Anemia - Scared

[runningbrit]

I had my 6 week visit yesterday with Dr Mark Sulkowski's research assistant.  She gave me my FOUR week lab results:
I write the significant findings here:

HCV RNA PCR Taqman 2.0 - HCV RNA not detected.
HGB - 8.7 L
HCT - 27 L
RBC - 2.9 L
WBC - 2.28 L
Neutrophil - 36.8 L
Lymphocytes - 57.6 H
ALT - 15
AST - 29

Now Dr. Sulkowski emailed me two days after 4 week visit to reduce RBV to 600 and Peg to 135.   I have to say that I do not feel as anemic as I was.   They will let me know the result of the 6 week blood test tomorrow.

However....as I am on a trial I am not going to get EPO or transfusion and now I am worried.   I am sure Dr. Sulkowski will adjust meds.   I get to talk to him on the 15 March.

Any thoughts?   Thanks guys.
L

[hangingin]

Hi rb, you can adjust to 8.7, may take a little time. Mine went below 8 before they did anything. I was tired and winded but managed to work full time.   I am on SOC with Victrellis.  8 takes some lifestyle adjusting, but you can do it.  Mine is 10.7 now, but I am on procrit also.  Don't jump ship, it is so worth it.  Good luck.  Let us know how we can help.  Ben

[runningbrit]

Thanks for the pep talk HI.   I do not feel as breathless but I am just worried about being pulled from the study.   The research assistant wanted me to talk with Dr. Sulkowski as I do not want to be pulled from study.   She tried to assure me that the meds would be adjusted before that happened.   I would rather lie in bed as a blob (oh wait, I already do that) for 6 months rather than get taken out of the study.

I appreciate your feedback.

[banarep]

I will tell you this, you have a great doc there.  he know his stuff.

[alice]

My post disappeared!

I wanted to tell you that I think you're doing great and that you're in good hands. You will adjust to being anemic. Move slowly, stand up slowly.... heck, do everything slowly! My Hgb dropped to ~8 and stayed there for ~ 6 weeks before the Procrit finally got me up above 10 but I adjusted... you will too. 

Also wanted to say that I've taken a break from procrit and I'm losing about 1 point Hgb/week now. the walking and stairs are getting harder but the pushups are getting easier! Thanks for helping me with that! 

take L. It will be OK.
alice

[runningbrit]

TO BR:   Congratulations on your new promotion!   Does it come with a whip and boots?

TO Alice:  Great job on the pushups (we do well what we do often) and thank you all so much for the reassurance.    I am sure Dr. Sulkowski with have some ideas when I see him on the 15th.   He is just back from an HCV conference in Paris so hopefully has picked up more info!
L

[Steph]

Hey Brit, pulling for you! I've got a feeling it'll be alright.

[greyrocker]

RB, hopefully the riba reduction will stop the HGB drop and it will either stabilize or better yet, go up a bit.

Try not to stress too much, you have on of the top docs in the world. I took several online training modules with him when I was prepping for my job, and he is fantastic!

 
GR

[B]

Lynda, you are a tough cookie and everything will be fine.  They know what they are doing!

 
B

[keith]

Don't borrow trouble

[runningbrit]

Got anemia report on 6 week labs today.   On the reduced dose of RBV and PEG it has gone from 8.7 to 9.6 so that is good.   Dr Sulkowski will talk with me at my next visit.

Thanks for all your support.

Lynda

[B]

Great improvement! Whew! Big sigh of relief! So happy for you, and you will start to feel better too. 

 
Your friend always!
Bye for now,
B

[greyrocker]

Got anemia report on 6 week labs today.   On the reduced dose of RBV and PEG it has gone from 8.7 to 9.6 so that is good.   Dr Sulkowski will talk with me at my next visit.

Thanks for all your support.

Lynda

Excellent! 

GR

[Scooter]

Runningbrit,

Went through it, you should feel like a $100 bucks in 10-14 days with your RBC headed to 10+.  I needed three injections of rescue RBC drug to up RBC from 8.x and RIBA reduction for 4 weeks.  Felt WAY better after all the Tx "juice" kicked in for the RBC.   Had no frickin' wind for about a month, so take it real easy if you have trouble catching your breath.

Two issues I encountered after resolving RBC were:
  - Uric Acid thru the roof; went on meds and issue was resolved in 60 days (discontinued meds at Dr. orders) 
  - The RIBA trashed my thyroid shortly there after and felt like crap until the prescribed Synthroid kicked in; still on the Synthroid.

Based on your thread I think you are doing great, when you respond to meds that raise the RBC you are generally good to go!!!

-Scooter

[runningbrit]

Thanks again everyone for your support.   Don't know how I would get through the day without you.