HGB another crash

Oh geesh, RN just called, my HGB from last friday is now down to 9.2.  She wants me to lower my riba to 800,  from 1000, I weigh 106 lbs,

I am already  on  60k  of procrit, told her to ask  for another 20, bring it up to 80.

This is crazy!

[FlGuy]

Tough decision.  You recently wrote that you are on Infergen and going 72 weeks? If it's your intention to go the distance (not sure how many weeks you have in) battling hgb for a long haul like that, even with the procrit you're on, is going to be a long haul.  At 106 pounds, 800 is still a pretty healthy (if you can it that) dose of riba at 16mg per kg. What do you and the doc think is more important; going a year and a half or nuking it for a shorter time.  If the anser is both, maybe gearing back the riba a bit is an answer.

[jmjm530]

80 probably won't make any difference, as the effectiveness of Procrit seems to max out at 60.

Did they do any iron store tests -- specifically Ferritin and TSAT? Sometimes iron stores get reduced with epo and if so, the epo will stop being effective. The remedy is supplemental iron, but only if iron stores are low.

Assuming your iron stores are OK, I tend to agree with FLGuy, above. Tx is a marathon and you're on an ultramarathon with 72 weeks. Given that you're maxed out on the epo, reducing the riba would be the next logical step to protect your treatment so far and to help you go the distance. I'm also assuming you feel like sh*t with the low hgb. Some people do adjust but not too many adjust very well around 9.

Hope things start turning around soon.

-- Jim

[Marcia2202]

I just wanted to say that I'm sorry you are going through this and hope you will be able to take the right decision for your own special case. You're in my prayers.

Marcia

[Deb_c430]

Thank you,   very kind of you.

I asked about  a iron test,  we will see,   I am leaning towards lowering the riba, need to ask some more questions.

Thank you all..
Deb

[Andiamo1]

I also want to add that I hope things work out for you.

Eric

[portann]

Dear Deb,

Sorry to hear about the call from the RN. On the bright side, at least she contacted you.

I know you'll find your feet quicker than most and move forward.

You are so tiny (106)!!! I am on 1000 RVN but weigh at least twenty pounds more than you. Dosage is too complex for me to understand but five pills a day hits my 125 -130  pounds with a wallop. Still, my hemoglobin rebounded on its own, just after descending to 10.

Thanks for your note this morning. Ironically, I also received 'the call' from my RN for the first time since May, saying my neutrophils had tanked. She's now on 'alert' but I'm aiming to surprise her with spontaneous recovery, or so goes my wishful thinking.

I'm going as far as I can see, and when I get there, I will see farther.

All the best and hugs.

[comeagain]

Its very hard to suggest anything , its your decision all I can say it seems like your not at all underdosed with 800mg riba, I know about some people who took a lot of riba but that was because their hgb wouldn´t go down.

Your in my prayers always good luck with your decision.

ca

[sunqueen]

I also would like to wish you the best possible outcome and will keep you in my thoughts and prayers.

[charm27]

Hope your HGB rises again soon. Your such a trooper! Hang In there!

Well wishes always
Cham

[Deb_c430]

Thank you for all your well wishes,  very kind of you all.

Ca, grrrrrrrrrr! so aggravated! but trust no ,my friend?

Elaine I am leaning towards lower riba,    I would then be right  on weight base, I gained 7lbs, hey hey!

Just waiting to get some information back,  We will see, now just the waiting game,  

Will let you know, when I hear.

Portann,  absolutes are not as bad as HGB, a lot of GIs let them crash Low,  I guess the thinking is this stuff is poison already and killing any virus,.

Do your bones ache at all?

Hugs to all

Deb

Love ya

Deb

[Jacob43]

You know you caused me to author my first 'note'.  Reading your journal entries, etcetera, shows a determined person.  Third time around, huh?   I've got a lot of respect for you lady.  Jacob

[GSDgirl]

I really hope you start to feel better.  I was on the 800 riba the whole 6 months and started at 118 lbs, You must be a tiny thing at 106lbs.  My hgb only went as low as 10.6 and I can't imagine if it would have went lower.

