I am very upset

[denisef714]

My Dr call me today and he said he had just spoken to Pegisit. Clarifing when labs should be done and he said the said every 2 months was ok. Well I went to the web site and went under heathcare professionals and on pg 10 they have a section saying 2 wk than 4 wks and every 4 weeks. It even says what to test for each time. How do I go about this now? Do I call the Dr that would not treat me because my ALT were normal and tell him I am on the treatment would he continue with me? Any input how to handle this would be helpful. Thanks

[nygirl7]

I definitely would try and find another doctor but if you are hellbent on starting treatment right away (which you know is not necessary you could put it off a few weeks) at least show him the documentation you found in case he gets another patient later on who just like you would receive shoddy medical care.

It's amazing how many doctors DONT know about proper managment of treatment - it's sad but just true.  You'd be surprised how many times we have heard this in here.

Hang in there.......it only gets more fun from here on out!   ;)

[spectda]

It looks like you are only about an hour from ucla medical center. There's got to be a lot of good hep c specialists in your area. I find it strange that the doctor won't honor your request, is he a kaiser dr? It sounds like he doesn't understand the importance of checking your hemoglobin, nuetrophils and platelets. and what to do if they are low. He is really leaving himself open to liability by not knowing your condition throughout treatment. He obviously is not a specialist with treating HCV.

Find another doctor and while you are waiting keep treating and take Bill's suggestion of calling or going to see your GP to get the labs done. It doesn't cost them anything.

Of course this is a drag to deal with, but try to not let it make you crazy and keep going with treatment. Good luck-Dave

[Diane12855]

I agree with copyman. It sounds like your doctor hasn't even treated someone with Hep C before. I started with a doctor that didn't like to explain himself, and then I couldn't get return phone calls when I had problems with the pharmacy, so I found a new hepatologist who treats LOTS of hep c patients... the difference is amazing... they know what I'm going through, they return my calls within 2 hours, and most important of all... they know what these drugs do to you and how to make life as bearable as possible during tx. YOU REALLY NEED TO FIND ANOTHER DOCTOR... AND I WOULDN'T GO FOR THE FIRST ONE UNLESS THERE ISN'T ANYBODY ELSE IN YOUR AREA TO CHOOSE FROM.

[copyman]

if your doctor had to call the pharm company to find out how to treat or when to test then you better run from that doctor......FAST!

Seek out a Hepatologist (liver specialist) or a GI that has a lot of experience treating HCV.

Best of luck

[portann]

Denise,

Number one and most important for right now is don't let this rattle your cage - you'll sort this out and in the meantime, PRIORITY NUMBER ONE is to stay focused on taking your meds on schedule, making sure you drink lots of water and eating food with some fat when you take your ribavirin.

How are you feeling from the meds? Reasonably okay?

DO NOT LET this curve ball fluster you, although I'm a bit stunned by what he said Grrrr.

You shouldn't have to struggle to have minimal care during treatment. Your job is taking the meds correctly and his job is to monitor you safely and correctly.

Okay, one heck of  a crazy curve ball but promise yourself you'll sort this out, keep your eye on your goal to beat the virus and succeed.  

Call the number that Desrt provided. It's 24/7, so maybe they can fix this.

You still have the problem of how competent the doc is to handle your treatment. Some people here have changed docs mid-stream. That couldn't be easy but at least one person I can think of said the effort really paid off.

That's for another day but for now, take your meds, take care of yourself and call the number desrt gave you. Someone should be there to talk to, I hope. Let us know.

Susan

[Bill1954]

Denise, try to relax for this evening. Another thought might be to call your primary care doctor, and voice your concerns with him; do you have a decent relationship with him/her? They can order simple CBC and metabolic panels to ensure your safety until you get this straitened out with the GI office. You’ll be okay for the next few days, and if push comes to shove, and you feel awful, ER is another option to exercise as well. They can run labs very quickly if you think the meds are making you ill.

[denisef714]

I can not open adobe stuff

[denisef714]

I will be call that dr 1st thing in the morning also
They are also better on calling back however his day off is TUESDAY DARNIT!

[Bill1954]

You should really read the practice guidelines thoroughly before making any accusations based on internet forum adivce, okay?

--Bill

[Bill1954]

Hi Denise—

I’m sorry to hear you’re struggling like this; it’s not only unfair to you, it could potentially be dangerous to your health.

The AASLD (American Association for the Study of Liver Diseases offers clinical ‘Practice Guidelines’ to physicians so they can structure the way they manage their patients. This document has been approved by the AASLD, the Infectious Diseases Society of America, and the American College of Gastroenterology. The AASLD helps establish the Standard of Care, which is the bare minimum care you are entitled to.

Please read the section ‘assessment prior to treatment, and monitoring during and after therapy’, on page 13/40:

http://www.aasld.org/practiceguidelines/Documents/Bookmarked%20Practice%20Guidelines/Diagnosis_of_HEP_C_Update.Aug%20_09pdf.pdf

This advises the physician:

“…A reasonable schedule would be monthly visits during the first 12 weeks of treatment, followed by visits at 8 to 12 week intervals until the end of therapy…” It goes on to state that labs should be ordered at weeks 4, 12, 24, 4 to 12 week intervals thereafter….

I can’t cut and paste to this page because this is a PDF format, but this is the authoritative document that you want to make your case. I think that anything less than this would be considered unethical at minimum.

As far as how to handle this in the real world, I’d be a little cautious about trying to force this issue any farther with your current doctor. If you feel he’s not managing your care properly, I’d try to transfer my care to another MD prior to taking any action to the state board or anything.

Can you discuss this confidentially with the old doctor, perhaps?

--Bill

[denisef714]

I just left a message for the nurse to call me tommorrow. Thanks for your input

[desrt]

If you are receiving your meds through PegAssist you could call their 24/7 support line (877-734-2797) and explain your concerns to the nurse.

[can-do-man]

Are you treating with a hepatologist? Not sure why a doctor who has treated people before for hcv would need to call to find out when labs should be done...... You really need a pcr done at 4 weeks being a geno 2 so you know how treatment is going...... CBC's should be drawn every 4 weeks and more often if there seems to be any problems...... Best to you

Cando