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Thinking about going back to riba once a week, instead of just stopping

Nov 01, 2008 - 11 comments
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At week 5 I was UND and taking 1000mg riba only once a week along with injection.
or maybe 4 out of 7 days.
Taking it daily does not agree with me and feel like I am ready to flip out.
I am also anemic. I was 9.1 hemoglobin and my normal was 15.5.
My doc said that they don't usally see as bad sx as I am getting at 9.1 on the average. 9.1 is close to just half of my normal. I figure half of someones normal no matter what is a shock to your system.
I have considered stopping tx, because the riba is hitting me so bad and really don't.
I don't really trust all the values my dr  uses as thresholds for treating all her patients. I know she is going on best info available to her, but she seems very inflexible in her views, she is the one that refuses to send me or give me hard copies of my labs.

I don't want to quit, but I don't want to freak out from this tx either.

What do you think?
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Avatar universal
by Trinity4, Nov 01, 2008
Find another medical team before giving up treatment.  From what you've posted, doesn't seem like they are staying on top of your sx or treatment needs.  Riba is an essential part of treatment.  Perhaps SVR is possible with only taking riba 4 out of 7 days but I can't see how.  You should be on procrit as well.  My 2 cents, find another team.
Good Luck
Trinity

Avatar universal
by meNtoby, Nov 01, 2008
Bill, seriously, you may be so fatigued and brain fogged that you can't advocate for yourself as well as possible.  Your girlfriend knows about your condition, and being in the medical field herself, may be able to better communicate your extreme state right now to your medical team.  They sometimes can blow off the patient, but seldom get away with it when you have extra support, and someone who is not so easily worn down like a chemo patient.

I agree with Trinity that you should change doctors, it seems you have had nothing but problems with this team!  Until that can be arranged smoothly though, my best idea is to have Carol help you - be your voice, in other words. She won't take any c rap, and has the energy to be forceful.  Just a thought buddy.  She might be able to also help you decide if you SHOULD stop this round of tx and regroup.  

Since you only took riba once a week for the first many weeks, you may have seriously compromised your ability to SVR on this round, and you don't want to build up an immunity.  I have no idea what your odds are now, and am not sure anyone could venture a guess based on a lack of history.  Being UND at 5 weeks was pretty awesome though, considering the riba was hardly present.  Just don't know the equation you need to reach SVR now.  You need a more receptive medical team, with better communication and overall care for you for sure though.

Please find someone trustworthy to help you deal with your doctors now, so that you know the best way to proceed from here.  There is absolutely no reason to be left hanging out to dry like this.  If you get worse, or even right now, you might consider just going to the emergency room.  You need some reassurance that you are doing alright either way!

Praying for you headshop, and please consider the ER.  That may be your best course to change the holding pattern that you're in right now which is sooo very horrid!!!  

cathy

Avatar universal
by Deb_c430, Nov 02, 2008
good advice, his soc is so weird to me,  I don't get it. he needs a new Doc

461838 tn?1255790216
by headshop, Nov 02, 2008
I have looked on the internet recently for a different Doc, closest I have is in Burlington and Winston Salem North Carolina.. All about 45 minutes to an hour away. The one in Burlington got good reviews. I don't have their name available.

My only concern about changing doctors is how much time it will set me back in tx.

I have noticed that others on the internet including this site have a lot more contact with their nurses and their nurses take a more active role in their tx.

My nurse takes my vitals and blood and gives me messages or orders from my Dr. she doesn't get involved anyother way. Does not take any active role and doesn't offer anything in the way of help otherwise. She actually has forgotten to schedule bloodwork a couple times.

Carol is an active tech with the Dr she works for, she makes a lot of decisions on her own and seems to be very active in helping pactients and contacting them.

I see a big problem with the nurse really just being a messenger, but I don't see that mine is the sharpest knife in the drawer if you know what I mean.

