How soon does the anemia kick in?

[flcyclist]

I've just begun the Peg/Copeg treatments last Thursday after putting it off for nearly six months since diagnosis.  I had a cluster of meetings and travel which I wanted to get behind me before beginning treatment.  I've been anticipating this and dreading it for a very long time and it's finally here.  Unfortunately, I have genotype 1a which means 48 weeks.  Oh boy!

The appointment to administer the first injection went well, the nurse was awesome, and I figured I'd spend the evening under a blanket with the chills or sweats.  It didn't happen.  I'm doing my best to continue normal activities with this playing mind games with me.  I went cycling on Friday and Saturday, about 30 miles each day, but decided to not push it to the level I usually do.  I want to be cautious to not overexert, but don't want to give up something I truely enjoy.  I did notice my heartrate is up a bit and I seem to be sweating a bit more than normal, but its been hot in Florida, so kinda hard to say if its the meds.

I know it won't continue to be this easy after all the reading that I've done.  It sounds like the anemia will continue to build up and peak around week 8-12, so I plan to continue to ride until I struggle, and will back off accordingly.  It sounds selfish, but I will seriously miss the riding.  I also realize if I don't go through this treatment and give it a chance to work, I might be checking out earlier than planned, so no complaints from me.

I'm just hopping on this rollercoaster and I'm anticipating a rough ride. I hope to pop in here to read, learn from others and share my experience.  I'd appreciate hearing what others have experienced the first few weeks of treatment and how the symptoms progress through the weeks.  I do realize everyones personal experience is different, and thier symptoms can vary dramatically.  

Thanks in advance.........

[flcyclist]

Some great information and some great people here.  Thx so much.

I look forward to week 48 - such a looooong time away,  Ugggg.  Where's that genie in a bottle?  

[mikesimon]

That looks very promising to me.
It's really not the ribavirin dose that counts - it's the ribavirin plasma level and if you're anemic you must be getting enough.

Good luck,
Mike

[sherritaylor12]

Thanks Mike, I needed that bit of encouragement.  Mine was very early on anemia with dose reduction of riba early on.  Still anemic and still only 800 riba.  Maybe SVR is in my future.  Also still <25 but detectable at week eight.
Sherri

[mikesimon]

Studies show that early onset anemia - within 8 weeks - is a positive predictor for SVR.

"Gastroenterology. 2010 Nov;139(5):1602-11, 1611.e1. Epub 2010 Aug 16.
Hepatitis C virus treatment-related anemia is associated with higher sustained virologic response rate.
Sulkowski MS, Shiffman ML, Afdhal NH, Reddy KR, McCone J, Lee WM, Herrine SK, Harrison SA, Poordad FF, Koury K, Deng W, Noviello S, Pedicone LD, Brass CA, Albrecht JK, McHutchison JG; IDEAL Study Team.
Collaborators (107)

Al-Osaimi A, Bacon B, Balart L, Bennett M, Bernstein D, Bini E, Black M, Bloomer J, Bonilla H, Box T, Boyer T, Brau N, Brown K, Brown R, Bruno C, Cassidy W, Chung R, Clain D, Crippin J, Dalke D, Davis C, Davis G, Davis M, Felizarta F, Firpi-Morell R, Flamm S, Franco J, Freilich B, Galati J, Galler GW, Ghalib R, Gibas A, Godofsky E, Gordon F, Gross J, Herrera J, Herring R, Hu KQ, Israel J, Jacobson I, Joshi S, Khalili M, Kilby A,

Johns Hopkins University School of Medicine, Baltimore, Maryland 21287-0003, USA. ***@****


Hepatitis C virus (HCV) treatment is frequently complicated by anemia from ribavirin (RBV)-related hemolysis and peginterferon-alfa (PEG-IFN)-related bone marrow suppression. We investigated the relationships among treatment outcomes, anemia, and their management with RBV dose reduction and/or erythropoiesis-stimulating agents (ESAs).
METHODS:

We analyzed data from a trial conducted at 118 United States academic and community centers in treatment-naïve patients with HCV genotype 1. Patients were treated for as many as 48 weeks with 1 of 3 PEG-IFN/RBV regimens. ESAs were permitted for anemic patients (hemoglobin [Hb] 3 g/dL, 43.7%; ≤3 g/dL, 29.9% (P < .001). Anemia occurred in 865 patients (28.6%); 449 of these (51.9%) used ESAs. In patients with early-onset anemia (≤ 8 weeks of treatment), ESAs were associated with higher SVR rate (45.0% vs 25.9%; P < .001) and reduced discontinuation of treatment because of adverse events (12.6% vs 30.1%, P < .001). ESAs did not affect SVR or discontinuation rates among patients with late-stage anemia.
CONCLUSIONS:

Among HCV genotype 1-infected patients treated with PEG-IFN/RBV, anemia was associated with higher rates of SVR. The effect of ESAs varied by time to anemia; patients with early-onset anemia had higher rates of SVR with ESA use, whereas no effect was observed in those with late-onset anemia. Prospective trials are needed to assess the role of ESAs in HCV treatment."

http://www.ncbi.nlm.nih.gov/pubmed/20723545

[Anne1717]

HI - my blood crashed around 6 to 7 weeks but the doctor is waiting to see if I recover on my own before prescribing Procrit. .  As hard as it is to stay active, Isobella and June are right.  I find that getting the oxygen going through my body does seem to help and it certainly helps the mood.  

