hgb levels and Procrit

My hgb levels feel like they are getting really low.  2 weeks ago it was 10 (from a baseline of 14).  I have a CBC tomorrow, and I feel like it has dropped lower.  I'm lucky if I can make it up the stairs to my bedroom.  (I'm on week 13/48)

Should I ask about Procrit?  Or what was the other faster-acting one?

If I seem to be handling the fatigue OK most of the time, would it be better to hold off as long as I can before possibly adding another drug to my regime?

I also don't know my doctor's philosophy on rescue drugs, so I'm afraid if I bring up the fatigue, he'll just tell me to lower the riba, which I really don't want to do.  But then I don't want to have a heart attack either...

Gal

[quaterhorsegirl]

hi i used procrit my doc waited until i had dropped a certain leval i think it was 4 points. i was relieved to take it and it didnt interfer with other meds.. i didnt want to get weaker

[ladybug52]

I just went to my doctor's office today and asked how low for the hgb level before she would get worried. She said usually at 10 she starts patients on procrit, or if they had more than a 3 point drop after the first labs. In other words initial at 14 and down to 11 would alarm her. Sounds like you need to ask your dr. about the rescue meds. It takes awhile for the procrit to work. Don't hold off on something that important. People were posting last night that it can cause heart problems. You need to take care of yourself, how can you watch a two year old and work with not enough oxygen getting moved thru your body. That's what the red blood cells do, transport oxygen and you don't have enough to do the job!
Take care, good luck.
Bug

[GrandOak]

There is no fast acting one for Anemia.  Procrit, Epogen, or another brand name for an Epoetin-Alpha prescription is all that is available.  All take anywhere from 2-6 weeks to work, probably because you do not want to adjust your Hgb too quickly.  So the sooner you are on it the better.  You did not indicate how quickly you dropped from 14 to 10, many doctors look at the rate of decrease not the level (some do not look at all, but that's another story).

If you are down to 10, I would be asking about it now and discussing this in detail with your doctor.  If they are like my first doc on tx and are not aware of this usage for the med, I would be looking for a new doctor because I allowed them to reduce my riba instead of adding Procrit not knowing better myself at the time and I seriously think it jepordized my tx to the point that it did not work for me.

As for fast acting, you may be thinking of Neupogen, Neulasta, or another brand name for a Pegfilgrastim prescription which is used to help with Neutropenia, or Absolute Neutrophil Count (ANC) in order to boost your immune system.  But that's a different situation altogether.

[GrandOak]

From talking with the specialist, the risk to heart and blood pressure problems appears to be more a concern if Hgb "rises" too fast or high.

When I was on tx last year, I was put in the care of a specialty monitoring clinic for this purpose when my weekly dosages of Procrit passed 60,000 U SQ was Hgb kept dropping each time I upped my Riba dosage in an attempt to get Riba back to full weight-based dosage for me.

I eventually was at 100,000 U SQ, which is higher than any they had worked with before, and began changing my regimen from a single dosage per week splitting it to multiple injections per week.  In the end I was at 3 times a week with dosages of 30,000, 30,000, and 40,000.

[FL_Gal]

Thanks to both of you for responding.  I will ask at the doctor's tomorrow about Procrit or something.  Does anyone know the name of the one that works faster?

My grand-daughter seems to be the most understanding of anyone in my family about my limitations.  She does a lot of things on her own when I'm watching her that most 2 year olds would not want to do.  But last night, she fell asleep in the car and I didn't have the heart to wake her up.

My heart was pounding for about 2 hours after I carried her into the house.  Next time I'll wake her and let her walk herself!

Cat

[GrandOak]

They work the same.  look at the end of my first posting to see a possible clarification on the fast-acting confusion you may be having.

[FL_Gal]

Thanks GrandOak.  We were posting at the same time.  It took about 8 or 9 weeks for my hgb to get to 10, though it was dropping steadily the whole time.

Maybe I was thinking of Aranesp.  Is that for hgb?  My insurance probably won't cover it though, I think it's a new medicine.  Medco is really tough to get coverage from.  Thank goodness my doctor's office does all the communicating with them for me.

Gal

[GrandOak]

It looks like Aranesp is a Canadian version of our Epoetin-Alpha meds although there appears to be a slight chemical variation because it is pharmacutically known as "Darbepoetin Alfa".

