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276146 tn?1453921024

Need All your suggestions & Advice

I'm so grateful I just found this site....It's a wealth of information that I'm just starting to read now.  My husband, age 51, knew he had Hep C for many many years, but only just last week got the test that shows viral load, etc.  He was diagnosed with genotype 1 b.
HCV RNA IU/mL is 707000 H
HCV RNA, QN, PCR is 6.85 H
Bilirubin, Direction is 0.22 H
(These were the readings out of range).  The doctor ordered interferon with Ribasphere for a 48 week treatment, which he was supposed to start.  Then I found this forum and asked him to hold off and just ask you guys about any suggestions, directions, tips, etc. that you can give us.  I've heard about new treatments coming up in a couple of years.  What's your take on that?  If there's any other information you need, I have the test results right here.  I thought a biopsy would be in order but after reading many posting on this forum, I see that is not really the case.  Thanks for any help you guys can give me.....Regards, Patty
18 Responses
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Avatar universal
SJL
When I received my diagnosis, I was in a state of schock!
I panicked and made an appt., with a Gastroenterologist, which was a huge mistake. I actually saw 2 for a diagnosis.(not even knowing that their were Hepatologists.) I treated for 48 wks., responded, then relapsed, maybe seeing the Doctor 3 times throughout therapy. I found that his PA actually did all that was done. By the end of treatment, I knew more than she did and maybe even the Doctor. I wasted 48 wks.I am sure that their are some that can & do treat successfully, but they are not trained for this disease.

I then took a 6 mth. break, gathering every bit of knowledge that I could re: Hep C, and searching for the "right Hepatitus Doctor." Unfortunately, using the other 2 interferon therapies did not work~~~but, I had the support, knowledge, understanding, etc., from this Doctor. He is fabulous.I would like to pass along a few things which I have found to be very important during therapy, if I may. This is my way, not necessarily the right way, but has worked well for me.
. Take your time and find the right Hepatologist-you are actually hiring him, so make sure that comminication is open and the comfort level is there.
. Have a Biopsy. The more you know about the condition of your liver~the better.
. Take your meds and DRINK WATER! Until you think you can't drink anymore.
. Find the right foods to eat, this is important.
. Get plenty of rest.
. If uncomfortable, call your Doctor. Their are plenty of rescue drugs available to help.
. Get a copy of all tests, etc., for you.This is a great help when you need information, which you might not remember.
. Set up a binder type notebook, with different categories. Viral Lodes, Lab Reports, etc. I have found this to be most useful.
. Make sure to see your Doctor regularly. Seeing how you react & feel are far better than talking over the phone.
. Of course, keep coming to this site, it is invaluable. Their are alot of people on here that will readily answer you. But you must remember that we are not Doctors, and are only giving you what has worked for us. All cases and side affects are different, so their is a myriad of answers that you will receive, but they are all given in good faith.

I wish you well, keep in touch.
SJL


Helpful - 0
276146 tn?1453921024
Thanks Trish!  I'm still reading, absorbing, etc....bought a couple of books on amazon.com regarding hep and the liver, just to be informed as possible....  I was reading nygirl7's comments on Dr. Jacobson and seemed hopeful till I read the part he doesn't take insurance....But Jim mentioned even for a consultation its worth going to these top doctors....that's my plan....we'll see what happens....I'm here...not going anywhere....thanks guys for welcoming me!
Helpful - 0
179856 tn?1333547362
One of the top Hep docs in the entire world is right in NYC - Dr. Ira Jacobson.  He is on the cutting edge on all of the studies and trials going on.  He was lead investigator for most of them.  He's not just a "doc" he's made this work his LIFES calling, really.

Unfortunately, he doesn't take insurance.  I did go to him for a second opinion when I wanted to change my course of treatment and extend to 72 weeks.  I spent about two HOURS with him and his PA - answering EVERY question I could think of (bring a note book you'll forget what to ask and then what the doctor says!!!).

anyway if you are in the position to go to him and put the bill thru out of network or something.........he's the top doc.  He even offered to ASSIST with my treatment and help my regular doctor on consults because I was not financially able to afford him.  He got right on the phone with my doc and discussed ME and my case! I couldn't believe what a generous kind intelligent man he was.

I WAS a geno 1A and also 1B and I did 72 weeks treatment - I am now "cured" and no longer have the disease...it was worth EVERY penny.

PS Get the biopsy definitely.

