New guy in MD...Hep C Treatment info needed

[2toes]

Hello All, I'm new to this forum and recently diagnosed with Hep C.  No symtoms yet but I am preparing for treatment with the best doctor I could find in Maryland (Montgomery County) without help.  I need help in getting information on: 1, Best type of doctor I should seek?  2, What I should know before starting Tx?  3, Any support groups in my area if known?  I'm sure I'll have more questions after I learn enough to know what questions to ask.  So I guess 4, What questions should I be asking?  I will appreciate all the help I can get...thank you.

[lovebilly]

Do you know how long you have had it? I'm not sure myself, as I chickened out when it came to my biopsy, but I could possibly have had it for 10-12 years and I only have fatigue and foggy head. I gave it to my fiancé 4 years ago and he has slight fatigue and recently had an ultrasound and had no scar tissue, so they recommended him to wait for treatments. Plus he is wanting me to start mine first. One thing I do wanna tell you is, don't let anyone make you fell like **** about it and don't be too open mouthed about it. I learned the hard way, I got fired from my job. If you will look at my forum about what kind of attorney I would need to file a discrimination claim against my employer (Im not sure exactly how its worded) and read what everyone has written, you could learn new things. Also you could look for me under lovebilly. Don't be hard on yourself, trust your instincts.... the disease itself doesn't really do any damage for like 20 years or more... so don't rush into anything and research it.

[2toes]

I wish to thank all those that took their precious time to advise me with some excellent information.  Please pardon my delay in getting back to you.  I have been busy reading everything about Hep C that my available time will allow.  I am still working daily (desk job) and do not have as much free time as I would like.  I'm particularly grateful for those that mentioned that I have a choice in whether I want to be treated now or to wait. I have seen a G.I. doctor who had me take some baseline test and get blood work done to prepare for treatment. During my consultation, after he examined me and reviewed the blood work results that I brought with me, he asked if I wanted to be treated.  I said yes but at the time I was very curious as to why he asked...now I understand why. I get an annual physical with my PCP and nothing in my liver blood work ever hinted that something was going on until early February.  I hope that means that I'm not too bad off.  One last question...can any blood test tell what condition my liver is in or is a biopsy the only thing available?  Thanks again guys...

until later.

[Frank J. Perrotta]

I am in the same boat as PGinMD!

Back when I started my treatment the philosophy was "Treat, Treat, Treat" and I did not have access to the internet to do much research - actually I was a bit shocked, since my numbers were low and I was really super healthy, when the liver gurus all said I should treat instead of lets come back in a year and see where you are...

I dont know if what is going on with me is what PGinMD is talking about - revving up what would happen as one ages!? The Mayo has come out with what they define long term sides after treatment as Post-Interferon Syndrome (P.I.S.) and it has totally disabled me. I am on 100% SSI Disability now (for about 5 years now). Chronic Fatigue is the main Syndrome but there are half a dozen more that we are trying to treat with little success.

Best of luck with your decision 2toes.

[orphanedhawk]

I made a list for newbies which I will post here~ hope it helps.

I will say that the important thing to know prior to deciding when to treat, is what condition your liver is in. If it is healthy, stage 0-2, you might want to wait for the new treatment options which are doing great in clinical trials.
Best of luck.

It is always preferable to have a hepatologist, a liver specialist and not simply a GI to help you with treatment. A GP is not trained in liver issues and should be the one to refer you to the specialist.

Questions for the doctor:

How experienced are you in dealing with Hep C ?
Do I need a biopsy before treatment?
How often will I be doing labs during treatment?
What is your protocol for dealing with low wbc or rbc?
What about other side effects?
How often will I be seeing you during treatment?
Who do I contact in an emergency ?

Will I be able to have copies of all my labs and tests ?
Will you be available via phone or email to answer my questions ?

http://www.medhelp.org/posts/Hepatitis-C/Going-back-in/show/1785793#post_8220897

[PGinMD]

I wish you lots of luck.
I have only 1 point to offer. Be very sure it is time to be treated.
My story, I thought I was doing the right thing by getting treated. I made it pretty ok thru treatment. Biggest complaint was always very tired, and more migraines.
After treatment- any medical problem I had earlier in life has increased.
I have since been asked why I was treated when my numbers were so low. (I did not know I had a choice, the Dr. did not open any doors that I choices, I thought the Hep C would just get worse.) I have also found that if I had been under the care of the Mayo Clinic, they would have observed, not treated at that time.

