HGB is down to 8.7--worried about being taken off meds

[Mister beagle bailey]

Just got back from nurse who gives the procrit shot and my HGB is down to 8.7. She started giving me the shot every week, this started last Thurs. so it has only been 1 week since being put on it weekly.  I'm worried about being taken off the meds.  The nurse just called and their putting me on a supplement with iron.

Thanks for any help,

          BB

[LvdByGod]

my dr also put me on "folic acid" for this. the iron is a tough call. the iron helps grow red blood cells, but you are at stage 4 so you should be careful with excess iron intake. I'm sure the dr is aware of this and your liver stage. he probably thinks its a minimum risk. hopefully he will monitor your iron levels and ferritin in the blood tests to make sure it is'nt effecting your liver negatively. i pray you don't have to come off the meds. it does take awhile sometimes for the procrit to kick in. some folks say 2 weeks. it is good that the dr seems to be trying hard to avoid taking you off meds. i'm praying for your HGB level to rise soon!!!

sandi

[GoofyDad]

I was doing procrit every 10 days. Initially, it took 2 wks to kick in. Then I went to weekly, and quickly thereafter to every 5 days. Still, it took about 6 weeks to see benefit from the increase.

B12 and B6 are also important. I'm taking 1 gr of Folic Acid daily. How much riba do you take? Consider talking to the doc about stepping down one pill early, rather than waiting and having them stop tx.

I just stepped down 1 pill, and they tell me to expect quick results from that reduction.

Good luck Mr. B.

[sunspot]

Glad you hear your iron is okay. 8.7 is very low.
I had to bump my Procrit to 40K 2X a week. I'm 6 weeks post tx and had a CBC and a liver panel done on Tuesday. I hope my HGB is up.

All
My Wife made a comment to me about 3 weeks post tx, "you have come back from the dead". She was right but I still have a few bad days. Keep hope alive.

Dana

[jmjm530]

Already answered some where you posted below -- main point being that changes in Procrit dose don't happen overnight.  Regarding the iron, Sunspot makes a good point in having an iron stores panel run. Specifically, Ferritin and Transferrin Saturation (TSAT). Also consider having them run a serum b12 and serum Folate.  

-- Jim

[jmjm530]

Your name was in comment box because I thought you could help me remember "serum folate" but somehow my brain-fogged mind kicked in at the last minute.

-- Jim

[can-do-man]

Yeah right jim, your just sucking up to goof cause you know he has some extra riba. Your not fooling this fool.

[dyce]

I'm so sorry to hear your hmg. is low. I'm wondering why your Doc. wants you to take iron suppliments. Surrly they ran a liver panel on you before doing that but it won't hurt to make sure. I've heard from other web sites of hcv patients whose iron levels were to low and wre supplimented.

                 Keep your head up and you may need 2 shots a week of the procrit. I've read right on this forum of folks doing 2 shots a week. It may take the booster some time yet since you just started doing a shot once a week not but a week ago.

                 Tonite I'll remember you un my prayers,
                                                  Dyce

[Mister beagle bailey]

I'm not stage 4,I'm stage 0 grade 1,and the doc said to take the iron.  Thanks for the prayers.

BB

[Mister beagle bailey]

Goof--- Thanks i'll try the B 12 and 6, I also see the Dr tues. again will talk about uping procrit.  He did say he will after just calling me back awhile ago.  I feel better about that,after the nurse told me while giving me the procrit I was so up set my mind went blank and I asked no question.  This was not like me as I always have many question. I take riba 800.  Thanks  BB

Jim---I just saw your ans. to my post but it was maxed out. Both you and goof said 2-6 weeks for the procrit to work, so I'll wait and see.  Also had a iron panel, etc. because of the thalassemia before I started tx and every week more blood to see how I'm doing.
I think your sucking up to goof too, for the extra riba.  hehehe

Would you happen to have any extra procrit. :)
  
