HMG QUESTION

[miracle05]

HI EVERYONE AND THANKS FOR BEING HERE-

MY QUESTION IS HOW LOW CAN YOUR HMG GO BEFORE IT BECOMES DANGEROUS --THANKS :]

[GSDgirl]

I went down to 9.3 and didn't pass out but my legs got really wobbly and I could hardly walk.  Nice little trip to the er where the put 2 bags of fluids into me and sent me home.  I hope you feel better soon.

Denise

[newleaf09]

Which trial are you in?  I'm in boceprevir and they treat us below or near 10 with procrit.  I heard that the teleprevir trial did not want any other drugs used so they could get a cleaner data set.  Which one?

[miracle05]

ILL CALL FIRST THING TOMORROW AND ASK AGAIN BUT THEY SAID TODAY THEY WANT TO WAIT FOR THE NEXT BLOOD DRAW IN 2 WEEKS BECAUSE I DROP SLOWLY I WAS 9.6 2 WEEKS AGO NOW 9.3

I KNOW IM AT A RISKY PLACE I CAN FEEL IT AND HAVE BEEN IN THE TENS FOR MONTHS NOW AND ITS GETTING SCARY

THEY SAY PROCRIT HAS A BLACK LABEL WARNING AND THEY ONLY USE IT WHEN ABSOLUTELY NECCESARY ---THE TRIAL DOES PROVIDE IT  

THEY KNOW I DONT HAVE TO WORK AND MY SON IS TAKING CARE OF THE FARM --MAYBE THATS WHY---IT WOULD BE NICE TO BE ABLE TO AT VERY LEAST WALK FROM POINT A TO B WITHOUT BEING SCARED OF FALLING OVER LOL

ILL LET YOU ALL KNOW HOW IT GOES TOMORROW AND I WANT ALL OF YOU TO KNOW HOW MUCH I APPRECIATE ALL THE HELP !!!

I DIDNT KNOW MUCH ABOUT THE TREATMENT OTHER THAN I NEEDED IT ---THEY DIDNT PREPARE ME AT ALL --ALL I HAD WAS MY CONSENT FORM ---IT WASNT TILL I GOOGLED MOUTH SORES I FOUND THIS SITE --THANK GOD

THEY TOLD ME TO STAY OFF THE INTERNET BUT I REALLY DONT CARE ANYMORE !!!!!!!!!!!!  

[GreatBird]

I just went to the Procrit website and see there's a new warning as of April 2009. Maybe your trial doctor and nurse are referring to it? I must say, it makes me uneasy to read while being on Procrit (which we know I don't like--although the lower dose for me is much more manageable as far as I can tell). Anyway, here it is:

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SUBJECT:  Reports of antibody-mediated pure red cell aplasia and transfusion-dependent anemia in patients with Hepatitis C virus (HCV) infection treated with ribavirin and interferon or pegylated interferon and an erythropoiesis-stimulating agent (ESA) concurrently


April 8, 2009  

Dear Health Care Professional,  

The purpose of this communication is to inform you of an important safety observation of spontaneous reports of antibody-mediated pure red cell aplasia (PRCA) and transfusion-dependent anemia in patients with HCV infection who receive treatment with ribavirin and interferon or pegylated interferon (RBV/IFN) and an erythropoiesis-stimulating agent concurrently.  This observation was detected during Amgen and
Centocor Ortho Biotech Products, L.P. post-marketing safety surveillance for the ESAs EPOGEN®  (Epoetin alfa), PROCRIT® (Epoetin alfa), and Aranesp® (darbepoetin alfa).  PRCA is an already recognized risk in the approved indications for ESAs and is characterized in the current labeling.  

Importantly, ESAs are not approved for the treatment of anemia associated with the use of RBV/IFN in patients with HCV infection.  ESAs are approved by the US Food and Drug Administration (FDA) for the treatment of anemia to reduce red blood cell transfusions in certain types of patientsi.  SEE ENDNOTE FOR THE FULL INDICATION STATEMENTS FOR EPOGEN®/PROCRIT® AND ARANESP®.  

PRCA results in transfusion-dependent anemia.  Any patient who develops a sudden loss of response to an ESA accompanied by severe anemia should be evaluated for the etiology of loss of effect, including the presence of binding and neutralizing antibody to erythropoietin.  If anti-erythropoietin antibody-mediated anemia is suspected, ESA therapy should be withheld.  In patients with antibody-mediated
anemia, ESA treatment should be permanently discontinued.  Patients should not be switched to other ESAs as antibodies may cross-react.  

• For EPOGEN® and Aranesp®, contact Amgen (1-800-77AMGEN) to perform assays for binding and neutralizing antibodies.  
• For PROCRIT®, contact Centocor Ortho Biotech Products, L.P. (1-888-2ASK OBI).

For more information, please see the US Package Inserts for PROCRIT®, EPOGEN®, and Aranesp®, including WARNINGS, Pure Red Cell Aplasia.  Copies of the Medication Guide, Patient Instructions for Use for EPOGEN®, PROCRIT® and Aranesp® and revised prescribing information are enclosed and available on the Amgen Inc. website at www.amgen.com and the Centocor Ortho Biotech Products, L.P. website at www.orthobiotech.com.  

