Help! Low labs

[nikkihorseluvr]

My labs have dropped suddently, and I am weaker.  Here are some of the most important..WBC  3.0, RBC 3.79, HEMOGLOBIN 11.8,  Hemocrit 34.4, Neutrophils, absolute 1.3.  All were high normal when I began this trip to hell five weeks ago.  The dog says these numbers are fine, and the insurance co. doesn't use rescue drugs yet!  I pay cash for all of this fun.  I am out of breath, extreme fatigue, and no one seems to care.  Help please!!!!!   Nikki

[nikkihorseluvr]

Oops......the doc not the dog......Freudian slip

[Dale_Ray]

Nikki I don't know how long you have been on treatment but usually after a few weeks the counts that are going to give you trouble start showing up. With me it was about 6 to 8 weeks into treatments. That is when I started having trouble with ANC and Platelets. Sorry you are having a tough time of it. Your symtom are exact to mine and most of the crew. The breathing bothers me most but fatigue and loss of mental clarity is bad as well. Make sure your dog (doc - ha)  stays on top of testing you and I know it is tough if you are doing this out of pocket. Good luck to you. Dale

[FlGuy]

Welcome to hell where dogs prescribe and docs bark.  for some people the insurance will not cover low hemoglobin (anemia) until it hits a specified level, like 10.0 for example.  You are north of that at 11.8.  What likely happened is that in the last five weeks of meds you hemoglobin (hgb) dropped by a large percentage (like from 16ish to 11.8) which would give you that lousey fatigue.  Although not necessarily in the danger zone it is still impacting you. Not sure if there is a way around getting your insurance to pay, maybe give them call and talk to your doc.  Maybe there is a way that the doc can prescribe/administer and still stay within insurance guidelines.

[amirtracy]

Hi. Sorry you're feeling like cr*p. your numbers aren't that bad, but it's all relative and where one person might feel okay another feels terrible. However, some dr's will prescribe before your hmg goes under 10 and since you're paying cash? maybe you could get a scrip since there are no insurance issues.  I'm in the same boat. No insurance, paying for labs and dr's appts. My hmg is 10.2 but my dr. won't prescribe until under 10. Are you on Commitment to care? I have all the links for free procrit/neupogen etc.. if you need them. Also FYI- Quest Diagnostics has a financial aid program for labs. The only consolation i can offer is that you do get used to the drops if they aren't too sudden. I was having trouble breathing/weakness etc. around weeks 5-12 but at week 17 i'm feeling better. I think you just get used to it. Fun stuff huh? Hope you feel better and i'm sure some smarter folks will be along.   tracy

[GrandOak]

Take heart!  In comparison your numbers do not seem to be too bad.  Hopefully the anti-anemia meds can be prescribed before HgB drops to 10 or less.  Mine dropped to 9.8 before my first dog decided to throw in the towel.  But given that the towel she was so quickly to drop is my life, I decided to find a different breed of dog who new what they were doing with respect to HCV.

What a lesson I got in how little most dogs know about this condition and how patient advocacy is oft times crucial.

I also learned that 11 or better is not as bad as I first thought when I dropped from 14.  It certainly is *MUCH* better than the fatigue I felt when at 9.8.

I would suggest that given the lower WBC and ABS Neutrophils that one be cautious about large gatherings due to the repressed immune system they represent.

[NYgirl]

Sorry you're feeling bad but with that high a hgb they are going to wait until you get much worse.  Unfortunately it's a money driven world and the medications are VERY expensive (a box of ten is over $6,000).

Once you go under ten you will really be feeling like garbage so take it EASY on stairs and driving and stuff.

I know how horrible it is = I went from over 15 to only 9 in about a week and once the med is prescribed and taken it takes WEEKS for the Epogen to kick in....but once it does you will feel SO MUCH BETTER!  Like a MIRACLE!

Hang in there! We have all been through the hard times and I can tell you from experience...this will PASS.

You are going to need to get assistance for the medication I'd imagine with that cost so best of luck.  I am SURE that they will work it out for you, the companies these days really seem to go out of their way to help.

