Has anyone taken Procrit (epo) before their hemoglobin went to 10?

[Mikkimoe]

Hi,

My symptoms are pretty severe lately and am considering a drop in my meds but am also thinking that Procit may help get me out of the water. My doctor is under the same standard as most that it has to drop below 10. Mine has dropped from 14.5 to 12 in less then 3 months. I have extreme fatigue, heart pressure and palpatations, very dizzy when I stand, very short of breath, heart beating out of my chest feeling, head pounding etc. Pretty much totally bed ridden. Geno 2B - UND at 3.5 wks - 6 wks into tx.

My doctor responds well to any research studies or articles - do any of you happen to have one that indicates it's OK to give procrit for readings that are above 10?

Thanks,

Mikki

[Mikkimoe]

Hi gals,

Just back from Dr. #3 this week and it seems it's just the autoimmune kicking my butt so bad. Lot's of low's on my labs but the hgl is still at 12. I have autoimune and iron anemia and basically just a high intolerance to the meds due to the Enbrel. But Both the Hepta and the Rhumey say no Procrit - it would make it worse at this point and I'm already taking 3 injections a week as it is...The enbrel seems to be having worse reactions then the Peg these days....so I just have to get get use to the fact that I will be bed ridden pretty much the rest of tx.   But ya know - that's OK - I look at it like having a hard pregnancy....if it's a bouncing healthy baby at the end - who cares right.

How are you all doing?

{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}

Mikkimoe

[Wassup]

Trish, Darlin', I couldn't have said it better.  So, Mikkimo, Ditto, dontchano!  Love n hugs, Bv

[Trish77]

Wise girl.  The goal is to stay alive and not do yourself more harm than good, if you can help it, with the roulette game that tx seems to be sometimes.  I know you're going to give this tx your best shot, no question about that ever entered my mind.  You'll hang in there with what you can tolerate and reduce only where you must, to prevent more harm than is reasonable on this tx.  SVR is the cherry on the ice cream sundae, darlin...but what IS the cherry without the ice cream sundae??  

You have some things in your favour in that you're a geno 2 and you achieved UND early.  So here's hoping that extra bit of magic that none of us can control is also on your side and that this is the one and only time that you ever have to go through this extra-brutal-for-you treatment.

(What is your hgb at these days, btw?  I read up trying to find it and couldn't.  Where's the procrit discussion at with your doc and how do you feel about all that?)

Take good care of yourself....keep advocating for yourself...keep seeing those docs, keep asking those questions, keep researching....and do what is good for you.

And PLEASE....don't wait too long to contact the doc if things take a downturn.  Please take good care of YOU.  

I'm SO rooting for you, Mikmo.

Hugs to you...um... VERY gentle ones.  :)

Trish

[TeriToo]

Hi. No one knows me here yet, but I wanted to share. Mikki, I had the relentless-take-u-to-your-knees migrain, projectile vomitting, running into walls, totally unable to put a sentence together, burning in my bones, rash all over me-felt and looked like someone threw hot water in my face. I went to the ER, and immediately was given IVs and three pints of blood. I stayed for four days. Everyone had to wear masks around me, even when I went home, so I didn't catch any thing. All of that is a blur..I can't remember..Anyway, they gave me procrit. I go to my hemotologist Tuesday. My number as of yesterday, is 9.6. They plan to start me on Procrit regular. Anyway, one of my points is..Go Get Checked..I am still getting lectures for letting it get that far. Also, if insurance doesn't pay,  do what I did. I am uninsured, and paying for specialists and labs is challenging enough. When I was told the peg/Rib for 48 weeks would cost $48,000, I knew that would burden my family. I called the maker and they agreed to supply it, totally free of charge. Thank God. The Procrit too. It can't hurt to ask. Being insured shouldn't matter..they are nice people and are glad to help. NOONE ASKS! It was hard for me, but I am so grateful. ASK! I am not trying to scare you, but please go get checked. Everyone seems to love you here, and I would like to offer you support also.

[Mikkimoe]

Thanks deb - hey can we have a group Scream...kinda like a group hug but maybe more theraputic right now.


