HGB 9.8 Riba Reduction

[Tippyclubb]

They reduced me from 1000 to 600.  I am still on the Telaprevir for 10 more days so maybe I will be okay.  Hopefully, it will go back up in a week, so I can get back to normal dosage when I come off the Tela.  Nurse said Tela causes hgb to drop also.  I started at 15.8 and dropped quickly.

My concern is if I get put into the 6 months group what my chances of SVR  would be with the reduction.  I asked the nurse and she said they don't know because there are no studies yet on this.  Oh boy its always something !  Lol !  Have to laugh to keep my spirits up.

I'm half tempted to take 800 a day and wonder would that make a difference?  Any thoughts.  They count my pills every visit, but I could come up with some excuse as to what happen to them.

I knew something was wrong last few days as my face color changed from milky pale white to gray with black eyes.  Anyone else have the black eye thing going on?  The odd thing is I feel okay though and have had more energy since last week. Weird.

Well all I can do is try not to worry about it and see what happens.

[zazza]

Okay, I see your dilemma. There is clearly a downward trend. And with telaprevir in the ball park it is difficult to know what to do and what is going to happen. Hope the answer comes to you while you sleep.

[Tippyclubb]

Jan 19  hgb       14.9
Feb 3rd   hgb     12.1
Feb 24    hgb      11
March 9  hgb       10.7
March 23 hgb        9.8

My starting hgb 15.8

I will pm you

[zazza]

A little math:
150 lbs = 68 kg

1000 mg/68 kg = 14.7 mg/kg
800 mg/68 kg = 11.76 mg/kg
600 mg/68 kg = 8.8 mg/kg

Usually recommended dose for geno 1s is 13-15 mg/kg. I can not recommend you in any direction, but riba dose reductions do scare me. Do you have any idea when you became UND? Do you have your prior hgb readings available? Can you see a downward trend or is your hgb pretty stable?

[jacksonblue]

hello tippy i finished treatment on tuesday i was told to reduce rib at week 14 down to 9.9 2 weeks after finishing telaprevir on dec 30 because of holidays took that long to call me i did not reduce had my own test done and was back up to 10.1 within 10 or 12 days of finishing tel within 4 weeks back to 10.9 you may want to look a post on jan 10 by me i had great advice and encouragment from members best wishes

[Tippyclubb]

I weigh 150 so I thought it was a big reduction also.  The Telaprevir is also causing the hgb to drop so I suspect they are taking that aspect into consideration also.

Not sure if I will do 800 tomorrow or not.  Think I will sleep on it.

[zazza]

I am kind of surprised they dose reduced by that much when you had a hgb of 9.8. Why not with just 200 mg? I was hovering between 9.5 and 10.5 most of my tx. My doc never even mentioned dose reduction, but then I was not on telaprevir. I know the cutoff goes at 10, but apparently my doc gave some leeway for that anyway.

How much do you weigh?

I am inclined to agree with what HCA said above, although it is difficult not to play it by the rules when you are in a trial.

[IMstacie]

My Hb dropped from 10 to 9.1 this month.  Not on Telaprevir but I  had the grey "death mask" look with sunken eyes for awhile.  I guess we could start a new fashion trend.  We need a name.  Goth is already taken.

[Nomadpixie]

Sorry to hear this tippy...My Hb also dropped very low on tx...

Try not to exert yourself and rest up.....Lets hope next blood test it has gone back up to acceptable levels...PXx

[portann]

You know how close to your situation I feel, since the exact same thing's happened to my HGB last week, below ten. Darn, we didn't want this on our plate.

I have no answers. In my case, I'm burying my head in the sand, hoping it will go away. I'm sure no help to you.

And you know how much you've helped me - it's miraculous and simple and so hot. :) And I've already bought the peanuts, in the shell and shelled.

I'm thinking of you and wishing you the best. If only the solution to low hgb were as easy as a tub of Vaseline.

Port

[HCA]

A blood transfusion consists of lying on a bed for half a day whilst you get a couple of units of blood.
It beats dose reduction although the benefits are temporary.
You really want to maximise on ribavirin whilst you are taking telaprevir.
Once you dose reduce ribavirin you can't 'buy back' the benefit by increaing it later.

[nygirl7]

"my face color changed from milky pale white to gray with black eyes.  Anyone else have the black eye thing going on? "

Yes I looked like a vampire for 72 weeks believe me. I started using Jergens Tan Express lotion so I'd level out to a human looking color again.