PS My hemo is at 10.5 now (week 38 - 40 not sure which) and it's been there for MONTHS.  Eventually your body will handle it without much problem.  11.8 looks like a miracle number to me...so be happy - it's not THAT bad :)

[nikkihorseluvr]

Thank you.  This has not been fun.  I am sent to a different doc for every side.  so far I have 4.  I would have thought that the hepatologist would be able to handle some of the sides.  One doc told me to get outside and walk in a park, go to the mall, or hang over the grocery cart if I felt faint.  Oh the compassion!!!!!!!!!   I cannot make it up 5 stairs without feeling faint.  Nikki

[NYgirl]

Did you call and find out about the assistance program for it?  I would do that NOW before you get to the point where they prescribe it for you.  It's $6,000 for a box of only TEN and for the first few months I was taking two a week - so that 6 grand only lasted five weeks. Once you go on it you pretty much need to stay on it the whole course of tx.

If you are feeling this bad imagine how tired you will be when you get under 10 - I'd call now beforehand.

When I was at 9 it was HORRIBLE.  A 6 point drop in just over a week was DEVASTATING.  Remember it's NOT just what number you are but how FAST you go there.

That is why NOW at 10 it's fine...I don't feel hardly anything noticeable.

[sfbaygirl]

I had a big drop in ab Nuets a few weeks into tx. I went from 16+ to 11. I felt like you do. I couldn't walk across my house without sitting down for 5 minutes, out of breath, horrible fatigue, couldn't think straight (not that that is a whole lot better now LOL) but I know how you feel.

I don't think I could have made it below 10. I called my hemotologist and he gave me a shot of aranesp while I was over 11. Not sure if there are free programs for this drug, but you most likely could get it with your numbers. I don't know how I would have made the wait to get the help I did. It still took two weeks for the drug to work and to feel better. It raised my Neuts. and I feel so much better.

If you are paying, I don't know why your dr. wants you to wait. If you can't afford it call the drug co's.  Aranesp is given to people over 11, so perhaps you can get it. Get on the phone and find out, it's the  only way you will find out.

The suffering from anemia is devastating. So far it was the worst part of tx for me. I am on shot #8 this week.  

Welcome to the forum! Let us know how you are doing.

[cuteus]

some of the studies I have read, the researchers use Procrit when pts get to 12! But the mutts out here wait until you are dead or almost to prescribe it. If you have a family hx of cardiac problems, you can insist that you do not want to take the risk of provoking anything, and demand intervention. Quality of life while on tx should be as important as reaching SVR.
btw, I still have 4 vials that expire in 2007, if any dog will need a donation.

[NYgirl]

Aranesp is Procrit is Epogen...it's all the same thing. Different names.

I knew when I was reading the info that it seemed that way and FLGuy was right it is.

So pretty much it depends on doctor / insurance protocol I believe - most docs will NOT give rescue drug prescriptions until around 10. Stupid.

PS As it DOES take 2 - 6 weeks for this to work...is your doctor still only letting you have a shot every two weeks?  Since your hemo dropped five points this doesn't make any sense at all really...

Have you talked to him about getting a prescription so you can take it yourself?  If he already gave it to you at 11 I don't see the problem for writing a weekly script (since it takes so long to potentially work!)

[sfbaygirl]

I know it is the same, but a pegalated form. My doc told me to take it when my CBC's go down. So I am really on a roller coaster. He doesn't do the procrit, he likes doing it in the office, that is why he gives aranesp- it lasts two weeks. It has been three weeks, I don't feel anemia, I was 13 last week, but I will check my CBC tomorrow for levels. If low Hgb or Neuts I will go get a shot tomorrow. Hopefully I can keep from going too low it I keep on top of it.

I am having very achy bones today, could this be a sign of low WBC or Hgb?

I REALLY want to stablize on this tx, so I know what to expect day to day. This roll of the dice each week can really throw you for a loop.

[NYgirl]

You know what I think it really is something that just comes in time for most of us when we get sort of "used to" the treatment it levels out.

I know no matter what I did it really just seems like time helped the most.  I had a very hard time with sides in the beginning I was a physical MESS but the guys in here wouldn't let me give up...and now...things are ok.

Sometimes you just have to realize how MUCH your body really is going through and let it have it's aches and pains and not worry too much and just wait it out.  Aches and pains and numb fingers and toes and GI problems and tongue sores...there are LOADS of little sides that just don't get the main mention as "sides" but they surely are.

