update...school, potassium, hemoglobin...

[inquiring mind]

Hello all!

Some of you have been asking me how my first two days of nursing school at SLU have gone. The answer is "wonderful!" I am in a group of 26 people, very different backgrounds and all really interesting. The professors are super smart and supportive. I found out that the mo state board of nursing has rated our teaching lab as the best in the state and I am reallllly excited to get to work in it! I am feeling ok and so far think I might be able to pull this off.

On the other hand, I found out today that my hemoglobin has dropped to 7.7. I have to go get it checked again first thing tomorrow morning, and from talking to the nurse it sounds like my doctor wants to pull me off riba. I am extremely opposed to this. I asked about procrit and blood transfusions and she said she didn't think those were going to be options for me. I am supposed to talk to her again tomorrow once she gets my blood work and am prepared to throw a major fit to be able to stay on the riba. Thank goodness my potassium is back up in normal range (barely). I have not yet had a conversation with the program coordinator about my treatment but it appears that will have to happen stat since this is the third day of class and I've already had to make arrangements to miss portions of class for the dang blood draws.

I think I haven't felt worse than I do because I am really excited about my program and since the potassium is up I haven't had as much muscle weakness....but after the first day of class I went home, ate, and fell asleep straight through from six to 7 the next morning except to take meds at 11...guess the 7.7 number explains why 

[sweet sue]

I never ask my dr for anything. Tell them you want to try the procrit before they drop your riba. Remember you pay them so you do have a say so.

sweet sue

[inquiring mind]

Yeo I'm takin the Sue Approach 

I'm thinking they are going to say that the procrit won't kick in fast enough to suit them....so if I have to I am going to see if they will agree to a transfusion as a stopgap measure until procrit takes effect even though I am terrified of transfusions since that is how I got into this situation to begin with (and I am very squeamish about IVs) but I will do whatever it takes to stay on the riba.....

[banarep]

since you are on triple therapy, you can go down in riba and the treatment still work.  I was reduced from 1200 to 600 at week 17 and am still UND.  What week are you on?

Just remember that they are and have been developing newer proticals with the newer meds.  I would ask for dose reduction.

[inquiring mind]

I am on week nine BR and told them I was willing to go down to 600 ( I am on 800 now, I weigh about 125) but no lower. The nurse did not like that. We will see.....

[inquiring mind]

Oh and I started at 1000...

[Trinity]

IM,

You have to get some intervention one way or the other.  7.7 hgb is dangerous.  Bad for the heart.  Procrit for sure, riba dose reduction and transfusion are in order.  They shouldn't have let you get down that low to begin with.

We don't want the cure to kill us -  stay safe.

Trin

[gale]

Hi IM,
Just wanted to let you know that I am thinking of you and praying for you.  xo   

[snapplecandy]

Trinity,

I agree they should not have let IM get down that low. A friend of mine who was a clinical trial coordinator heard all sorts of stories from the reps about how docs would let patients go too low before intervention. Below 8 is pretty bad. She also mentioned they watched closely for 2 point drops in hemoglobin as big red flags. IM does have other issues going on to consider.

I know I am going to have the riba dose reduction talk on Friday and that my docs will dose reduce before using procrit. Im at week 5 and do not want to does reduce and will have to fight with them. I have yet to find any data to support NOT using procrit first. Would appreciate it if someone can post data on this subject. hint hint banarep..

IM congrats on your starting school and good group of fellow students! I hope you can keep your brain in tack....you are a brave soul.

[banarep]

on it....

[snapplecandy]

Thank you , thank you.

[banarep]

am still looking.  not much data out there for triple combo, but here is one article about dosge reduction:

http://www.medscape.com/viewarticle/709163

the gist of the article is that you need to maintain at elast 12mg of ribavirn per kilogram of weight per day (average dosage during all of treatment)

what does that mean:

take your weight divide by 2.2, that will give you your weight in kg.

multiply that by 12 and that will give you the average amount of riba you need to be taking a day - over the complete course of treatment.

Patient A weighs 120 pounds and is on treatment for 24 weeks, they need to average how much riba per day?  (I love math word problems)

120/2.2 =  55kg

55 X 12 = 660 mg of riba a day.

24 X 7 = 168 days

168 X 660 = 110880 mg of riba over the course of treatment.

If patient A take 1200 mg per day for 8 weeks and is then reduce to 600 a day, you take the total number of days at 1200 (1200 X 56) + total number of days at 600 (600 X 112)

67200 + 67200 =  134200 total mg of riba over the course of treatment.

divide that number by the total number of days

134200/168  and patient A received an average of 798 mg of riba a day, if you divide that by his/her weight

798/55  you get 14.2 mg of riba a day, well within the >12 mg a day to reach SVR.

[banarep]

I hope this helps.

[snapplecandy]

Thanks banarep,
I will sit down and do the math. The only thing I found was reference to cumulative dose of ribavirin which kind of follows along with your math. Thanks for the link. Ill check it out. I did notice in the Vertex insert that they just make the blanket statement to does reduce when using Incivek with anemia and not one word about why or when it might be appropriate to use procrit.

[Trinity]

It's so crazy the way some people get huge hgb drops and others don't.

Started out at 118 lbs and have done 1200 mg of riba (sometimes more) the entire time.  Starting hgb 14.7 and the lowest my hgb hit was 11.4 at week 8.  Don't know where the numbers are now but I don't feel anemic, although I may in the 10's, getting a little winded these days.  Taking the riba with fat too plus Incivek usually causes the hgb to drop too.  For some reason, my body does not metabolize riba like others.   I think my whites are low though, not healing well, rash became pussy and had to put Bactroban on it which is clearing it up.