AS for the dose reduction, it seems like a very big reduction to me considering the one thing docs try for is no dose reductions. What week are you in?  At least until the end of week 12 I would really try to stay up at the 800 if possible.

But that is my opinion (I double dosed riba the entire time because I was crazy so bear that i mind!)

[Tippyclubb]

I'm anti transfusion because I don't know anything about it.  Guess I better start investigating, just in case.

[justme53]

Wow, 7.1 ?? I'm in awe that you could make it to work at all!

Glad to hear you're back at 10.4 and hope you're feeling better soon.

Pam

[HCA]

Generally speaking telaprevir reduces hgb by about two points during it's twelve week cycle,
At 9.8 you are probably ok for 800mg as you are nearly at the end of the telaprevir.
Don't know why you are anti-transfusion.
You should get a gentle upward curve in your hgb post telaprevir.
As a general rule one should maintain riba dosing as reducing and then raising it again is no good.
Good luck in any event!

[thegypsy9164]

Well, I guess from these responses you can clearly see that you are not alone.
Last week I had to have a transfusion (2-bags of red blood cells) as my RBC went to 7.1.  I started at 17.?.  I was almost colorless and my coworkers would call me "the green man."  Not gray or black but green.  I have some energy and color back and am at 10.4.  I think and have heard from friends that they somehow hit a spot at times where nothing significant changes in their status but they suddenly feel as if their body is adjusting and compensating as they begin to feel better.  Not me, not yet.

[Tippyclubb]

Hgb is 9.8 but I'm thinking its not the wisest decision to take 800 of riba seeing as Tela also reduces hgb levels.  The last thing I need is a transfusion.  

Only 10 days more days of Tela and now this reduction.  They going to do a vl in 10 days so we will see what happens.

[Trinity4]

Mine hangs around 12. The only time it was very low was when I first started treatment and also when I was taking phlebotomy treatments.  Otherwise, its been mid 11 and now 12 for quite a long time.  Wbc is my problem.

[meakea]

Tippyclubb:  Good luck with all of this...you're right...it's always something.

I have circles around my eyes but mine are red and puffy.  Looks like I've been punched.  Luckily, I wear glasses and I have some of the newer chunky frames so they hide it a bit.  I have to take my glasses off to read my computer at work so, when people walk in my office, I'm always grabbing for my glasses so I can quickly put them back on to try to hide...lol.

Trinity4:  

"Not a fair skinned person but for the last 48 wks I've had the grey "death mask" eyes are sunken in with black circles, hair sticks up like a rooster, not a pretty picture and I've never been anemic..."

Am I wrong in my thinking that we all  "anemic" when our HGB falls anything below the normal level?  

[HCA]

Never mind the panda-what is your Hgb down to?
It's best to maintain the riba dose through to the end of the telaprevir period at least.
Although procrit type drugs are not allowed a blood transfusion almost certainly is.
Your descision as to take 800mg or not needs to be based on your Hgb which is not blinded.

[Tippyclubb]

Everyone wants to hug a panda bear--all I get is whats wrong with your eyes as they stare at me in shock, no hugs.  Craving for Cauliflower of all things -lol !

Trinity, GSD, justme
I was wondering if I was the only one looking like this.  Its a awful look.  No rescue drugs in this trial.  So now I am reduced and still feeling okay hopefully next week I will feel like the Energizing Bunny.  

[jmjm530]

One can always tell them that your cat is acting very nasty these days so perhaps she ate a riba or two. LOL. You could also drop down for a few days and then see how you feel before taking things into your own hands not that I would recommend this to anyone.

[justme53]

I have a more ruddy complexion, but when I dropped to 9.7 last week, I was shocked at my appearance, just like you described...gray with dark circles under my eyes. However, I felt as bad as I looked. My Riba was dropped to 1000 mg and by Monday, I started to rejoin the rest of the world.

I'm assuming in your trial there are no rescue drugs used?

I agree...'it's always something' !!

Pam

[GSDgirl]

I had the dark circles even before TX but I think it started with the porphyria.  It got worse and the grey pallor was there on TX.  I still have the dark circles a year post TX and wondering if it will ever go away

Denise

[Trinity4]

"my face color changed from milky pale white to gray with black eyes.  Anyone else have the black eye thing going on? "

Not a fair skinned person but for the last 48 wks I've had the grey "death mask" eyes are sunken in with black circles, hair sticks up like a rooster, not a pretty picture and I've never been anemic.  I think its the combination of drugs.