Which doctor?

[Duke3d]

I have recently been diagnosed with Hep C.
Genotype 3a. Viral load 1,450,000
Biopsy report- stage 0, grade 2

A local  internal medicine  docotr is in the group with my family docotr and has treated 32 patients Hep C patients. He  is very close by. I'd never have to miss work to treat with him, blood tests would be easy to fit in and I am relatively new  to my job. I saw him before my biopsy.

I decided to look further before deciding what to do. I am going to treat this now. Like everyone if possible I want to get rid of it and get my life back.

I am scheduled next week in to see the head of the Pittsburgh UPMC liver center. HE has of course published numerous articles and studies on Hep C and I would assume is an expert.  I'd have to use all my sick days just to get in for appointments to see him. I don't know if weekly blood work could be done locally, if not it seems undoable.

Given my genotype, viral load and level of liver involvement, what do you think?

Is the hepatologist always the best choice for hep C treatment?

I am planning to ask each how they manage side effects.

Any other questions I should ask?

Any opinions are welcome.

Thanks

[Teufelhunden]

A lot to think about I know. I put off three years after being diagnosed. My local doctor, like portann's, really didn't push the treatment, but he brought it up at every visit. And, like you, I just wanted to get it out of my body. So, without really knowing anything about hepatitis (until I found this forum), I finally relented. Looking back with hindsight, I would have gathered as much information as I could before making that decision again. The treatment doesn't only affect you, it affects everybody around you as well so be prepared for that.  And also remember, once you start you're usually in it for the long haul. I'm 56 years old and if my age would have made a difference in whether to treat again so soon or not, I'm sure Dr. Mchutchison would have commented. Life is really not any different now then it was when I was diagnosed. I don't like having hepatitis but until it's time to fight the dragon again, I learn from yesterday, live for today, and hope for tomorrow. Good luck and take care.
Teuf

[Krisosterous]

I can understand your concerns and reasons for wanting to treat now.  As you make this decision, though, you must take into consideration the potential sides from the Tx.  After almost 4 months of no drugs, I am still suffering from many Sx and my health is extremely diminished.  I have also lost significant eyesight in my right eye.

Also, have you considered that you may not be able to work full time while treating?  There is no way I could have managed it!  I know that some do, but many cannot.  I'm angry because after suffering so much, I relapsed after 3 months.  Since I was Grade 3 stage 3, I really needed to begin Tx or just not go that route.  As others have said, things are not that pressing for you, it seems.

Whatever you decide, I pray that you have great success!

[Duke3d]

I knew that I'd get some responses here that would give me food for thought.

I do think that I'd like to hear what the top hepatologist has to say in regard to treatment
at this time. I know that this is someone who has seen it all in regards to this virus. Still
I would like to just deal with it now. Even with new meds, the most they can offer is better response with perhaps a shorter course of treatment with the current meds included- so simliar or more side effects.

As to why treat now. I am 55 and hear the disease progresses more rapidly with age. As an only child of an elderly parent with COPD, I would like to feel that this is out of the way before she declines and needs my help. My husband would like to retire in 2 years but  if we want to keep his health care indefinelty would have to wait for 4 more. I am also looking toward  retirement in 3 or so years and this disease puts that decison on hold due to insurance concenrs. I am also scared that I'll develop something worse due to the virus, like nonhodgkins B cell lymphoma that I hear can sometimes occurs.

I am scared of the side effects but also am a fighter. ALthgouh I was only diagnosed a few months ago, I feel like I want my life back, somehow this disease snuck up and stole it from me.

I was terrified of what the biopsy would reveal but am amazed at the results. God has blessed me in that regard. Given that I believe I have had this for 30 to 33 years and have regularly been a wine drinker it is hard to believe the minimal damage reported. Perhaps waiting might be a better idea. At this point I don't know. There are so many  decisons and no perfect answers.Like everyone I just want to make it be gone.

[portann]

My stats are similar to Teuf's. Even if I don't relapse after my current tx, I wish I'd waited for shorter and more effective protocols.

I also wish I'd received the excellent advice that Teuf received from Duke. Mind you, my hepatologist shook his head and said he wouldn't treat if he were me but he didn't explain it persuasively.  I pressured him to let me proceed.