This forum will HELP answer any question you have but we are not doctors and the final word should always come from a good reputable hep doc.  :)
Helpful - 0
Avatar universal
For sure this is a great forum.  I stumbled across it a week or so ago.
I don't feel as alone as I did before and I don't feel like such a looser
(just refering to myself), like I did.  There is a lot of good folks, support
and humor too !!
I got tired of waiting for trials for the new stuff, so tomorrow I'm going in
to get tx (treatment) started.
I plan of asking a LOT of questions - the forum offers good chow for
thought.  Right your qustions and concerns down too, so you don't forget
them when you make the visits.  I had a liver biop too...its good to have all
the info you can to arm yourself.  



Helpful - 0
Avatar universal
I'm very glad to hear that, Pat.  In your circumstances, I think a biopsy is very important. You've both already achieved a great deal. Good luck with this next step in taking on your HCV and keep posting.  

Trish
Helpful - 0
276146 tn?1453921024
We have decided to go with a hepatologist and biopsy....I've gotten the names of some doctors here in the NYC area that I'll give a call to & make an appt. with for a consultation, maybe even two consultations I'm thinking........I, too, will be going down this road as well...both my husband and I are in recovery, clean and sober for 18 years now...so we've had this a long time...just never did anything to follow up about it...He's taking the initiative first...thanks for the support and help and will keep you posted.....regards, Pat
Helpful - 0
250084 tn?1303307435
Why can't you take pain meds? I am stage 3 (2-3 border he said?) and I can take pain med's.Week 7 and pain med's and Xanax (to sleep, high anxiety times) has helped much.
Am careful and Dr. has given me the limits per day on them but 'okay'd' for some Ibuprofen, Tylenol and even Vicoprofen or Hydrocodone (as needed, to be 'measured' also). All 'as needed', but can be done. Why can't you?? Some days, with the headaches, mucsle aches, no way without some pain med's. Gave up that " I can take it' line in 2-3 rd week!! Ask you Dr. what's up with that?

P.S. Assuming it's because you'd stated stage 3, hope I am not getting personal here.

                                                                                                             LL
Helpful - 0
Avatar universal
I am only in week 4 about to start week 5. I am geno 1 Liver 3. I would get bx. If the liver is in good shape he should be able to get meds to help with the sides of tx. I cant take pain meds so it is a little harder but I will survive.
Good Luck
Helpful - 0
250084 tn?1303307435
   Good for you on the 2nd opinion and liver specialist. Just from reading here, my vote is always for a liver specialist, liver disease clinic. Good luck.

  And...... ya' got class :}
                                                                         LL
Helpful - 0
250084 tn?1303307435
Hi and welcome to a great place :}  had I not found this site...whew....may not even still be in tx with all there has been to learn and all the help here.
   Biopsy! My absolute vote! It is a safe, (rarely any problems),very quick procedure, with little to no pain, so let hubby know that also. Many of us were so afraid of it, with no need.
I had needle biopsy and fibroscan, results were close, but at this point I'd say I trust the needle biopsy most (my opinion only.)
  I am type 2b, the easier to treat (or to SVR, tx meds about the same, with much less time .) When I first went in to a liver specialist (also my advice to see) and otherwise 'pretty healthy.'  His 1st thoughts were , "let's do a bx (biopsy) and see where we are, if little damage you can wait a few years with newer drugs around the corner." My bx was stage 3, half way to cirrhosis and being only a 'weekend drinker' (until I knew I had hep). I was in treatment within 6 weeks, so it was needed to tx ASAP. Again, my opinion only...but I feel anyone thinking of treating should have a biopsy first.
My VL on 1st labs in June :              812,000
     VL  2nd labs in Aug.:                    4,430,000
VL 3rd labs on 1st tx day, Sept. 25:   1,550,000
Viral loads fluctuate much. especially if on milk thistle or other reasons.
Note: I am sure you and hubby know that all alcohol is out, healthy living very important here also. Just a tip.
   Good for you in going for more knowledge before starting tx. Many helpful tips here and great, informative, comforting people here to help him, and you, along the way.
  Good Luck in all,                          LL
  
Helpful - 0
Avatar universal
I didn't mean to leave the impression that high viral load was significant in and of itself.  I was more drawing a similarity between the situation of your husband's doctor, Patty, recommending treatment without having done a biopsy based on a viral load factor.  I'm finding that it seems to be a common position amongst docs as they're thinking about it from a medical perspective while those of us who have HCV have a whole lot of things to take into account when deciding when to do treatment... so I think a biopsy is a very important part of making good decisions about treatment for yourself.  

Jim, I do understand that high viral load isn't a reason by itself to treat, no worries there.  I took much more into account than that...my age (47), my job situation, my relationship situation, my plans for the future, how it will impact my children and how I think it will impact my life if I wait.. or don't wait as in pros and cons and benefit coverage for the drugs required...and on and on.  All things considered...and I'm an analytical person who turns things upside down, sideways and every which way... I decided to proceed now.