[sfbaygirl]

I knowwwwwww! Whine, whine! I just can't like it! These sx are yucky!

Somebody that owed me a bunch of money just paid me. I was ready to overlook my whining and be happy, until I realized the stupid check was dated for 2007! What a jerk!

[NYgirl]

I'm sorry I would "fix" that 7 so fast my hand would be like LIGHTENING it's be writing so fast!  Yay for YOU how great is that! I LOVE LOVE LOVE money but never seem to have enough coming in!  ;)

Hey whining is the one thing we do BEST! Heppers are EXPERTS and we EARNED IT!

Everybody who comes in here should have to read a disclaimer saying "please don't take what the people are saying too seriously...most likely they are having cr*ppy sides and whining away"!

And let me tell ya I can be the BIGGEST BABY of the bunch...so don't EVER feel bad about whining it's your right as a hepc victim!

:)

[sfbaygirl]

I too would change that 7 in a heartbeat, but John who also got a big fat check, is a lawyer, and he says we can't. Usually if he gives me a check, I am at the bank as soon as he leaves.

WAAAAAAA!  I feel like whining today. I have my comforter up to my chin and just turned down lunch cuz' I am too achy and have chills. Sounds like you just want to go home home to your comfy space and whine too. I say I was impressed that you cleaned 5 big garbage bags outta your room. I started to do that yesterday, as we are getting carpets, NOT because I wanted too. I have so much more to go. Had some kids pack the 9 bookcases of books. I have to hit my closet Thurs. at least the housekeeper will help me.

I also got a great call from my attny for my worker's comp claim. I am suing my school for disability b/c my PTSD is so bad, I can't even go to Oakland where I was teaching. Some teenager attacked me and I had no administrative support and I fell apart over a year ago. Anyway, he said my doc says I am 70% disabled and this could mean some money to me as well. The money isn't going to be much, but I needed to do this to get my power back. It has helped do that. So, while I am happy I still want to whinnnnnnneeee! WAaaaaaa

[Pdilly]

Gosh you two seem so strong to hang in there.  I sure hope I can do it when it is my turn. Ugh and to have to work too.  I guess I will have to put myself in gear and just march forward in September.

[sfbaygirl]

If you are deterimined to tx, then you can deal with whatever comes your way. I definately don't think I could do this if I was unsure if I wanted to tx.  

It was worse waiting to tx. I wanted it NOW. I am glad, most days, that I started, but I'm only on shot #8 tomorrow! PCR is the next waiting game. Having possitive thoughts!

I think you will do great! You are learning so much and getting support BEFORE you start. That is good. I think I started a month before tx posting here. It has helped so much. My husband is jealous. He wants his "own" group to go to.

We will all be here to help you when you start, so don't worry about it now. Have a good summer and enjoy yourself!

Most people here do work. I stopped b/c PTSD, not Hep C. I am glad I am not working though. Working with 160 teenagers all day would kill me!

[Pdilly]

Gosh 16 teenagers....tx has to be better.

[sfbaygirl]

Hahahaha! Yep, thinking about being in Jr. High is a toss up to tx!  Although I did enjoy most of the kids. It was just a few that were REALLY hard to deal with, like tx. They also were like the Jumanji Game, or the little Hep C virons. Really hard to deal with. LOL.

That kind of energy required to teach is WAY over and above what I can handle at the moment. Luckily I have a husband and some real estate that I can live on for the moment.

Do you know when you are starting tx in September? Do you have symptoms now? I sorta wish I was waiting through the summer, but 10 more months needs to go by more quickly.  

I just hope I can keep all my labs in check so I don't get pulled of tx. Always one more thing to worry about!

[nikkihorseluvr]

I have shared this before.  My income is low, but my new hussband"s is not.  I have tried EVERY assistance group.  I do not qualify.  Since I am paying cash, I have no idea why the doc won't send me to the oncologist for the shots.  I will be ruined financially for the rest of my life, and they think that the meds make you depressed!!!!!   Nikki

[sfbaygirl]

Sorry, it's hard to remember everybody's info. Yuck, sounds like that would be hard. I just don't understand why your dr. won't give you the drugs. You don't have to go by ins. guidelines for when you are able to get the procrit, so what's his problem? Can you ask him  that? It sounds like he is treating you like you have ins.  

