to mess up the order re-fill process which occurs at 4 week interval.   Almost too confusing to keep track of.  I don't think I'd qualify for the Pharm programs.

I have a couple of theories on skin issues.  I haven't had any but I was on PegIntron/800 riba for 24 weeks.  Like anemia problems and riba, I think there's more to skin issues than IFN alone and also believe that 'longer and stronger' tx is THE culprit.  That's the reason I copied all your skin info from J&F.  So, I might prove the theory sometime.  But I also think that living in Florida makes a difference.  Even in Winter we don't have a real dry environment and althogh sun seems to be a skin bogey at times, I think sun in the right proportions has theraputic value. I'm just glad I don't have that problem and feel bad for those who do.

Thanks Jim

[jmjm530]

I'd double-dose the first four weeks -- or up to 12 weeks if necessary with weekly PCRs-- and focus on getting non-detectible as soon as possible -- assuming you and your doc buy into the double-dosing theory and studies. Deal with the rest later.

-- Jim

[FlGuy]

Thanks again.
When did you DD? 2 Shots same day or like a Tuesday-Friday timing?

[jmjm530]

Pham programs are based on income only, not on assets. I also hear they are flexible. Worth the call. Is it possible for your doctor to get some samples from the Roache rep -- especially since your insurance is paying for the motherload? Another thought -- and I know you probably don't want to see more doctors -- is to seek out a doctor who buys into the double-dosing theory and is located at a larger, teaching hospital. They often have "stashes" of drugs for this very purpose. Schiff in Miami, Dieterich in NY and Afdahl in Boston come to mind. Of the three, I've read Dieterich double-doses Pegasys, not sure about the others.

[FlGuy]

Thanks some more.  I'll bark up the doc's tree although he has his office decorated in a motiff that you'd have to describe as 'Modern Schering'.  It's kind of funny, maybe ironic - my wife works in a urologist's and brings home sample of Levitra, Viagra and Cialis. Maybe she's due for a career change.

[jmjm530]

Someone posted a few days ago they had some leftover drugs from treatment. Maybe you can hunt the post and person down, or do another post. I believe NY Girl got some offers when she did.

[FlGuy]

Something will work out.  I have access now to the Univ of Miami, if it comes to that. Still need to convince tx doc that it's a good idea first.  I'll take a look at Clinical Options docs to see if I can arm myself with convincing information.  I'd rather not fly under the doc's radar on this, but even if it's only a week or two of dd, und at 4 is a big hurdle I feel I need to reach.  The pcrs are a small issue too.  I  have dated scripts of week 4 and week 6 and if I'm delayed much longer they will macth up with the dates week 2 and week 4.  The number of pcr's can be an insurnace co. issue..

[cuteus]

Hello, bottom dwellers.  Hi Ina, I see you got the name right for the site in question; pogo.com is a fun way of retraining sections of your brain with the word whomp and the jumble bees games.  those are the ones I re started, after months of absence, and I have noticed quicker word recollection and improved memory only recently, though.  I had noticed things getting worse about a couple of months ago, so I had to try something!  and you can win money  too! also, games like tetris can retrain other areas that might not be reached by the word puzzles.  here is the creator of the program: http://www.cbsnews.com/stories/2006/01/15/sunday/main1209916.shtml

and the software, (but if you read what it entails and have no money to spend you can do a home made program with the game site)

http://xrl.us/r732 (Link to www.brain-train.com)

I have been trying to use my left hand for many things also, which is another suggested exercise.  I am not aging gracefully and without a fight!

FLguy, I wish I still have my leftovers, just gave my last Procrit away. no traces of tx left in my medicine cabinet, except for Atarax, if you need some let me know.  Good luck
and Jm, I am happy to see you are physically discarding some tx baggage, finally.  Might feel like new at the yr mark!

[jmjm530]

Found the lady with xtra meds thread. Maybe she' still around.
http://www.medhelp.org/forums/Hepatitis/messages/43093.html

Cut, Certainly hope things continue to get better. Two years out of one's life is a long time, and when those two years are in your late 50's, they're like dog years if you understand what I mean.

[FlGuy]

Thanks both.  At it's worst, it's just a timing issue. At it's best, it's just a phone call.

But Jim, is the dd a Friday and a Tuesday proposition, if my regular shot day will be Friday?

[jmjm530]

You do both shots at the same time but preferably not the same location. If I did my first shot left-lower abdomen, I might do the second shot right upper abdomen. I really didn't notice much of a difference in side effects from two shots compared to one -- but then again, the riba kicked me so hard in the beginning that maybe I didn't notice :)

-- Jim