Very Low HGB

I got my iron test back, which is the good news, it is ok.  

My HGB is down to 8.5, i am really hoping that is a error.   Looks like I will be going down to 800.

I have been really weepy today, tired,  I am so frustrated to hating this. My Vent for the day!

Waiting for RN to get a call back from GI.

Have a good weekend

Deb

[epiphiny]

Hi Deb,

Sorry to hear you are feeling low; the low Hb count can cause you to feel weepy and tired for sure, the same thing happened to me and I also had to take a dose reduction for a few weeks at about week 5 until my Hb came back above the threshold.

It did come back and I went back to full dose Riba and I have stabilized at around 10.5 since then, currently week 20.

I live in NZ where there are no rescue drugs (bummer) but I am wondering if you could access rescue drugs rather than taking a dose reduction?

All the best xx

[Deb_c430]

Thanks Epiphiny,  
I am already on Procrit 60 k.   They can't/won't increase it. This is the worse feeling,

[Xenigma]

8.5 is pretty low.  I'm not sure there is any alternative but to lower your Riba at this point.
A transfusion perhaps if you want to stay on your current dose of Riba.  
At 10.0 hgb I couldn't walk straight and would break out in a cold clammy sweat.  
You must be miserable!!
I just hope you get to feeling better and just rest and drink water.
I dunno, it helped me feel better (not that it helped my numbers)

[epiphiny]

Oh I am so sorry to hear how bad you feel and I know what a bummer it is to take a reduction.  But I feel sure your Hb will bounce back and it's amazing what a point or so can do for how you feel.

When it happened to me I went mad on fresh juices; beetroot, spinach, carrot, parsley etc.  I really don't know if it affected my blood count but it made a difference to my mental state as I felt I was doing something to help myself.  I drank them twice daily until my Hb was back up and I could take full dose again.

Hang in there, I'm sending you positive thoughts!

[Deb_c430]

Actually  I guess I shoul be grateful Procrit has worked for as long as it has,  I am on a fruit kick,  I think i am on week 34, but I inject daily, I am doing 72 weeks, so I think it is ok.  V8 Splash.

Maybe even better that I slow it down a bit? (the riba) The weepiness is driving me crazy,  it isn't like me.  

I still have a long way to go, thanks so much for your support.

Epiph NZ is on my list! There and OZ,  but NZ looks to be so beautiful!

Deb

[Trinity4]

Hang in there.  I know you feel like crapp.  You're on the tough stuff, but you're made out of  the "right stuff" and that's going to keep you going.  I can't wrap my head around 72 wks either and that's doing SOC.  I guess it's one day a time for us.  I'm thinking about you and hoping the numbers come up and you start to feel better.  Ditto on the weepy.

Feel Better Soon -
Trin

[Trish77]

I think you'll be okay at the 800 riba at your 106 pounds.  And I think it will be better for you overall.  We get to the point sometimes where options are limited so we do what we can even if it isn't much and not what we would wish for.  I know it hurts to reduce treatment drugs at ALL .. I think your overall benefits will be better for the 800...I think you've done well to keep at 1000 all this time and I think you can go to 800 and still be on a good dose for you and still be okay.  I wish you all the best, Deb.

Trish

[can-do-man]

I agree with trish on the 800 riba, plus you really don't have much of a choice. 60,000 of procrit is pretty much the limit. My hepo doesn't feel anymore does any better. Your one tough gal doing daily shots as it is. Remember SVR does one no good if their not around to enjoy it.

Hope you get feeling better soon. Hey at 8.5 i just might be able to beat you in a race.:)

cando

[comeagain]

If i understand it right with 800mg riba a day with your weight you would still have 16mg per kilo and thats considering high. I thought you already had cutted down to 800 what is your doc saying.

Also if I´m not remembering wrong that riba dose reduction is most harmful, dangerous before you have reached UND.

My 15 years old middle girl found out in a routincheck her hgb was down in 8.0 shes been used to it for a long time othervise she would have faced transfusion at 8.5 no shes getting iron supplement just started 2.5 week ago.

Rooting for you as always .

ca

[jmjm530]

Don't know how long you've been on 60,000 Procrit, but a dose change can take up to 2-4 weeks to kick in. If that time has passed, your hgb probably will not get better and as stated, 60K is about the max you want.