                                    Thanks BB

Dyce---I know, I was concered also about iron but they said to take it.  I guess at this point they are just trying to help me stay on meds.  I'll take the procrit 3x a week if it keeps me on tx, whatever it takes.  Thanks  BB

[Dale_Ray]

Beagle I don't know a lot of the technical jargin that goes on in here but just to let you know you're in my thoughts and prayers. I'm pretty sure God knows who Mister Beagle Bailey is but I'll remind Him again tonight. Dale

[sunspot]

Have you had an iron panel test done? Most of us heppers have enought iron. Too much iron can block your bodies uptake of the tx. Err on the side of caution.
Procrit takes about 2 to 6 weeks for it to kick in.

Dana

[Mister beagle bailey]

Yes and I also have talassemia (anemia) that I was born with.  I started on procrit about 6 weeks ago, but given only every 2 weeks until last Thurs.  Now I'll get it every week.

[amommy]

My friend Mr. Beagle, I am definitely thinking of you.  I hope it is just that you need to add a little more procrit to your regimen.  Hoping the 1x a week shots will do the trick for you.  I too will say a little prayer tonight for the Beagle :)  Hang in there!  

I just did #8 a couple of hours ago.  I believe this is going to be my half way point!  I guess we'll see how things play out, but at this moment that is my plan.  Time is starting to drag already and I KNOW how fortunate I truly am.  Sending positive thoughts and prayers out to all of you tonight.

[Mister beagle bailey]

Thanks for the kind words and prayers.  Hope shot 8 doesn't have you feeling to bad.  Did I understand you right that you are treating for 16 weeks? Your 2B like me right?  Brain fog and stress over this, makes me forget.  Is this what your Dr. wants to do?  That sounds like a dream, but I remember reading early on in the forum that some one came off meds at around 16-20 weeks and cleared.  Hope you have a good night with no sx's.

Thanks again,

   The Beagle

[OnAPrettyPoison]

I am so sorry - your pre-existing anemia added to ribavirin can't be fun.  The procrit seemed to work on me within a couple of weeks, but I know I was huffing and puffing going up and down stairs at work like nobody's business until it did.  Did you feel worse than the normal?  My hemoglobin fell so slow and it was so gradual it didn't really occur to me it was anemia.  They never let mine get much lower than 11 and it stabilized pretty quick.  They consistently have had me on the 10,000 a week.  I hope you can get fixed pretty quick so you can stay on treatment and get it done.

[LvdByGod]

sorry for that, i thought you were a 4. i'm sure glad to hear your only a zero. the dr probably thinks your liver is still working great so there's not as much to worry about concerning iron build up like there would be if you had advanced liver disease or decomp. i bet a little iron at this stage wouldn't be that bad for you. but, it never hurts to check up on these drs and make sure their thinking right. someone's gotta do it.

[DoubleDose]

I ended up doing two Procrit doses per week:  40,000 and 20,000, after my red blood cell count reached about 8.0, and it does take two to six weeks to see real results using Procrit.  You could easily go to 40k per week, and should start seeing benefit soon.  If need be, you could eventually go to 40k and 20k per week, and finally two shots of 40k per week, if your levels continue to deteriorate over time.  The biggest issue is keeping the Ribavirin at maximum values for your body weight.  This often means the difference between SVR and relapse.  It is a huge factor, so really battle to keep the Procrit coming as necessary.  Over 18 months of high dose PegIntron, and 1,200 mg. Riba I needed more and more Procrit, and eventually still got down near 8.0 again at the end of tx, even with the 60k of Procrit per week.  I got the SVR...so keep at it!!!!

Good Luck!!!

DoubleDose

[Mister beagle bailey]

Even with the HGB at 8.7 I feel fine.  A week ago I was having a problem with breathing, but didn't know it was the anemia. Now that I'm on once a week procrit of 40,000 units, I hope it makes a difference.  Did you mean to say your on 40,000 units of procrit?, because 40,000 is the norm. If this doesn't work they may have to put me on it more often.


