First Appointment

[Trixie607]

Hello All. I was diagnosed with HepC about a year ago. I was seen in the ER for abdominal pain. Long story short I ended up hospitalized for 3 days after I had very low blood pressure. In the process of trying to figure out what was wrong with me I found out that I tested positive for HepC. I was able to speak with the GI doctor in the hospital who basically told me not to drink and to wait for the new meds. I have my first appointment on monday to discuss the disease and treatment options. I was wondering what are some things that I should ask at this appointment? What will be the next steps for me? I have spent the last year trying to pretend that this wasn't happening. I feel like I have finally come to terms with all of this and now I am focused on getting healthy and getting rid of Hep C. I have been reading this forum for awhile now and I want to thank everyone...you have already helped me so much

[lporterrn]

Brave of you for jumping in. Although there is never a good time to have hepatitis C, this is a good time to cure it. You will need to know your genotype and what stage of liver damage you are at. Have you read Hep"s basic info? This will be updated soon. http://www.hepmag.com/articles/2619_18763.shtml

Here is something very basic to read: http://www.hcvadvocate.org/hepatitis/First%20Steps/First_Steps_with_Hepatitis_C_for_the_Newly_Diagnosed.pdf   

People are happy to answer questions if you have any.
Good Health!

[Trixie607]

Thanks so much for your reply. I am a medical professional. I know a fair amount about Hep C but its so different when its actually happening to you. I feel like Im overwhelmed but Im thinking thats pretty normal. How common is it to have a liver biopsy? Are there those who have not and if so how is your fibrosis staged. Im really keeping my fingers crossed that harvoni will be an option for me (insurance willing) however I am 33 and other than Hep C healthy. I would be willing to tough out Interferon if need be. I just want to be rid of this. Thanks again for replying. Ive told my close family but no one else really knows. Its nice to have someone to talk to.

[BattleTheBeast]

Welcome Trixie, this is a great group of members here and you will find a ton of support if you just ask. I'm on the S/O combo - five weeks along and went from over 8 million VL to undetected. There is hope and people are being cured at an amazing rate like never before. I was stage 4 and that was done with blood work and I've had an MRI and Ultrasounds as well.

Just read away, ask questions, eat healthy and take good care of you while you wait for treatment. I'm not sure where you are located but I can tell you I've had great luck getting excellent treatment quickly by seeing an Infectious Disease specialist physician vs a regular Gastro. The Gastro I did see couldn't wait to refer me out of his office and I'm glad he did!  Some gastro dr seems to be real buttheads where Hep is concerned even with a 56 year old grandma; the guy was sweet as could be until he saw I had Hep and then he was a jerk!

Anyway I'm around if you need to chat.

~Mel~

[Trixie607]

Thanks so much for your reply Mel! I'm seeing the physician assistant at the GI office Monday. I've always had good experiences with PAs so I'm hoping it works out. I will keep the option of the ID specialist as well. Thanks again for reaching out.
I've been reading all of the posts here and I'm feeling much more prepared. I just want to get started with treatment....patience has never been my strong suit LOL

[Bucky]

Trixie,
I have an Infectious Disease Specialist as well as a Hepatologist. I received treatment at a large teaching hospital. All the hepc patients are referred to the IDS and they handle treatment. Since most of them have been involved in trials, I think that is why I was able to get S&O off label without a problem. They must know the correct "phrases" to use with the insurance companies. My Hepatologist ordered my last and final biopsy. I like the idea of have two really smart doctors watching over me. I would not leave my care to a PA or GP period.
I read that the preferred order for hepc treatment was: IDS then Hepatologist then Gastroenterologist.
Bucky

[BattleTheBeast]

Totally agree 150% with Bucky. I think the ID docs  and their staff have relationships with these specialty pharmacies and have been working with them for other infectious diseases such as HIV.

A standard Gastroentrologist practice wouldn't have the volume of patients who require specialized medications, let alone a GP or an Internist.

