Platelets and Reduced Dosage - need you opinions

[Dale_Ray]

Good Morning Everyone:
As you know my platelets have been down to 47 and my ANC has been fluxuating up and down. My doctor two weeks ago began warning me that I may have to discontinue treatment because of the platelets. Thinking that I would have to stop treatments I adjusted my dosage of Pegasys down from 180 to 135, Neupogen from 300 to 150 and the Riba from 1200 to 1000 just to see what happened on this lab work. They just phoned and platelets had gone up to 75 and ANC was in the normal ranges. Do you think I have made a mistake by arbitraily adjusting my own meds? I really didn't know what to do but to give it a try. One more thing when I started treatment my weight was 206 and now it is 183 so I felt like if dosages were weight based possibly the reduction in weight could have played into it. Let me hear your thoughts as always they are important to me. Dale

[Forseegood]

Just in case anybody is interested, I use a product called
Betaine HCI (with Pepsin) and I love it, had a few probs with reflux, etc. before I started using this, and now I hardly ever get indigestion...it is a big thing in Europe for urpy probs, they've been using it for years...

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[GoofyDad]

So lemme get this straight, Ya'll are saying I was s'posed to be <i><b>eating</i></b> all those beets? With those nice tapered ends and all it seemed pretty obvious to me that... well <span>he</span>ll nevermind....

Sheesh, next you'll tell me I was s'posed to remove the stems and leaves?

-- Bushy

[wonderingwhen]

FL,
I have had three needle biopsy in the past. Last year prior to start of tx I had a Laproscopic Liver Biopsy. This method was used due to the concern of my low platelets and bleeding. The spleen was also looked at and its size confirmed. I have pics of my liver they gave me in my office, just as a reminder. Grade 2 Stage 2-3
Prior to tx my Hepatoligist had me have all kinds of immune system tests where they took a bone marrow biopsy. He wanted to make sure that it was the Liver causing the low WB and platelets not something else prior to tx. With this test they were able to tell that the marrow was doing its job.

Kalio,
Must be the color of the beets? I love beets by the way and we eat them all the time in our household, I didn't know they were supposed to boost  Platelets. I don't think the quanity I have consumed has helped me yet.

[FlGuy]

I also had low pre-tx platelets although they only went down to the 60's on tx.  The doc thinks that low platelets, and a couple of other factors, spider nevia and red palms are indicative of more than just fibrosis.  Did you have a bx? What were the results?

[wonderingwhen]

Good morning all, I haven't had the time to visit the forum lately, but noticed this post on Platelets. I have had low platelets 69 at start of tx, they have gone down as low as 27, fortunetly they have been hanging in the mid to low 30's most of tx. I am at week 38. My Dr said his "pucker point" would be when they dropped to 25, his solution would be to reduce the Peg. He has stated that he has had other patients that have been in the high 20's and made it through tx.  My understanding is the Riba, Neup, and Procruit should not have any effects either way with your Platelets. I am on all four. My Dr. says there is nothing he can give me that would boost my count other than a Platelet transfusion and only in an emergency. Talk to your Dr about his threshold for Platelets.
I bruise fairly easy now and have cut myself and hard to stop bleeding but nothing life threatning. Just don't want to do anything to risky. My pre tx problem with platelets stems from an enlarged spleen due to the Hep.
MHO is your OK at 47 without reducing! Hope this little bit of info helps.

[Algernon]

I so sympathize about telling your kids.  Mine are 8 and 10 and I can tell that it's finally getting to them (week 23/24).  They want their old mom back and I sure want to give her to them.

Please tell me how you're feeling.  Right now, I can't imagine ever feeling physically recovered from the treatment.  I can barely force down each pill these days.

Thanks, Algie

[beamishboy]

sounds like a win/win decision...glad to know that yu will not stop trx .i do shot #29 on sunday-we will clear this virus together!!! Good Luck brother

[Dale_Ray]

I believe there are two test and one is more sensitive than the other. One of the others will give you a good answer today on their names. Good luck to your husband and you on the 12 week test. Dale

[Dale_Ray]

Hey Beamer: I do #29 tomorrow night so we are on the exact schedule. Now we can say we are in the teens (left to go). How have the sides been treating you? I've been in a hole for a few weeks and it seemed to be due to fever. Still have the fever but not as high for about a week. I guess the meds are really making the virus miserable:) Tell me how you're doing. Dale

[FlGuy]

Quest has a variety of tests. go to questdiagnostics.com, select tests for gastroenterologists, and then hepatitis tests.  You see several described, including the associated tolerance levels.
The one he gets is based on the doc's perscription. On my rx the doc wrote "hepatitis c pcr quantitative" and Quest did the test that goes to 50/ml.

[beamishboy]

how the L are you my man?? the stump is gone,no doubt,didja plant another tree?..sorry to know that yu gotta start thinkin about retrx-i know we've been over this,but it suxs and i am sure wishin ya GOODLUCK.....