Denise

[kickboxingmom]

Good Luck !
Tammy

[medicmommy]

Hi Deb! I was pretty amazed at what a small drop in my riba did for my HGB levels...I was at week # 21, and mine dropped to 9.1...Yep. I can identify with the "terminal" fatigue feeling...And chest pressure/ short of breath feeling with ANY exertion... I wasn't on rescue drugs and the Dr wanted me to stop txing...I was only going 24 weeks, but didn't want to risk it...Sooooo...I halved the dose, and kept up the Peg...:) (I was on 800 mg, and dropped to 400 -I'm a 3a, weighed 180 lbs at start of tx)...Well, in less than three weeks, my HGB began to rise rapidly! I was up to 10.2 at 2.5 weeks..and 11.1 at 4 weeks...In case you haven't had it checked, have your thyroid levels done to check for thyroiditis...(Get TSH, T-3, T-4, and Free T-3 and Free T-4 levels)..If you are hyperthyroid (low TSH, high "frees") it may be stressing your system, speeding the hemolytic anemia process...Also, are you taking any vitamin Bs? Or Folic acid (at least 800 mcg)? Your body needs these to rebuild blood cells...And txing depletes it in a bad way...Good luck, and hope your labs rise soon...
((((((((((((((((((((((((((((((((((HUGZ)))))))))))))))))))))))))))                         Melinda
P.S. I'm now 7 weeks post tx...and doing great! No brain fog, no fatigue, got loads of energy...No snarling either! :) Hang in there! If you can make it through this, the end result is worth it...

[GoofyDad]

I concur with the Folic Acid from above. My doc had me on 1gr per day. With 60K of procrit and 16.5 mg/kg of riba. With that, I ran hgb of 9-9.5. He finally put his foot down and said I had been under 10 for too long (actually said he was loosing sleep over it) and made me drop a riba pill until I got over 10. It took about a week or so. Then I took it upon myself to skip a pill every couple days or so - as long as I stayed above 9,9, he was cool.

People metabolize riba at different efficiencies. My theory is that if the riba's keeping you at 10.0 or so, with full procrit onboard, you're getting a plenty effective dose.  

Ask about the FA.  

[Trish77]

Deb, I think I'd go with lowering the riba too.  You want to get all the way through treatment, that's the goal and your weight and the point of treatment you're at would say you can tolerate a lower dosage and it doesn't have to be for the duration.. you just really have to get that hgb up.  800mg is still very decent for 106lbs.  And I'm a riba cheerleader. :)   You're just past the halfway point if I have that right and it would really do you good to bring your hgb up.....it has made a *world* of difference for me to finally have my hgb up from lower 10's to 11.5 - 11.8 thereabouts.  The energy difference and mental outlook as a result have been really nice.  I was starting to feel a real apathy settling in from being tired so bloody long and that can make a person very treatment weary .. which I think you're flirting with and that's a tough place to be.  

The doc had me on folic acid and B12 too just in case it helped. I have to say that I really didn't notice that it helped at all because there wasn't ever much change in my hgb but I was willing to take it for that small chance it might help and because it sure didn't hurt.

You might want to even start with reducing your riba for even a week... you can tolerate a week of a lower dose of riba at your stage of treatment with no real concerns and perhaps see what the impact is but I think you're okay to go longer too and doesn't mean it will stay that way..maybe just enough to give you relief and you can take it a step at a time.   I know it's not an easy decision to decide to lower a dosage, that's hard on a person mentally.. however I think you're in a safe zone to be able to do it and it just might be very prudent at this point.   I think your best chance at SVR is getting all the way through your treatment and a lower riba dose about now just might help with that.  I think you really need to get that hgb up to help you get through the 72 weeks just that much better.

I just *really* wish you good luck at sorting out what is best for you.  Heehaw!! ;->

Trish

[Deb_c430]

That is where I am heading also, lower riba, honestly  this is kicking my butt.  Infergen is tough enough, not having the strength to  fight is not easy.