Avatar universal
by meNtoby, Nov 02, 2008
Set you back?  I think your current situation is going pretty far South, but yeah, you'd have to have one lined up first.  I still think you should have Carol call your doctor's office re: copies of labs, standard of care, anemia, ALL your problems...  And you don't have to have a hepatologist that is listed in Who's Who necessarily, do you?  You could trot over to just about anybody right now and get a second opinion. Hell right about now I'd settle for one of the kids off of "Are you Smarter than a Fifth Grader"   Good luck, and God Bless!

cathy

408795 tn?1324935675
by fretboard, Nov 02, 2008
Maybe you can explain that tx is totally individualistic and that's something that she needs to be willing to look at and treat you accordingly.  If she can't write you a procrit prescription that just puts you in a terrible position.  Already you have lowered your Riba and now you're thinking of kicking it totally to the curb.  Can you talk to your PCP and get something from him?  Tx from a PCP and being given copies of your bloods would be better than what you have now.  I don't see how it would set you back to get a new doctor.  Your nurse sounds exactly like my GI's nurse, glad I didn't start with them.  It could be that you can't tolerate tx at all, but if you can't you deserve to hear a full explanation of why not.  Verbally tear that HepC doctor a new one b/c at this point you have nothing to lose.  

"I don't really trust all the values my dr  uses as thresholds for treating all her patients. I know she is going on best info available to her, but she seems very inflexible in her views, she is the one that refuses to send me or give me hard copies of my labs".

This is not a good place to be in in your relationship with your doctor who is basically supposed to be extending your life or at least helping you to reach SVR.  Find someone new or verbally blow her hair back.
Also, if I had a doctor who refused to give me copies of my bloods I would have stopped right there.  You can call your insurance company and ask.  I had a problem, one time with my PCP not writing me a prescription quick enough.  I called my insurance and picked up the prescription the next morning.  Sometimes it takes lighting a fire under their assses.  You could also be in a situation like the one I was in, my GI didn't like txing recovering addicts, glad I didn't start with them.  Maybe you are just too nice of a guy, don't lose out dude!!  This is far too important and you don't want to tx again.  Good luck and God Bless



461838 tn?1255790216
by headshop, Nov 02, 2008
All good stuff to consider and pursue.
Actually Carol wants me to come to Va and get treated where she can have her hands on.  Yes I really think that some of the inflexibility, not thinking beyond their average of how other clients reacted to tx sx is a major factor to this lack of acceptable care.

Healthcare is two words,    Health and care, wheres the caring.

Peace and Health

Avatar universal
by 122 Tactical Fighter Group, Nov 02, 2008
Well - - its certainly your call - but I dont see how anyone could stop treatment....I was in the clinical trial at Mayo ... 5 million units interferon every other day and riba daily.......that was in '96......I have been UND since then at each PCR......wouldnt have it any other way -    Except to miss the experience all the way...........................good luck to you...stay strong!!

388154 tn?1306361691
by comeagain, Nov 02, 2008
Is everything odd happening to just you ?

You forgot to take riba every day just took it once a week  its  just a little to much and your a civil engineer how did you
managed that ,  and then your doc is gonna let you go on riba four times a week totally new and never heard of aproach, and your hgb went down to half with just riba once a week, and the story about your internet crush who was gonna take you to her family and children without even have meet you once.

Very peculiar in my point of view

ca

461838 tn?1255790216
by headshop, Nov 02, 2008
I don't want to quit. I figured my spiritual fitness and fellowship in AA and NA would get me through these times. I guess they have so far, didn't think I would get to the point physically and emotionally that I am at now.
My thinking, emotions, nerves were shot. I feel a little better now, got some uinterrupted sleep this weekend.about 3 and then some hourly sleeps, you know gotta get up and use the bathroom.

They faxed me my labwork when I first started then. They had some turnover. My main Dr. left the company and my nurse was replaced. Thats when I had to do a release to get the info faxed to me.
Thats when the problems started to increase to where they are now. That was around tx week 5 or 6. I just had tx week 14.

Peace and Health



Avatar universal
by Deb_c430, Nov 02, 2008
I agree Ca,  this is all strange to me,  A lot of us are very anemic, I am just not getting this at all, you do need a new team, as a civil enginer you should have good insurance

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