Hey dave
Just checked in after a few weeks of getting the kids done with summer and back to school. Sorry to hear about your Hgb. I am glad to hear though that they can give you helper drugs even though you were randomized to the riba reduction. I may be headed that way also as they just did a second riba reduction. You are almost at your half way point and it is a great feeling to be on the positive shorter end of this journey. I am at about week 27 and was told to start counting backwards in weeks. Hope the Hgb goes up at a safe pace and that you are feeling better soon!! You are always so positive-thnks for the inspiration!!
I agree, this is one place you don't ever wanna be. Thanks for the encouragement. Every day is closer to this stuff taking effect as I see it. I just hope the vl doesn't creep up with the reduced riba. It's such a balancing act.
Yes you think it's bad when it's ten but once it goes under it's like holy COW this is unbelievable! I guess that is why the docs 'torture' us by having that ten line before they will give it. But boy I dont want to ever go there again ever and I REALLY REALLY hope that it works double fast on you - you deserve it. You'll feel so great once it's over 10 you will be shocked - its totally different when it goes down...slowly you thnk you are dying but once it goes up it's like wowowoww I feel OK. When before at 10.5 you felt like crap. It just goes to show how really amazing the rescue meds are!
Thanks Deb-
You don't need to look it up, as you can imagine I am just anxious for the procrit to take effect. The kind of drop you had in 10 days is pretty crazy and often I read that how quickly it goes down can be more difficult to deal with then a steady drop.
My HGB kind of went steadily down, hung at 10 at week 12 and then down from there. I was able to adjust pretty well until it went completely to the gutter. Boceprevir also contributes to the anemia. I hope I get as good a boost from the procrit as you did, although I am only doing once weekly 40,000.
Take Care,
Dave
Frijole,
Thanks my friend I knew there was a reason I didn't take them together - it gets hard to remember the logic of things these days.
Spec,
My hemo went down six points from 15+ to 9 in just ten days. To say it was hard for my body to accomodate that change is probably the biggest understatement I could make. I have no idea how low it got before the procrit kicked in because my doc would not retest me (he didn't even know i HAD anemia he thought I needed an ear nose and throat doc for the ringing in my head and made me have an xray for the not being able to breathe...and he thought I was nuts when I went in saying I needed Procrit).
However at first on the 40,000 dose a week it just was at 9. Then 40k x 2 a week made is zoom up pretty quickly in two weeks I was over 12 so we had to cut back to the every 5 days deal. Stayed at about 10.5 and considered that WAY comfortable compared to before!!!!!
I wish I could remember more but as you know the brain cells weren't working very well at that time and it was over three years ago.
I think on average though it probably takes about 2 weeks for it to kick in although it can take more than that. In my case (I was doing WAY too much riba and stubbornly and stupidly refused to stop double dosing it (basically) was sort of the opposite as you where you dont have as much in you.....so you could respond much faster as where it probably took me about 4 - 6 weeks with all the adjusting cause of all the extra riba.
That is as best as I can remember Dave - I could probably find my records at home and look at them but by the time I find them I bet you are recovering already ;)
I really like the pic of the horned lizard!
Hi Kathy-
Thanks for the info, it gets more complicated with these added injections. Although I feel like a pincushion, I am very thankful to get the procrit so I can get this hgb off the floor and I can get my breath more easily. I am completing week 17. Only 31 weeks to go! LOL
have a good day!
dave
I do think the interferon and neupogen counteract one another. My hemotologist told me to take them at least 24 hours apart but I know some other forum members were recommended to wait 48 hours after the inf before the neupogen.
I think that it doesn't matter so much with the Ribavirin and the Procrit because you reach a certain serum level of ribavirin in your system and your twice daily dosing has less impact. Also because it would be hard to work around that twice daily dosing.
AS far as the neupogen and procrit, I don't think it matters if you do them at the same time. Dang, Dave, I know you feel like a pincushion. I found it easier on my body to do the neupogen and procrit in the belly and leave the thighs for interferon.
What week are you now? I haven't been on in a week or two so haven't checked all the recent posts. Hang in there.
Frijole
Thanks for your thoughts, I appreciate it very much. I hope you are holding up reasonably yourself. I am in the middle of week 17 now, you must be about half way there or close at this point if I am remembering correctly.
Take Care,
Dave
Thanks for the info Deb-
Where did your hgb bottom at and how long did it take to get it moving up? Mine was 7.7 five days ago and I need it to improve quickly so they will continue treating. They also cut my riba in half until it improves which of course scares me, but I have no choice. My doc will increase the riba a soon as the hgb improves. Also what day did you take procrit relative to the day you had blood drawn?
Thanks,
Dave
I took 40,000 two times a week and it was too much (hemo went over 12) so the doc cut it back to 40,000 every 5 days and that kept me right at about 10.5 which was perfectly fine compared to where I had been if you ask me!
I took it on different days then my interferon though - I don't know if I was paranoid or there was a reason but I did it that way (ie: shot Fri, procrit sat, procrit thurs). There have been plenty of people who have taken both neup and epo at the same time.
Wow! Those drugs are really knocking you for a loop aren't they? I'm sorry you are having such a hard time. I've never gone below the cut off point for either RBCs or ANC so I can't answer your question... just wanted to let you know you are in my thoughts.
Diane