I think what stops me is, is this is my last time treating, PERIOD.   So I want to know if I do not get SVR, I did everything I could to get there.  

Thanks so much all, your comments really help me decide, and give me points to consider.  That is imprortant to me.   I believe in advocating,  as you know lol.  

So thank you, so much,  wish i could give you all a hug!

Deb

[Deb_c430]

Actually iron is usually "overstored" in the liver and so most Hep C patients have high iron tests and he can test but it usually shows it too high.  Insurance companies sometimes ask us to get it and we are like whatever.  RIbavirin causes hemolytic anemia not iron deficiency anemia...but b/c you are who you are I can ask him to run the tests if you like my dear:)  I would definetely tell you at this point not to take iron until I see a deficiency on paper.

This is from my RN, who helps to oversee my case and very on top of Hep C.  

[jmjm530]

Deb: ows it too high.  Insurance companies sometimes ask us to get it and we are like whatever.  RIbavirin causes hemolytic anemia not iron deficiency anemia..
-----------
That's true, but you're confusing two different topics. As you state, ribavirin does not cause iron deficiency anemia BUT Procrit (epo) can deplete your iron stores. Once the stores are depleted the Procrit stops working. That's why it's so important to run the two iron stores tests if you're taking Procrit and especially if it stops working. IF it turns out that your iron stores are low, then supplemental iron should make the Procrit start working again. This is not the serum iron test but Ferritin and TSAT. They are not ordinarily part of a health screen. In the Swedish high-dose riba study, for example, all ten of the participants ended up on supplemental iron.

-- Jim

[mikesimon]

Jim has a valid point. I would get tested. Mike

[Deb_c430]

yes we are going to test for this,  

Jim you just might be right,....   found this on website with some help,  

See:                      http://mesomorphosis.com/downloads/uspi-epogen.pdf


"Lack or Loss of Response
If the patient fails to respond or to maintain a response to doses within the recommended dosing range, the following etiologies should be considered and evaluated:
1. Iron deficiency: Virtually all patients will eventually require supplemental iron therapy (see IRON EVALUATION).
2. Underlying infectious, inflammatory, or malignant processes.
3. Occult blood loss.
4. Underlying hematologic diseases (ie, thalassemia, refractory anemia, or other myelodysplastic disorders).
5. Vitamin deficiencies: Folic acid or vitamin B12.
6. Hemolysis.
7. Aluminum intoxication.
8. Osteitis fibrosa cystica.
9. Pure Red Cell Aplasia (PRCA) or anti-erythropoietin antibody-associated anemia: In the absence of another etiology, the patient should be evaluated for evidence of PRCA and sera should be tested for the presence of antibodies to erythropoietin (see WARNINGS: Pure Red Cell Aplasia).

Iron Evaluation
During EPOGEN® therapy, absolute or functional iron deficiency may develop. Functional iron deficiency, with normal ferritin levels but low transferrin saturation, is presumably due to the inability to mobilize iron stores rapidly enough to support increased erythropoiesis. Transferrin saturation should be at least 20% and ferritin should be at least 100 ng/mL.
Prior to and during EPOGEN® therapy, the patient’s iron status, including transferrin saturation (serum iron divided by iron binding capacity) and serum ferritin, should be evaluated. Virtually all patients will eventually require supplemental iron to increase or maintain transferrin saturation to levels which will adequately support erythropoiesis stimulated by EPOGEN®. All surgery patients being treated with EPOGEN® should receive adequate iron supplementation throughout the course of therapy in order to support erythropoiesis and avoid depletion of iron stores....."


Thanks again

[jmjm530]

The same info as I presented should be on the Procrit (epo) package insert, or at least it was. Here's same thing again from Cleaveland Clinic and although not HCV specific, the principal stands that Procrit will not work with inadequate iron stores.
https://www.clevelandclinic.org/myeloma/Procrit_phaseII_less_frequent.htm

"...Must have transferrin saturation of at least 20% and serum ferritin of at least 50 ng/mL If transferrin saturation is < 20% or serum ferritin < 50 ng/mL, the investigator may utilize bone marrow evaluation results or clinical judgment to determine if iron stores are adequate . If inadequate, the patient will be supplemented with iron..."

