ok. blood work today opinions

went to GP to get bloodwork today.  11 wks into treatment.  here are results:

WBC   2.0
LY%3.2
MO%11.6
GR%45.2
ANC .9
RBC 2.69
hgb 8.6
hct  26.2
mcv  97.4
mch  32.5
mchc  33.3
RDW  17.0
Plt  53
MPV 10.1

My GP called my hep specialists and demanded to speak with him.  He said no more riba tonight, and come see him tomorrow at 10 a.m.  

If they had given me procrit, over a month ago  when I was hovering in the 9's, this would not be happening.  

I am thinking I should go for transfusion to get me through until procrit kicks in.  Assuming they give me procrit now!!!!!

Please, please, give me advice.  What should I push for tomorrow am?  I am really feeling so bad, again.

Jean

[Trinity4]

They usually consider transfusion when hgb is around 8.  Push for Procrit which I'm sure your doctor will prescribe NOW!  Damn him, he should have done that a long time ago.
For now, dose reduction in riba until procrit kicks in.  Nobody wants a dose reduction but your doctor has forced you into crisis mode now.  
Good Luck
Trinty

[jt57]

can I not demand a transfusion vs. reduction in dosage?  I am SOOOO NOT wanting to reduce.  I have been through almost 12 weeks of this hell and do not want to do anything to jeapordize being und.!!!!!!  Yes, I am extremely upset that they did not give me procrit weeks ago.  I am going to let them know that tomorrow, as well.  But can't a transfusion by me some time until procrit kicks in, and I won't have to reduce?  

Thoughts pls!!

Jean

[Trinity4]

I don't have enough experience with hgb dropping to inform you if you can insist on a transfusion at 8.6 or not or if transfusion will get you through until Procrit kicks in.  Usually, they will reduce riba immediately when levels are as low as yours.  Hgb can drop very quickly so it needs to be monitored frequently.  What is your dosage of riba and are you at a current weight that you could sustain on a lower dosage?   I'm taking 1000 mg a day, but if my hgb started to tank I could get by with 800 a day because I weigh around 114 so there are other factors to consider.  I'm sure someone with more knowledge in this area will advise soon.  Hang in there, many ups and downs during treatment, just have to roll with it the best you can.
Trinity

[jt57]

I am 115 lbs.  taking 1000 riba daily.  Do not want to reduce!!  went from 10 mill to 3k in 4 wks, then at 8 wks, 180.    really hate to jeapordize my treatment.  

thanks for your input.  I am afraid they will want to go lower than 800, or stop completely.  I just don't know.  They told me to not take my riba tonight, but I did anyway.  unfortunately I've lost confidence in my dr.   should have started me on procrit weeks ago. and he wouldn't.

Jean

[kickboxingmom]

Just wanted to wish you luck.
God Bless,
Tammy

[jt57]

Thank you!

[dorsey15]

Hi Jean--
I'm on Pegasys/Riba ---weight 128pds..started @ 1000mg...tanked RBC @wk 4 in the 8's....doc reduced my riba to 800mg @ wk 4 (based on weight based) i'm geno 1A..
viral load starting was 16,000,000.  I cleared @ wk 3....
I stayed on 800mg till wk 34 and increased to 1000mg at that point.
At week 24 we did a Ultra Sensitive PCR <5 Viral Load test and I am still undetected....
Just my story if you are scared about going to 800mg.
Hope everything works out for you.
Dorsey

[LindaC1207]

Just want to say good luck and please be careful, I'm sure your feeling pretty badly now.  From what I've been reading and your weight being 115lbs, I think you could get by on 800 mgs of Riba at least for the time being.

Wishing you all the best!
Linda

[apache1]

Well imo there are 2 ways to look at this.
One is what what you are thinking.

The other is, with a low HGB your cells are not getting the oxygen they need to function normally. Thats why you feel so tired and probably down in the dumps.

So being weakened, your cells not able to reproduce, fight off infections and all around function like they would with normal HGB.
Going back to my biology courses, proper  HGB levels are very important for all bodily functions, including fighting off infection. Not to mention it is a strain on your cardio vascular system. This is a delicate balance that has to be weighed out by someone knowing a lot more than me or you, imho.