Given the entire situation, if the 60K has had time to work, then the most reasonable option is to drop the riba because full-dose riba is only helpful if you're able to continue on treatment, not if it ends up pulling you off treatment. Also, there is nothing in stone that you have to drop from 1000 to 800, although that might make the most sense for quick relief. You could also treat at 900 which might for example involve alternating 800 days with 1000 days. The blood transfusion option is also something to discuss with your doc should you start to feel even worse and/or should the hgb drop fast.

Don't know what your current monitoring is for CBCs, but twice a week is not too much until things stabalize. Even more should you start to develop more symptons between the two draws.

Hope you feel better soon.

-- Jim

[CMcH]

Wow that is low. You must be dragging. When I get low every time I stand up I want to lay back down. My NP wants to drop me down to 800 and I don't really want to! She said she wants my bone marrow to make the RBC and not to rely on Procrit to much.
I have gotten very labile too and started crying at the bank once with my family there! Totally freaked out my family. Now I take my AD in the AM instead of PM to help me make it through the day. I hope you feel better soon.
Wishing you lots O love and strength,
Connie

[charm27]

Sorry to hear your HGB is so low. You must be feeling like rubber! At 10.4 my HGB is making me go into hot sweats constantly and cant pick up more than a gallon of milk without gettin g out of breath.

Hopefully the reducton of RIba will work and you will start to feel beter soon.

Hang In There trooper! We are all rooting for you.

Feel better.
Love Charm

[jdwithhcv]

Aw, Deb...so sorry to hear you're dragging your tail.  That sure will make you weepy.  Dose reduction sounds inevitable now but 800 of riba will be plenty for you at 106.  Sure do hope a dose reduction does the job.  Hang in there.
xoxox
jd

[Mikkimoe]

Darn it anyway - why do such nice people have to have such a hard go of it...you have really been through it girlfriend and I can't even imagine 72 weeks...When I feel better and am driving farther then the ranch (5 miles) I'm coming to visit...I'll drag you out to watch the wild mustangs...that'll put a smile on that wheepy face.

You know my story 106 lbs - 800 riba down to 700 down to 600 and had to stop it all at 12 weeks - but hey so far so good - still clear at 3 months post....still a physical mess but clear so do what you need to but I think the reduction would be fine - I thought you had already done that as well.

Your a warrior of the silent dragon and you will slay that bad boy so hang in there!

Hugs,

Mikkimoe

[IAmTheWalrus]

I'm sorry to hear the you're still having HGB difficulties. I cannot imagine what it must feel like to have it at 8.5. When mine got below 10, I could hardly stand up. It looks like dose reduction is the only thing here. As has been said, the higher dose only does you good if you can stay on treatment.

Wishing you the best!

Brent

[Deb_c430]

Its been a tough weekend,  I finally got all the tests back, it was either lower Riba, or blood transfusions again, I think that isn't a good thing, so as everyone has told me, (yes I am stubborn :>>))  Lowering riba is the answer,

Today I feel a bit better. Again thank all of you!    I wish it had been the iron Jim,    but hey, I will get through this!

Hugs to you all!

Deb

[portann]

Hugs to you, Deb. Glad you feel a bit better. I wish it had been the iron, too.

[geterdone]

Yo! Deb, just checking the Christmas list and your name popped out, I guess the pogo stick is out for you, huh! No worry! got a back up, a Segway! but then again, not sure if you could handle it in your physical state, you have to lean forward to get it moving and backwards to get it to stop. O' well have to put you on the redo list, Lol hope you feel better soon and the hgb picks up.

jasper

[Deb_c430]

Your so kind portann,    getting really attatched to you!

Yo Jasper dude a segway sounds way to fun!  I would for sure crash and burn!  I was thinking the other day one of the little kids cars, with a souped up engine! VROOOM! Can you see it? Pogo stick not such a great idea,

deb laughing!

[alagirl]

with your hgb at 8.5 you should be checking your cbc daily now.  Particularly since the procrit of 60k (and I think prob the highest any of us used was 40k 2x per week) isn't working.  If you get down to 8 I would go to the ER.  I would also get a referral over to a hematologist to start working with you.  Mine made me check into the hospital as soon as it went under 8, and that can happen in a day when you start getting down as low as you are.  Also, you don't think as well as normal, even though you THINK you are thinking straight.  I had 14 transfusions during tx and my ferritin went between 2000 - 3000 due to that but they still let me keep treating and just supported me with the transfusions and procrit.  Now that I have treated successfully I am about to start taking ex-jade to get rid of the extra iron.

I would urge you though to keep a close watch on your hgb at this stage so you can get help if you need it and not have to stop treating.