Another little hint for you, the folks at Accredo (they do the specialized for Express Scripts) seemed to want to push out when they were sending the medication. You don't have to just say OK. If you want it sooner, don't be afraid to ask. If your insurance plan does use ExpressScripts jump right over them and head straight to Accredo, it will save you a ton of aggravation! 1-800-922-8279. Www.accredo.com

~Mel~

[Mike]

All three of these specialists (Gastroenterologist., Hepatologist & Infectious Disease Specialist) are well qualified to dx and treat Hep-C. 

There is no reason (nor research), indicating that one of these specialist is more qualified than the other in treating a Hep-C infection.

Best wishes, Mike

[Bucky]

All three of these specialists (Gastroenterologist., Hepatologist & Infectious Disease Specialist) are well qualified to dx and treat Hep-C. 

There is no reason (nor research), indicating that one of these specialist is more qualified than the other in treating a Hep-C infection.

Best wishes, Mike

Well Mike,
I am going to disagree with you on this .  My Hepatologist referred me to the IDS when the new treatments became available. He told me that the IDS had specialized training and credentials concerning infections and would be the best way to precede with treatment. They work together and I like that fact. My Hepatologist was never involved in any trials but my IDS was giving her an advantage regarding treatment. Why not use a specialist since that is their expertise?
To quote Mel: "For me, my preference was to go to an ID doctor for a few reasons but mostly because of their experience treating ID's, running the clinical trials and in dealing with the insurance companies and pharmacies getting approvals for the medications.  Basically they know the right thing to say and when to say it. The new meds are super expensive and it's been pretty tough for some to get approvals". Ditto on that statement!

Perhaps a moderator would like to start a poll as to the type of doctor that someone used, the meds prescribed and the time and trouble it took to get approved for the meds.

Bucky

[BattleTheBeast]

My two cents on the subject.

Yes,  they are all qualified to treat and may be excellent doctors however I think those who are using an ID team have a little bit of an edge because of the trials they have been involved in and continue to participate in.

My ID doc has done trials on all the new medications and in multiple phases of them and continues to participate. They have a entire department just dedicated to managing the trials. They deal with the specialized pharmacies constantly and are experts at getting the approvals and if they can't guess what? They can help push the way into the next open spot in a trial you meet the criteria for.

I may be prejudice because my ID doc is so amazing but I'd share him and his team of doctors if you are in New Jersey

I think it would be really interesting to find out what types of doctors everyone is using and with all the new medications coming out; who was easily approved, who had to fight for approvals and who is still not approved.


~Mel~

[Bucky]

Mel, I started a threat a few days ago about why people are still being prescribed I or R with one of the new backbone meds. I kind of think that the ones offered older treatments are not seeing doctors on the cutting edge (non IDS) of the rapidly changing treatments or ones that don't want to deal with the approval process for the newest meds.
Bucky

[BattleTheBeast]

Bucky, that's a really good observation! I would really love to gather and see the stats on this. It may help a few more people get the treatment they need quicker without all the stress of fighting for it.

~Mel~

[Mike]

My Gastroenterologist and associative clinic has been involved in many of the clinical trails.

I would also note that it is not the pharmacies who approve treatment - it is the insurance company. Currently, many insurers are requiring specific, objective medical documentation in order to approve treatment. This may include grade 3-4 liver disease (confirmed by biopsy, fribroscan and so on), as well as other clinical markers.

Because of the objective medical documentation required for approval, it really doesn't matter what type of doctor submits the documentation - if  it is fits the criteria, treatment will be approved. If it doesn't - treatment will be denied. It's that simple.

It is also noted that 80% of those with a chronic Hep-C infection never develop symptoms, signs or liver damage. This population may never need to consult with a Hepatologist  or GI, and can be safely treated by PCP, NP et. el.- provided that they are competent in current treatment protocols.

In fact, given the advancements in Hep-C treatment, reduced side effects and the shorter length of treatment, it will become more common for PCP's to treat this disease - especially in the 80% of those infected who don't have any medical issues relating to Hep-C.

