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.

[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.