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website: http://www.procrit.com/procrit/impor_safe.html

[jdwithhcv]

It is already dangerous at 9.3.  When you get to 8, expect to have trouble with concentration and vision,  lower than that you will probably be on the floor.  I was hospitalized at 7.6, and received a transfusion.

I'm not sure why your trial folks don't like procrit, but you need it NOW.  If any one of them was suffering from hemolytic anemia and had hgb of 9.3 they would be screaming for relief.  Don't let them reduce your riba again.  Demand procrit immediately, while you can still dial a phone.  No kidding, you are in a very risky place already and if it drops further you can have serious problems.  Hypoxia can kill you.

Don't wait - get procrit now.  If the study won't prescribe it, go to your personal physician.
Good luck.  Let us know what happens.

jd

[miracle05]

PS. IM NOW AT 9.3

[miracle05]

IVE BEEN BEGGING FOR 2 MONTHS !!!!! WHEN I HIT 10.1-- I THOUGHT SHE WOULD --THEY LOWER MY RIBA DOSE AT 10.3 WEEKS AGO  AND YESTERDAY THE CORDINATOR SAID THEY COULD REDUCE RIBA AGAIN ---THESE TRIAL PEOPLE DONT LIKE PROCRIT AT ALL ---THERE IS A POSSIBILITY I COULD BE STOPPED AT WEEK 28 ---SHE TOLD ME THEY WOULD NOT KNOW UNTIL THE DAY OF MY APPT WHETHER I WOULD BE STOPPING OR NOT ---MAYBE THEY DO KNOW AND THERE JUST TRYING TO GET ME THROUGH THE NEXT 2 WEEKS ---DO YOU KNOW THE NUMBER OF WHEN IT BECOMES DANGEROUS LIKE PASSING OUT AND SUCH?? THANKS AMY

[newleaf09]

When you read all the side effects for drugs (love the erectile dysfunction pill warnings on TV) of course they are frightening.  Her personal fears got nothing to do with you.  If you are below 10, you need the procrit.  It's stupid to reduce your riba when you can keep hgb up with a few injections of procrit.  Studies show that it's more important to keep the riba at full dose than the interferon.  I hate to recommend being a pest but you should be all over the nurse about starting the procrit and getting back to full riba.  Even then, the procrit takes about 3 weeks of once-a week shots to bring it up.  The sooner you start the better.  Be a pest!

[miracle05]

THANK YOU --IM IN A STUDY ALSO AND THEY DO ALLOW THE RESCUE DRUGS --

IM ON WEEK 26 AND HAVE BEEN HOLDING AROUND 10-10.4 THERE GUIDELINE IS BELOW 10 WHICH I HAVE BEEN NOW FOR A MONTH---THEY REDUCED RIBA BUT I STILL HAVE BEEN DROPPING SLOWLY---MY TRIAL NURSE DOES NOT LIKE PROCRIT AT ALL UNLESS ABSOLUTELY NECCESARY AND I JUST DIDNT KNOW WHEN IT WOULD BECOME A NECCESSITY --WHATS THE NUMBER ? LOL SHE COULDNT ANSWER ME !!

I HAVE READ THE POSTS ABOUT PEOPLE PASSING OUT AND SUCH AND I FEEL IM GETTING CLOSE TO THAT --THERE IS NO MORE BENDING OVER IN MY LIFE LOL-- I GUESS IM JUST SCARED  

[newleaf09]

I'm in a study and they have certain lines, that when crossed, require dose reduction or rescue drugs.  Platelets is 50,000, Neutrophils is below 1 (means 1000) and hemoglobin is below 10.

Bleeding is not related to low hemoglobin, it's related to low platelets or poor clotting from liver damage (liver makes clotting factors).

Hemoglobin's job is to carry oxygen around to all the cells; that's why you feel so tired and out of breath when it is low. When it gets really low (see other posts) you start passing out and scaring everyone.

Ribivirin destroys hemoglobin, interferon destroys platelets and neutrophils.  Just an unfortunate part of treatment.  A lot of people's blood eventually gets acclimated to the drugs and stops crashing.  These factors need to be watched in the first several months but really, if you can get insurance to pick up the costs of the rescue drugs it's much better to use them than reduce the dose.  Most of us have used the procrit with no ill effects.

[miracle05]

THANK  YOU --I KEEP HOLDING PRETTY STEADY BUT AM DROPPING A LITTLE MORE EVERY 2 WEEKS --IM NOW AT 9.3 AND I ASKED THEM THIS QUESTION AND THEY SAID THEY WOULD WAIT FOR THE NEXT BLLOD DRAW ---THEY DIDNT GIVE ME AN ANSWER OTHER THEN PROCRIT WAS A BAD DRUG

THANK YOU AGAIN IM STARTING TO GET REALLY WORRIED THE WAY I FEEL  

[skersj]

I am not a doctor but I think it would depend on the over all health of the person. My doctor calls me "critical" when I am in the 7's & low 8's. I know I really bleed bad after a blood draw when it is that low also. The bandage really gets soaked; not just a spot. But now I am on Procrit and things are better --  not great -- but better. My HGB hovers in the mid 9's and then drops suddenly then comes back up. I have no idea why.