Advantage of a hepatologist over a gastroendocologist?

Hi everyone!

I will be starting treatment fairly soon and I have a few questions.  I have heard that the dosage for hepatitis c (the latest interferon, once a week is standard  and rivabirin, every day, only depends on my weight) .   If it is as simple as this, I suppose it would be the same if I am under a hepatologist, a nurse or a gastroendocologist, right?

Well  I am figting to be refered by an hepatologist to prescrive treatment and the follow up,  at 1.5 hours from home, but this of course will be inconvinient for me.  

If there are not many variants or factors to take into account when selecting the dosis (such as not only weigh, but age, gendre, years with the virus, viral load etc, etc....) and similarly not many decisions have to be made interperting the response of my body (either it responds or not, the dosage will not change) that might compromise the rate of success..............  should still be better to be under a hepatologist supervision while in therapy?

Amateur
Genotype1, Grade 5, Stage 3

[NYCMark]

More important than the specific title of your doctor is the experience he/she has in treating HepC patients. While the standard-of-care dosages are pretty well set out, the individual responses to the prescribed doses can vary tremendously. Side effects can vary a lot from individual to individual. Treatment can be complicated if you have, or develop, any other illnesses. Blood tests must be carefully monitored, and a doctor with more treating experience will have a better idea what to monitor and how often. Does he know how to prescribe drugs to help anemia? (although this may not be an option where you are)

I see you are in the UK, where treatment options may be somewhat limited to the practitioner available, but I would push to be treated by a specialist gastroenterologist who has experience treating Hepatitis C patients.

Good luck whichever way it goes!

Mark

[jmjm530]

I can just speak of here in the U.S.

Nothing is "simple" when it comes to treating Hep C, especially if your doctor is behind the treatment curve and you're trying to stay on top of it. The 1.5 hours you may have to travel will more than be compensated by dealing with a doctor who is inept by cutting edge treatment standards, which at least here, constitutes many gastros.

Of course this assumes that your liver specialist is a good one, so it pays to do your homework and to sit down and interview your doctor before you treat. I interviewed three hepatologists before I finally picked one. I'd like to say I asked all the right questions, but the truth was I didn't even know what the right questions were at that point. But one week into treatment, I started to have an idea, and that's when I switched liver specialists. Being here at this point, you have a headstart over many of us, including myself, and you will know what questions to ask.

All the best,

-- Jim

[Proactive]

Would you take your car to a muffler shop to have the engine rebuilt?

[GrandmaBRZ]

I am also in US.  My gastro would not treat me because I have cirrhosis and he said he did NOT have the expertise to treat me w/cirrhosis.  He then referred me to a Hepotologist and I am in an excellent treatment program.  I still check in with my gastro because I believe he is a very honest and eithical MD with no hidden ajenda.  

I agree with Jim about doing your homework and interviewing prospective MDs.  

As you move on in the process, you will have more and more of the "right" questions.

Best of luck to you,  take care.  jenn

[debnevada]

I started treatment with a decent GI who I didn't get along with, another GI who had a decent rep but told me i was "cured" with a VL of 192 and THEN, as luck would have it, found out that one of the country's best hepatologist had a satellite clinic in Las Vegas. So I treat with him.

I don't always agree with him, he will talk with me about my wishes and will talk about those wishes on multiple occasions.

Some questions I would have asked if i knew then what i know now:

1.  What is your opinion of rescue drugs and when would you use them?
2.  Do you prescribe medications/treatments for side effects?
3.  What is your opinion of personalized treatment, i.e., higher dosing, extensions and lengths of treatment?

Those are a few for a start.

Deb

[jmjm530]

I think Deb has presented three excellent questions to ask any doctor you may be thinking of treating with. A few other questions you might ask:

4. What dose of Peg and riba will you start me on? Will you consider upping the dose if my viral load is slow to respond?

5.  How often do you test both viral loal and CBCs (complete blood count)? What is the sensitivity of the viral load test you use?

6. How agressively will you use helper drugs to keep me on treatment as opposed to lowering my dose of either Peg or ribavirin.

7. What criteria do you use to prescribe Procrit (epo)? I it just an absolute hemoglobin number or do you also base it on the drop from pre-treatment baseline and how the patient feels? How often do you prescribe the helper drug Neupogen and what criteria (ANC value) do you use in determining whether or not to use it.

7. How often will I be seen by your office during treatment? How often will I be seen personally by you as opposed to the nurse? If I'm seeing the nurse, will I still be able to get in touch with you directly between visits if I have any questions to resolve? Is it possible to email you, or do you prefer the phone?

[jmjm530]

I would also suggest you do some of your own homework before seeing the doctor so you will know both the significance of the questions and the answers you doctor may give.

[Myown]

You also must consider that having a "big name" in the hep C world doesn't always amount to much if the NP is the one who does alot of the work. It's fine if the Hep doc and the NP works as a team and the Hep doc oversee's what the NP is doing, but when you're nearing the end of tx and the hep doc comes into the room and looks at your labs and scratches his head and says some things contrary to what you have been told by your NP - at that point you realize that he had given her full reign over your disease and his Knowledge that you 'thought' you were indirectly receiving - well guess what- you really weren't. There are alot of very bright doctors, but if they have an Alpha nurse working for them, you might run into a problem, because he will allow her to run the show and she is not an hepatologist. If you are going to have an NP as your 'doctor,' make sure that you find out if the doctor is going to be involved in your case. Don't just assume that he will, because he may not be - don't ask me how I know.

[jmjm530]

I agree 100% with 'MyOwn'. One of the reasons I left my first "big name" doctor at week  2 is because he left the NP 100% in charge (there were other reasons as well). When I saw my second "big name" doc, I made a point at our first meeting that while I would be willing to see a NP, I wanted the doc to be my primary "point" guy and also wanted a mechanism to be able to contact him directly between visits. I got both and probably only because I asked.

-- Jim

[willing]

the preceding comments all give good advice, but in IMHO, the single most important bit of preparation before jumping into the pool is to decide when you want to come out. At this point you're looking at, say,  60% probability of success, which will vary somewhat depending on other factors including your stage,age,weight, etc. Your VL draws at  weeks 4, 8 and 12 will give direct evidence about how effective ifn/riba are in controlling your particular viral infection and thus affect that probability significantly. Then the virus, though still present in abundance, will no longer be detectible and you'll enter a   LONG phase of hopeful, persistent, endurance. Psychologically, I think you'll  be better prepared if you  decide on your exit strategy *before* you start; for example, are you willing to soldier on if your odds drop to 30%?, to 2%?

