Week 8 real winded

I cannot walk a flight of stairs without gasping for air, was not like this in the beginning, will it get better or worse? Any suggestions I do know about Procrit.

[merryBe]

even if your HGB is not down to 10 you can still submit it to ins.
you just need to insist your doc try. (they don't like to because they have to justify it,
but the criteria is not just the number but the overall health.

that winded means strain on heart and brain, with possible damage to both.
get you hematocrit and HGB numbers and advocate for yourself.
I told them I got down on the floor, to clean up a water spill, and could not get back up for 5 minutes..which was true.
telling them I was winded didn't work, an actual "incident" seemed to trigger a different response. Plus, my endocrinologist told me that Medicare would already have approved at my low numbers, and they are the strictest, so my docs knew another doc was already concerned with my numbers and that they had done nothing, that helped.

but do it now, cause it takes weeks to feel better...the longer you wait the lower it may go, and the worse you'll feel.
take care.  mb

[jmjm530]

What is your hemoglobin pre-treatment and now? Assuming your symptons are being caused by ribavirin-induced anemia -- and it appears that way -- then the only way you will be able to improve your condition is to reduce the ribavirin (and reduce your chances of SVR, take Procrit (epo), or have a transfusion if your numbers warrant. And yes, it could get worse, so bad in fact that it could force you off treatment or worse. BTW if I'm barking up the right tree, how come you're not on Procrit?

--  Jim

[Bill1954]

At least from an oncology standpoint, epo might be more difficult to obtain at higher Hgb levels.

From Amgen/Ortho-Biotech, dated 08/07/2008, and distributed to health care professionals:

“Therapy should not be initiated at hemoglobin levels [greater or equal to] 10 g/dL.”

http://www.procrit.com/procrit/assets/DHCP0808.pdf#zoom=100

I imagine MD’s reserve some discretion as to dosing parameters, but this recent labeling revision might cause some additional pause.

Bill

[jmjm530]

I"m not sure Procrit (epo) was ever labled for use during HCV treatment, yet physicians have reserved the discretion to use it. Even a few years ago, some posted that their docs/insurance companies adhered to the Hgb 10 rule. Yet, many others -- myself included -- received Procrit at higher levels. In my case in the high 11's. Again, physician discretion. The case was made then, and the case can be made now, that the rate of drop in combination with symptons is equal or more important than the absolute value. My guess is that physicians will still be able to use their discretion and the more sophisticated ones will in terms of starting Procrit, as they have before.

[Lady Lauri]

I was down and out by week 5 of tx. No more work, very little anything! My Hgb was near 10 and I couldn't have rescue drugs. I had to reduce Riba (BUT I was Geno 2b, UND week 4, huge difference in that with Geno 1) and even tho Hgb went up to 11 I was still terribly weak, walking to the mail box I'd be out of breath (short walk too!) With this being such a strain on our bodies-the energy is just not in us, anywhere-do be careful to not push yourself. It's not the same as being tired normally, where you make coffee, push forward. It will REALLY hurt you to push yourself right now. Until you get your labs, possibly rescue drugs, take it easy.

LL

[CoWriter]

The new labeling changes pertain to "cancer patients receiving chemotherapy".
Basically, the new warning says, in studies, Epo shortened overall survival and/or increased the risk of tumor progression in some types of cancer.  To decrease these risks, as well as the risk of blood clots and serious cardiac events, use the lowest dose needed to maintain the Hemoglobin between 10-12.

The medication insert has always recommended that the hemoglobin be maintained between 10-12....and starting dose should be based on body weight and the dose should be reduced by 25% if the Hemoglobin increases >1 gram in 2 weeks.  

But the truth is that during Hep C tx, those guidelines are not followed closely....the  starting dose is usually 40,000 weekly (not weight based)....the dose is usually not titrated and some docs don't check iron levels before starting the Epo.  

As Jim says, Procrit is FDA approved to be used for the anemia caused by other conditions (like rheumatoid arthritis and kidney failure) but it is not yet approved for the hemolytic anemia caused by Hep C tx.


"but this recent labeling revision might cause some additional pause."

Not if you use the right diagnosis CODE.  If the doc uses a hemolytic anemia code, it will get denied by the ins. company.  Using the chemotherapy code (V58.1), will get it approved and you don't have to wait until the hemoglobin is <10.

(Interferon is considered "chemotherapy")

[Proactive]

You didn't post your baseline hgb or current hgb numbers so it is difficult for anyone to comment on your breathless situation.While everyone loves to wave the procrit flag, the fact of the matter is, lowered hgb #'s are something one has to deal with as a result of riba dosing while on tx. By "dealing with it" I don't mean injecting epo, you adapt-you accept your diminished stamina and work around it to the best of your abilities...This is part of the toughluck of txing...no one said it would be a cakewalk...
If you would post your numbers, then you might receive some more informed comments...
chin up. keep moving forward, sometimes that will take hand and kness...;^)...pro

[geterdone]

You should be coming up on your 8 week cbc’s and pcr if not already done and waiting for results and if your doctor is looking out for your best interest as should be and your hgb has fallen fast from your base line and continued to do so from your 4/6 week cbc’s It should not be a problem to get rescue eop to stop the hemorrhage in your hgb inspite of the new labeling and hope your doctor has treated many hepc patients and knows how to work the system to get you what you need. I had started on Procrit in week 5 because of the drastic drop in the hgb from 15.9 base to 13.6 in the first 2 weeks of TX to 11.2 by week 4 and started Procrit in week 5 and iron and vitamin c for 6 weeks to shore up the iron stores and then stopped the iron. Riba reduction this early in the journey is not good in any situation except near death because in this period is when the most and critical virion killing is taking place in the riba cycle. Work was a *itch until it leveled out and took about 6 weeks for me to get to that point, Good Luck with this and hope your doctors is enlightened enough to get you on eop instead of the easy route of riba reduction. Tighten the breast shield get a tighter grip on the shield, sharpen the sward when you can and keep moving forward there are aid stations along the way.

jasper

Pro, nice to see ya, hope all is well.

[Bill1954]

Thanks for the clarification :o).

[Bill1954]

The above was for Jim and Ms CO. I  hit the enter key by mistake,


Bill

[CoWriter]

Hey Bill...

Do me a favor and tell CockSparrow that some Type 2 diabetics do take insulin.  
Thanks

[joemc34606]

I flet the same way when my red blood count was low, the red cells carry oxygen. Once I started procrit that all went away. The only time that happens to me is if I do something very strenuous. Before I was out of breath just talking, so check you red blood count and ask about procrit.

[meki]

Pretty much what they all said --- all I can add is that if you had breathing problems, such as Asthma or Bronchial Allergies - then you probably are going to have a lot more problems during treatment - which usually does get worse before it gets better.

I did notice a distinct difference about one year POST treatment that I had less colds, less allergy attacks and less asthma attacks... and that's about when I could walk more than 20 feet.

So each person responds differently - I do hope it gets better for you - make sure that you watch it carefully ---- OK?

Hugs,

Meki