[Deb_c430]

oh geesh NO, not daily, to much effort, but I do have it checked often,   Not thinking normal, ala I am a mess,  brain wise,

I have a apt today, thanks my friend, I know you know of all people what a mess this is!  

Deb

[alagirl]

You don't always have to get it checked daily but at 8.5, transfusion level is 8 and under.  You can easily go down .5 per day.  If you have a walk in clinic, like a Rapid Care or minor emergency that has a machine for cbc's right there, they can arrange for you to just walk in and they can do your bloodwork for you quickly without you waiting through all the emergent patients.  I checked mine once or twice a week, but then switched to daily once it got down under 9.  Ask your doc to refer you to a hematologist.  You need to get support for this.  Honestly.  In order to maintain your treatment.

[Deb_c430]

I dropped 200 riba, so am hoping that does the trick!   I talked to GI yesterday he says  this week, so fingers crossed it will go up!

[IAmTheWalrus]

Mine are crossed, too! HGB = 8.5 sounds pretty dire to me. I hope it comes up with the lower riba dose. Good luck - Brent

[Deb_c430]

Think it is,  feel a bit better. still really tired and lazy, but that is common on this treatment

[portann]

Hi Deb,

So glad to hear from you today. I really am thinking of you, hoping so much that you can find the right balance among all these competing needs - the need to keep your hemoglobin in a safe zone, need to stay on the ribavirin, need to feel better. Sometimes this dosage thing seems more like a religion, except it changes so fast from one study to the next. Just intuitively, since I'm almost 135 pounds taking five pills a day, it makes sense a weight-based dose would mean four pills for someone who is almost thirty pounds less. I'd be comfy in my skin if I'd started that way, taking four pills a day at 106 like you.  The problem for most of us (in all walks of our lives) is that it is harder to give something up than if we'd started with something less. There's a desperate kind of hanging on to what we'd had - whether it's our standard of living or five pills a day of ribavirin - but fixating on what we once had can be insidiously defeating. Let's hope we all rise above this when necessary, taking what we have in hand to achieve success even when the terms change.

Is there anything but tired and lazy these days? And I say that shamefully, given my hemoglobin is now at the spectacular level of 11.5. I was dead at 10.5, so dead at 8.5 must be amazing. I am thrilled in my new sleepy kind of way to hear your hemoglobin may be inching up and you're feeling a bit better.

[Deb_c430]

Thank you, that was nice to read, how I very often feel, Get so tired of trying to keep up. So much info, so many different emotions.

All I guess we can really do is hang in there to the best we can.   800  was the dose I should of been on to begin with but i wanted to nuke it!

Again thank you for reminding me of balance,  

Deb

[alagirl]

You know, I had 14 transfusions during treatment and I'd do it again tomorrow.  Not that I think 800 on the riba is a terrible thing in your case, but reducing further than that I would worry about.  You do have to get rid of the extra iron after treatment if you transfuse a lot, but you have both phlebotomy and drug options in order to do that.

[Deb_c430]

Oh I fought going to 800,  i was at 1000, but I am small so should have been on that to begin with. had one transfusion already.   I remember all you went through,  it was a tough tx.  Fingers crossed this should do it.

Hugs syd

[meNtoby]

Hope you feel better soon!!!  I PM'd you a joke I was afraid to put here!

cat

[medicmommy]

Hi Deb! I recall feeling like weak poo at 9.1 HGB...Urgh...Something I was told -and it seemed to help, was to be taking at least 800 mcg of folic acid every day as well as b-complex vitamins...And 2 tablespoons of molasses a day..the molasses is high in dietary iron (I was told supplemental iron can actually cause liver damage if you are stage 2/ grade 2 or more)..these supplements restore ferritin (iron stores) your body needs to build red blood cells...I was becoming iron depleted on top of having accelerated hemolytic anemia (blood is destroyed faster than your body can make it) from being hyperthyroid as well...(Have this checked!) Hang in there...If you are passing out when you stand up, or are sweating profusely and getting chest pressure with minimal movement, you may need a blood transfusion...((((((((((((((HUGZ)))))))))))
                                                                                     ~Melinda

[alagirl]

If she's already had a transfusion and may end up needing more during treatment then she really needs to get her iron levels checked before adding additional iron to her diet in the form of supplements or iron rich foods I think.  

[Deb_c430]

Ala I did get them checked twice,  everything is ok,  procrit just stopped working so well, so dropped 200 ml,  Riba.

Feeling better, a bit and have check monday, I am ok.