Newbie and animic

Hi, y'all.  I'm 8 weeks into tx and this is kicking my butt!  Prior to diagnosis I'd wake up and hit the ground running.  Post diagnosis (gene type 3 and viral count just under 25,000,000) and since tx, I've managed to push through life with only a bit of a slow down - 'till last week.  I hit the wall.  When I called the Hep. Dr. on Monday last week, the nurse called Fri. the 21st.  I complained of extreme and worsening hedache and fatigue.  She said this was normal and treatment wouldn't be discontinued 'till wbc reached 1.2.  I replied that I wasn't looking for permission to quit treatment, just relief from worst symptoms.  She said I should contact my Internest re. symptoms.  My last bloodwork (7/14) results show: wbc is 2.8, rbc is 3.08 and hmg is 10.4.  Now, I live on a farm in a town with a population of 82!  My Internest (I guess that's what he is) is in the next town - big inough to have a real traffic light.  How do I talk with him and get him to give me some Procrit?  Also, will Procrit help with what I would consider migraine headaches?  Never thought I'd need help from strangers of join a support group - I'm a tough-as-nails sort of woman.  And, here I am needing y'all.  Thank you.

[friscosue13]

Have your Hep dr fax your bloodwork to your Internist.  I had my fourth shot of Procrit last Wednesday and feel significantly more clear headed and able to cope.  I still feel weak and get breathless easily and have to take it easy.  If I don't, I pay for it by my entire body rebelling with aches and pains.  But still, Procrit is a wonderful thing.  Hemolytic anemia can be life threatening.  This is not meant to frighten you, but to urge you to take care of this today.  If your bloods go too low, you may have to stop treatment.

The best to you!

[Kalio1]

Sorry you are getting hit so hard with sides. Really puts a crimp in the old lifestyle! I still have the headaches and I am heading into week 41 (I think), they seem to be worse the first few days after shot days. I take pain relief for the bone pain headaches,any pain you name it. It helps some, takes the edge off anyway. In the beginning of tx the headaches were constant but now subside on the third day after the shot, maybe yours will ease up, I hope so. Sounds like you are pretty remote, maybe your doc can order you something you can take on an as needed basis. Drink lots of water! This tx is a real challenge even for the tough amongst us. I usually have great endurance but this sickly nauseated out of breath  thing really limits your powers. Hope you get some relief soon. I know the heat is really bad in many places and heat tolerance on tx seems very low, stay cool and good luck.

[anise]

Welcome to the forum!  You will get an amazing amount of information here, these people are experienced, intelligent, etc.  

It sounds to me that you do need procrit.  You're HGB is at 10.4, and that's low.  Sorry I can't answer all of your questions, but others that have had your experience will be along shortly.

Keep us posted on how you are doing.

[Kalio1]

You might want to check with your ins. company and see at what point they will OK Procrit. Many won't OK it unless you fall below 10, and some won't cover it at all. I never have fallen below 10 and I have BC/BS and couldn't get it hope you have more luck. Maybe your doctor can put some pressure on them to OK it if they are stubborn.

[GrandOak]

From your discussion on WBC, you may  want to look at Absolute Neutrophils (ANC) and Platelets.  With your Hemoglobin (Hgb) getting low at 10.2, welcome to the club, I would question doc on Procrit.  But their discussion on WBC going to 1.2, I wonder if they are not more concerned with your immune system getting too low (Leukopenia).  In which case you may want to consider Neupogen.  Fortunately my Hep Doc explained that Neupogen is usually a one time tx of three shots in three days.  Procrit seems to be more of an ongoing tx for anemia while Riba is lowering RBC and HGB.

[friole]

Lori, Welcome

Scott and everyone has addressed the Procrit issue pretty thoroughly.

One thing of interest to me here is that the hep doctor said he would not discontinue treatment until your WBC dropped to 1.2.You are still pretty far from this but it needs to be watched. This is different from the HGB which is helped by the Procrit. While the Riba is knocking down the reds, the Interferon is busy destroying the white blood count.  However, there is a way to combat that too - with Neupogen.  Don't let the hep doctor take you off of treatment for lowered white counts when there is a solution.  It is odd to me for the internist to have to deal with this, but since you have your appointment Wednesday, ask him about this too.
frijole

[EquineLori]

Again, thank you.  GrandOak, absolute neutophils are at 1.0, platelets are still good at 182.

