switching DRs during treatment

[mll]

Hi all, I must say I've been reading here for more than a year and have asked questions from time to time but never really felt like I fit in because, I wasn't experiencing alot of the things you guys are going through because I wasn't on tx and I have a milder case. Well 1 week into treatment and I surely feel different now. I can definetely feel the depression. I'm very irritable and grouchy. My question is has anyone ever switched Doctors during treatment? I have communication issues with my Dr's nurse. She never calls me back. I talked with the Dr about it last time I was in. This time I called her 3or 4  times and she still hasn't returned my call. I am thinking of switching Dr's and am wond3ering if any of you have during tx.
Thanks,
Michelle

[Magnum]

Well, I've been off the site for a while, but I'm hoping and wishing for successful treatment for each and every one of you (and me too) hehehehe...

I get bloodwork every 6 months, which is what the doctor suggested since I don't seem to be progressing. I'm 1a and stage 2 Fibrosis, but holding steady. The itching at times is very aggravating and is caused from the Hep C in case some of you don't know, or are experiencing it in wonderment. I've been off treatment for over a year and I'm FINALLY putting on weight again and getting that healthy facial look instead of the sunken cadaver syndrome. I think that the body will rebound fully once the Hep C is gone. Like all of you I'm hoping the Protease Inhibitors come-a-knocking soon. Naturally, I stopped drinking 5 years ago and I will admit I do miss it when company comes over or when I go out with friends, but I don't miss it at all when I'm alone. The doc says the fact that I stopped drinking led to the diminishing of the ALT and AST spikes. I also have to contribute that, as well as the doc, to Sam-E, which he highly recommends. Sav-On drugs has a 2 for 1 sale at least once a month. Get the double strength (30 tabs) because you will get 60 tabs (2 for 1) and only need to take one a day and that's good for 2 months. So, $40 = 2 months supply. I'd say that's a decent price, considering I used to spend that much drinking in one night at any given bar on binges.

At any rate my friends, my prayers are with you all. You must fight and work hard to get cured. No one's gonna come knocking on your door offering you any miracle cure, so you must get things done yourselves. Stay the course with treatment and when you see your doctor, insist that all and everything that can be done, is done for you. We will all be victorious. It's just a matter of time...

Magnum

[Ziggy2004]

Hi Ambush;
I did begin treatment last February 2003.  I was only good for 7 weeks and had to come off of it. My weight went from 115 to 92 and my hemo from 130 to 79.  Not good numbers.  There was nothing else to try so my doctor just tells me I am "in limbo".
I have meet a man in my apartment complex who is also Hep C.  We came about knowing of each other in a very strange way.  He was on tx for 4 months and was then just dropped to very low doses as he was having a hard time - that is where he stands now.  I told him on the weekend about this forum and people were talking of drugs that I had never heard of.  He says he has friends in the states and they have access to meds that we do not have here.  Given the price of some of the meds, crossing the border to buy them is out of the question with the health plan not paying.  My meds last year cost $974.00 every 2 weeks.  That gave me 2 injections (1 each week) and 2 weeks supply of Riboviron.
So, we wait....
Cathie.

[TomWill]

I live in Bradenton FL. just south of Tampa.
Watch out for sun burn our skin is sensitive now just like our emotions. LOL

Tom

[Revenire]

I am not sure if this is where Magnum posted from but I think it may be.

<a href="http://www.natap.org/2004/HCV/030404_01.htm">Hepatitis C. Development of new drugs and clinical trials: Promises and pitfalls</a>

[layla]

Sorry to hear your news but your strength and attitude are incredible. I hope we will see you around. LL

[MajNeni]

Hi, Tom,
You're right, I would rather know right now.  I had to cajole the doc to agree to the 12-weeks post as it is.  So for now, it's like you, go to the beach until Thursday (my 6-week f.u...) and then April whatever.  Where are you in FL?  
I'm happy that the meds are gradually washing out.  I feel pretty good, and the pretty good I feel today is farther along than the pretty good I felt a week ago.  I can't remember what 100% is like, but I'm moving towards that.  I'm glad I did the tx, I'm glad I did my best, and boy, am I ever glad I got to the finish line this time.  Hoping for the best, for all of us.

Hello, Ambush,
It's great to see how far along you are now!  In the 40's is in the bell lap.  At that point, my corny little count-down devices - several around the house - were wonderful morale boosters.  I think I was so used to the physical sides by that time, that the primary problem/effort/etc. was mental.  Keep from scaring people, offending people needlessly, making stupid mistakes, etc.  I was a zombie... hgb less than 9, even on Procrit... but frankly the fog was a blessing; just like laughing gas with dental procedures or versed wwith biopsies...  I have a hard time remembering the particulars of what was going on.  The time passed; I just had to track what day it was and do what I had written (way ahead of time on good days) to do that day in terms of appointments, classes, meds...
You sound like you're doing pretty well, but you're probably using your positive attitude and putting a good face on things.  (As supportive as my husband is/was, he'll never know this tx from the inside.) I'm still hoping you'll be back in the saddle soon, and coming through here on your way to the Big Apple.  