Good luck - it will be fine

Anne

[Isobella]

My reds and whites took a hit at the 7 week mark. They were stable from that point on tho.  HGB hovered at 10 and neuts were around 500 if I remember correctly.  Felt kinda puny, but definately doable.

Excercise could be a benefit to you.  Even if you are not able to continue the intensity you are at now.  In the beginning of my tx, I wasn't excercising anywhere near my pre-tx levels and soon found myself dealing with the consequences of inactivity.  It was much better for me once I figured that out and began walking again.  Not the same number of miles, but I always felt better afterwards.

Stay hydrated and learn to love cycling by moonlight for a while =)

Good luck to you!

Isobella

[flcyclist]

Thanks for the comments.  Nice to hear from those that have been through it and have a depth of knowledge.  I have a blood draw in 2, then 4 weeks, so we'll see how the hgb changes.  In the meantime, plan to continue the 30 mile rides, but back off on the 50-60 mile fast rides.  I suspect this will change in the coming weeks.

[Trish77]

Everyone is different but I tend to see the drops happen at 4 weeks and beyond.  I ran a 10K the first weekend after i started treatment and 4 weeks into treatment, that was definitely it for the running when my hgb went to 10.2 (though I had stopped by choice earlier).  One fellow I knew continued his swimming for the duration of his treatment.  That's considered to be a lower intensity exercise and if you like to swim, it might be a reasonable substitute.

Good luck with this overall.

Trish

[James10500]

Oh and it doesn't sound selfish at all to miss your "normal life". I was on tx from 8/13/10 to 1/27/11. I missed riding this past fall big time, and skiing the first half of the winter.  

[James10500]

My Hematocrit dropped from 48 to 32 while on treatment. The RIBA takes about 2 weeks to take over all your RBCs from my experience.  Combined with the lack of RBC production I couldn't put in many miles at all.  

Good luck with tx.

[Junebug812]

My hgb dropped from the 13's to 9.9 in 5 weeks, and then to 9.7 at 7 weeks. I was put on Procrit. I too was active before tx, cycling, intense yoga, and the gym. I'm sorry to say that I am inactive at this point (21 weeks, geno 3, 3 more weeks to go). As Bill says (he's great and has lots of accurate info), it's good to have a plan and I hope you are able to continue to be active, though you may run into some limitations. Oh, and the sun thing, be careful! I learned the hard way about the photosensitivity thing. Ouch.

Best of luck and keep us posted.

June

[flcyclist]

Yes, I do lather up and drink often while cycling.  I also go early morning or late evening to avoid the heat and intense sunlight.

I never thought I'd be dopping with Epo as a cyclist, but now might have a valid reason.  :)

Thanks for the quick replys.

[desrt]

" I do realize everyones personal experience is different, and thier symptoms can vary dramatically."
That's the truth.

On one end of the spectrum I knew a lady whose Hgb and WBC counts dropped so quickly she had to discontinue at 16 weeks even using epogen and neupogen (fortunately she was geno 3 and got a sustained response.) On the other hand, I took 1200mg/day and my levels stayed so close to normal range, my gastro used to ask if I was actually taking all my meds.
Just be sure your doc is on board with your exercise program. Good luck.

[Fnzol]

Experiences vary across the board.  Some people tank quickly, others stay at fair levels throughout.  

For my own data point, my red cells, HCT, and HGB all fell below normal levels as tested at my week 4 labs.  They were sub-normal for the duration, but never condition red low.  10.8 was my lowest.  

[Bill1954]

Hi there, welcome to the discussion group.

Not all of us develop significant cytopenia; probably 30% will require intervention of some form during their course of treatment, the others run around with their tails between their legs a bit, but otherwise escape without too much trouble.

It’s likely you’ll find out in the first six to eight weeks how you tolerate the ribavirin and subsequent anemia, although there are some that get into trouble later in therapy.

Generally, intervention is considered at around Hgb 10.0 g/dL; Procrit (epo) is usually preferable to the alternative which is dose reduction of HCV meds.

It sounds like you have a good plan in place; the cycling will be self limiting in the event your blood values begin to dip down significantly.

Be sure to remain hydrated, and also keep in mind that some people develop photosensitivity and burn easily; so heads up in that wicked FL sun!

Take care and happy trails—

Bill