----------
This is not to say that your iron stores are low because the Procrit stopped working. Only that if they are low then you probably have a real easy fix to your problem without having to lower the riba.

-- Jim

[Deb_c430]

Thanks again,  You know normally that would be one of the first thing I would do when I get a new drug, read the info that comes with it. Not sure if I ever looked at procrits, though.

We will test for it, it is  just a simple blood test,  a easy fix would be good!

The one thing I get confused about is most of what I have read, speaks mostly about Cancer,  Chemo,  Never sure if they can be applied to HCV as well.

Thanks again, Jim and Michael!  

Deb

[Trish77]

You are right, Jim ... it mentions getting iron stores tests on the procrit insert before you start and at regular (one month?) intervals while on it to make sure that the drug is as effective as possible.  That was the clincher in my doctor agreeing to those tests for me, as the ones they had were from 2007...I quoted the insert from the drug to him and he agreed to get a current test of my iron stores.  

More bedtime reading, eh Deb?  :)

[Deb_c430]

Lol Trish, not for me, I can barely read a post longer than a paragraph, no spaces and my brain goes haywire!   i leave all that to you brainiacs! Lol!

Again though I will let you all know, when my iron test comes   back,  

If it isn't   that I will lower riba,  I probably will anyway if I can make it to my 48 weeks, I may any before.

Thank you all so much,  My forum heros!

Deb

[Mikkimoe]

Hey gal - sorry to hear more bad news - you've been such a trooper.

I looked back on my journal notes and have a few things of interest. Granted i was 2B and only went for 13 weeks (am still clear BTW).
I started at 106 lbs and only 800 riba (lots of current stats support the Body weight based theory)

By week 8 I had gone down to 600 (mega RA flare) then I'd alternate day to day - 700 one day 800 anouther. You can take the Riba tablets and they break in half to make 100's. I have a bunch left I'll gladly give you. I also cut back the peg.

See May 30th - 2008- from my journal on my profile - it mentions that the factor to figure out how much riba is needed based on body weight. It is 13g times your body weight in kg - 106 lbs is about 45 kg - which equals 585 mg of riba - round off to 600  and you should be just fine. I can find the documents if you need them.

Hope this helps - we'll have to chat...things are still pretty rough for me still - just did the second Rituxan infusion today for the severe RA etc....pretty flu like - gee what does that remind you of?  :-)

Many well wishes - TTYS,

mikkimoe

[Deb_c430]

been thinking about you a lot lately, been in my own world,  sure you can remember that lol!

My RN's   Doctor is Rheumotolgist in Bakersfield.  One of my friends was also on Infergen, but couldn't stop it,  On a recent blood work test her WBCs came back crashed, They are looking at Lupos now.  (which for me is always a catch all)  But my point is ( getting there)  He the rheumo guy thinks it is coming directly from the HCV not the drugs to cure it.  I was curious have you ever tried connecting it all together?

I know you have researched like a mad person!   so this is probably a mute question.


Hugs and stuff

Deb

[Mikkimoe]

I was curious have you ever tried connecting it all together? -----------------

You may be sorry you asked that question...

Boy howdy - researched till I went brain dead and that’s about where I am now.
I figure that since I had my total transfusion 30 years ago when I caught this and should have died (was actually dead for 27 seconds) - that every few years it would raise its ugly head and take me down. I had been hospitalized so many times with symptoms but no diagnosis. My liver enzymes would elevate and I'd have severe rashes - they'd think it was meningitis, and all kinds of other crazy things - then it would just stop. I was in the hospital for a week once with my head feeling like it was exploding - everything elevated. for lack of anything better they called it a temporal artirosis attack. Then I went through a severe trauma (step son committed suicide - gun in mouth in front of me) I had a nervous breakdown - then shingles - then a very high fever which became the Rheumatoid that I have today (took them 4 months to figure it out) That was 14 yrs ago - since then I have been in the hospital with severe ischemic colitis (lost 1/3 of my large intestine)...liver levels through the roof (you think they may have put 2 and 2 together then but no) Then a few yrs later the bladder went - Interstitial cystitis - had to give myself catheter instillations of Elmiron for a year - then it just disappeared. All that and 14 surgeries to correct my eaten away joints and my Rhuemy decides to put me on a new bio drug that requires a hep test before you begin - and what do ya know....the little worm that's been floating in the bottle all these years has been discovered. I truly believe my symptoms of just Hep c were as bad or worse at certain points then they were during treatment. That is probably why I am so concerned that maybe the little guy is still lurking - because I am not getting better yet....but we don't want to go there do we.