There are situations were a particular specialist might be a better choice, however For instance, a hard to treat genotype might do better with an infectious disease specialist; while an individual with decompensated cirrhosis may be better served by a  hepatologist.

In my case, I have hemochromatosis and diabetes, and a  gastroenterologist was the best choice for me. An infectious disease specialist or hepatologist, although qualified to treat Hep-C, weren't on the list of doctors who I would choose to treat my clinical profile as I didn't need their particular clinical skill sets.

Since my GI could monitor and treat everything, I didn't need to look any farther.

Best wishes, Mike

[Bucky]

My Gastroenterologist and associative clinic has been involved in many of the clinical trails.

I would also note that it is not the pharmacies who approve treatment - it is the insurance company. Currently, many insurers are requiring specific, objective medical documentation in order to approve treatment. This may include grade 3-4 liver disease (confirmed by biopsy, fribroscan and so on), as well as other clinical markers.

Because of the objective medical documentation required for approval, it really doesn't matter what type of doctor submits the documentation - if  it is fits the criteria, treatment will be approved. If it doesn't - treatment will be denied. It's that simple.

It is also noted that 80% of those with a chronic Hep-C infection never develop symptoms, signs or liver damage. This population may never need to consult with a Hepatologist  or GI, and can be safely treated by PCP, NP et. el.- provided that they are competent in current treatment protocols.

In fact, given the advancements in Hep-C treatment, reduced side effects and the shorter length of treatment, it will become more common for PCP's to treat this disease - especially in the 80% of those infected who don't have any medical issues relating to Hep-C.

There are situations were a particular specialist might be a better choice, however For instance, a hard to treat genotype might do better with an infectious disease specialist; while an individual with decompensated cirrhosis may be better served by a  hepatologist.

In my case, I have hemochromatosis and diabetes, and a  gastroenterologist was the best choice for me. An infectious disease specialist or hepatologist, although qualified to treat Hep-C, weren't on the list of doctors who I would choose to treat my clinical profile as I didn't need their particular clinical skill sets.

Since my GI could monitor and treat everything, I didn't need to look any farther.

Best wishes, Mike

Mike,
Yes, it was correct of you to see a gastroenterologist since you have a complicated medical profile. My father died from liver failure because of hemochromatosis so I know quit a bit about it.  This fact was one of the main reasons that my  hepatologist wanted a biopsy to check for it as well as to stage my liver damage. When it was determined that I had did not have a problem with iron overload I was referred to the IDS for Hepc treatment. She also see patients with HIV, staph and many other types of infections.
Bucky

[Mike]

Hi Bucky,

I'm sorry to hear about your father.

It sounds like you have a good treatment team, and I'm pulling for you to slay this dragon in December!

Best, best wishes, Mike

[BattleTheBeast]

Mike, Bucky,

You know what the best part of our conversation was? That we are all getting excellent treatment and are passionate about the road we chose as the best road for each of us as individuals. It's just so important for people to understand their own situation and what options are available so they can choose the best one for them to slay the beast and stay as healthy as possible in the process.

Bravo! Let's keeping slaying the beast at any and all path's it tries to take!

~Mel~

[Bucky]

Mel,
It is great that we have an open and honest forum where we can disagree and still carry on an adult conversation. It reminds me of the "Point Counter Point" segment that used to be on 60 Minutes years ago.
I do have the utmost respect for Mike and Lucinda and their guidance and willingness to moderate this forum.
Bucky

[Trixie607]

Thanks everyone for weighing in! I am going to go to the first appointment and get a feel for things. I'm a physician assistant myself so I feel comfortable with seeing her. I chose this practice because they were the GI team that saw me in the hospital when I was diagnosed so they have access to all my labs and such. The GI doc was the one who encouraged me to wait last year for the new treatments so I'm hoping they are familiar with the new meds. If not I'm out of there! If I don't feel comfortable with this team I will definitely see infectious disease. I'm looking forward to finding out my genotype and viral load. Hopefully by the new year I'll be starting treatment. That's my goal....a healthy me for 2015.

