Procrit not working. What now?

My hemoglobin dipped to the high 8's in my 20th week of tx so started on Procrit.  I had horrible side effects of dizziness and vomiting and besides, after 6 weeks of tx my count is 8.7.  So now Procrit is not an option.  I don't see my doc until  next Wed. so  would like to ask all my friends here what you think might happen to me now.  I  have to  treat for 48 weeks and am on week 27th.

Are transfusions an option to get me through tx?  Are there any other drugs besides Procrit that I could try?  My worst fear here is that I will be added to the list of those who must stop before SVR.  This has been a very hard, rocky road for me and it is discouraging to fail now.  Thanks guys for any advice.

Jazzy

[Trinity4]

Dizziness could be caused by the low hgb.  Many of us experience nausea and vomiting from the antiviral medications.  Are you sure the Procrit is causing those side effects?  It really would be to your benefit to try stay with the Procrit and as bad as this sounds a higher dose of Procrit might be in order to effectively work in raising your hgb.  There are medications that will reduce or stop the nausea and vomiting.  

You have 21 more weeks to go and they can't transfuse you through the remainder of your tx because it is dangerous and also short lived in raising the hgb.

Perhaps you can talk with your hepa about starting a medication for the tummy problems, reducing your riba dosage temporarily and see what he thinks about increasing your Procrit dosage.  If they can't get your hgb up to an acceptable level they will pull you off of treatment and you certainly don't want that.

Trinity

[eureka254]

Sorry to hear that the procrit does not seem to be working for you.   I've heard of others using Arasnep, but I'm not sure if it would give you any side effects or not.  Blood transfusion is one option, but transfusions only raise your hemoglobin for short periods of time. Depending on the severity of your anemia, keeping your hgb in range may potentially require transfusions regularly.  (I recall there being a few members, Alagirl and Neptune235 who had 4 or more transfusions in order to stay on treatment.)  Another option is to reduce riba if you haven't already, worth entertaining as an option if you were a rapid responder.

When my husand's anemia dropped below 8 he had dizziness and nausea and vomiting for several weeks before starting procrit, but he continued to have those symptoms because he appeared to be a slow responder to procrit. He had to reduce riba, and after 4 weeks of procrit his hgb still dropped to the lows 7s, and he had 2 units of blood transfused.  He stayed on procrit once a week, but hgb still tanked, and he had to have another transfusion at week 42.  He was able to tolerate procrit so he stayed on reduced riba after his second transfusion and increased procrit to twice weekly.  He had the option to transfuse as necessary, but he found sitting around for two hours for each pint of blood was less preferable to procrit.  Hope that helps. ~eureka

[portann]

Hi Jazzy,

Sorry to hear about this turn of events - that procrit was supposed to fix it all, huh?

Maybe someone else can pursue this line of thought 'cause I'm not really  thinking tonight. The thought is, "Are you effectively utilizing the Procrit that you are presently taking?' because if not, well, then you can take tons and it will still not help. The key, strangely, enough, is to be sure your iron levels are sufficiently high. Are they? Have you beeen tested recently?

Be back later but let me know about whether your current iron levels pass the test to enable procrit to do its job.

And then I suppose you could take more Procrit. NY did a lot of dosage adjusting to get it right for her, so maybe that's what you'll have to do, too.

See you later and hang in,

Susan

[spectda]

I am very sorry to hear about your struggles and hope it resolves soon. How much riba are you taking per day, and what is your weight? Are you taking pegintron or pegasys and how much? How long have you been undetectable?

You might have your doctor do an iron study. Since you are a vegetarian you might have low iron which would make it difficult for your body to produce hemoglobin even if most of the damage is coming from red blood cells being destroyed by riba.

Did the side effects that you felt were from the procrit stop when you don't take it, or are you still taking it?

- Dave

[Trinity4]

If I'm not mistaken, I think Ala developed severe iron overload because she had so many transfusions and required iron chelation therapy.  I'm pretty sure there are just so many transfusions they will allow because of that and the other other effects transfusion has on blood values.

At week 27 a riba reduction isn't as critical to SVR as it is early in treatment and if the hgb is 8.7 now a riba reduction and continuing the Procrit seems like the best alternative.

Trinity

[jazzy578]

Thanks gals for the responses.  I have only been on 40,000 of Procrit weekly so  increasing might bring up the blood levels.  My dizziness consists of not being able to see or move because the entire world is whirling around me so fast.  I can't lift my head to  take a drink of water and need help walking anywhere.  I can't eat because everything is thrown back up due to  the fast spinning or everything around me.  I tried to  take an anti-dizziness med which helped me somewhat but had the side effect of extreme sleepiness.  When I stopped the Procrit shots, each day the dizziness got less until after a week they stopped.  I do have nausea from tx and the usual weakness and dizziness, but nothing like when I was on Procrit.  So, now I  am scared to  try Procrit again especially thinking of increasing it.  However, if it can increase my SVR   then I would do it.  

jaz

[jazzy578]

Are my iron levels automatically tested when I have a regular blood panel?  If so, what is the catagory name?  

jaz

[portann]

Hi jaz,

Iron issues can be confusing but there are actually times when iron is necessary -- it depends on the individual's situation.

Iron won't help hemolytic anemia caused by ribavirin but if you don't have enough iron stores, Procrit won't work.

I don't want to falsely get your hopes up when low iron levels may not be your problem at all. It's rare, although I can think of a couple of members who boosted their low iron stores in order to make their procrit effective.

If you're a vegetarian (combined with heavy periods?), then it's more likely and worth having the doc run the tests, just in case:

These are:

Transferrin saturation
Serum Fe        
Total iron-binding capacity (aka TIBC)

Without these tests, you can't know if you're iron deficient.

Iron testing may not be automatically part of your bloodwork. My NP used to add it.

Remember, iron won't help if you 'only' have hemolytic anemia. During treatment that's USUALLY what we're dealing with, in which case adding iron would be a bad idea.

Get your doc to run the tests, if you think it's worth a shot.

[GoofyDad]

I was put on high dose folic acid while on procrit. Procrit is kinda slow to work. Is it possible that the dizziness was caused by anemia, and the pocrit was just starting to work when you stopped it?

If you have reduce riba, dropping one pill per day will raise your hgb quickly.

Good luck.