AHHHHHHHHHHHHHHRRRRRRRRRRRRRRRRRR

Ok - that's better

now a (((((((((((((((((((hug)))))))))))))))))))))))))

[Deb_c430]

I think if were anyone else, I would agree with NYG, to hang in there.

But you are whole nother  kettle of fish, your pre existing  conditions,  (Iam still stressed about your heart btw)  

They change things for you,   i feel your pain, in your joints I have the same way.

Add nerve damage pre existing,  I wanna scream.

Try and relax, do as your Doc says.

Hugs

[Mikkimoe]

Hi nygal,

Guess I should elaborate a bit.... I understand what your saying and totally agree with you but my situation is a lot more complex. I have severe RA and am on biogenetic injections that amplify the effects of the Peg. I have also had 2 episodes of autoimmune syndrome - a VERY scary event that only happens to people with RA on tx. Every joint in your body flares at once...it is more pain then anything you can ever concieve. You literallty cannot move. It lasted 8 hours and stopped. There is a 4% chance that the next time it will NEVER stop and I will be that way the rest of my life. My docs were going to pull me off all meds when it happened but I talked one of them into the reduction and am very OK with it. I refuse to end up coming out of this in worse shape then I came in.

I have done a GREAT deal of research and have 2 of the best Hepatologists in Southern California. I know what the ranges are in respect to Body mass and I am in the perfect relationship right now. My weight is 45 kg - the best range for the riba is 13mg per kg - that means I will need 585 and I am taking 600. The Peg is based on a 200 lb person - I am 1/2 that and could do fine on 90 but am staying at 145. I am still UND for now.

I also have RA anemia which is not really seen in your blood test - it is seen in your bone marrow...this complicates things as well and procrit will make it worse...I also have cardiac issues and the list goes on.  

So I'm rather unique and I agree that if I were a normal person I would totally stay the course, especially if I were a geno 1. (I am a 2b and was UND at 3.5 wks - so have a much better success rate). Thanks for your concerns, it really does help when I'm having days like today...mega migrain...laying in bed in the dark with sunglasses on just to handle seeing the computer screen on my lap and having to take that shot tonight (and this is the best day of the week - ha) And knowing it is going to blow my head outta the water and I'll be pucking all night and wanting to do like the doc said and take 90 - but thanks to your pep talk - I'm going to do the 145....ugh

Thanks again,

mikki

[nygirl7]

Can they cut them more at this point?

[nygirl7]

Ps Mikki....if you can try not to reduce your meds please!  Under absolutely no circumstances should we ever allow someone to trick us into doing that. You're already at week 6!  Week 6!  You've only got to go to 24! You were UND at such an EARLY date that you know full well you are going to beat this thing!  If you can just hold on a little bit more...you'll definitely have it.  Don't take a chance and mess around with the meds. If your immune system hasn't had a long enough time to get into the groove and you drop some meds and the virus has a chance to come back in..................next treatmenT you'll have to do 48 weeks MINIMUM!

Hang in there but don't drop your meds.  Just don't you do it no matter how bad you feel! SVR is the goal and it hurts like hell now but.............if you hang in there it's almost all over already you are one of the "lucky" ones that only do 24 weeks...I would have given anything when I was into the 70th+ week of treatment to have stopped so long before!

Look at all the people who have viral breakthrough or relapse that don't even drop any dosages!  it's not worth it...you'd be so upset if you got back a PCR and it had a viral load next to it!

Don't take a chance with it.  Just don't.  YOU CAN DO IT HANG IN THERE!  I'll stay right here and push you along but do NOT drop any of your meds. 12 is a great number you can live with it.........just give your body time to acclimate to it and you'll see - the human body is unbelievable and it can adapt to anything....just give it some time to be ablel to do so!

YOU CAN DO IT!

[nygirl7]

My hemo dropped six full points in just over one week.  It was literally hell for me. From 15+ down to 9. My doctor STILL didn't think I needed Procrit.

Of course, I insisted that i did and I won. He had wanted to send me for a chest xray to figure out why I was having trouble breathing and why I kept fainting.

Doctors...........................go figure.

