doctor's advice to wait to treat

[ChrisDDD]

I printed these to be sure I state this correctly.  My hepatologist's letter to my PCP in part:  "Today, her main complaint was about forgetfulness."  That statement is the reason I was put on Lactulose, but further on in the same letter he says, "She has some evidence of mild hepatic encephalopathy that is mainly related to the medication that she takes.  We recommended to lower her dose of clonazepam and amitriptyline gradually."  Then, "At today's visit, we discussed treatment options for genotype 1B.  Simeprevir and sofosbuvir could be requested today.  The other option is to wait for Sofosbuvir and ledipasvir treatment that should be available in October.  Both options have high expected SVR rates around 90%.  We decided to wait until October mainly because we have more data for previous nonresponder with this regimen.  If the patient changes her mind, she can contact us to start Sofosbuvir-Simeprevir earlier.  In the meanwhile, we will start her on rifaximin 550 mg twice a day."  (I'm not going to take the rifaximin because it costs $2,000.  The reason for taking rifaximin was so I could stay on the Lactulose dosage I'm at now.  Increasing the Lactulose was causing me to have to wear diapers.)  So the whole time I've been on Lactulose I thought was because my liver was increasingly unable to do its job because of the HepC.  Now he says "mild hepatic encephalopathy that is mainly related to the medication that she takes"?  Can you see why I'm confused?  I am aware of the typo with 1b and 1a.

After all of you were so kind to respond to my questions, I contacted the Fellow and managed to print the exact response in a note to me on their web site:  "I spoke with the patient today and we will request a Q80K mutation.  If she is resistant to simeprevir, we will wait to October for treatment with Ledipasvir.  If not, she will probably start with Sim+Sof."

I know there are many people on this site with worse problems than mine.  I do all the research I can and read many of these posts, so I don't want to take up too much time with my questions, but what should I do?  Do I have to wait until October or can I start treatment next week if the Q80K mutation is okay?  If it isn't okay, should I go against my doctor's orders and start "Sim+Sof", as she calls it, knowing it's not going to work?  Agh!

Chris

[flyinlynn]

Hi Type O

Lactulose is used to treat hepatic encepathalopathy. Do you have any signs or symptoms of HE?

http://www.webmd.com/digestive-disorders/hepatic-encephalopathy

That memory thing you mentioned could be an early symptom.

Good Luck
Lynn

[nan535]

"...but I would not take Lactulose for it."

Just curious - why not?  

[Type0]

Off label treatment http://hepatitiscnewdrugs.blogspot.com/2014/05/gileads-sovaldi-dominates-janssens.html

Why are you on Lactulose? Do you have cirrhosis? Forgetful? Wow- how bad is it? How old are you and what does it do to you? I am forgetful too, enough for people to joke me all the time, but I would not take Lactulose for it.  

[nan535]

I think Hector's post on another of your threads  pretty much lays out why starting treatment asap is preferable. This of course is if you do not have the resistance issue. Correct me if I'm wrong, but  I do not think your doctor is advising against starting treatment now so long as there is no resistance issue.  As Hector noted, approval by the FDA is expected in October but availability probably will take at least a month or two longer.  
    Your doctor's note said "The other option is to wait for Sofosbuvir and ledipasvir treatment that SHOULD be available in October.  BOTH options have high expected SVR rates around 90%.  We decided to wait until October mainly because we have more data for previous nonresponder with this regime"  (my emphasis on "Should" and "Both")
     You already have symptoms of decompensation (HE and I believe you have portal hypertension?).   It is for this reason that I believe that IF you can safely treat now (with no resistance issue), you should.
    As I said, from what you wrote of the dr's notes,  I do not believe your doctor is opposed to your starting now, assuming you do not have the Q80K mutation.

[ChrisDDD]

Thank you.  Thank you for the reassurance about my doctor, and I'm also starting on the Rifaximin tomorrow after reading about it.

[ChrisDDD]

thank you.  sorry for the confusion.

[can-do-man]

Would like to add because you are a 1a instead of a 1b nonresponder is even more reason to take this certain doctors advice. 1a's have been harder to cure then 1b's, although slightly.

[can-do-man]

You have one of the best Doctors in the field of Hepatitis C in Dr. Nezam H. Afdhal. He knows is stuff and I would follow his advice.

" We decided to wait until October mainly because we have more data for previous nonresponder with this regimen."

Since he is involved in research from top to bottom. He knows more then we do.

[nan535]

You have several threads going so the advice you have received on this is scattered.

"If it isn't okay, should I go against my doctor's orders and start "Sim+Sof", as she calls it, knowing it's not going to work?"  

As I posted previously on another thread, I would start the Sim + Sof treatment now if there is no problem with resistance. I would not go on this treatment if there is a problem with resistance.

Nan