Dreaded dosage reduction

[libzo2]

Treatment start: Sept. 18, 2011.  Week 9 Hmg reached 10.2.  Began first Procrit and Vitron-C iron supplement.  Week 10 Hmg reached 8.3, second Procrit shot.  Week 11 Hmg reached 7.4, third Procrit.

I knew something was way off.  I was doubting waking up.  Really detest that helpless feeling.  Doctor called yesterday to suggest I only take the morning Riba dose (400 mg) and hold back on the evening dose (400 mg) until my next weekly blood draw.  The Doc is raising my Procrit an additional 20,000 units from 40,000 but I haven't received it yet because my insurance won't OK it until Dec 8th.  Wow.  

My daughter came to see me and started to cry.  She is beyond worry.  What a burden I have become.  Eee Gads.  Lord have mercy.

This is one tough ride for a destination of hope.  A temporary challenge that beats the ultimatum.  

I will be strong (if it kills me?).  This has brought me to my knees and I am praying for everyone.

[Advocate1955]

Sounds like you are really struggling with anemia.  Hoping that things will improve for you with the Procrit and dose reduction.  You're almost to the end of the Incivek!  Yay!
Advocate1955

[spectda]

If you go to the top left of the main forum page you will see the post a question tab. pressing that tab allows you to start and title your own thread. You will get more response to your questions this way rather then tagging on to another person's thread on a different topic.
-Dave

[spectda]

Considering your doc responded by giving you procrit already there really is no choice except to either dose reduce you with HGB of 7.4 or give you a transfusion. I really don't think it will negatively impact your chance of SVR. My guess is that a 3-5 days of dose reduction and additional procrit will really help. It sounds like your doctor will respond with an increase if your HGB improves.

I also treated with Vic and spent many months with HGB in the 7s and low 8s even with procrit and occasional short term riba reductions. I think Frijoles suggestion of moving your current dose a few days is a good idea if you have enough. Ask your doc if you can do that if you do.

40,000 units every 4.5 days is the same as 60,000 units once per week. When my doc increased procrit to 60,000 units per week I was still crashing by the 5th or 6th day and found that 40,000 every 4-5 days worked much better.

As you said it one tough ride, but worth the SVR!
Good Luck,
Dave

[bbj2856]

I keep reading your post I start treatment in Jan . Is there a big difference in the type of virus . I know some have Type 1 type 2 and 3 . I am not to smart at this and I was wondering I been told  by my doctor type 3 is not as hard to treat. I have that. I pray for each of us each day ask God to help us get through this God Blessyou all.

[working dog]

what a drag it is to have real low hgb....i couldn't get out of the 8s most of tx  for some reason..sometines in the 7s....low hgb does get more tolerable as your body adjusts to it but i never felt right...i've been off tx two weeks and still have low hgb...but it did come up quite a bit which was nice...on triple after und i see lots of folks reducing riba for a while till their hgb comes up ...some have to stop it for a bit...be real careful...rest a lot....outside the house its really nice to have someone close by..i needed that as i couldn't stay standing for long...i laid down on feed bags in the tractors supply...just told folks i would be ok needed to rest...laid my head on shopping carts..i got use to people questioning it and most were fine after i said i was "weeks on chemo and  very anemic" i had to get out once in a whlie and my gf has a nice car with headed seats..she likes to drive...it became and still is my favorite thing to do...we have beautiful  mountain drives ..i would sleep off and on..mostly on...put a cap on and good sunglasses to block out the sun...good sunglasses were a must...the cheap ones hurt my eyes fast....i really got to find out how much it means to folks that are somehow impaired to have someone to take them for a ride...its a big deal...i think there should be something set up in the u.s. to take disabled out for rides..be careful..in the shower..up stairs..getting dressed ..walking on anything slippery...take care and maybe don't worry about the ria reduction...try to plan a little ride!!!!....good luck...billy

[frijole]

Since you cleared with 2 weeks of VIC you should be okay to dose reduce.  However, your doctor is recommending a pretty big decrease while at the same time upping the Procrit.

It is possible that the Procrit has not even started to work.  My hemoglobin had been in the 9s for 6 weeks and I had taken 4 shots of Procrit (40,000 once a week) and just this Wednesday the hgb made it to 10.3.  The first time I treated with SOC I also used procrit and the increase in hgb in 2 weeks was a whole 2 points.  I believe the VIC makes it take longer for the Procrit to work.

It may be okay that the Procrit dose increase won't happen until Dec 8, but are you out of the once a week doses?  Could you not move one up?  I cannot imagine hemoglobin in the 7s and I can understand your daughter's shock - my hubby had never seen me so pasty faced and that was only the 9's.

I hope you can lay low this weekend.  Don't expend more energy than you have to.  

frijole

[pcds]

I had to dose reduce and on procrit.  It's the fastest way to increase HGB.  Seems rather common protocol.

[JasmineT]

Btw, please don't let it kill you.  That's the whole point of treatment is to live!  Hang in there and do what you can do.  

[JasmineT]

Hi libzo, I am sorry to hear you are not feeling well.  You are almost finished with incivek?  About a week after incivek I started slowly feeling better.  My mg never got lower than 10 though.  But hopefully finishing incivek will help too.

I think you are on incivek.  If so and you you haven't seen this info, you may wish to read through. I book marked it when someone on this forum shared with me when The doc thought I may need procrit. It talks about dose reduction vs when it's considered dose interruption and impacts on svr.  If dose reduction is followed correctly it sounds like you still have a very good chance at svr.  I am surprised they took you to 400 mg rather than 600 which is the usual.  I am also surprised they are not spreading the dose out through the day but I am no expert.  Anyway, hope this helps you, take care.

http://www.natap.org/2011/EASL/EASL_41.htm