So even though your med serum levels are normal, the body, being weakened from low HGB/oxygen, possibly can't utilize the meds as well.

I would not disregard my doctors orders, without a new doctors orders. We should not self medicate.

Hey I could be all wrong, just the other side of the coin to think about.

apache1

[nygirl7]

You definitely need to talk to them sternly.  Even now I wouldn't drop my riba but that's me - I was VERY stubborn about it all and talked my doc into giving me the procrit. But you are getting dangerously low here and they should give you a transfusion and the epo.  I don't understand some of these doctors I really really just don't.  Neither of the docs will do it? Can the PCP talk to your GI?

If they don't I would find a hemotologist ASAP - someone who would give you the procrit.  Like you I wouldn't drop mine because I was just too worried it would have a great affect. So I suffered. It was worth it in the end but I remember the feeling and I'm so sorry for you - be careful on stairs and driving and things like that.  I kept fainting dead away and I never knew it actually hurt inside your head before you did!

So please.........do what you have to do to get those meds. I too think you probably could have gotten by at 800 for your weight but I didn't do it either and I pushed for more. It's one of the trade offs - anemia and high riba or easy ride and low.  Either way there isn't guarantee but for us stubborn girls........it's kind of like we had no choice anyway!

Good luck Jean!!!!!!!!!!!

[jt57]

Just got back the dr.  That was really an experience.  As usual, I saw the NP, not the Dr.  He was in the hospital.  but had left instructions to "stop my treatment"........

CAN YOU BELIEVE THAT???  His reasoning was my PLATELETS...very concerned about them dropping the way they have so fast.....so stop treatment altogether.  You can imagine how I took that news....My fiance was even asked to leave the room...he went ballistic.  They have been assuring me over the weeks, when my GP was so concerned about my platalets, that I did not need to be concerned until they reached 30.  I am now at 53 and they want to stop everything?   I really strongly stated my case.  The NP went over to the hospital and talked to the Dr.  I informed the NP that under no circumstances was I going to stop, even if I had to go to another Dr.  I did not see any reason for stopping , at this point.  We then had a very strong discussion about why I was not put on procrit over a month ago, when I asked for it.  Then I would not be where I am today.  The Dr. stood his groung with stopping treatment, but had the NP so more blood work, including some more detailed platalet testing and "smears" (not sure what all that was about) and told him to be sure to tell me that if I wanted a second opinion.  To be sure and get one.

The NP and I then had a long talk.  It appears that they have been offened that my GP has been monitoring me so closely, and at times I guess they felt she was second guessing them.  The NP suggested she take over my treatment.    HELLO

Oh yeah, and I am not stopping my meds.  

I am so upset.  

Jean  

[alagirl]

You CAN get a transfusion if your hgb goes to right below 8.  And frankly, it may BE that low if you got the bloodwork done a few days ago and are just now getting the results.  Go to the ER and tell them you feel tired and weak and that you feel your hgb might be below 8.  If it is, they CANNOT release you without a transfusion.  In the meantime, ask for a referral to a hematologist.  When that happens, they manage your anemia separately in order to keep your blood count up and it is MUCH easier to get adequate procrit, transfusions, etc out of them.  Plus, with them managing you, the hep doctors kind of back off trying to manage that part of your care sometimes, in the assumption that the hematologist is handling it, so you don't get the same calls for reduced riba.  I would go to the ER AND ask your doc for an emergency referral to a hematologist.

[alagirl]

I went through tx with hemaglobins as low as 6.75.  Successfully.  And I had microbiology done that showed my body was producing a lot of the cells that showed my body was fighting infection.  Also, a low hemaglobin SHOWS the strength of the riba being absorbed in your system as you wouldn't be that anemic if the riba wasn't working in your body.

It won't do any harm, in my opinion, to avoid reducing the riba for a couple of days until seeing a specialist if someone utilizes the ER or other resources to make sure their hgb isn't going to be critical.

That said, some people, like Jim I believe, have had to go off the tx meds briefly and have still reached SVR.