According to their product insert from our FDA site it says "erythropoiesis stimulating protein, closely related to erythropoietin", which I beleive is another way of saying they are very similar in how they affect the body but slightly different in how they are made.

[ladybug52]

Thanks for the clarification. Last night someone posted that their hgb had dropped and two different people responded re: the increased load on the heart and someone in the Uk who had had a heart attack after the drop in hgb.
Turned out it was not hemoglobin but some lab that monitors something with diabetes. I'm kind of vague right? Anyway guess you had to be there! I'll take you word for it about the hgb and heart problems.  
Bug

FL_Gal: I don't blame you about not wanting to wake her up. They're so cute when they're asleep and so busy when they're not. My granddaughter is only 4 months so still easy to carry, snuggles up so sweet. But you really shouldn't try to carry yours up the stairs!
Bug

[FL_Gal]

I just got back from my blood test.  They said if it has dipped into the 9's, the first thing they will do is dose-reduce the riba.  I am currently taking 1000mg, they would have me reduce it to 800.  I weigh 110.  I'm not sure if I like that idea, but they said that at my weight, 800mg is plenty.

So, I'll wait for the test results and then decide if I feel crummy enough to lower the riba dose.

Thanks for all of your responses.

[ladybug52]

I feel your pain. Not literally since I have not had dental work, diabetes or lost a beloved pet this week--but frustration with the dr's office--that I feel.
I was getting pretty amused reading your thread last night as everyone was still calling it your hgb even after you had said it was A1c hemogloben. Panic continued! Then later I'm trying to quote parts of it and I can't even remember A1c hemo or what it stands for. I have got to stop trying to quote others!
Good luck, I hope this weekend goes better. I told the office manager why I'm not returning to my infectious disease dr. tomorrow. It felt good talking about the lousy level of communication I've had with the nurse and office staff. Be proactive, complain loud enough that you get better communication from them.
Best of luck for a better weekend!
Bug

[FL_Gal]

I guess I will wait for my results, probably Monday, and then ask for a callback from the doctor.  Meanwhile, I am still taking all my Riba.  I would kill myself with "what if" if I dose-reduced and then did not SVR.  They claim dose reduction doesn't matter after 12 weeks.

One thing that bothers me is that the nurses make these treatment decisions on their own, and the last time they did that and the doctor found out, he scolded them right in front of me, telling them that he is the one who keeps on top of the latest protocols and that what was good advice two weeks ago may no longer be proper.  So why do they continue doing it?  *sigh*

[GrandOak]

Please, re-read my postings.  I agree with NYGirl on the reduction for the reason obvious in my post.

In your situation, my first question for the doc would be, "If 800 mg is plenty then why was I on 1000 mg in the first place?". To be immediately followed by "Would I be in this situation if I had been on 800 mg all along instead of the 1000 mg?".

It would be interesting to hear what the doctor's response was to the inquiry on using rescue meds!  From the sounds of it this may be first an IF question, as in "If they will prescribe it?", followed by a WHEN should they respond in the affirmative to the IF question.

The absolute last place you want to find yourself is in my shoes wondering if I had known about and pushed for rescue meds back at the beginning of treatment whether I would be sitting here now toe tagged as a nonresponder today when treatment failed me.

I also wonder if I would have had such a time battling the anemia during my treatment had my first quack infectious disease doctor prescribed a rescue med instead of cutting my riba dosage too.

So I wave the red flag based upon my own personal anecdotal experience and wish you well in your treatment.

[ladybug52]

I just switched dr's yesterday and called the office mananger of the old dr. today to tell them why. I was so sick of a nurse making decisions and not listening to me or talking to the dr. re: my care. I can't remember what geno you are, but at 110lbs 800 mg is certainly more appropriate. I take 800 and I weigh 123. I agree with Grand Oak, why were you on such a high dose to begin with? Take care, you must feel exhausted, try calling the office manager if you cn't get past the nurse. It worked for me.
Bug

[FL_Gal]

I'm geno 1b, my VL was 3 million.  I weighed 125 to start with, maybe that's why it was 1000?

I'm not very good at being assertive with authority figures, but I suppose that is one thing I will learn from this whole experience.  I won't make any changes until I speak with the doctor himself.

I'm so new at all of this.  Thanks for validating my feelings.

