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Life and Lead-in with eltrombopag for low platelets

Nov 11, 2011 - 1 comments
Tags:

eltrombopag

,

platelets

,

AA

,

cirrhosis

,

Diabetes

,

Pain

,

God

,

being of service

,

surrender

,

Gratitude



I start a 4-week lead-in with eltrombopag (Promacta) today to try and and see if we can raise (stabilize) my platelets at 50k, where they are at now.
My last Tx using Infergen (daily shot of non pegylated interferon) dropped my platelets to 6k and Tx was stopped.
My 1st 48 week Peg/Riba Tx lowered my platelets from ~100 down to 50 where they have been and my 2nd Tx they stayed at ~50.
Good thing is the eltrombopag works; bad thing, it is hepatoxic esp. at higher doses.
I will be taking 25-mg / day and doing CBC's and liver panels weekly to monitor the effects. Hopefully all goes well!
When I get through that, I will begin another 4-week lead-in with Peg/Riba to see what my platelets do. I am going on telaprevir (my choice) which does not normally have this lead-in but I have requested it as once I start the PI's I won't be able to stop and re-start them. My Hepa team is pretty accomodating as I have done my research (a lot of it here so thanks to all my fellow Hep-cats on the site!).
When all that is done I will do the 12 weeks of triple Tx and they might want to extend the Peg/Reba beyond the 48 weeks which I am OK with. Hope my wife and kids make it through as well! I thought I was pretty OK the other TX's but they have a slightly different memory of it than I do...  :o)
Best things I have done to make it through this far:
Got back into the spiritual side of the AA program 2 years ago which has completely changed my whole outlook on life (and death). I thought my problem was drinking and things were OK for the 1st 5 years when I was single and didn't have to deal with many emotions. Then I met my wife and thing went to hell and I ran every time things got tough. Somehow, God thought I still deserved her and somehow she stuck with me through 8 years of hell until she could no longer stand it and she asked me to leave. I moved out, really got into my program, found out the drinking and using was just a symptom to mask the pain of my parents divorce and their fighting. Though I still have some issue dealing with emotions, they are small stuff and I can see them for what they really are and I am able to work through them. I couldn't imagine having to go through Tx without my new found happiness! I (try to) surrender my will and turn everything over to my Higher Power every morning and She takes care of it all. I no longe fear God and would rather take my chances with a god who MAY send you to hell than withh substances that WILL take you directly there and drop you off at the front gate! God removed my desire to drink 16 years ago this month on the 21st and the way I did it I would of been dead a long time ago as I have had Hep C for over 25 years but was only diagnosed 8 years ago. My wife and I were seperated for a year but are now back together and happy. I could not imagine llife without my family but I know that if I had to, God would give me the strength to go on an still find happiness. I can't thank Bill W. and the AA program enough, but I stay with it and try to help the newcomers (and even people like me who have been around it for awhile) who suffer...
The other thing I have done is started being good to my body. I am managing my diabetes (brought on by cirrhosis)which can be tough as most of us love to eat and it is even tougher working 12 hour nightshifts which is not normal anyways. My employer is gracious enough to let me work by myself on nightshift even though they would rather have my experience on days. I think there is some connection between me working for them for 17 years and me being sober for the last 16. I was looking through my file tonight and I had 107 sick hours in my first year of work, which was my last year of drinking! I also have been working out mostly every day and lost 60 pounds in the last 2 years. I do yoga and meditate (well I try and but it can be hard to shut up that damn committee that lives in my head. Can you relate? I don't take too much too seriously; only worry about the big stuff but so far it's only been small stuff; take time to enjoy of  become aware of the simplest things which are usually the most profound (a flower, a smile, the laughter of a child, the tears of a child,); try to practice random acts of kindness; and be of service to my ALL of my fellow humans when I can, who are exactly like me: perfect creations of God.
Thanks to all who share their experience, strength, and hope here and special thanks to those who have achieved SVR and special special special thanks to those who are not doing well, for sticking around to help the rest of us. Without you, this group would be nothing!!!
Chris



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1856046_tn?1330240845
by BigDaddy_59, Feb 21, 2012
Update on my Promacta tx
My hepa wants my platelets at ~90 before triple tx starts. I was on my way up and then I got a test on 2/10 that was 58 (a week before they were 67). I though maybe there was a problem with test so I went in the next day and had them drawn at the hospital where the lad is located and they were 52??? My WBC went from 4.0 to 3.1. Now I know why the doctor's say not to worry about one out of range test..
Got my blood redrawn yesterday and my platelets are now 76. I go to get my meds tomorrow and will probably start with the first shot on Saturday or Sunday night (I am off until Wed night). I am doing a 4-week lead-in to see how my platelets respond and if all goes well, then onto the 3 with Incivek - can't wait for those burning shards of glass- haha!!!


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