I'll be holding you both in the Light.
Maj Neni

[TomWill]

You haven't only been there where I am you wrote the book on it, and because you have shared your story here it made it earsier for me.

I got up today and have had a great day. Went to the beach (we live in Florida) and tried to just have as much fun as possible. Life is short why feed on self pity. I won't go back to the doctor till Friday so not much I can do except live to the fullest for now.

We will win or die trying.

Tom

[LvdByGod]

do you by any chance have a link or an address for that article? i would love to put in my favorites and keep an eye on the development of some of those new tx possibilities........this is a very encouraging article for all of us and especially those who are non responders or relapsers. it's great to know they have so many things that they are working on... thanks ahead of time. sandi

[mikesimon]

I want to say how sorry I am that you got this news. I've been there and I know the utter disappointment that accompanies this situation. I'm hoping for something better soon for us hard to treat patients. I will echo the other sentiments and express my admiration for your great attitude. Hang in there and good luck to you. Mike

[DonL]

I'm keeping my local doctor and limiting my interactions with his PA. The Boston dr doesn't want to see me again until 48 weeks, so he is simply a background presence. I'm sending him copies of the labs, but any medication changes are going to be initiated and OK'd by my local dr.

I asked my wife if I seemed depressed or otherwise psychologically troubled. She said I seemed as good as I've ever been (perhaps a subtle dig, but I don't think so) and she didn't think I needed anything. When she tells me I need help, I'll get ADs.

[honey1616]

That is a very strange situation! Are you going to stay with him?  I have heard alot of bad luck dr stories but that does take the cake!

[Tosser]

Hi Michelle !

I switched doctors four times the past two years prior to  treatment due to conflicting information between my research and what all four doctors concluded. They didn't agree with each other so I spent a lot of time here and elsewhere doing all the research I could on my own. I felt like I was burning bridges every time I had to request my records and visit another specialist, but I just wasn't comfortable with the way things were going. Not many doctors where I live in eastern Tennessee seem to be up to speed with the Hep-C virus much less the treatments. I ended up pretty much controlling my own treatment on Pegasys and Copegus along with the assistance of my General Practitioner, who I will say was just great. He was the only doctor that actually listened to me and let me make some health care decisions based on what I had learned through my independant studies. You just have to do what you feel is right for you.
Good luck and let us know how this turns out!
...and, by the way, my story has a happy ending...still SVR 2 months post tx!

Tosser  ;o)

[Ambush]

Tom, I'm so sorry that the first time was not the charm for you....but it sounds like your attitude will bring you to the day that you will be the winner.  Keep up the good fight.
ambush

[MajNeni]

Hi, Tom,
That had to be very hard news to swallow.  We finished together; I won't hear until after the 12 week mark.  Would it be better to know sooner...?  I don't know.  I was hoping we could finish together and change the averages for 1's.  
I hope you feel well enough otherwise, and that you and your doctor find some decent options for going forward.
Maj Neni

Everyone:
TomWill's post is a good reality check.  This tx is all we have for now for getting rid of our HCV.  MOST 2/s and 3/s will get the SVR; we 1's are hoping to beat even odds.  
That said, remember that everyone who STARTS tx - even just 1 injection (I've been there 2x) - is counted in those odds.  People who don't/can't complete tx are part of that non-SVR percentage, and that's encouraging on a statistical level... but it's no guarantee, case by case.  
We all do our best to do tx to the max; we all stay as positive as possible (that helps our immune system); and that's all we can do.

[Ambush]

Cathie, Hello and welcome to the forum.  You've found a bunch of very caring, fun, and well-informed people here who will offer lots of support.  I've also learned WAY more here than from my doctor.  He writes the scripts I need, but when it comes to knowing what tx (treatment) is all about, I want to hear it from the horses mouths.  (Sorry gang, no visuals intended).  Of course, we are not doctors, so always check with your doc.  We have some Canadians on the board...hopefully they will see your post, but from what I understand, the same HCV meds are used in Canada. Have you started tx? I think it's always good to find a doctor you're comfortable with, so if it's an option, go for it and get a GI or Hepatologist who has the most experience with Hepatitis you can find.  Good Luck and let us know how it's going for you.
ambush :)

[TomWill]

For me it is better to know as soon as possible so I can attack the virus while the counts a re still low. Here is a link on a study I found.
http://www.hivandhepatitis.com/hep_c/news/2004/030304_a,html.htm

Tom

[Ambush]