In choosing a provider, the single most helpful consideration, is to bear in mind that you're dealing with a condition whose mechanisms remain largely unknown. This means that neither a world-class hepatologist nor an NP will be able to give you any meaningful insight into how/why tx is/is-not working in your particular case. The extent of what is known are the results of "black-box" population-based studies along the lines of "In N patients with  characteristics X, dosage/duration Y resulted in SVR rate Z". In short, it's a roll of the dice. In my repeated, unsuccessful, tries at tx I've alternated between a big-name hepatologist at a major liver-transplant center and my internists' nurse and found very little difference between the two. There's a good  reason so many Drs delegate case management of their HCV patients to their nurses, and in fact you may find a  good nurse to be much more helpful in treating the various minor complications than an overloaded Dr.

Overall, a couple of of points that may be helpful are:
- the decision about how far to stray off the beaten path in tx duration (eg past 48) is primarily yours. The "beaten path" gives you dice with know probabilities;  going into the "bushes" gives you your Dr's best guess - though if your Dr. has sent a lot of patients into that particular clump of bushes the guess *might* be reproducible. You'll be trading marginal increases in SVR odds against increased  wear&tear from tx.  After you think you know what you want, you should confirm with your Dr.  since many don't want to go off the path at all.
- anemia/neutrophil/platelet reductions are almost never a reason to change tx dosage/duration. If your Dr. feels otherwise, you should understand why. Also, unless you're at the far ends of the BMI distribution, weight-based dosing is not an issue. Basically, once you get on the ride, duration is the only control lever you've got.
- it's a good idea to have the large-caliber specialist available in the unlikely event something serious develops; one appointment before starting is good insurance
Good luck!!

[jmjm530]

Willing: Also, unless you're at the far ends of the BMI distribution, weight-based dosing is not an issue. Basically, once you get on the ride, duration is the only control lever you've got.
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I agree with much of what you said, but perhaps not the above, unless I read it wrong.

Agreed, that tx duration is one "control lever" but so is dosage, be it double-dosing Peg, shortening the injection intervals, and of course tweaking ribavirin dose -- either due to weight, hemoglobin response, or as they do in Sweden by HPLC testing. I believe it was

Dr. A. who said in a recent conference Q&A that if you give enough drugs (and probably for long enough)  just about anyone can SVR, but how many people really want to go through the extremes. His conjecture was that most of us want our life and our jobs when treating, although as well all know, many of us don't have either even at SOC.

So, as I see it, we have two main levers with SOC-- dose and treatment length.

Where a very good hepatologist comes in -- or in theory any good doc or NP (although I don't think you will find theory translating into practice --  is helping provide input and guidance to make more intelligent choices of how hard we push the levers by very frequent and sensitive viral load testing (I was tested weekly until UND and then recc monthly testing until EOT); helper and other drugs to foster compliance; and additional help in analyzing the study data (as inconclusive as it may be) to help determine treatment dose and length --something in theory we can figure out just as good ourselves, but in reality by the time most of us have figured it out, we're either well into treatment or perhaps on our second treatment.

Good to see you posting and hope this finds you well. Anything new insights into your own treatment approach or are you still watching and waiting for the next generation (beyond interferon and Pi's)?

All the best,

-- Jim

[PSP-n-Me]

I only see my Hep Doc when I have an appointment for the IR study I am in - the rest of the time I see my Hep NP - She's not just a RN she's a Physician Assistant...This gal is the best thing to happen to that Clinic - She is available 24/7 answers every single question I have backed up with case studies and confers with the Doc on everything she does...So - all your "big name docs" that are worth their salt, will have a NP to handle the tx of HCV with a very well qualified NP, that also has  quite a lot of experience and knowledge with the SOC...I would be very dissapointed in my Doctor is she neglected her research time to come into a visit room with me semi monthly and say how do you feel...Her time is better spent on the research of the virus and the liver...IMHO

[jmjm530]

In short, your "big name doc" is the one you want to devise and tweak your overall treatment strategy and therefore be available for major treatment decisions.

The NP is fine to help implement the strategies and more universal treatment decisions.

The problem, as "MyOwn" pointed out, is that often the NP gets quite proprietary in the way she runs your treatment and often is either reluctant (does't want to bother maybe) or simply doesn't feel it necessary to consult with the doctor, as he/she feels they know how to handle situation "X".

It's therefore up to you the patient, to speak up at whatever junction you do feel that you would like to get the big name doc's opinion (after all that's probably why you chose that particular office, I know it's why I did) -- or, as in my case, as I mentioned before, make it known before you start treating that you would like the doc to be actively involved at all phases.

-- Jim

[PSP-n-Me]

that has never been the case with my NP or my medical team, hmmmmmmmm maybe Canada is more organized...

[Myown]

As far as I am concerned the NP should be a reflection of the doctor. She should never feel she has to use her OWN ideas or knowledge. The ONLY ideas, knowledge or opinion SHE should have are her BOSSES - the hepatologist. IF you have schelped your way to a doctor hopping subways in order to tap into HIS wealth of experience and knowledge, you should get just that- HIS experience and knowledge. I haven't any problem seeing an NP, but when I come to find that she has been doing her own thing, that's when I have a problem. I didn't choose the office because of who SHE is. I could have fell over her on the street and not know who she was, but my doctor I would have recogonized. Who do I blame? HIM not her. And most of all I blame myself because I discerned the problem from day one - I can smell an Alpha female a mile away- ya know why? I'm one. But difference with me is I am smart enough to know  that I don't know it all - she doesn't know that about herself. The worst people to be around are people who don't know what they don't know. My ferritan was very high - not prior to tx. SHE never tested it during tx. Stupid me knows that iron can be a problem and I saw the iron levels were never out of range so I never even noticed ferritan wasn't listed. The doctor gave me my lab towards the end of tx and he checked the ferritan. I can go on an on, but I'm disgusted at this point with not putting my foot down - all because I am trying to tone down my personality. Well I am a big jerk because why in heck would I pick a time such as this when I have a chronic disease to try and not be a controlling person. So I'm not saying the ferritan was the reason I relapsed cause I don't know if thats the case, but my point is the NP I guess took it for granted that my ferritan was normal before tx and so she never tested it again. And to boot I wasn't getting my labs faxed and when I went to my next appointment she drew blood and handed me the labs from the prior visit that I had with the doctor and never mentioned the ferritan and I didn't look at the labs until I got home. Stupid me thought everything was okay with my labs cause she didn't go over anything with me and I was still UND at that time.

So now my friend who is just recently retired (hep doc) wants me to treat again right away, but somewhere else. He wants me to think about it and get back to him and he will arrange it.
At this point I don't know what I want to do. I wasn't going to tx again. And to boot, now I am getting paranoid.... I just read someone else was told they were they were a certain geno (I think 2b he said) and come to find out he is a different geno.

So of course now I am thinking that maybe there was a mistake and I really am a geno 1 instead of 2b. Its not as if that couldn't be the case and lets face it these labs make so many mistakes so it may be possible. But anyhow I feel fine right now so I almost feel like saying forget it all - I'll pass - keep the tx.