Excellent advice is worth a small inconvenience, especially before starting tx. Once on tx, I was too pooped to organize much of anything, except my pill box. Get the best advice you can now, even if it requires some travel time.

[jmjm530]

Teul: ...received a second opinion from Dr. John McHutchison, who is a distinguished GI and liver disease researcher having conducted over 100 clinical studies as a principal investigator, and authored more than 150 papers on hepatitis and related topics in peer-reviewed journals,
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Now compare that to a local internist who has treated 32 patients. As they say on the tv show..."deal...or no deal" :)

[Teufelhunden]

I concur. why treat now? Given your stats, you can certainly afford to wait for better treatment options. I treated for 48 weeks with a local doctor and three months after my treatment ended I relapsed.  I was getting ready to treat again but went to Duke University Medical Center and received a second opinion from Dr. John McHutchison, who is a distinguished GI and liver disease researcher having conducted over 100 clinical studies as a principal investigator, and authored more than 150 papers on hepatitis and related topics in peer-reviewed journals, and his opinion was that I shouldn't have even treated in the first place with my stats (geno 1a, stage 1, grade 1, VL 470,000).  He told me to wait because as Jim stated, better and newer drugs are just around the corner.  Believe me, looking back at those 48 weeks...I'm waiting.
Teuf

[jmjm530]

Got so focused on the hepatologist verus GI thing, that I didn't fully digest your stats.

Given the fact you have zero liver damage, why do you want to treat now? Newer drugs are coming out of the pipeline soon which promise better results with less exposure to these very strong and potentially toxic drugs that can leave you worse off than before you started treatment.

You might want to do a bit more research before making a decision to treat, but if you do decide to treat, a strict early stop rule would make the most sense. In other words if you're not virus undetectible at week 4 via a very sensitive test, then I would stop treatment and try again with the newer drugs. That way you're limiting your exposure to only 4 weeks in a scenario where you are responding slower than the norm for your genotype.

-- Jim

[jmjm530]

Bill: There are those here that heavily promote hepatologists; to the point of exclusion of any other specialty.
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Guilty as charged :) And while I"m sure there are some good GI's out there, the problem is that you probably won't know the good ones from the not so good until it's too late. This forum is just full of stories of GIs messing someone's treatment and often with some very basic decisions.

An internist who treated 32 patients? I would run as fast as I can from that one. A good hepatologist at a large, teaching hospital probably treats hundreds of patients PER YEAR. Totally different clinical experience base not to mention the more advanced training which permeates into everything from diagnosis to treatment proctols to intervention with helper drugs.

Personally, I can't think of one good reason to treat with any specialist except a hepatologist other than logistics or insurance and even the logistical issue can be overcome if you find a local GI willing to work with a hepatologist who you see for an initial consult or evaluation.

That said, there are a few here who have gotten excellent treatment from GI's but in many cases they have done an ENORMOUS amount of research first and basically spoon fed the GI instructions. Unfortunately most are  not willing to do so much research and in many cases the research was done after a first failed treatment. IMO best to give yourself the best chance from the get-go with a doc who knows more than you as opposed to the other way around

-- Jim

[Bill1954]

Hmmm…

There are those here that heavily promote hepatologists; to the point of exclusion of any other specialty. I’ve had very good experience with a local GI doc; he was intelligent, compassionate, and well versed on this disease. Same dynamics as you in terms of local ease of service, too.

Given that your genotype is usually easier to treat than genotype 1 (the response rate is typically around 70% I believe), and you have very little damage, you might do well with the local doctor.

One thing I’d discuss with both doctors thoroughly would be how they manage helper drugs; i.e. what parameters are used for intervention should your red and white cell levels drop significantly. This can make or break even a relatively simple case; if they aren’t using them judiciously, you might end up being pulled prematurely from treatment, or dose reduced unnecessarily; either way, it could compromise either your treatment or the long-term outcome.

Ask them if and when they intend to intervene; for instance, if your hemoglobin reaches <10.0 g/dL, do they intend to dose reduce, or Rx Procrit. Same with white cells, and platelets. Will they prescribe sleeping and anxiety agents if needed? How about pain management? These questions should help greatly in your decision, I’d think.

Good luck and perhaps others will chime in shortly with their views so you can arrive at a consensus.

Be well—

Bill