Still at 12 that is a very high number and your insurance might refuse to pay for it.  I would start with them...........find out if you can get approval having such a high hemo number.  You've had a very slow decline honestly and I'm not sure why you are feeling the effects that badly...are you sure there is not an underlying issue that could be mimicking anemia?

[Mikkimoe]

Bevy - You are always good for a chuckle when I need it most - laying here in the dark in bed with sun glasses on to stand the glare of the computer screen on my lap....mega migrain = AGAIN...to many meds in me - tummy erupting...yi yi yi

Thanks - needed that...

Brian - good to hear from you...I can always count on you (get it....count...like 1,2,3...never mind - I'm fruit loops right now).

Got to make it...got to make it....chug chug chug

[Wassup]

Hey cutems,  I was gunna mail you some lead soled boots ( In case of high winds), but then I thought, WHO"S gunna help you lift your feet to walk. Just tie a rope around your waist and attach the other end to the leg of the kitchen table, so you don't blow off the hill on your patio.  Or, you could put some bacon in your pocket so the dog can find you and fetch you home again?  I'll tell you what you're welcome to some of my rump, but the boobs are still new enough that I'm not willing to share them, just yet.  (Maybe when it gets a little hotter).  I weighed 115 LBS, TWO X-MAS' AGO.  The boobs are my consolation prize for having such a big butt.  Somebody stop me!!!!  I'll have more news 2moro, 2 wk.BT's and see dermatologist Re; mole on back. Later Punkin', hugs, Bv

[IAmTheWalrus]

Hey, I just happened on this thread and wanted to say two things.
1. If it helps, the acute symptoms right after Peg shots became more manageable later in TX than in the early weeks for me. Maybe for you, too I hope.
2. I'm glad you are doing a bit better and haven't given up (nygirl gives great pep talks)
3. It is good that you still show a sense of humor
4. I know... I can't count!

Best to you,
Brent

[Mikkimoe]

Did I say i was doing well? Nice thought though....

My brain is on a permanant vacation, my body feels like the goul on night of the living dead, my energy makes the lowliest of slugs look like Big Brown in the horse race. My lungs forget to breath, my heart forgets to beat and my eyes forget to blink, my migrains keep me locked in dark rooms for days and the RA pain is off the 1 to 10 scale....but hey besides that I'm doing really good....really I have not lost my sence of humor completely and I still have hope....this is going to work if I kill myself doing it (whoops not such a far fetched statement)....for a real good time I have listed step by step blows on my profile page....don't want to discourage any newbees - but I knew in my pre-tx condition that things would be rough. Severe RA and low BMI (body mass) don't handle tx with a lot of grace.

How is everyone else doing?

They have cut my meds again and my tx time is now 16 weeks - so 8 more left to go....

I'll do this and so will you,

Take Care,

Mikmo

[fuzzy1dar]

Glad to here you're doing well with the reduced meds!  How far are you?  I'm 2b also! 6 more wks to go!

best of everything to you!
Darla

[Mikkimoe]

yep cut mine - 600 and 145 prg... brought my hmg etc back up - I am lucky 2B...hope it stays that way :-)

[fuzzy1dar]

UND at 3.5 is great..congrats to you!  Are you geno2?  Wow!  you're tiny at 100lbs.  I would think 180mcg would be too much for someone your size. I hope you're feeling better! How did your doc appt go?   Do you need procrit? I've decided to cut my ribavirin to from 800mg to 600mg/day until I get the procrit ~ any day now I hope.  Been feeling better the last few days....except for this allergy or cold I have just won't let up.

[Mikkimoe]

Not good not having a great doc - I've been on the phone with mine for the last 2 weekends for long spans of time - but kept me outta the ER (hate that place)We  cut my Riba from 4 pills to 3 (I divide them over breakfast - lunch and dinner) then the next day I take 3.5 pills (1.5 at breakfast) I get the generic ribasphere...they are small and break in half.
If I feel real bad on a 3.5 day - i'll stay on 3 for a few days....funny how just 100 mgs can make such a difference.  (I weigh 100lbs - so this should be OK) We cut the Peg to 135 from 180 the first week. 145 the second week and will bump up to 160 tomorrow and see what happens - usually extreme blinding migrains with me. I see the doc Wed we'll see if we need the procrit.  (PS I was UND at 3.5 wks)