               Thanks again,

                             The Beagle

[Mister beagle bailey]

I'm so happy for you,that your SVR. The dr. started to give me the 40k last Thurs. twice a week, before that it was every 2 weeks.  I told the Dr. that I will do what ever it takes to keep on the meds. I see him Tues. and may get another shot, got 40k today.  One thing I have going for me is I'm a 2B. I found out today that it takes the procrit 2 to 6 weeks to work.  

Being a part of this forum and learning from all, is the reason I decided to treat.  Knowing I'm not alone and having caring  friends here on the forum make it all possible for me.

                  Thanks,

                           The Beagle

[bobbyullc]

hey butch,
do not sweat it, you have a long way to go before being taken off treatment. if i was a stage 0 with only one year infected i would not even treat now. there are new drugs that do not affect hgb in the pipeline and you have 20-30 years to go. my opinion only! linda said ronnie is doing better. hope we can do a cruise this year.
bobby

[Mister beagle bailey]

Thanks for the prayers, I hope he remebers me.  Just tell himI;m the one with the long ears. hehehe

       Thanks again,
                    The Beagle

[NYgirl]

Why haven't they considered upping you to twice a week?  I had no response when it was once a week...it was taking 40,000 x 2 that really helped my RBCs to grow.

Is there some reason because of the Thal that you can't do MORE of the Procrit?

I tell you I would MUCH rather do that than introduce ANY iron of any kind into my body...helping the virus replicate is not in my plan.

I take Folic Acid, B12 and B6 also as Goof suggested. Plus a ton of other regular antioxidants and stuff but it seems that I read in here to take them so I do.

PLEASE be CAREFUL my friend with what you do. That LOW number can cause you to pass out while driving or walking down stairs or something and you could be HURT easily.

I just can't bear the thought of that.

Your twin....please stop copying me-NO PASSING OUT ALLOWED!

:)
Debby

[MrsOckert]

Since your dr told you to take the iron I wouldn't be worried about it.  I know of a few people that have to take iron because the procrit can't work without iron.  Because of your thalissemia (sp?) I'm thinking you might be low on iron.

Normally liver patients don't take iron, but it sounds like in your case its called for.   Good luck and I'm glad your feeling better.

[friole]

Hi, Beagle - it is amazing to me that you are functioning fine at 8.7.  I would be dead.  Have you convinced your daughter to cook with a little more fat since you got back?
frijole

[beamishboy]

I am just writing to send you all Luck&Strength .....Hope your HGB goes up & yu kick vrus butt-thinkin of you& wishin yu well,hang in there and don't let 'em get yu down,it's only vrus burning............

[Mister beagle bailey]

LvdbyGod---Thanks, that's what I'm worried about.  I should not take iron, with the thalassemia iron gets stored and builds up to an over does.  Over the years I was told never take iron.  Can't wait to see Doc Tues.  How are you doing?

Mrs.O---  Your right, I should not take iron with thal or with the liver hepC.  I'm not going to take it and wait till see Dr.
Thanks, How are you doing?

Beamish/friole---Yes, daughter is cooking with more fat and it helped a lot.  It is amazing that I'm doing fine with a HGB of 8.7, the shortness of breath is also gone.  Maybe the procrit is stating to work better, but I'm going to talk to Dr. about upping the procrit.  Hope yous are doing well, let me know how yous are doing. Thanks for your concern

NY girl---My dear friend,I can't take iron because of Thal but I'm going to take the folic acid, B6 and B12.  I will be careful but I'm not having any of the signs of anemia, except the shortness of breath last week and week before.  Maybe the procrit once a week is starting to kick in but I will ask for 2x a week. The thal doesn't prevent me from taking more procrit so that is a good thing. Don't worry won't pass out.

How are you feeling, better I hope.  Has the dirt bag been around?  Don't let him get you down, you have better things to worry about.  Know your well loved here by all.