Also, I had a serious burst fracture of L1 from a fall from my horse.  Had one failed fusion and one instrument removal with hip bone graft to vertebre in March this year.  Now I'm in a stiff corset style brace 'till fusion is solid.  No horseback riding for a while, so I've gone back to little theatre.  Just closed a show I directed.  Was asked by the Board to direct a children's production for Christmas.  I said, "Sure!"  That was before I hit the wall.  Should I be prudent and decline now or hope Procit will be administered with good results?

[GrandOak]

I guess you would need to evaluate how the rest of the sx's of this tx is affecting you.  If you are like me and it's more the anemia and lekopenia, then I've found the Procrit to be a big help.  I'm just trying the Neupogen for the lekopenia, but after two shots I'm starting to feel a bit better.

One problem I ran into was first GI doc cut Riba instead of adding Procrit tx when Hgb hit 9.  So we've been struggling over the past 3-4 months to get Riba back and adjusting Procrit along the way to at least keep my Hgb in the upper 10's.  I just increased by Riba to 1400 mg this weekend, even thought Hgb was 10.8 last week and may need to boost Procrit above 80,000 U SQ to handle the Riba increase.

I guess as NYGirl, Beagle, and others here who have battled with the anemia will tell you, after awhile you body does begin to compensate for the change and one does not feel as battle worn as the first time you tank to the low Hgb numbers.

I find that if I can just stop and sit awhile to handle the body fatigue, the mental fatigue and fog are not severe enough to keep me from functioning.  The problem is that this tx affects everyone differently and one can never predict how it will affect you until you're into it.

[Kalio1]

I have ot used Procrit but i being on this forum over a year I have seen many who have and they all speak of a great improvement i how they feel after starting Procrit. It takes a few weeks to kick in but from what I hear it really improves quality of life.
Ouch! That horse fall must have hurt. I am glad the fusion looks like it is healing now. I fragmented L4-5 ad had it repaired, what a improvement. Hope you cotinue to improve.
Glad you joined us here on nthe forum.

[Pauly Boy]

Welcome aboard Lori. The one thing for certain is many times nothing is certain. The symptoms for the illness itself are varied and inconsistent. The length of treatment is different for the different types of Hep C. Different doctors will assess the illness differently. The sx of tx are different for everyone. And unlike many illnesses we need to wait a good amount of time after tx to see whether we will be "cured". I know right about now you're saying thanx for all the positive feedback Paul... Well, t he good news is that many of us have and are going thru the low Hemoglobin count thing and the answer is usually procrit. I noticed my energy sapped, my fatigue and shortness of breathe realy spiked and my week 4 labs showed RBC and HMG were down.  I worked thru it with my doc and within 2 days the procrit was delivered and I started it right away. It took about 2 weeks for the procrit to start working. Many docs use 10. HMG level as a benchmark for treating with procrit but as with many things in our tx this is not set in stone nor is it a required number for the insurance companies to OK the use of procrit. My HMG was 10.4 when I started on procrit. My fatigue and shortness of breathe were drastic along with the amount my HMG level dropped in the week. Keeping communications open with your doc is critical. If you don't tell them they won't know what is going on. Friscosue suggestion is right on: get all your records to your HepC doc ASAP. As a sidebar to this; dealing with the uncertainty and uncontrollable nature of so many things in our illness has been a very humbling but enriching experience. Usually I would have dealt with this with professionals only but as I went on thru the process I found out that I needed to talk with folks that have what I have, have done what I was about ready to do, and since there were so many differences of opinions about everything, I needed to talk with those who are going thru it. Finding this board was a life saver! My doctor has even asked where I had picked up all the knowledge about Hep C: I told him " Go to the Board, Doc". I wish you good luck with all your challenges and opportunities in tx... Pauly

[Dale_Ray]

Lori:
I would imagine that most of us preceived ourselves as "tough as nail kinda people" before treatment started. It's humbling and nice to know there are people everywhere that will try to help a person when they are down. These folks have pulled me up by my bootstraps to many times to count. If you get the doctor to document the need for a drug due to your medical condition the insurance company will fold its tent or take on the liability of your condition. I don't think they will want that. You just have to twist them by their forked tail or pull there little red horns back really hard. Best of luck to you and hoping your town one day has a traffic light and I'm not talking just a flashing caution light either. Dale

[friscosue13]

If insurance won't be responsible, many drug companies will help out.  If that proves to be the case, I would suggest you and your doctor best use your energies at this time to have the drug companies provide rescue tx.  You can always fight your battle with insurance when you're feeling better.