[GrandOak]

Unfortunately sometimes one needs to be their own advocate, particularily when dealing with many in the medical profession.  If you have difficulty being assertive, perhaps you can find a patient advocate in your area, preferably one familiar with HCV, and have them along to insure you receive adaquate care and the best possible chance of eradicating this insidious disease from your system.  JMHO of course.

[Tallahassee]

I believe that Ladybug has (or, hopefully, had) Genotype 2.  With this genotype, it is recommended to use 800 mg of Riba per day.  I'm gen 1 and weight 110 lb (now less) and I'm on 1000 mg of Riba.  But sometimes it is VERY difficult to get a prescription for rescue drugs. Scheduling an appointment with a hematologist helped me.

All the best to you, but as NY girl said, try to utilize all resources before drug reduction.  Unfortunately, I learned it from my many years of treatment "experience"...

[CitizenSmith]

I was the person who posted about someone having a heart attack due to low Hb.The last thing I wanted was to alarm anyone,in that case it was bad monitoring that allowed the person to get in that position and it was a lot lower than the figures used here.Some of you may know that rescue drugs are generally not used in the UK,the cost is the major reason although some medics say they cause more problems than they solve.In my case I dropped to 8.9 before a dose reduction and went nearly all the 48 weeks between 9 and 10.What I'm saying here is that until your under 9 (or have had a rapid drop) you will feel unwell but unless you have a history of heart problems you should be fine.By the way some people with Sickle cell are functioning with Hb's under 5.Whilst Riba dosage is important for the first 12 weeks it is less so after,also 12 weeks is where Hb typically reaches it's lowest point it often rises after or at least stabilises.Usual caveat about not being a doc etc.

[ladybug52]

I knew that you had posted but I didn't want to use your name. Also another person was very alarmed about the supposed drop in hgb and said it could result in not enough oxygen to the muscles including the heart. I wan't trying to alarm poor FL_Gal but sharing info. Not a doctor either, more like Gladys Cratchett on Bewitched!
Bug

[dperry10]

It was my A1c hemogloben test results showing 6.3.  but yes was for my diabetes.  I never got a call today from my gastro about the labs from last friday.  I will see if they will give me a copy in the in morning when I go for this weeks labs.    Tomorrow is shot #3.  Had a very rough week, but managed to go to work today, and make thru the whole day.  Although I woke up at 3 am this morning, upset about everything.  could not stop crying, and didn't really know why I was crying,   just everything I guess.  Hopefully I will get more news tomorrow on how I am doing on tx.  i was reading alot about the riba and being weight based.  I weighed at start of treatment 252   , I am on 1200 mg a day of riba, I have already now dropped 20 lbs.. seems I am dropping 10 a week.    but based on others weights and doses, doesnt appear I am taking enough ?  Any input there ?   I will call the Gastro tomorrow.   I am so over those girls at the front desk.  They never get messages to the Nurse or Dr.  I had to go and pick up a new requistion yesterday for my standing order for blood work for this first 4 - 6 wks to watch my T cells.   They never even told her I called last friday.

[NYgirl]

What??? The WORST thing they can do is dose reduce.  We are at ALL times not supposed to reduce our meds and ONLY as an absolute LAST resort.  It will hurt your chances of SVR perhaps if you lessen the meds.

There is NO reason they can't give you Procrit or Epogen like the rest of us.  Generally doctors give it to you when your hemo drops to 10 - the insurance will pay for it at that point.  It can take from 2 to 6 weeks to kick in.  It's NOT a fast thing and unfortunately when you start taking it you don't know how MUCh you will need before your hemo starts to rise. You can take it once a week and just stay where you are and then need to take it twice a week in order to get the hemo up.  So it can take a while.

DONT let them drop your meds.  Just DONT.  These doctors kill me. Why don't they read the latest studies and documents and PROOF on why they should or should not do things!


ALL of the big docs say do NOT dose reduce except for last resort.

I don't get it but you really HAVE to talk to them!

[dperry10]

I know you read so much on here. sometimes it appears everything all runs together in your mind.. I knew I was.  Actually slept all nite.. I must have been really tired.. Glad its friday, but then again.. Its shot day.. so not really so glad.. gotta get to lab this morning before work.. Have a good day. and better luck with the new Dr.