[Mikkimoe]

I have so many drs that I can't keep track anymore - just got a 7 hour infusion from a oncologist yesterday - shoulder and hip injections form my ortho a few days before that - going to the Rheumy tomorrow for more tests (fibro etc). Have an MRI next week for the leg and back neuropathy from my neurologist...the hepatologist the next week - the gyno wants to check on a mass in uterous the same week (and it aint a baby). My neck surgeon thinks my titanium rods in my C-1 may be effecting my nerves causing some of the neuropathy - so have to see him...and the list goes on...but hey I'm still riding my horses and they are not going to get me down no matter how hard they try - I still have some living to do...so there
I just did this to help charm feel better...it is all true but you'd never kow it if you meet me - everyone always says how great I look....gotta love it

Yep there is a connection in a very big way with some of us and we are in the twilight of discovery on this bad boy..you know you have had your share as well...sorry for the monolog - can't sleep tonight...but it was fun to vent - thanks

[Deb_c430]

Awww,   some of those symptoms I have had also, the rashes,   so on.

i wish I had something to give you to help you,  Lord knows you deserve a break.  I just really think so many things happen just because they do without the HCV.  But I also think there are some common denominaters, in HCV,  things we had pre diagnoses.  

I know you have gone through the doctor mills,     it is tough,  me to,

Anyway i will pm you later, this is charms thread,  to kick her booty to the end.

Love ya

[Deb_c430]

cracks self up! this was my thread!  duh!!!!!!!!!

[mikesimon]

Any results form the iron tests? Inquiring minds want to know this stuff.
Mike

[Deb_c430]

Ok, I was just trying to decide if I should do a new thread,  or just pm everyone,    He said so far it looks ok, next week I have to do another one, also some other ones that I forget the name of,    Nurse will type it out for me, and I will let you know.  

Anna my nurse RN asked one her Drug company Doctors a researcher, he seemed to agree, with the original thought of dropping riba a bit, but said yes it could also be iron. But really thinks  dropping the riba is the answer,, Gi will not increase Procrit so that seems  to be the answer.

You know this was a good thread,  We all learned about Procrit,  Iron, I always wondered why some folks are on iron, now I know!

Good news is I am still UND! YAY!    

Thanks for checking my friend,  hugs!

[comeagain]

It was your thread and I wasn´t geterdone and Mikkimoe isn´t meeki.

You so sweet with your brainfog.

But what the heck as long as we find our way home and the key and the key-hole everything is under control.

ca

[Deb_c430]

oh geesh, think I am going on vacation for awhile,  I just posted a two part thing on iron levels, made two posts! I should of just answered myself!  I am a mess.  

Geterdones comment on another cracked me IBS, snorts, still giggling, meeki, Gosh poor you guys trying decipher it all!

thanks.!  

Deb

[comeagain]

I didn´t get that jasper joke what is IBS?

[Deb_c430]

Irratable bowel  syndrom (syndrome), he makes me laugh,  

[Deb_c430]

LDL haptoglobulin
Iron studies ferritin Tsat
reticulocyte count

[jmjm530]

By the time it's all over, you'll know so much about your iron that even your husband's shirts will start looking crisper.

[Mikkimoe]

Your both cracking me up...needed that... thanks

[Deb_c430]

Best part is there no starch involved Jim! :>)