Can you call a hemocologist yourself or do you need a referral? Have you asked your dr. for one?

He doesn't sound very sympathetic. Is he against rescue drugs? I would call and call and let him know how bad you feel. I would consider a new dr. if that were the case. Do you like him?

I too have little income and my husband has a lot. Thank goodness I have Cobra ins for a year. I told him if it comes down to it, we may have to divorce for me to get tx if we don't have ins. next year. Awful and I don't think it will happen, but it is a tough call. We haven't been married very long either.

Call DR and tell him everyday how bad you feel. Hopefully he will listen!

[beamishboy]

don't get around much anymore-i can't keep up with all the threads&posts;right now i'm going into week 32 and the brainfog is hangin heavy.....see,i say this and all i'm really saying is-HELLO everyone.....my WBC has dropped and now i gotta take neuprogen,,,so what's it all about???........any info is appreciated.
nikki-welcome to the ring,sounds like my hgb drop -16.5 to 10.5 -should start procrit sooner rather than later-the loss of oxygen kicks yur butt! get some quik&it's worth every penny!
sbfgirl-the procrit made my bones ache-making blood is work&we're pushin it w/ drug stimulation
everybody hang in there,Be Well and GOODLUCK

[sfbaygirl]

I am NOT taking Procrit. I had one shot of Aranesp like 4 weeks ago and the Hemoglobin is creeping down again, but not bad (12). If it hits 11 again I will get another shot.

These rescue drugs are a pain. I had to get a shot of Neulasta b/c my ab Neuts went to .7. I slept for 16 hours everyday for a week. Achy, headaches YUCK.

Flguy has taken both Neulasta and Neupogen. I think he liked the Neupogen better. It lasts a week (instead of 10 days) but he thought the sx were much less. The cost of Neulasta is $3500. a shot! Not that I paid for it, my dr. likes it better. Neupogen is only $400. Not sure what sx there are with it.

My dr. wants me to monitor my labs and come in ONLY if my #'s are down. I am not on any rescue drug every week. I guess this is good. I will let you know as time goes on if it is the roller coaster ride I am imagining.

Hope this helps! I hated getting the Neulasta, b/c I didn't feel THAT bad. Sounds like you are feeling pretty bad. The neupogen/ neulasta work very quickly, so if this is why you feel bad, it should help.

I don't get around much anyway on tx, so I can't tell what's doing what yet. I am waiting for my sx to schedule themselves and I will know what the heck is making me feel bad! LOL

[sfbaygirl]

"Too bad our husband's couldn't go out and have a beer and b!tch about their spouse's tx!"

John would LOVE that! He would probably fly to Santa Barbara just to do that. He keeps asking for a forum for spouses. He is having a hard time.  

I used to do the cooking, caring for the household etc. too. Now I can't do it. Luckily we only have John's daughter (10) every other week. John does a pretty good job shopping, if I write IN DETAIL what to buy! LOL  I try to cook simple things for her, and she likes to cook sometimes too. It usually depends how I feel, which is not good more than good.  

When his daughter isn't here, we eat take out or eat frozen stuff mostly. I have no appetite and can't think about food. He loves his burgers, so it doesn't bother him too, too much, YET!

I am trying to do things for him and with him, even though I don't feel so good. We went to the movies yesterday. I fell asleep through the whole matinee. When I woke up during the crdits, he said I could sleep though the second feature!

My son is now a senior at Berkeley! I am so proud of him! Congrats to your son. Are all your boys (except hubby) out of the house? I take care of the little grandkids overnight, thankfully all they want are "loops" cherrios. Boy, do I get warn out.
\
If you find that time machine, let me know. When are you done with tx?

[rawhide]

I switched "dogs" at 6 months and have never been happier.
When I hit 10 gms hgb, I really felt tired and depressed...and it was much harder to work and then recover from work.
My second doc immediately got me on procrit (still hovering around 10) even though I have the same insurance.

I am up to 11 gms hgb and feeling so much better, have energy now to make plans and enjoy life more.

So if you get lower, I would have a heart to heart with the doc and see if he will help.

Hang in there..this isn't easy