[Trixie607]

Also I looked up the PA I am going to be seeing. She has specialized in GI with a special focus in hepatology. Fingers crossed!! Monday can't come soon enough

[Mike]

You should be fine. The new treatment protocols are short, with minimal side effects.

It's not like the days of old when a 48 week course was required, as well as significant monitoring, frequent office visits and blood work.

For 80% of those currently infected, it really isn't rocket science: Find out the genotype, determine the best course of treatment (Sovaldi + ?) and take the medication. Monitor CBC's and liver panel while on treatment and complete a VL at the end, which is repeated in 12-24 weeks to confirm a sustained virological response.

Best wishes, Mike

[Trixie607]

So the first appointment went well. I really liked the PA that I saw. She was very knowledgeable and has 4 patients on harvoni. She was able to access my original labs and at the time of my diagnosis my viral load was 50,000. I'm going today to have more bloodwork. She's getting a genotype and fibrosure. She said she was going to get a few labs to rule out any genetic liver diseases that could complicate treatment. We're also getting a PT/PTT in case insurance requires a liver biopsy for meds. I'll see her again in 2 weeks so we can discuss my genotype (which I'll finally know by then) and what the next steps will be for treatment. Looking forward to getting this all done.

[BattleTheBeast]

Trixie,

That's excellent news, each of us has our own paths and experiences and the more we share the better for all of us. I am so happy your choice is working for you!

FYI, the fibrosure wasn't paid for by my insurance because they say it's too new and experimental but I am glad I had it done anyway. At this point what is another 100.00 bucks!

~Mel~

[Mike]

Hi Trixie,

Sounds like the PA is up on what needs to be done. Once you have your genotype and fibrosure results, you and the PA can look at treatments tailored to your specific clinical picture.

At that point, the treatment request can be sent to the insurer, and you can see how they (the insurer) responds. Hopefully, it will be approved straight away!

In any event, looks like you're on the road to recovery.

Best wishes, Mike

[penny]

Trixie
what genetic liver diseases should we be tested for? I want to make sure too.

[Bucky]

Trixie
what genetic liver diseases should we be tested for? I want to make sure too.

Penny,
Are you being treated with Sovaldi & Olysio?
Bucky

[Trixie607]

Penny I think she is testing for hemachromatosis and alpha 1 anti-trypsin deficiency. She said its very unlikely that I would have either of these diseases without symptoms but they always make sure because it would change the treatment. Im just looking forward to my 2 week follow-up so I will finally have the entire picture and I can get moving with treatment. Heres to a Hep C free 2015!!!!

[Mike]

Hi Trixie,

I have hemochromatosis and the only Hep-C treatment consideration, was to make sure my ferritin levels were in a normal range prior to, and during, treatment (ferritin is a protein found inside cells that stores iron so your body can use it later). Ferritin levels are decreased through therapeutic phlebotomies.

Basically, I use to have this done at the Red Cross, and 'donated' a 1/2 pint of blood weekly for 10 weeks. Once the levels were normalized, I only have to do it once or twice per year. 

Hep-C may also cause high ferritin levels, so it took a genetic test (hemochromatosis is a hereditary disease) to diagnose. It's the only blood test that I had a Ph.D. chart the DNA markers and write the report, and it was then signed off by both the Ph.D and a MD. It took about a month to get the results.

Here's a link to some research that discusses the correlation:

https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=2&cad=rja&uact=8&ved=0CDMQFjAB&url=http%3A%2F%2Fwww.ncbi.nlm.nih.gov%2Fpubmed%2F22095909&ei=zv5rVOeOKIWjyQS72IGgBA&usg=AFQjCNH7pVB8-iArJnSDfMqNtmTl7_c9hw

Best wishes, Mike

[Trixie607]

Thanks For the info Mike!!!

[Bucky]

Trixie
what genetic liver diseases should we be tested for? I want to make sure too.

If your meds include Olysio then it would be Q80K polymorphism.
Bucky