[nygirl7]

Start calling around right now and find a new GI - even if it's not a hep specialist.  Explain why you need to make an emergency appt and ask some questions if you can of the NP ie: Procrit issue.

Mine dropped from 15+ to only 9 in TEN daysn six full points - talk about drastically fast and my doc did NOT stop my treatment. I started on 40,000 epo once a week and stayed at 9 but didn't go up so he upped me to 40 twice a week and then it did rush upwards.

IF your stupid doctor had done this a month ago you wouldn't be in this shape now. Man oh man........can you ask your GP if he knows of someone who might help you aside from these people?

I'm SO sorry.  This shouldn't happen but unfortunately some of the egotistical monsters that call themselves doctors just won't listen - if it was like this for everyone why have SO many of us been on procrit and made it through 72 weeks of treatment when at first we were right down where you are! OH I'M SO MAD!!!!!

Call for a hemo doc and a GI fast.  Don't stop.  Even if you hve to travel a little bit!

[alagirl]

You might also call the doctor and tell him that if he stops tx you will sue due to them not using procrit in a timely manner.  Tell him he needs to utilize transfusions and procrit and get you to a hematologist in order to be responsible in this situation.  Interferon is not a friendly drug and to use it four 12 weeks for NO REASON is ridiculous.

[alagirl]

Tell them that you have friends with hcv and their doctors have done xyz to manage them in this situation.  I did that a lot with my doctors using info from the tx of others in this group.

[jt57]

I have called for a hematologist referral.  I also called my GP's nurse and they are going to see about writing orders for me a transfusion.  If not, I will take alagirls' advice and go to er.

Can't believe they are using the platelet drop as an excuse to drop.  I am at 53!!!  He said he did not understand the drop unless I have cirrosis (cirrhosis), which the biopsy did not show any.  I have been battling mono as well.  That drops platelets!  

The NP said he wanted me to be sure and come back in to see them next week, or he will be calling the pharmacy to cancel my prescriptions.   What to do???????//////

Getting the referral to hematologists, but can't get in until Monday.  Have to find a GI or hepatologists........
oh yeah, and I stopped by and got a 90 days supply of my interferon and riba today.  just in case he cancels the scripts!!!  Just need someone to monitor me and cover the last 5 months of meds......

The tears are drying up....now I am getting pissed.

Jean

[alagirl]

well that gives you three months to find a new gp or hepatologist.  And you'll have a referral over to the hematologist to cover your anemia during that time, but I would get on the horn and find a new doctor now.  One without such an evil nurse prac.

[jt57]

I did confront the NP on not giving me the procrit when I asked for it.  He said "we go by the standard guidelines, and the guidelines state, no procrit until below 9".  Well, I started at 14.5   and went down into the 9's and hovered until now.  I would think, since this treatment hits everyone differently, that you have to look at where you started.  I did not start on the low end of the hgb, but rather the high!!!  I have had quite a drop.  and for the platelets, I started at 251, down to 150 and stayed there awhile, then started dropping around week 4 to 120 for a couple of weeks, then it started down, 98, 92, 80, 79, 78, 66, 53.    Does all this sound way out of wack?

So, anyway, I don't think threatening my NP with a lawsuit will do any good, if in fact he is staying within the medical guidelines for treatment.....

Jean

[Trinity4]

Just got back the dr.  That was really an experience.  As usual, I saw the NP, not the Dr.  He was in the hospital.  but had left instructions to "stop my treatment"........

CAN YOU BELIEVE THAT???  His reasoning was my PLATELETS...very concerned about them dropping the way they have so fast.....

Good hep doc will not stop treatment because platelets reach 53.  You're hgb could have been addressed long ago and it would not be an issue right now.  I took a two dose reductions because of low ANC & Platelets.  New hep doc said that may have costed me UND by 12 wks because my platelets were 60 & 70 respectively when I was told to reduce.  You're doc's a jerk -  seek out a hemo guy ASAP and a new hep guy.  You got to act quickly, you don't want to run out of medication.  Good luck jt -  sorry you are going through this.
Trinity
Trinity

[jt57]

thanks all!!