[fuzzy1dar]

Sorry to here you're having such a difficult time...I hope you're feeling better today!  Did you ever get the  procrit?  I read thru this thread but having to cut thru the fog to get there (brain fog very thick lately lol) I don't remember if you started it yet!  
My hgb hit 9.6 and I'm having allot of the symptoms you described above...dizziness,  head pounding, heart palps, etc.  so I can somewhat relate to what you're going thru....it isn't easy.  I'm waiting for procrit to be approved and with the holiday can't get it until mid-wk.  I'm thinking maybe I should cut my riba down to 600 until I get the meds.  My doc isn't much help to me when I get in a bind....I found out recently she has only txed a few hcv patients.  Just my luck!  Any advice would be much appreciated.

Best of luck to ya....Darla

[Mikkimoe]

So bevy you've got some pounds you can loan me - cool....can I get picky and ask for booobs and buns?.. .I feel like a stick person or kind of like a paper doll...get a little nervous on windy days.

Trish - I go back to Doctari Wed - we'll see what happens...just hope he doesn't boost the meds back up....I may self destruct...took my labs today so well see where I stand.

The RA finally raised it ugly demon head...knees feel like someone took a sledge hammer to them and I wish who ever tore my right shoulder off would put it back NOW.

RIBBBBBBBBAAAAAA    RAAAAAAAGGGGGGEEEEE   ROOOOOCKKKKS
I find throwing things helps with the pain....how about you?


OK just kidding...sorta...hugs all around....mikmo

[Wassup]

Hi Sweetie, I'm soooo glad you're feeling a little better.  If we could just take a few pounds off of me and put em on you, we'd both be in better shape.  I'm sending you mental meals of love and support, topped with hugs.  PS Also delighted to hear that you've been able to see your 4 legged babies.  That is some of the best medicine you get.  I've seen it with my own eyes. Thank your hubby for me, that he's been spending more time with you. It must be hard trying to juggle work, critters, wife w/ medical issues, etc.  Give him a hug from me too,   Bevy

[Trish77]

It's good to hear from you.  What you did with the arthritis walk and it making you feel better, my courses do that for me.  Those things that give you a mental or emotional boost also boost your internal pool of resources somehow and gives you more resolve.  

I'm glad your nausea and tinnitus is subsiding somewhat.  How's drinking those shakes coming along?  Still wondering about the procrit for your anemia ... can't help it!  Has the decrease in the Peg changed your hgb levels or too soon to tell?  

Keep at it, Mikki.  Don't let it get out of hand, get the care you need.  Glad hubby is taking good care of you.  

Stay in touch.

Trish

[Mikkimoe]

Missed you Bevy - how are you? Guess you know how I'm doing...but I'm actually feeling a little better today...kind of like a miricle...I actually like watered my plants and cut a vase of roses...(then collapsed lol).

My hubby has been canceling trips to take care of me - and totes me over to pet my horsey kids on nights that i can make it - Thank God for Golf carts. I made it through my arthritis walk on Sunday (in a wheelchair with a head rest and an umbrella) but had a great feeling of accomplishment any way - think it put me on the road to recovery...our team collected about 9,0000 - whooopi.

Thanks Trish and Jim and all for getting me through this - the single riba at a time seems to really be healping with the nausia and tinitis - and since I cut the peg a smidge the migrains are subsiding and the heart meds are helping too. Just wish this dizzy, room spinning thing when I stand would mellow out....

Hugs...mikmo

[Wassup]

I'm quite relieved that you finally got to see a Dr. Re; your heart, dizziness, extreme fatigue, etc. I know how stoic you are, but you really had me scared. I know how strong you are too, but I'm not sure you do. VERY STRONG but not invincable! I know that you're home alone most days, and some nights, So, if you're gunna wait til you can hardly drag yourself to the loo, maybe you should get one of those First Alert Thingies, (in case you fall and can't get up).  Please take care of yourself, This Tx stuff is difficult at best, but it's not supposed to be lethal to the patient, just the virus.  I think of you every day and hope you're out playing with your horses really soon.  I know how much you must be missing them.  God Speed, Sweetie!!!  Hugs and hugs,  Ant B