PSP-n-Me - As far as Canada being more organized - your health care system, that's a bit of a stretch. I would hate to have to wait until 6 months post to get a PCR and according to what I have read of some of the folks from Canada - that is the case. I remember a girl from Canada mentioning she was going to come to USA to get a test (PCR or bx can't remember.) So I would much rather be a part of the health care here even with its problems hmmmmmmmmm

[Proactive]

I also believe how a patient is handled, in part, is in response to how the patient handles themselves ...Is the patient knowledgeable, is the patient motivated, involved in their case, willing to question, etc...ya don't get answers if you don't ask questions....;^)

[jmjm530]

Was your ferritin high? A low ferritin shouldn't hurt your chances of SVR, in fact might help it. Not sure how it works with a high ferritin, as opposed to a high serum iron.

Other than going into treatment with a high iron load, I certainly can understand the problems you had with the NP/doctor situation, but I don't see how in the end it would have changed anything. You were put on weight-based riba, had frequent PCRs, were UND at week 4, and treated for 24 weeks . I can't see any other doctor doing anything better/different. You might point that out to your doctor friend.

Speaking of which, what treatment regimen does he/she have in mind? If you're sticking with the SOC drugs, next step I presume would be treating for 48 weeks. Not sure how much that makes sense given your zero liver damage. Why wouldn't your friend want you to wait for better/shorter treatment regimens?

-- Jim

[PSP-n-Me]

"As far as I am concerned the NP should be a reflection of the doctor. She should never feel she has to use her OWN ideas or knowledge. The ONLY ideas, knowledge or opinion SHE should have are her BOSSES - the hepatologist"

I totally agree and it should be that way with any Hep Doc and his staff - But, you DO NOT need to see the Hep Doc everytime you go there - this in my opinion is a total waste of precious time..But, I have begun to realize that I am pretty lucky to have the tean I have here in Toronto - I hear a lot of horror stories coming from the States...

[jmjm530]

We hear our own horror stories coming out of the Canadian system, such as extremely long waiting lists for liver biopsies, etc, which can significantly affect/delay making a treatment decision.  Not sure how accurate they are, but here we can get a biopsy within a couple of weeks if needed.

Whether we like it or not, fact  is that NPs often have their own "style" of treating, especially in those very large practices where it necessary for them to be almost surrogate doctors. Same btw with different doctors within the same group. Hey, I got significantly different opinions from different "big shot" docs when trying to get a consensus on treatment strategies.

Still, I paid my dime (er my insurance company's dime) for a particular big-name doc, and I made it a point to see/communicate with him on all important (in my mind) tx decisions. I was not the most popular patient in the office, but I probably got more of his time than most patients.

This is not to say my approach is best/desirable for all -- but what really pissses me off is when people post here that it's almost impossible to get in touch with their own doctors at some very critical treatment junctures, with the NPs running interference. At a minium, I'd get that clarified at my first meeting with the doc -- that I have reasonable but free access to him whenever I think it's important. Without that commitment, I'd probably just move on to another doctor.

-- Jim

[willing]

yeah, even without Michael Moore it's hard to feel too sanguine about prospects on this side of the border. I heard Terry Gross interviewing Alan Greenspan on NPR this morning. Without starting a political cat fight, I think it's fair to say the guy has  earned  respect from both ends of the spectrum. His take was that the  deficits induced by the war are insignificant next to the medicare costs ahead...makes you feel wonderful about getting old in this country.

[Myown]

https://www.mymedlab.com/cart/product.php?productid=16169
"This test is measures the amount of iron in the body. Iron is important for red blood cell production. A Ferritin level simply measures the amount of ferritin in the blood. Ferritin is a protein that stores iron in the body. The serum ferritin level -- the amount of ferritin in your blood -- is directly proportional to the amount of iron stored in your body.

Because of the direct proportion, the Ferritin is used to identify Hemochromatosis or “Iron Overload” in patients even before symptoms arise. This condition occurs when, usually by genetic factor, the body begins to store excessive amounts of iron in the body tissues.

Hemochromatosis, also called “Bronze Diabetes”, usually has a genetic component, so upon diagnosis of Hemochromatosis, other direct family members should also have their ferritin levels checked.

The process of iron storage in tissue is completely natural and is the body’s way of insuring enough raw materials are available to rebuild the blood supply in case of massive blood loss.

The usual treatment for the condition is a schedule of blood donations that force iron out of the tissue to replace the blood lost. The schedule is usually a monthly donation until Ferritan levels have returned to normal. Once normal, the frequency is reduced to maintain the low levels."

[Myown]

so my point being that who the heck knows if it was high all during tx. She never tested this. She did check the other iron values and they were fine - but she never tested this one. As far as my friend, I just went over things and we didn't get to the point of game plan. He wasn't calling from his house and only had enough time to listen to my rant and offer his help. He wants me to call him after I think things over.

[Myown]

But, you DO NOT need to see the Hep Doc everytime you go there - this in my opinion is a total waste of precious time..
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I agree and I never asked for that nor did I expect it.

[jmjm530]

I believe that high serum iron is a negative predictor for SVR. For this reason some people get their iron lowered by blood letting. Not sure how it works if your serum iron is normal but your Ferritin is high. Did you finally discuss this with your doctor? Did he think the high ferritin could have contributed to your relapse? I do agree that Ferritin and the other iron store value (too lazy to look it up) should be tested both prior and during treatment. FWIW I had to ask to have mine done otherwise it wouldn't have.

-- Jim

[PSP-n-Me]

It just irks me when erroneous statements are made to newcomers - regarding treatment versus not treatment, who and what Doctor is better than the other - don't go to a Doctor that has a NP handle the routine daily traffic of those on treatment...etc, etc.

Of course you will need to meet with the Doctor if necessary, and probably need a full hour or so consultation before you even make a decision about treating, that's a real no brainer - But it is not realistic for those people about to start treatment to go into their Doc's office and demand they see him/her every visit, because that is what others say on the Internet - that's a sure way to get z boot - or haphazard care due to being a "problematic patient"  

"Still, I paid my dime (er my insurance company's dime) for a particular big-name doc, and I made it a point to see/communicate with him on all important (in my mind) tx decisions. I was not the most popular patient in the office, but I probably got more of his time than most patients."

I wonder - was it more time you got or maybe being placated....Here in Canada your Physician can drop you as a patient by using the "patient Doctor differnces clause" If you went into a Doc's office here and started demanding you would find yourself out on the street - And finding Doc's here is very hard due to the Doctor shortage - Canada looses a lot of Docs to the States becasue they can earn as much as they want there - They cap their income here - So IMHO those that stay are very devoted to Medicine..

The wait times are longer here in Canada, that is very true - but if you have high enzynes your bx is bumped up accordingly on the list...