I too am in MD. Harford Cty. But I most likely got mine while in Florida. LOL, we think it was from sharing a straw or rolled dollar, (I experimented with drugs for about 3 weeks, then got smart. It was too late.)

Good luck,

[medic54]

Hey 2-
1- All else being equal- get a Heptologist and not a Gastroenterologist. More specialized and committed/interested in your liver..as opposed to your liver, stomach, pancreas, spleen, gallbladder... Now, having said that I stayed with a gastro guy (after interviewing 2 others) because he was willing to give me the high dose riba and he was close (knew long drives would be very tough) and I've 22 years of medical ed and experience (the last 5 reading HCV treatment/stats) so I felt I could advocate for myself through this guy pretty well.
2- Get a biopsy so you know where you stand. There are interferon free regiments on the horizon but nothing is sure in drug development so if you turn up a >2.5 on Metvir Fibrosis Score (biopsy will give 2,3,ect...your hep doc can give you a more specific interpretation on weather your close to 2.4 or 2.8 ect from the biopsy report summery)- Important as the typical time frame from level 2 to 3 is 7 to 12 years while level 3 to 4 (cirrhosis) is 4 to 8...and treatment success  rates drop 5% for level 3 and 15% for level 4. Further, biopsy may influence amount or length of treatment.
Good Luck... PS I'm a Marylander 2.. must be something in the water!

[2toes]

All of you have been very kind in responding to my questions.  I appreciate the support.  It's nice to know that I'm not alone in this.  Until next time.

2toes

[2toes]

Thank you Idyllic

[2toes]

Thank papimilk

[2toes]

Thank you Idyllic

[2toes]

Thanks Lindaz

[2toes]

Thank you.

[papimilk]

I see that you have received some good info already. My best advice is to educate yourself fully, get support and don't be afraid to ask your doctor questions. Don't drink alcohol or do drugs if you are serious. Try to understand your blood work. Prepare yourself for these meds and the time you will be on meds depends on your type, any cirrohsis, how long you have had c etc. best of luck

[Idyllic]

Before even preparing for treatment or even considering treatment it helps to know your Genotype. Which meds you take is determined by your genotype.

2. It helps to know how far your fibrosis has progressed (i,e., what stage of fibrosis you are). Some people have no symptoms which means asymptomatic so going by that is often a poor indicator of your state of health. Some people develop conditions or ailments due to having Hepatitis C called extrahepatic manifestations.

3. Some people whose fibrosis is not very advanced and have no related health issues opt to wait for the next generation of Hepatitis C Meds coming down the pike. They are doing really well in trials; they are far more efficacious; with a potentially shorter treatment duration and a considerably less harsh side effect profile.

So once you find out your genotype and stage of fibrosis as well as any other related matter treating with these meds might be an option.

I guess the point I am trying to make is be sure you have all the knowledge you can and options to base a decision on.

If you have not been vaccinated for Hepatitis A and B be sure to ask about that.

[Lindaz]

Hi there......the best doctor you could have is one that you feel comfortable talking to and one you trust.  What to do before treatment is to really get yourself ready mentally and physically as much as you can.  Get as much support as you can.  You will find it here.  The questions I would be asking would be what is the worst thing to expect and what is the best.  You need to be prepared for anything and everything.  I like to know what I am up against and how I can help myself to fight the virus and help the meds do their job.
All the best and take care
Linda x

[WOG1964]

Good Morning to you and welcome,

If you look at all my post, you will find lots of answers to lots of questions I had when I first started on this forum. I know one thing everyone stressed to me is to find a Hepatologist!. This is the type of doctor we want. I am waiting for my appointment next week. I asked about what questions to ask, you will find that on my post and a list of things you should know and get before treatment. I had LOTS OF QUESTIONS and everyone on this forum was and IS so wonderful.

May God Bless you and DECLARE YOUR VICTORY TODAY!