       Your Twin  :)  Beagle

[OnAPrettyPoison]

I can really only post in the evenings, not at work, but you are RIGHT, it is 40,000 of the procrit.  My pup dog, Mr. Booglet helps me type when I am sitting on the bed.  I am going to deny the brain fog, and blame it on my helper!  I hope you feel better soon!

[Mister beagle bailey]

I have brain fog all the time, but sometime's it's my little beagle at my side causing the same problem as your.  Feeling ok, Tues. I see the Dr. and will ask to increase the procrit. I know I should not be feeling good with a HGB of 8.7, but I feel normal a side from the tx.
How are you feeling?

  BB

[OnAPrettyPoison]

I went and looked at the vial!!!!  40,000 is what I am on!  It kicked in at about 2 1/2 weeks.  My hgb went from 10.4 to 13 and it was amazing.  I was going for labs every week at that time.  Now I just go every 4 weeks.  My hair started coming out at about 20 weeks.  You know, I got an ear infection and the doctor told me not to get my ear wet and I didn't wash my hair for SEVERAL days, just kept it up in a ponytail.  It maybe slacking up some.  I still get a handful out of the brush every day or so.  That said, probably no one has noticed but me -I had alot to start with.  I just have to be careful when I am cooking!  YUCK!

Am planning on cutting it off for Locks of Love this Spring sometime.  Have to send in 10 inches, and I want it to still be past my shoulders.  Maybe I will keep enough to donate!

[cuteus]

I think that Procrit might kick in faster if the drs intervene before it goes too low, my hgb also picked up quickly after a couple of wks, maybe because I was still at 10.2 when the Procrit started.
as for the hair, I don't know what thread it was, but I mentioned that I could wrap one finger around my thining hair at one point, but now is back to needing my hand again. It is such a relief to see it come back so fully, even in places where the hairline was receding before tx.  The longer the hair, the more you notice it. I never did cut my hair above my shoulders during tx, so I suffered for it. My hep dr had suggested cutting it at the beg of tx and I almost bit his head off! It comes back beautifully. But during tx, the gray hair seems more resistant to falling than the dark, what's up with that?

[Mister beagle bailey]

I'm going to see Tues. what my HGB is and ask the Doc to  increase the procrit if I don't see an improvement.  With this anemia I don't want to play games.  Will let you know what happens on Tues.
I just saw cuteus post above mine and she said the hair grows in great, I've seen the same thing on hair posted  here many times before.  Your hair will be fine when all this is behind you.

        Beagle

[OnAPrettyPoison]

I don't have much gray, but what I do have is sticking in there!  I do hope it slacks up the shedding soon.  I did read that it came back, and some folks even said that they didn't have gray anymore....we can always hope!  Mr. BB, please post and let us know how you are on your hgb when you get back from the doctor.  Do you get your labs back that day?  My regular labs come back the next day generally, but the PCR takes about a week.  Rub your pup dog - that always makes me feel better!

[OnAPrettyPoison]

Thank you for asking!  I really feel pretty good today, it was #27 of 48 last night.  My main side effect is lethargy and like my pup dog (he is a cocker I rescued), Mr. Booglet I am shedding pretty good and it is driving me crazy.  My hair is to my waist and I am finding 3 foot strands of hair EVERYWHERE!  My brain fog is tolerable, more things end up in the refrigerator than should go there if you know what I mean!  I hope that procrit kicks in well for you really soon.  I didn't really know how bad the anemia made me feel until the procrit kicked in.  It was like I could breathe - now I look forward to it.  It may be in my head, but I feel better in a day or so after the shot, then it is time for the Pegasys and then I feel lethargic again.

[Mister beagle bailey]

On #27, your more then half way.  I wonder if there is something to take for hair falling out, I haven't had that problem yet. Since being put on procrit once a week I haven't had a problem breathing.  But I think it's to soon to kick in.  What # shot of procrit did you see a difference? Do you get 40,000 units per week?

           Beagle