I have used both health care systems, being an American living in Canada - and I have to say they both have their share of problems, but it seems since I left the States, to live here in Ontario, the Health Care System went downhill fast...So, is the system failing the people or the people failing the system due to their whiny demands....Just my 50 cents worth

*dip*

[Myown]

Not sure how it works if your serum iron is normal but your Ferritin is high. Did you finally discuss this with your doctor?
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The info I posted above leads me to believe that the high ferritan would cause a problem. It does say in the above that they lower it by blood letting. I figure it like this,,,if it wasn't important, he wouldn't have tested it. I also look at it this way, ,,the virus is in the tissue and because the ferritin reflects how much iron not only in the blood but the body, then IMO that can be a problem as far as svr. As far as I am concerned even if I held onto SVR for 6 months or a year, because of the Occult virus living in the tissue and my problem with storing too much iron, the occult would have an easy time replicating and I would become detected somewhere down the line maybe even after a year. Maybe this is why some people after a year of SVR all of a sudden become detected. Might be one of the reasons - who knows.

I don't think the doctor nor NP even noticed the high iron and as I mentioned I didn't notice until I brought  the labs home. No point in me trying to get a hold of someone over there. I will only get aggravated not being able to contact them and at this point it doesn't matter, I relapsed and thats that. I can wait until after I have the cryo test to talk to the doctor. If the NP didn't care enough to pick up the phone or even email to tell me she feels bad hearing the news I relapsed, do you think she would concern herself about iron? I doubt it. check your Inbox in a few minutes.

[jmjm530]

I understand your reluctance to discuss with the doctor now, however I probably would, eventually, if for no other reason than to get one more perspective on both the issue and for future treatments, with this doctor or another. Also, I understand how you feel about your team but try not to let that get in the way of whatever info they can provide you. If I stopped talking to every doctor who has a f*cked up way of practicing medicine, I'd only be talking to my endodontist.

As to the "occult" virus breaking through after a year because of the iron stores -- it just doesn't work like that. In fact, it rarely comes back after being UND a year. Yes, lots here posted about occult virus, but without getting into a debate, no one really knows what it means in clinical terms, and again, just too many studies on the durability of SVR. You've had a tough year and certainly learned a lot but my advice is don't try to extrapolate this knowledge into areas that no one really has a clue about -- occult virus for example.

If one or two hepatologists tell you that your ferritin has to be reduced for a better tx outcome, then that is something to hold on to for next time around. Frankly, I'd want to learn more about it now. Is there anything in your diet, supplements, etc, that could cause high iron stores? What about your cookware? Iron cookware can leech iron.

BTW I don't have an "inbox" here, at least I dont' think I do. No profile.

-- Jim

[willing]

not sure whether this qualifies as hepatitis-specific material, but, given your background, it would be very interesting to hear a comparison of the two systems from the perspective of an HCV patient : how long are the bx/us waits, availability of SOC, availability of off-label drugs. etc.

[Myown]

I don't have a profile either, but someone sent me mail thats how I found out someone can email me. Look up in the right hand corner of the page and you will see 'inbox.' Click on it and you will see that THIS IS YOUR LUCKY DAY,,bells will go off and confetti will drop from your ceilng. And all you have to do is hit reply or whatever it says. Then if you want to write to someone else on forum that doesn't have a profile just hit "inbox" and then "compose." Cool man, huh?

I almost forgot,,,one of my 'other' iron levels was a little low. The hep doc said that I could take an iron supplement to help it. Glad I didn't. As far as supplements I had given them the list of what I was taking prior to tx and no one said I couldn't take them. But if I tx again I will not take anything except a very light vitamin like CENTRUM. lol

I still get swelling in my legs - not like someone that has cirrohsis or something, its not noticeable to others but it's there. If you know Ben Cecils email can you please give it to me when you get a chance. He is the only doctor who mentioned this type of thing happening to some hep patients and how doctors weren't paying attention to it.

But anyhow check your mail. It is interesting but I didn't want to broadcast it to everyone. Mums the word.

[PSP-n-Me]

from my own experience:

from diagnosed with HCV to first shot of Interferon approx 1 year...That includes all the necessary tests and consultations (bx - genotyped and VL count - colonoscopy - cardiac workup - eye evaluation with Opthamologist - meeting with a few gastros before finding one I liked, Insulen Resistance study evaluation for the study,  etc etc )

as I am sure you must know, meds in Canada are less expensive than the States and the availability is immediate - Most people here carry a drug plan so I only pay 10% - which is $188.00 out of my pocket per 4 weeks supply of Peg....I am also on Eprex, $475.00 per shot and available immediately...All labs, Docotor visits, x-rays, medical testing is paid for by OHIP - Ontario Health Insurance Plan that is free to every Canadian citizen (or landed immigrant such as me) I like this idea, it makes Health Care balanced - No one gets preferential treatment, we are all the same in the eyes of the Health Care System...So the only thing I pay for is the 10% copay on my meds...Nothing else (well we pay it in taxes but that is a story for another day)

Not sure what you mean about off label drugs?

Once a HCV patient is accepted by the Physcian (they must clear all the tests before they are treated) they have semi monthly Clininc or Doctor's visits...(unless of course the need to be seen sooner) The only thing I do not like about the system is this - If I need any meds that are not directly related to SOC (hormone dose adjustments, anti depressants, sleeping aids, etc etc) then I have to go see my Family Doc, not sure if that is the case back home or not...But, that said, the Hep Team will advise a liver freindly drug and the Family Doc will be advised....The Liver team prescribes all blood boosters...

Now - I am not saying that this is a fine tuned approach to treating hepatits C - but I am happy with the care I get and feel very confident in my Team's Experience and abilities to make sound judgements (Yes, the NP is included in that trust)

I hope someone comes along with a comparison from a US perspective - I would be very interested to see that...And it may be beneficial for newcomers so they can see how the progression goes...I feel this is appropriate subject matter for a Hep Forum..

Hope I answered your questions, any others just holler

Beth  

[FlGuy]

I think the real difference between them is that a hepatologist charges more.

[jmjm530]

My biopsy was scheduled within a few weeks of my diagnosis.

Close to 40 years later -- and 3 more biopsies -- I decided to treat.

I was able to treat within a couple of weeks after making the decision. No waiting.

Pegasys injections were 100% covered by my insurance and I paid 10 or 15 dollars a month for the Copegus (riba). Procrit (epo) was also 100% covered and was prescribed by my treatment doctor.

All other meds had a 10 or 15 dollar co-pay until my deductible ran out, and then they were free.

I was able to see pretty much whatever doctor(s) I wanted as long as in my plan for a cost of around $115 per visit. Outside my plan, I paid around 10-20% of the cost, after my deductible for the year was met. The hepatologist I started with was in my plan. The hepatologist I switched to was in my plan. I could switch or see as many doctors as I wanted for 2nd , 3rd or 4th opinions. My shrink was outside my plan and I paid 10% of his fee.

I treated for 54 weeks but could have treated for 72 weeks and my insurance would have covered it.

From what I've read about the Canadian system, I much prefer ours. Shorter waits, more freedom to choose your doctor(s), more drugs available and covered, and more cutting edge (outside of SOC) treatments offered.