Hi Majneni,  Thank you for the reminder on the slightly skewed odds on SVR. Every little 'plus' is welcome.....right when I was looking for that one little boost in positive thinking I needed!  I'm on #42 tomorrow and that EOT thinking is creeping up on me. I'm feeling pretty beat up and staying chipper is the task of the day. How are you doing?  I hope you're still feeling better all the time and reclaiming your life!  I'm so in hopes your 12wk results are the best news.
ambush :)

[cuteus]

I don't remember what your original bx result was, what stage were you?  What can anyone say about these news, but on with the fight and WE ARE HERE for you.
I am F, 52, also 1a, did not clear at 12wks, did at 24, mild damage, hard not to think that it can happen to any of us, unfortunately.
After a little pity party, then begin to plan what to do next.  Maybe two times is a charm.

The fat lady is hanging from my Mardi Gras beads in my Saturn Vue. She was the Saturn beads.  I can send her to you so you can shut her up!

best to you

[Tosser]

Hey Tom !

I too, am sorry you have gotten to this point only to have to start the battle all over again. I'm a few months post tx myself and it's always in the back of my mind that I could relapse, but just as is addressed in the article that Magnum posted, there are many new treatment options in the works and now that some of us have finished todays' standard treatment, studies show that our livers may have benefited even though we may not remain clear of the virus. That gives some extra time to wait and see what is on the medical horizon. I'm happy with that for now and I hope you will find some comfort in that too. I know all the folks here will continue to support you in your fight. We all have the same goal and are helping each other get there. Let us know how your journey goes, and I wish you the best of luck!

Tosser  ;o)

[willing]

Hey Tom, I'd like to commend you on your attitude and strength. Relapse is one of the nastiest punches the dragon can throw and you seem ready to jump right back into the fray. I'm also about two months post-tx and  all I can think about is getting past the meds (how long is detox going to take!!). A couple of options I've thought about  if I end up relapsing are :  getting the dominant strain sequenced and trying the new composite-index bx alternatives.  Knowing the sequence should help sort out likelihood of tx resistance and assessing the fibrosis stage from a blood test seems a much better way to go. I know neither of these is ready for prime-time, but if you have access to a research center they may be worth investigating.

[locojo]

Hello all
this is my first time to this board.  I am 49 yrs old geno type one 10 weeks into treatment.  I too have had thoughts of changing doctors. as I am going to a G.I. that does not specialize in hep c and just answers my questions with what the medical journals probably say not really what i ask but what he wants me to hear.  I am close to Houston and have found the name of a dr. in the medical center that specializes in hep c and was considering making an appointment .  I will probably do so  after reading these posts

thanks

[honey1616]

Hey there...Welcome...you have come to the right place for support!  So glad to have you part of this board and there is alot of 1's here also on tx.

[harley dude]

I've been having trouble with my GI since the beggining, but I was in so much shock when I found out I had HCV I was like in a daze. I just couldn't get myself to switch and go through all the hassle again and get another GI, like alot of people say, who's to say the next one won't be worst- My GI is a Jerk, In my own opinion I think alot of GI's think most of us got this through intraveneous drug use, so they start out looking down on us, and plus alot of us were heavy drinkers and not knowing we had hcv were destroying our livers, and they also look down upon that.(that's just my opinion). I needed 3 letters for work during my tx so far and he has charged me $50.00 per letter, not counting the $145.00 dc. visits- to me that is immoral and unethical, and the letters are cash because ins. won't pay for that. I know alot of people have great relationships with there GI's , but I'm willing to bet the majority of them are Jerk's. That's only my opinion--  HD

[DonL]

HD, you may be right, but my GI is a decent guy. He actually seems to care whether I clear or not. His PA is another story. Not bad, but wants to me go on ADs something fierce. I keep telling him that I'm not depressed, tho early on in tx I had some real world problems that got me down. I'm dealing with those in the real world and I'm not really down or angry about them now.

I don't see anything wrong with changing drs, tho the advice to get your records and a full month of drugs is sound.

Actually, while we are talking about drs, tell me what you guys think of this situation. My GI, a local guy, is pretty up on HCV, but I still thought I should get a second opinion. Got the name of a top guy in Boston (nearest big city) and saw him. Dr asked after the meeting did I want to start treatment. I said yes and the next thing I knew he was writing my perscriptions, taking blood and telling me that my regular GI would handle the day-to-day and he only wanted to see me at 12 weeks.

My GI was fine with it. My PA was incensed and demanded I choose which dr was primary and now will not send the Boston dr any test results, etc. I saw the Boston dr at 16 weeks, and, sitting over his desk, told him all about my tx, my sides, my 12 week tests. Frankly, he is not really interested and will simply fold my data into his studies.

In my business, when a reference takes a client, it's called stealing. I probably should have stopped the Boston dr at once, but I was kind of in shock. You guys think this behavior is strange?