FIRST THINGS FIRST.

And stay in touch with the folks on this forum.  I'd be a confused and uninformed mess without them.  Let us know what happens.

[EquineLori]

Thanks for such rapid responses and good advice.  I've an apt. with Internest Wed.  Will keep you aprised of outcome.  Again, thank you.

[52TELE]

Hi Lori...
My experience with Procrit has been a really good one , I have had no side effects from it , that I could determine . As my hgb dropped things got pretty bad for a while . it really started to kick in around 3 weeks after the first shot , maybe a little less but I started feeling better about then.

When my 12 wk PCR came back , I had not acheived the UND we all hope for and had to retest 4 wks later. I decided that 8 days before the test I would bump up my Ribavirin by 1 pill per day in hopes of clearing before my next test.My test came back UND and my HGB had dropped from 12.5 to 11.7 because of the additional Riba. I could feel that it had dropped.
Anyway , good luck with your CBC . It may get worse before it gets better , but it will get better.

[EquineLori]

Thanks for your wise comments!  By the way, it's the Hep. Doc's office that is saying they don't deal with the sx of tx and are shoving me off to the GP.  How wierd is that?!  The good news is that all my post tx blood work has been drawn at the GP's.  But does a one light town "Doc in the box" even know about HCV tx sxs?  Armed with what I've learned from 24 hours reading y'alls comments, I'll give the GP his chance to shine tomorrow.

[EquineLori]

Thanks for your comments re: Procrit.  Sorry to hear of your 12 week UND results and how clever of you to up your Riba prior to second testing.  On first meeting with Hep Dr. I was told to expect a 100% UND after 12 weeks.  I beamed at him and said, "really?!"  He then back peddled and said that if after 12 weeks I acheive a VL count around 2,250,000, I should be happy.  I had no clue how devistating that would feel.  Good luck with continued UND results!  How much Riba are you prescribed to take?  I'm 1600 mgs/day.

[FlGuy]

1600 mg per day is a lot of riba.  Someone, please check my math, but if you consider the dose as 15 mg per kg of weight per day, then that would be a weight of 233 pounds.  Lori, do you weigh that much?

[EquineLori]

Yeah, I take 8 X 200mgs of Riba per day.  Thanks for the info. - I see the GP tomorrow as my Hep. Dr. (perhaps it's just his nurse) doesn't treat sx of tx.

[EquineLori]

Heck no!  I started tx at 125 and am now at 112-114lbs.  I'm also injecting the full .5mls of 80 ug of interferon alfa 2b.  Since I've most likely had this since 1980 with a blood transfusion and my vl was 25 million at dx, I don't mind taking a giant dose.  I do, however, want sone sx relief!  And thanks for the new piece of info. re: tx dosing.

[EquineLori]

Nah, the fall from my horse and receiving a burst fx was nothing compared to this, although I did pee my pants when I managed to roll from my back to my hands & knees!  Then I got back on my horse - wet pants and all.  I went to the doc-in-a-box 3 days later.  Ortho guy the day after that and the Neuro the day after that.  How did you break your back?  And I'm really concerned about how all the sx of the tx is affecting the healing of the bone graft.

[FlGuy]

Looks like you should be in the neighborhood of 1000 mg/day.  That's 5 riba - assuming that each is 200 mg. You're eating 8 a day.  No wonder why the stuff is kicking butt.  I'd suggest that you talk to your doc about that amount.  Some docs/patients may have a working theory to ramp up riba to get the blood saturated.  But 1600 for a 125 lb person througout treatment sounds like a lot to me.  Kalio (a geno 3 relapser) has been taking 1400-1600 a day without (I think) a lot of devastating side effects.  Give your doc a call.

[Kalio1]

Yes I took 1600 for 6 months I am now taking 1200-1400/day.
The doctor wats to lower it to 1000 as I have lost weight but I am going to talk to him about that as I have not had adverse effets at this level, I'd be OK with 1200/day at this point as I am sure I am at saturation and have been UND since week 4.
I worked on losing weight to better my chances it would suck if then the doc lowered the riba, seems counter productive. Doesn't matter, I do have extra so can stay at 1200/1400 a day but why take more if it isn't neessary.