Hi All,
A quick update- Rick was released from the hospital yesterday afternoon. He was given his transfusion, antibiotics and Neupogen, and his WBC returned to normal. He is getting blood taken tomorrow to ,make sure everything is still OK. Right now his Riba is stopped, but his Pegasus is the same, and he takes Procrit weekly. We are waiting from instruction from Dr Afdhal on what dose his Riba will be. Thanks you for all your support and advice!
Hi Bebj,
My husband missed his bloodwork because on his 3 month appt, when he usually gets his blood taken, he needed to get an MRI to check for HCC cuz his AFP L3 was elevated. He's a hard stick (small, deep veins & former IV drug user) so they decided to skip the blood draw that day so they could get the MRI dye in for sure. He has one vein that works and they hafta baby the h=ll out of it. After that, he had to go locally for blood draws and it never worked- they didn't have the orders, couldn't get his vein, etc etc. Finally he got his blood drawn last Friday, 6 weeks later, and he was in ER condition. As you know, anemia is nothing to play around with. He was very lucky to get into the hospital before anything happened to him. I hope your tx is going well and your anemia is under control.
Hi HCA,
Thanks for your input- I feel relieved that missing a few days Riba at this stage is unlikely to ruin his chances for SVR. Rick has already said he will never treat again. I tried to explain to him that he would undergo all this torture and more during ESLD, but it's easy for me to lecture from my comfy pre-tx position. That's interesting about the Riba being used to eliminate the unmutated virus in the first weeks of tx. I learn something new every time I come on here. Thanks for you help!
Hi FlGuy,
It's always good to see how on here- so many of your posts make me laugh, while others are very informative. I thought the Peg was the med that knocked out the WBC, and you just confirmed it. I always remind myself "Riba- red cells" to keep it straight. I'm blonde so I need all the help I can get, even off tx. They are keeping his Pegasus the same, but they gave him a shot of Neupogen (Spelling?) and a weekly script for it. His WBC was normal yesterday, so they released him from the hospital. We must go tomorrow to recheck it. I'm sure he will get biweekly blood draws from now on. It was monthly before, due to the distance of the Liver Center from us, and Rick's impossible veins. But this was really a perfect example of why bloodwork needs to be kept top priority by Rick. Next time he will sit in the lab all day til somebody hits a vein, just to avoid all this. I just wish we were closer to the Liver Center- Dr Afdhal is a genius and everyone there is so professional- they even have a specialist who draws Rick's blood or get an IV in, one stick, every time. Now that's pullin a rabbit out of a hat! Good to hear from you, FlGuy- hope all is well.
Hi NewLeaf,
You're right, it will be great to get Rick's next negative PCR. I feel very reassured after hearing from everyone here though. I figure that when Dr Afdhal hears about all this, he will maybe cut Rick's Riba down- he's on 1200 now, which is a lot since he lost 25 lbs on tx so far. Then hewill feel bettertoo, hopefully! I'm imagining that if your interferon was reduced, you had some brutal side effects. I hope all is better now- and congrats on your negative PCRs!!!
Hi VirgoCharm,
I know you're asking NewLeaf this question, but I would definitely talk to your doc before changing your dose. It sounds like you may need to reduce though, assuming youre Riba is weightbased. I think my husband was just on the edge of the 1200 dosing line when he weighed 215- now he is only 190 and he ended up in the hospital cuz he got so anemic. Ask your doctor about this- especially if you're feeling short of breath. That was the worst sx for Rick, not being able to breathe.
Thanks, everyone! Hugs and best wishes to you all!
-Dee
hi i am 44/48 boc trial. still clear, been off procrit 3 weeks feeling good. just still losing weight. can i personally reduce my riba 1200? i weigh 157pounds from 207 pounds from starting tx nov 7. 2008. i am about to go back to work tomorrow. i am o kay. but if reducing wont hurt, i sure like to. please comment?
If he was already clear (and he was) and gets back onto his meds shortly, he will probably be fine. I know you won't feel confident until the first PCR after he resumes the meds, but you just have to wait it out. I was stopped once and my interferon constantly reduced, but once a few negative PCR's followed, my confidence came back and I stopped worrying about dose reductions. It should be alright.
The more likely culprit for th wbc (anc's) is more likely the Peg than the riba. Has he had regular (like every two weeks or so) a cbc to check on the progress of the Procrit? It seems to be that since he has been in a treatment-tenuous position for a while closer monitoring (and showing up for that monitoring) is in order. NA is the top of the food chain when it comes to hcv, hopefully he can pull a rabbit out of his hat.
It is unlikely that suspending ribavirin at this stage of treatment will affect the outcome.
Ribaavirin is essential during the early weeks of treatment when the wild type (unmutated) virus is being knocked down.
If a treatment resistant variant has not developed-and an eight week clearance with 1a is good-then his treatment is still likely to succeed
The 7.4 sounds like his haemoglobin.
Remember also that ribavirin has a half life 172 hours so stopping it for a couple of days won't drain the tank.
Why did he miss the 16 wk bloodwork? My doctor won't treat me if I miss an appointment without a real good excuse. Whatever it was, you can see what happens when you don't follow up with the bloodwork. I go every week cause of being anemic.
Hope your husband gets well.