Just spoke with my GP.  She is calling now and referring me to the hemo dr.  Will see him at 2:30 on Monday.  She is also calling and refering me to a new GI dr. but I am seeking a hep guy.  

Oh and by the way, I stopped by the pharmacy on the way home.  got myself another 90 day supply of everything.  And I have 4 wks in the frig.  So I am ok on meds for awhile.

Thanks for everything!  This has really been emotional for me.

[jmjm530]

If at all possible try and get an appointment with a liver specialist (hepatoloigst) Monday. Regardless of what the appointment secretary says, they will sometimes squeeze you in if there's an emergency or near-emergency regarding treatment. If the appointment sec won't, ask to speak to the doc's nurse or the doc himself. If that doesn't work, ask for his email or fax number and compose a *short* letter outlining the salient points and why you need to see the doc right away. The idea is to get something in front of the doc directly and not get intercepted by the maginot line of secretaries, etc.

For those in similar situations, this should be a wake up call to take action and be more proactive with your own treatment. If you think there's a possiblity that your doc will pull or reduce meds unecessarily, then now is the time to shop around for another doc. In general, hepatologists (liver specialists) are much more knowlegeable and therefore more agressive with treatment and are far less likely to unecessarily pull or reduce meds. Do not wait until it's too late.

-- Jim

[jmjm530]

Our last posts crossed, but you are right to push for a hepatologist and not another GI. There's a good possiblity that another GI will simply agree with your current doctor. I'd be forceful on that one. Good luck!

[jt57]

I did have a hep dr. !  One I thought was the best!!  I sought him out because I wanted to be in the study trial. Dr. Mark Russo, with the Liver Transplant Center here in Charlotte.  I did not make the study trial because of my elevated thyroid levels and my uric acid was slightly elevated.  I was disqualified.  I am in total SHOCK that Dr.Russo is doing this.  But then again, I think he is more involved in research than everyday soc treatment of hepatitis patients.  I have not seen him since I was being screened for the study trial.  back in May...always see the NP.  I think Dr. Russo is a great doc., but only if you are in a study trial.

Any one have any leads on a good hep doc in the Charlotte area?

Thanks Jim!

[nygirl7]

A GI guy can be JUST FINE as long as he has experience dealing with heppers - just get in to see somebody soon!  Someone with experience who reads up on the current info will know that almost every other hep doc in the world says procrit under TEN not NINE and so do insurance companies!!!!!!!!!

oh yeah, and I stopped by and got a 90 days supply of my interferon and riba today.

YAY GOOD FOR YOU - perfect! Now you get that hemo doc and the procrit cause it's gonna take a couple of weeks to get kicking in.

You are doing all the right things here!

[nygirl7]

You aren't in that big a rush (except for the procrit) right now so make SURE this doc has all the things you want and you don't have to do this again!

My GI was fabulous - with the help of the forum I had a great course of 72 weeks, he didn't know everything but was willing to learn all the new stuff and to read the studies and journals. Just make sure whatever you do that your new doc is doing that (and willing to give procrit of course ;)

[jt57]

I would LOVE to send a copy of this thread to my dr. and his NP.  

I have to say, this forum has really educated me on my own treatment, and, like I told him today, I HAVE HEP C, YOU DON'T.  So don't expect me to sit back and not do my own homework when it involves my life!!  For the first time since I have been going to him.  He actually shut up and stopped saying, "well, that isn't soc, this isn't soc, we go by guidelines., etc.etc.....

I looked him dead in the eye and said, I will not stop treatment at this point.  I do not find it medically necessary, and if I have to go to another dr., I will.

That is when he told me that if I wasn't coming back, he was going to cancel my prescriptions....what a jerk!!!!!!  and I got them filled anyway.....

[jt57]

Test results for the immune platelet thing he was trying to say I had, and therefore the reason to stop treatment because my platelets are dropping, came back today.

ALL FOUR WERE NEGATIVE!!!!!!  I knew they would be.  But my dr. would not listen.  Glad I did not stop treating like he told me to!!!!

Will know my wk 12 viral load results tomorrow.......

Jean