[FlGuy]

That stump, or lack of it, is a continuing story around the house. Worked my butt off to get it out, plus all the roots. Repaired the lawn around it, backfilled the hole with good dirt and stuff, circled the area with a nice border. It looks great, except there's no replacement tree there yet.  So, my post-tx physical challenge was met early on but not final since it lacks a new tree.  Since I have equated it to the hcv challenge in my mind, it will remain tree-less until I overcome hcv.  My wife doesn't like my thinking or the bare space but it's day will come, and so will mine.  Until then, the fertile space that will be used for future growth is currently a nourishing spot for weeds. Health = horticulture. Hope you are doing well too beamer.

[beamishboy]

dale,wow in our teens again!..kind of 'happy days' meets the merry pranksters all over again...i am also in&out of holes;low energy and gen'l sickness,but i do keep plowin on..try to keep as active as possible(rainin here today) but lots of downtime..Basically ,i feel like sh!t-i do dose myself w/ percocets&lil puff the magic dragonslayer,but i guess we just gotta grin&bear it.....Take Care,Be Well,yr trx buddy,tom
Kalio-watched "7 beautys" last nite and really enjoyed...tonite or maybe this afternoon -the movie is 'Coffy'-"the baddest one-chick hit squad that ever hit town" starrin Pam Grier........from 1973,cripes i was still in high school and pam must be an old lady now,but she is one hot actress and i think i rem the music being pure 70's wa-wa! hope you're still bearin up w/ the mega-dose...I am wishin yu Great Goodluck! sooo happy yu are undetectible at week#4-yu Go Girl

[sfbaygirl]

I just recieved my labs and my Hgb is almost normal! Yeah! My platelets are going down and so are the others. Feeling okay, but lots of sx's and fatigue. I was wondering if anyone has information about what these mean?

WBC 1.7  it was 2.7 last week

Platelets 117 down from 145 last week

Monocytes 14.2 up from 10 last week

Abs Neutrophils  0.8 down from 3,4 last week

Abs Lymphocytes .6  down from 1.0

RDW 18.0 up from 13 last week

Thanks!

[FlGuy]

Doubling up on the IFN.  Was it pegasys or peg-intron? What was the intended dose (120 mcg?) and what did you double it to?  when you doubled did you need 2 injections, if so same day, same sitting?  Were you able to notice significantly different sx's with the higher?  Lot of questions because I have kicked the thought around too with the intention of really kicking some butt to get to und at 4 weeks also. Thanks K1. How the 'L' is your computer?

[FlGuy]

Thanks for the info.  Plan to start when school starts again which is mid-august. Plan to pre-dose riba since I have some left.  We talk about it with the kids although they don't know about the relapse yet.  We'll inform them when I re-start.  The kids acted matter-of factly when I was on tx but after tx we realized it really bothered them for a bunch of reasons.  We want them to have a good summer without worry, that's why no re-tx talk yet.

[Alady1620]

I'm glad to hear you're improving!  I have no comment or opinion on you adjusting your meds.

[Dale_Ray]

Mike: I suppose time will tell if I've done something stupid. The doctors attitude toward stopping the treatment made the decision. I hope you get good results back today and let us know what they are. Dale

Dana: I do the same thing with honey-do list. Somedays I get to them and others well you know. I can't wait to have energy again. Man I miss that most of all. Watch the sun your not that far from me and it is hot up here. My dad is from Gordo, Alabama - do you have a clue where that is ha! When you are in the sun do like me I have the biggest straw hat known to man. Dale

[amirtracy]

The Quest test you are looking for is called "heptimax" and it goes down to <5 Iu's. Good luck to him!

[amirtracy]

Dale,
I don't have any thoughts or ideas about what you should do but i wanted to wish you luck w/ your tx decision.

[FlGuy]

I feel great, and it's not that I'm trying to lift a depressed spirit or anything like that. My hair was blond as a kid and in the summer it lightens a bit.  During tx it thinned a bit but there was no fallout - the hairs themselves thinned a little bit I think. The strange thing is that already it's gone into it summer lightening and with the amount of time outdoors, it's much blonder that it has been in years. And, its thicker at least to pre-tx levels.  It apparently impressed my daughter so much that she wants me not to cut it.  She likes it long and blond, like hers, I guess.  So for me at least something positive came out of it all - my daughter thinks I look good.

[Mister beagle bailey]

How have you been doing?  Haven't seen you here much lately, still haveing bad sxs?

Beagle

[dyce]

Have been feelin poorly guy . I've takin a little break from the puter , haven't even read the news paper on it for a week or so. Hmg is 10.3 and it is wearin me down. It won't  drop quite low enough so the insurance company will ley me get procrit. Heck I'm 5 points down from base , bud it's hard to put up with. How are you doin this week?

[Algernon]

Cool on the nice blond "Do".  Mine's going to be blonde too--one way or another.

Alg