My doc is a GI however I'm going for a 2nd opinion to a hospital in Toronto (one that PSP goes to and recommended to me some time back) because I don't have total comfort or confidence in the way my GI is handling my treatment or the way he communicates with me.  They know I'm coming for a second opinion and I'll see what my treatment options are once I've done that.  I like my doc as a person...just not how he feeds me information in bits.  The Toronto hospital has a whole section devoted to liver diseases.  I'll feel better going into treatment with a second opinion from a place such as that.  

I appreciate the information you provide here, Jim.  It also helped me make a good decision and thanks for your thoughts.

You're in a good place to be asking questions here, Patty.  It has helped me immeasurably.

Trish
Helpful - 0
163305 tn?1333668571
There is no need to rush.

Become as informed as possible about HepC and interferon therapy.

Does your husband have any other existing conditions that should be taken into consideration?

Viral load does not tell anything about the amount of damage to the liver, the real problem caused by HepC.

The biggest conundrum about HepC is how variable it can be, this includes treatment as well.
    Good luck.
Helpful - 0
276146 tn?1453921024
Thank all of you for your advice....I'll poll to see about the  biopsy...looks like the way to go...if anyone can recommend a good hepatologist in the NYC/Queens area, I'd appreciate it.....Good luck to all of you....I'm glad to be a part of this forum....Pat
Helpful - 0
Avatar universal
You have been given great advice above. Just get copies of all tests and labs for your own records. It's very important especially if for any reason you have to change doctors. Also we like to see them, as we become our own patient advocates. I changed to a liver clinic (hepatologist) at week 11 of tx and never regretted it. Anyway, the GI moved to Oregon long before I finished tx.

Take good care and welcome to the forum.
Helpful - 0
Avatar universal
Insurance and logistics permitting, I'd also recommend anyone starting the treatment journey to consult with a hepatologist (liver specialist) as opposed to a GI or GP. The Hep C landscape is probably changing faster now than ever before -- new tx protocols, new drugs in trials, etc. -- and the average doctor just will not be as up to date, nor have as much experience as a liver specialist.

Trish,

Good luck with your treatment, and I agree that one must make the right decision for *them*. In your case, you've obviously done that.

Just wanted to point out that high viral load is not a predictor of liver damage and therefore not a sole reason to treat from all I've read. You can have high viral load and little liver damage or low viral load and a lot of liver damage. It's good that you asked your doc for a biopsy to get that part of the puzzle answered. Wondering if your doc is a hepatologist or GI? You really want to treat with someone who has lots of experience.

-- Jim

-- Jim
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Avatar universal
pat: I thought a biopsy would be in order but after reading many posting on this forum, I see that is not really the case.
------------------------------------------------------------
My impression from reading here close to two years is that the majority here would suggest a biopsy prior to treatment for someone who is genotype 1B -- but I guess you would have to take a poll on that.

From my standpoint, I would suggest you ask your doctor about a  biopsy priror to treatment, especially for genotype 1, the hardest to treat genotype. A biopsy tells you how much liver damage you have which many of us use to decide whether we should treat now or wait for future treatments.

But even if you've decided you will treat regardless of liver damage, a biopsy still provides useful data in terms of benchmark data, how agressively to treat going in, how agressively to treat when confronted with side effects, and also a comparison with future biopsies that might then show either progression, no change or regression.

A reasonable alternative to needle biopsy might be the new Fibroscan device. However, its's still in trial as far as I know, but there is a doctor in Florida and one in California with private machines.

All the best,

-- Jim
Helpful - 0
Avatar universal
Furthermore, Patty...I should say this.  My doc suggested treatment for me as soon as possible without a biopsy as well but I wanted to know what stage my liver was at.  In his opinion, the high viral load was enough to proceed.  I wanted a fuller picture.  As it is, I'm stage 1 grade 1 which is on the low end of liver damage, thankfully.  I've decided to go ahead with treatment starting in January because it's simply the best time to do this, all factors considered and I want to do it sooner than later.  That is my own decision based on what is best for ME in my own life situation.

Helpful - 0
Avatar universal
Patty, i'm really new at this so I'll just offer this much.  I'm a genotype 1a/1b with VL of somewhere around 1mil+.  I would suggest your husband go for the biopsy.  I did that.  It brings everything into focus as you know what damage if any there is to your liver.  None of the other tests will tell you that.  (Someone correct me if I'm wrong there please.)  At the least, do that.  Then you and your husband can make better treatment decisions knowing what stage his liver is at.  

Good luck to both of you, Patty.
Helpful - 0
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