One caveat, my insurance plan costs close to $1000 a month but I certainly got my money's worth while on treatment.

-- Jim

[jmjm530]

That should have been "$15 per visit", not $115.

[jmjm530]

And has someone else has inferred, you get what you pay for.

[willing]

thanks Beth - that was a very good summary. My question about off-label drugs only referred to any restrictions on  physicians' discretion  in prescribing drugs for conditions beyond what the drugs were initially approved for (eg Neupogen  for ifn-induced neutropenia; or tx beyond  the SOC-approved term).  From the US  side,  I can't  speak to any difficulties through personal experience. Insurance has always covered all my visits and meds , with or without a $10-15 copay, depending on whether I had double coverage at the time. Appointments, including bx are seldom scheduled more than a couple of weeks away. The only exception is the hepatologist I see at a teaching hospital who has limited patient contact.

My main reservations with the system here are hypothetical ones (what would happen if I lost insurance?) or based on restrictions/denials others have reported  from their ins. co. ( in the eye of medical providers here, it is certainly *not* true that "No one gets preferential treatment, we are all the same in the eyes of the Health Care System.")

[Myown]

My tx cost me $75 for 24 weeks. No helper drugs, but they were cheap but I can't remember what it was off hand. It would have cost me alot more if I didn't stumble on being able to receive my drugs thru the mail. No one tells you this and not ever having to use meds before I had no idea that going to the pharmacy would have been so much more money. With my insurance I only had a $15 co pay and can have as many consults as I wanted and switch doctors whenever I wanted. If it was a doctor outside of my plan it would have cost more, but I had 5 consults - 2 of which were Rock Star type and they were all in my health plan.

[PSP-n-Me]

"From what I've read about the Canadian system, I much prefer ours. Shorter waits, more freedom to choose your doctor(s), more drugs available and covered, and more cutting edge (outside of SOC) treatments offered. "

the only truth in this statement is shorter waiting times in the US - I chose my own Doctor here in Canada and it is "cutting edge" technology here - My Doctor is one of the world leaders in research of HCV and Liver disease...But you already know that ....

Canada has EXACTLY the same drugs as the US - But the pharmas give them a different name so they can identify which market is it in for sales pursposes...Thought you may have kown that too...

Bottom line - You cannot make comments about the Health Care System in other areas unless you have experienced both - again, there goes the erroneous statements...

No more discussion need be pointed in my direction I am off to see my Liver Doc..

[Myown]

Jim, also since "the amount of ferritin in your blood -- is directly proportional to the amount of iron stored in your body," then that IMO "body" includes my LIVER and if I have iron overload in my liver of course I am not going to hold onto my SVR.

I think the problem is that doctors/NP keep an eye on your ferritin if they see you are futher along with damage than what I am. Maybe iron overload is seen mostly with people who have alot of damage and not someone like myself with 0 damage OR maybe the reason they don't see it with people that have 0 damage is because they rarely check people in that category. But it does say in the article that iron overload can be a genetic factor and that then would have nothing to do with stage/grade. I am definitely thinking this could have played a contributing factor or maybe the only factor in my relapse. It seems the longer a person is around this disease, the more you realize that these doctors know very little about it. When I asked doctors if they thought I would SVR, they ALL thought my chance was excellent. What they really should have done was reached into their pocket and bend down to the floor and roll some dice up against the door. All hep doctors should carry dice in their pocket at all times - at least we would be getting an honest answer then.

[jmjm530]

No need for argument but my statement were just based on what I've read here, as stated. Very possible I've gotten the wrong impression of the Candian system here, and if so stand corrected. I do hope everyone gets the best care possible.

As to experiencing both systems, we had a poster here previously who had, and I refer you to just one thread,  for example. There were other similar threads by this and other posters.

"yes it is a very long time, I tested positive for Hep C in May and still don't know what my VL is, it's totally unacceptable but here in Ontario we are at the mercy of the Doctors, if you complain they can drop you as a patient and there is a serious shortage of doctors here so if they drop me I would be in even worse shape..I call the office once a week, this week "Heather" the receptionist told me she was just  to busy to look and see if the results came back, said call back tomorrow when I am not so busy...I just about went crazy...God I wish I were home in the States for my medical treatment but don't have insurance there anymore...I moved to Canada 6 years ago...

http://www.medhelp.org/forums/hepatitis/messages/39032.html
------------
I'm not trying to knock the Canadian system, nor do I pretend to have any experience in the system, nor be an expert. Just relating so of what I've read here, and certainly willing to be corrected. But knowing my personality -- other points aside -- I do know that the long waiting seemingly involved would drive me nuts.

All the best,

-- Jim

[jmjm530]

I don't disagree that iron loveload could have caused your relapse. Just not knowledgeable on the specifics, i.e. the relationship in this context between serum iron and iron stores, i.e. Ferritin.

But assuming that someone can have iron overload with normal serum iron and high ferritin, then yes, an iron stores test should be performed prior to anyone treating.
-------------
A different and seperate issue is relapse after SVR. That has been shown to be very durable and after one year UND, relapse is a rarity. So in that case (UND one year post) I would not think iron overload would play any part.

At this point, you are a lot more motivated than I to pursue and research this more. I assume it will be the first question you should ask either your current or future liver specialists.

-- Jim

[jmjm530]

PS

Outside of your friend, you might want to get another disinterested opinion (outside of your tx team) on the whole relapse matter, including the iron question. I know you may not be in the mood for the trip, but I think a trip up to Boston to Dr. A.   at some point would be time/money well spent. And if you have out of network insurance coverage, or don't mind investing a little, a one time consultation with Dr. J. in NYC is another thought. Personally, I'd think about seeing both. I care about you and just want you to get the very best advice on what happend the first time and what is the best way to proceed from here on out.

All the best,

-- Jim

[Myown]

Your post to PsP was very nice and polite and all that, but lets face it, it would be scary as heck having hep C and living in Canada or England or anywhere else where everything is "paid for." Yeah we have our problems here and one of them is how wrong it is that the middle class suffers the most when it comes to health care. If you are poor or wealthy our system works the best, Oh almost forgot to add 'if you are an illegal alien" it also works VERY WELL for you, yet on this forum we have those that have lost there jobs and health coverage and just becasue they own a home they are not entitled to tempory health benefits until their situation changes. If you notice I didn't mention any particular ethnic group - I am refering to ALL AND ANY ILLEGAL aliens. Several folks on forum mentioned having to sell their home, some their vehicles and YET at the same time we are giving health care to illegals. That is so wrong. Then to boot we send money to help everyone outside of the USA when our own city streets have people sleeping in card board boxes. At this point the Republicans and Democrats are the same.  Jim, its nice to be nice, but when you know the score and I know you do - SPEAK UP please ,don't whisper or dance around the truth. I'm not mad or anything, I know its hard to convey on the internet, but I do get disgusted because of some people and their neutral stance when I know very few in the good ole US of A have a neutral stance at this point.But with that said, I doubt I will get any "Amens,"from the forum members cause everyone is so "tolerant" these days.

