Infectious Disease vs. GI or Hepatologist

[Believer7777]

I've been on the forums for 20 weeks or so and have truly enjoyed my time here.

I've learned a great deal from everyone and honestly have become very insecure in my Dr.'s capabilities. He seems to have 90% down, but there are a few things that have raised concerns.

My Dr is an Infectious Disease specialist; however I've notices that most people go to a hepatologist or GI. Am I in the minority?  Did I make an uninformed choice?  

Here are a few things I've been unsure of, that if it wasn't for the forums, is be at the mercy of my Dr.  

He didn't even ask me to do a VL at week 4
He keeps giving me neupogen when I hit .9 ANC versus the .5 I hear on here.
He tells me the RIBA is the cause of low WbC. Which I know is the inf.

If I wasn't a RVR and UND then I'd switch DR for sure. Any thoughts on this?

Thanks guys.

[Trish77]

Wow..sorry...that got a bit long.

[Trish77]

I wouldn't automatically rule out an Infectious Diseases specialist to treat with but I suppose I'd gravitate more towards a GI and even better a Hepatologist.  All in all, any one of them could be current or not with treatment practices and new advances in Hep C treatment and studies.  With any of them, it's a buyer beware thing.  I know an ID specialist in my area who treats many Hep C patients and stays very current and would have given that 4 week PCR and yet another who is a Gastroenterologist considered to be a Hepatologist who feels that high viral load is a reason to go into treatment.  

Being an ID, he might have a different perspective on ANC levels and I'd simply ask him why he's giving neupogen at .9 as Bill suggests.  There are a number of treating doctors who are not comfortable with letting ANC get down to that .5 level but .9 seems a bit early amongst even the cautious to be adding in the neupogen.

That 4 week PCR is so predictive of SVR that, even though I see it's not an actual recommendation in the AASLD guidelines (which I find curious), I'd feel less secure about a doc that wouldn't automatically order one, frankly.  

As for the riba being the cause of low WBC, if he thinks that's the MAIN cause, what does he thing is the cause for low HGB?  If it came to dosage reduction for low white counts what would he be reducing?  INF or riba?   Anyway, there are some who think that Riba does impact the whites to some degree but thinking it's the main reason for hits to white counts would concern me also.  I would ask him about that too....being an ID might have some influence on that for some reason.

The other thought is that perhaps this ID doesn't have all that much experience treating people with Hep C.  That could happen with a GI as well.  It all comes down to experience and current knowledge regardless which way you go.

Regardless, some people have started out with doctors who might not have been all that current or experienced but were open to information their patients brought in and were willing to entertain different treatment approaches.  That can be valuable also.  Not ideal but any doc who is willing to dialogue with you and entertain different approaches and ideas is a real positive.

So I wouldn't say you made the wrong choice in choosing an ID, as it depends on more than that however it's not the common choice.  Now that you have him and are progressing through treatment - important is how open he is to hearing your concerns and taking approaches you'd feel more comfortable with.  

Dunno if that helps.

Trish

[Bill1954]

I’d guess the majority of HCV patients are managed by GI doctors; some by hepatologists, and again a few by ID docs.

I think it might be more likely to find an ID doc involved in clinical trials, perhaps? I believe they manage the bulk of HIV/AIDS, and should be generally quite capable of handling routine HCV cases.

Often very good clinicians are poor communicators, particularly specialists; they tend to have that vision that’s ‘half an inch wide and ten miles deep’. They’re really good at their field at the expense of perhaps basic communication skills. To add to that, sometimes there’s a spoken language barrier as well; is English your doctor’s native language? Could that be an issue maybe?

Even we as patients can access basic medical info via the internet; doctors have excellent tools to assist them as they go along. It’s hard to imagine your doctor lacking fundamental info like that, isn’t it?

Maybe if you have specific questions, you could print out a couple of paragraphs from peer reviewed, published articles that supports your position, and then, using your best diplomatic posture, ask him to review the info and interpret it for you; maybe you’ll both learn something from the exercise?

A good, authoritative source for HCV is the AASLD Practice Guidelines for HCV management:

http://www.hivandhepatitis.com/hep_c/images/hepatitisc.pdf

I’m not sure a four week PCR is mandated by the practice guidelines, although it offers the clinician and the patient invaluable information. Intervening with ANC at .9 isn’t particularly aggressive compared to other doctors; have you asked why he decided to use this for initiating the GCSF drug?

Good to hear you’re still plugging along; take care of yourself,

--Bill  

[Believer7777]

Thanks James, my WBC is so volatile I'm in that office every ween for a blood test.  Feeling ok other than that and a crazy reaction to the neupogen last month.  

[James10500]

Of course a good doc is important.  But the bottom line is either the mess work or they don't.  I never saw my doc after the first month of tx.  He ordered lab work once a month, his nurse called me about a week later.  Perhaps I was an easy case UND after four weeks, and bloods hung in there, I never needed any rescue drugs.  Good luck.

[Believer7777]

By the way GT1.