Dropped my Riba again, getting frusterated here

OK I have been close to or in tears most of the day I know that a good part of it is the stuff I have been dealing with.  But also My clinical coordinator called again today and my HGB didn't move from the 9.7 it was last week.  she had dropped it last week to 800 and today she cays to drop it to 600.  They won't do a pcr till 12 weeks and I am so upset about all of it.  I even asked her to talk to the doc about my cooncerns about not becomming SVR due to them dropping the riba.  I am on 40,000 of Procrit and asked her to ask him about upping that instead of lowering the riba.  she called back and said he said no about it all and to drop the riba he is worried about me ending up with heart probs? I have not heard of that with the anemia.  I was in tears about all this I am afraid of doing this TX for naught.  I mean I am wondering if I am making myself sick (TX) for nothing.  I mean if I can't clear the virus because my doc won't be a little more agressive in fighting this chit then I will have spent that 12 weeks  being this sick all for nothing. I know I probably am just whining. and I am. but grrrrrrrrrr I am getting ready to do the dreaded shot right now and I am so upset I am having a hard time even wanting to do it.

[GrandOak]

I would demand to talk with the doctor directly or request a referal to another doc if that is required.  I would want to know upon what basis is he concerned about heart problems along with the other very valid questions you have asked.  To heck with any coordinator or other such intermediary, it sounds like you need to talk with him directly.  You are paying the bill and his wages I might add,  if he refuses to provide adaquate consultation, I would check with insurance to see what course of action is besides consulting an attorney.

Drop the mention of legal council, and it's often amazing how quickly the phone changes hands.

I've learned that cutting Riba below recommended weight-based dosage in the first 12 wks is considered an absolute NO by most docs who know anything about this disease.  If I might ask, what type of doctor is treating you anyhow?

[painterlady13]

Grand,
The Doc I am seeing is a liver and Hep C specialist who is running one of the Dosage based trials in the pittsburgh area.  I didn't qualify for the trial because of DX time. I am so limited in my area because there is no hep doc here and I am stuck going 4 hrs away to deal with this.  I feel stuck in this situation with him lowering it and yet I know from everything I have read here and at other sites that by lowering my riba that far I run the risk (even more so) of not becomming SVR.

[DougV]

I'm not sure if I should type what I'm about to, but I'm gonna.

First 9.7 is low, yeah, but not critically so.  I spent most of treatment hovering around 7.0.  Yes at that low of level there is heart risk, however as my BP has always been perfect and my O2 count remained normal my doc tolerated it.  Didn't like it but did tolerate it.  However eventually I did see a hemotologist and explained to her what I wanted and why.  She agreed to do whatever was necessary to keep me going and to keep my HGB at or above 7.0.  I see you have to go a long way for your GI, but perhaps there is a hemotologist you could see closer and maybe you could talk her into working with your GI to get you through.

How long have you been on Procrit at the 40,000IU level?  It does not work in days or hours but can take weeks or even a couple month to make an appreciable difference.  (Gotta warn you it only works for slightly less the half the people.)

Now here is the part I'm unsure if I should type.  My doc wanted me to lower, I refused at first but I was trying to lose weight and eventually lost enough to lower dosage and maintain the same mg/kg ratio.  However the doc never altered the prescription so I kept getting the same amount from the pharmacy.  After transfusion number 2 he wanted me again to lower, well I didn't.  Luckly by then I was on 60,000IU Procrit and my HGB and RBC became stable and even began to rise.  (I was so excited when it started to rise 0.4 weekly and by treatment end I was all the way up to a massive 8.8 HGB.

Now far be it from me to make any suggestion about medical care and never ever would I even remotely suggest someone not follow doctors EXACT orders.  But I will state the patient IMO has the right to take what risk he or she is willing to in order to fight a potentially fatal disease.  So if a patient say got weekly labs (I did) and that patient still kept getting the same prescription, and if that patient happened to accidentally keep taking the same dosage, and HGB stayed above 7.0 and that patient was careful to avoid stress and things that would put a stress on the heart, well speaking only personally I would not blame the patient.

Just a thought.

Doug

[cuteus]

as mentioned by your dr, there is a risk of cardiac events with chronic anemia, it is in the literature.  If you are on 40,000 of procrit a week, maybe you can take it every 4 days instead? I found that I could not wait longer than 7-10 days for my next shot,once I got the anemia stabled.  You can experiment with the time span. If you are taking the procrit every two wks, that is not enough! see if you can take the next two shots before the seven days are up, if on weekly dosage.  I think that lowering my riba two months into tx, kept me from clearing at wk 12, so I ended up going longer due to that fact.  You are right in been P O'd, all  this discomfort of tx, only to get jeopardized by the dr's fear to act.

[GrandOak]

Sorry to hear your options are so limited.  At least it sounds like you have a doc who should be more knowledgable in HCV than my first was, she was an Infectious Disease doc who didn't seem to know squat beyond what most of us who have been battling, or battled, the dragon would probably consider common knowledge.

As for Hgb, mine has been in the 9's (9.8 done to 9.0) for several weeks now and I've been on Procrit for 5 months now with increasing dosages as we tried to get my Riba back to full dosage after first doc simply cut it from 1200 to 600 after only 4 wks of tx. During this time my VL went from 1.8 mil at wk 12 to 2.9 mil at wk 24.  Not that this will happen to you, but more to explain my passion about maintaining Riba at recommended dosage as possible during begining of tx as most docs who are very knowledgable in HCV tx advocate is crucial so long as it does not put the patient at too high a risk.

My last Procrit increase was to 100,000 U about 3 wks ago (they wanted 110,000 U but specialty monitoring clinic thought that might be harder for me to self administer).  But Hgb had still dropped to 9.3 on Tuesdays labs which is why the concern about Procrit still working and additional labs done on Thursday.  Fortunately, Thursday's labs should Hgb had jumped up to 10, which helped alleviate for me to some degree that Procrit was working and kidneys being able to still produce red cells.

The nurse of my first doc was a real air-head and shielded my from doc like some keeper of the citadel.  For example, one week she tells me lab results were not in, the next week she tells me lab results were mailed 2 weeks ago.  I caught her several times telling me doc said, but when I did talk to doc during next follow-up found out doc didn't say diddly near what nurse told me.  Of course nurse denied that she told me what she did.  I was about ready to start recording calls to prove it when doc fessed-up that my case was more becoming too complicated for her and she wanted to throw in the towel on me.  Of course, I wasn't about to let that happen as towel is my life, so switch to current doc occurred.

Sorry to be so verbose, but I wanted to convey that I know what your going through, your concerns, and why I'm so adamant on coversing directly with doc.

[painterlady13]

As I was sitting here reading Grand's last entry I remembered that 2 weeks ago the Health Administrator set me up with a Case management specialist to help me.  At the time she didn't think she could help me any more than I have already helped myself.  She couldn't believe how knowledgeable about my disease and it's treatment I am.  I think that Tuesday I might just call her and ask some questions about her knowledge of TX and whether she might be able to help me find a more agressive doc.  I don't want to hurt myself but if I can stay in the 9 range then I think it might be worth a try.  Thank you