[jmjm530]

I don't think I was being "neutral" as I stated I prefer the U.S. system over Canada's, at least for me, as I am able to pay for insurance. But I also felt it important to state that my knowledge of the Canadian health care system comes primarily from here, as it frankly isn't something I've had much of an interest in studying. I put great value on my freedom here to pick and change doctors and get timely appointments without red tape. As stated, any system that significantly interfered with that would drive me nuts.
-------------
Back to the iron thing -- in addition to the HCV angle, you should have your high ferritin checked out in terms of other conditions. Just google "high ferritin normal serum iron" or similar for some starters. The reason I want you to see these doctors is because I think the whole iron/HCV thing is a bit complicated and certainly over my head, and perhaps yours as well. The more input the better.

-- Jim

[Myown]

I do think the iron had something to do with it and I will check it out more. I also think that because my hormones are a little wacky evident by my 'not so pleasing' personality - this too can be a factor in the meds doing their job. I don't know if I will tx though because if I can't find out why I have all these tingels and numbness tx might make it worse. plus now I am getting red dry patches which may be autoimmune if not from tx. I had it on my chest already, but that is gone. Now my eyelid has it and yesterday it was under my eye and today its dry but gone.

I'm lazy about this doctor thing. I'm not used to this and I hate all this doctor stuff especially becasue I can live with numbness if I have to. I don't want to make it worse by tx again and at this point I don't trust any doctors - none of them watch you the way they should and watching everything myself causes too much stress as it does for us all. I am 53 and if I can live until my 70's without any real hep related problems I'll be happy. Thats 20 more summers give or take  --ooooh and time does fly, doesn't it?

[jmjm530]

The skin thing could be sebboreah dermatitis and/or rosacea. Probably the former but important to have it checked by a good derm in case you have ocular rosacea (eyelids) I had tons of skin problems on tx but also new skin problems coming off the drugs, similar to what you describe. I hear you about hating the doc stuff, and maybe you do need a doc vacation. But at some point maybe you'll pick up. Several things were mentioned in a very quick google serach on "high ferritin" including type 2 diabetes and other stuff. Probably worthwhile to check out at some point. If we definively knew why a person will/did relapse, then treatment would be 100 per cent effective, but of course it's not. Still a lot of unknowns in this.

-- Jim

[Mr Liver]

Forget gastro and hepatologist when it comes to naive treating. They should be similar in their level of care in a hcv tx setting. If your purpose is to treat only, then shop for the nurse (PA or NP).  That's who you will communicate with 95% of the time. They are your lifeline to your doc in most cases. They can write scripts, address most laboratory findings and their likely implications, and most importantly, they are a hundred times easier to reach than most doctors. There are many PAs out there whose hcv tx knowledge exceeds that of the doctor. So, shop the nurse, not the doc, if its just for tx. You'll be glad you did.

Regards,
Mr Liver

[Myown]

"Ferritin is increased in liver disease, iron overload from hemochromatosis, certain types of anemia, acute leukemia, Hodgkin's disease, breast cancer, thalassemia, infections, inflammatory diseases, and hemosiderosis. Ferritin levels may be normal or slightly above normal in patients with kidney disease"
                                      

"The ferritin test measures the level of a protein in the blood that stores iron for later use by the body.

Medications that can cause increased ferritin levels include dietary iron supplements. In addition, some diseases that do not directly affect the body's iron storage can cause artificially high ferritin levels. These disorders include infections, late-stage cancers, lymphomas, and severe inflammations. Alcoholics often have high ferritin levels."
                                            http://www.healthatoz.com/healthatoz/Atoz/common/standard/transform.jsp?requestURI=/healthatoz/Atoz/ency/iron_tests.jsp
----------------------------------------------------------------------------------------------------------------------------------------
I don't drink alcohol so that is ruled out and of course any of the other diseases - who knows? Well except for liver disease I haven't been checked for the others. Hep c as we know can cause lymphomas and I have pointed out to several doctors that my one gland on the side of my neck is def bigger than normal by a tad - tho they all did agree with me that it is a little bit bigger  than the other side, everyone still just blows me off so at this point I never continued to check it out. How can I when no one takes me seriously and only agrees but then the next breath says 'they don't think its anything."  Who knows even breast cancer can be the problem. My mother was recently dx and to tell you the truth Jim, I am not even going to open that can of worms for myself. I am not in the mood to fight 2 battles at once so I'll let things ride in that case.

Oh almost forgot - I'm now wondering if my iron ferritin became high because my NP maybe should have had me on helper drugs. The reason I say this is because she let it get down lower than what the doctor had told me he would let it get and because of not receiving my labs I didn't know how low it got that one month - 9.6. I'm too lazy to look at the excerpt above but it seems that the ferritin storage is there as a back up or something like that and if my body was anemic for too long without receiving helper drugs, maybe this is why or how the ferritin builds up. I don't know what I am talking about and I haven't looked into it enough at this point but sometimes I do hit things on the head for some reason. I'm just disgusted the more I think about how this all was handled. The geno 2's are not watched as good as they should be especially if you have 0 damage , appear healthy, don't suffer from fatigue, skinny white girl etc. Yes I know that there is always the possiblilty of falling into the 10 percent, but my gut feeling is this relapse was not due to me falling into the 10%.

see ya.

[Cindy10]

Not sure about this, however my iron levels were low when I started tx, I was already anemic.
Which might explain why the anemia didn't really bother me I had it all along.

[jmjm530]

I hear you about dealing with too many medical issues at once. I had the same feeling when I was treating and put lots of other health (and other) stuff on the back burner, that I am now dealing with. No, helper drugs like Procrit, would if anything reduce your iron stores (Ferritin) not increase it. Hopefully, you'll get all these issues sorted out, with good professional advice, when you're up to it.

-- Jim

[Myown]

No, helper drugs like Procrit, would if anything reduce your iron stores (Ferritin) not increase it.
-----------------------------------------------------------------------------------------------------------------
Jim, THAT is my point. I feel my body was trying to protect itself and it had to on its own start making iron and the 'ferritin' type is the type that stores in the tissues and I would bet it stores in the liver also. so by not giving me Procrit, my body was building up IRON IN THE LIVER. see what I mean. I have no idea if this can really happen and I haven't looked into it enough but all I know is that my ferritin was normal and now its high. I will get the numbers later. Thanks for your input Jim I appreciate it.

[Myown]

Do you know your ferritin level? The anemia I got from tx I hardly felt at all as I have mentioned, but I am now curious as to whether the excess ferritin was caused by not having helper drugs. I only had the ferritin tested when I had the consult with the doctor that wants everyone on Ads. She did alot of tests,and is the only one who tested ferritin prior to tx. I didn't want to go to her anymore cause everyone has to see a shrink first and she wants people on Ad's prior to tx. Maybe I should have tx with her and just pretended to take the Ad's. I would have to try to act melow and talk alot slower than I usually do so she would probably realize the Ad's were being flushed down the toilet because I can't become mellow (I've tried) and I can't slow down the speed I talk. Btw I just ran into that doc on the elevator at the hospital where she works. She asked me how I made out and I told her. She just shook her head and didn't say anything, but I know she felt bad.

[jmjm530]

No one will give Procrit to reduce iron stores. That's not what it's about. Procrit is to help with the anemia and has its own risk/reward profile. If iron stores were a problem -- and I say *were* because this is ground I'm not very researched on -- then they probably should have done some blood letting pre-treatment. Again, something to discuss with someone more knowledgeable than I.

You mention that you did have your Ferritin tested pre-treatment with another doctor? I assume you have the results or can get them. Of course I'm curious what the two values were -- pre-treatment and now -- but like I said, I really don't know that much about how it all fits into treatment as my Ferritin was always normal. BTW I had to ask for the test from my medical team, it wasn't volunteered.

I know this is a difficult time for you right now, as the realization of all this sh*t sinks in. Knowing your inner strength and support system, hopefully much better days will be upon you sooner than you think.

-- Jim

[Myown]

No one will give Procrit to reduce iron stores. That's not what it's about.
---------------------------------------------------------------------------------------------
It's probably my fault, but you keep missing my point. I am not saying that someone should give procrit to reduce iron stores. She didn't even know my ferritin was high and prior to tx, it WAS NORMAL. she had my labs from the other doctors and must have seen my ferritn was normal.

What I am trying to convey to you (and I guess I'm not doing a good job) is that BECAUSE I had BECOME anemic on tx and WASN'T GIVEN HELPER DRUGS (caps for emphasis not yelling)maybe my body was storing iron in my tissue and LIVER and now that I am NOT on interferon the FEW little virons that are usually left behind -as shown in studies of those who are svr and had bx (I think I read that on forum),,,these few virons began replicating because I had the enviorment they love - IRON IRON AND MORE IRON.

I was Und 4 weeks post and then at 8 weeks I had 87,000. Usually when people relapse after even 4 weeks it comes back with a vengence it seems, but maybe not all cases. But I started tx at 8 million VL. and for a relapse I thought it would have come back as high by the 8th week post. I guess by now it might be back up there, but probably I will never find out until I go back to the doctors. - God forbid they do something right like call me or email me or fax me the results. Lab Corp wouldn't fax me but said they will mail me my results but I won't hold my breath waiting. I will post my ferritin prior to tx and what it is now in a few...

[Cindy10]

I don't what the level was, I have been anemic on and off for years and my doc had me on major iron doses prior to tx and my level was still low (attributed to my periods).

I feel real bad Myown that you are going through this, I would not wish it on anyone.

[Myown]

"The process of iron storage in tissue is completely natural and is the body’s way of insuring enough raw materials are available to rebuild the blood supply in case of massive blood loss."

That is an excerpt from the info I posted above. IMO whatever level that showed a little low - remember I said that all the other iron levels were normal and then I remembered one was low and the hep doc said I could take an iron supplement - thank God I didn't....but at that time he didn't know about my ferrritin cause that was the appointment that he was testing it - he probably still doesn't know its high cause I had that lab at week 20 and no one mentioned it being high - I just happened to notice.

So again my point is the one iron value was low IMO becasue my body was robbing Peter to pay Paul and unfortunately Paul stores his goods in my liver. Did I make myself a little clearer? I don't know how else to say it. And you know what Jim, I will bring my little theory to them and it might not be mine - this might be what is known already and IF it is known - (not talking about iron being bad as far as replication - I know they all know that - I'm talking about if the body isn't given procrit when it is needed it will do the above that I mentioned. I might be so far off base, but I will talk to some doctors about it. I wouldn't expect my doc to say his NP messed up big time if that is the case, but at least he will pull back a bit on giving her as much liberty with patients as she has had. I'll give you the numbers as soon as I can.

[jmjm530]

MO: BECAUSE I had BECOME anemic on tx and WASN'T GIVEN HELPER DRUGS (caps for emphasis not yelling)maybe my body was storing iron in my tissue and LIVER and now that I am NOT on interferon the FEW little virons that are usually left behind -as shown in studies of those who are svr and had bx (I think I read that on forum),,,these few virons began replicating because I had the enviorment they love - IRON IRON AND MORE IRON.
-----------------
Sorry, I'll try and make my response more relevant this time.

My understanding is that Procrit would REDUCE your iron stores on treatment, not increase it. That is usually why iron store tests are given on treatment. If you don't have enough iron stores, then the Procrit won't work well. For this reason, some people therefore are given iron supplementation on tx to INCREASE iron stores.

I really can't comment on your theory about your body storing iron in your tissue, because  I don't have the background, but again, I would def pursue this with medical doctors in the know and find out among other things why you would start treatment with normal Ferritin and end up with high Ferritin. Plus the significance of it and how it might have affected SVR. I think I really would want to know, or maybe I'd just be fed up like you are now.

As to your follow-up PCR, I don't have to tell you that sitting around waiting for the phone to ring is wishful thinking. You really can't deal with these offices as if their friends and expect things to be done in any sort of proper way. If you want those results, then call the office and don't get off the phone until you speak to a doctor, nurse, or have someone promise to fax you the results today.

Don't know how this particular office's phone system works, but for important matters I  always hit, "push 'x" for doctor or emergency" instead of the patient choices. If you're not up to it, have your husband do it, but get those results and a couple of more degrees of closure.

-- Jim

[jmjm530]

In reading your post again, I see you're focusing more on what happened to your iron stores after treatment, not during. Still, I don't see how administering Procrit on treatment would have benefited your iron stores (reduce them) after treatment. Still, try your theory on a doctor more knowlegeable.

[jmjm530]

Now I'm confusing myself. LOL. Yes, in theory administering Procrit during treatment could reduce iron stores both on treatment and for a period of time after treatment -- although I'm told that in most cases this reduction would take many, many months.

So for discussions sake, let's say they did an iron stores test DURING treatment and it came up high. Should they administer Procrit in light of your hgb and high iron stores? I beg off the discussion here because I really don't know anymore :)

-- Jim

[Myown]

before tx my ferritin was    73       (10 -291)

week 20 on tx                  521     (10 - 291)


They can stand on a stack of bibles and swear to me that the ferritin had nothing to do with it and I will not believe them at this point. I am starting to really convince myself that the ferritin is what caused my  relapse. They will really have to try hard to convince me other wise. And they can't use the excuse I was taking vitamins becasue I don't take vitamins with iron and plus as I said they had my list of vitamins and never told me not to take them - but then again maybe they didn't read the list. Wouldn't surprise me at this point. Plus if the vitamins caused high ferritin, why wasn't it high prior to tx. I took vitamins then too and as a matter of fact alot more than while on tx. gotta go now - see ya later

[GoofyDad]

I had way high ferritin on TX 1,100 -1,200 IIRC. I was kinda freaked - the nurse checked with the Grand Poobah liverhead and he said 'meaningless number'. They did go back to my bx sample though and completed an iron stain (original bx slides were prepared at a diff hospital and no iron stain available). No issue found in bx tissue. Ferratin dropped to normal after tx.

I think it's the anihilation of RBCs that cut loose all the iron in the blood stream. If you get severely anemic, as I did, you stand a chance at high iron counts.  Didn't affect myt SVR - nor give my high profile docs any concern for health or SVR.,

[sfbaygirl]

I remember before tx'ing I had an issue with the iron too. Mine seemed to normalize, and I treated, but they were discussing bloodletting- pre tx.  Never had it checked again during tx....hmmmmm.

[jmjm530]

I should add that Goofy treated with one of the "big shot" docs in CA. My guess is that your doc would say something similar, but who really knows.

[Myown]

One more time,,,, forget about the idea of giving me procrit to reduce my iron stores. I'm confusing you....What I am saying is that MAYBE I DID NEED to be on procrit and in doing so my IRON STORES wouldn't have Risen.

We didn't know the ferritin was getting high and IF I WAS GIVEN PROCRIT maybe they wouldn't have BECOME HIGH. Doctors should KNOW if I am correct in my theory as far as if someone who needs procrit and doesn't receive it,,,,will "NOT" RECEIVING PROCRIT WHEN NEEDED CAUSE THEIR FERRITIN TO RISE?  IF SO, they messed up my tx. HE may have tested it becasue he saw how low my hemo was. He was concerned about me only having 4 more shots left to do and nothing clicked in my brain at the time, I said 24 weeks I was told.... MAYBE ?? he knew there was a possiblity a problem by looking at my labs and that I was anemic for so long without helper drugs? I felt fine and didn't look anemic and maybe thats why the NP didn't write a script, but if she was going to walk the edge with my tx, she should have been taking more labs including ferritin or maybe she wasn't aware how important that would be as far as viral replication - she may have just figured the other iron levels wer fine etc. Afterall she isn't a hepatologist - she only thinks she is and I was real stupid to stick with her just cause I thought she  was nice and that the doc was looking over her shoulder - which obviously he wasn't.

Now I do have to go, see ya later.

[Myown]

but you had helper drugs right? The other iron levels don't reflect what is in the body from what I am reading but the ferritin does - so IMO it makes no sense to me for doctors to tell people that if there ferritin is high prior to tx they need to have blood letting because it will effect svr and YET if ferritin goes thru the roof ON tx it wouldn't matter or effect tx. Maybe for "some" it won't effect their outcome, but it makes no sense to say it absolutley is meaningless. My other iron numbers were NOT high - just the one that reflects whats in the liver. I would think that Iron Bind and serum and all of that would be effected by RBC's cutting loose too. It doesn't make sense to me.

I don't think doctors have much common sense to tell you the truth so actually it DOES make sense that THEY would say something like that.

But anyhow Goofy I am glad that everything worked out well for you.
Take care.

[jmjm530]

I do understand your question/theory...that maybe you needed to be on Procrit, and your doctors not putting you on Procrit may have caused your iron stores to rise. Again, I don't feel qualified to give a definitive answer, but even if that was the case -- and I'm certainly not sure it was -- I don't see how that would necessarily relate to relapse. Apparently Goofy's doctor seems to think the same. That doesn't mean we're right and you're wrong. So much no one knows.

Jim

[Amateur]

THANK YOU!!!

This is a lot of very valuable information!!  Sorry I toke so long to answer, but I am still doing some research on various concepts I din't fully understand, on tests and 'recovery' drugs.....  

On the practical side, I don't think with the NHS you can move around as you pleased, changing doctors if you didn't think much of the previous one.  I did ask my GP for a hepatologist (as he surely sees more cases than the gastro) but I am not sure whether I will be accepted.  I suppose it depends on area budgets, and amount of patients designed there.  I was told by the nurse that the treatment is not available privately (??!!) in the UK... in any case, it is not covered by my medical insurance and it costs £10,000 plus appointments, side effect drugs and whatever more......

So basically, whoever I got at the end, I have to do as much as I can to make sure that:

1-. The specialist, nurse and I work together with my pre/during/post tests, analysis and dosage.  Important to make sure that the specialist checks the results and any change of direction is proposed/recommended/prescribed by him even if I don't see him as often as the nurse.  (If I am with the gastro and I am not having a desirable response, I will pay for a hepatologist to double check the results, and recommend course of action.  In theory, they can always send a letter of recommendation to my NHS specialist that probably will be taken into account, and next prescriptions etc… will be still covered by the Social Security)  

2-. I am well informed before hand about thinks that can go wrong, such anemia, iron store values levels etc...and the possible strategies to tackle them , such as the use of use or increment of 'recovery drugs' to be able to modify length and dosage, and make sure they will closely monitor them and will give me options.

3-. As the minimum, these are the test I was told I  should be having by another forum’s administrator, but; do you agree with the rest?   Is that the general approach in the States/Canada???:

“" Text blood done at the end of week 1, week 2 and week 4 (plus PCR   = Polymerase Chain Reaction). After that, unless anything worrying is happening a monthly test will do. Week 12 will also include a PCR to determine if treatment will continue. You need to have reached a 2 log drop from before treatment start (hence the importance of having the viral load figure) to continue.
If you have the 2 log drop but are detectable at week 12 another PCR should be done at 24 weeks. If at this stage you are still detectable, treatment should be stopped…."”

…. And as I am genotype 1, presumably I carry on another 6 months or more???  With only the monthly test -unless problems arising-??

Any other value that I would defenitely should be checked before and during treatment will be very welcomed.  I am spending hours in the internet with little clear results... it is all soooo complicated!!  or maybe a good link would do!  I will see the nurse on Tuesday, telling me the viral load and explaining treatment, so I have to be ready..

THANKS BY THOUSANDS to all of you for your time and efford!!  I really appreciate having so much help!

Amateur

[Amateur]

I will post another question with my last comments so they come up refreshed....

[jmjm530]

At this rate you will be "amateur" for not very long :)

One thing you want to keep an eye on is your hemoglobin level as well as how you feel. Anemia, caused by the ribavirin, can hit some of us very hard around weeks 2-4, and seemingly comes out of nowhere. It's not just the absolute hemoglobin number, but the drop from pre-tx baseline that can do you in. Any drop over 2-3 points from baseline within a few weeks -- combined with fatigue, etc -- is a signal you may need the helper drug, Procrit (epo). Something to discuss in advance with your doctor, as opposed to when you can barely make it across the street. Of course, you may not have that issue. Also, make sure you get the most sensitive viral load tests available, and they should down to at least 50 IU/ml or even lower. Get your own copies of all tests.

-- Jim