low platelet count

hi-I'm new at this-on week 6 of pegasys/copegus tx-the nurse said my platelets have dropped to 76 and wants me to reduce my tx dose by half-seems to me if i can't take the whole dose i am "spitting in the wind" so to speak-anybody else been through this or have any feedback-thanks & take care

[jonihs]

About 7 weeks ago my platelettes were low enough that I was in danger of bleeding out. I have very bad cirrhosis and this is probably my 1 shot, so when the G.I. I was originally seeing stopped tx. altogether, I called my original Internist, and maybe it's an advantage living in a small community, but she put me in the hospital for 5 days and took me off a couple of drugs, Effexor 225mg., and seroquel 50mg. I didn't miss a riba and did not lower my dosage of Pegasys. My platelettes came up slowly, but they came up. I gues my point is, knowing my story as well as she does, she would have put me on I.V. platelettes, anything to keep from lowering my dosage. That would have been her last choice.T onight I do my 7th shot and my platelettes leveled off and stayed there so now I only have to have blood work once a month. for 10 weeks I had it weekly. I think that my  problems had as much to w/ too much other drugs as w/ tx.    Best wishes, Joni

[Oreos]

It's not unusual for platelets to drop while on tx.  I'm on week 18/48 and my platelets are hovering around 70-75 (Started at 197).  My Dr. has not reduced my dosage.  From what I remember reading here, I think the "worry" number for platelets is around 50.  (Could someone confirm?)  My Dr. is watching my platelets closely, but believes they have stabilized.  Since you're only at 6 weeks, I'd ask for a second opinion before cutting in INF.  The first 12 weeks is especially critical.  

Good luck!

[liv4GOD]

my plat. got down to 40 and they cut back then cut me off tx later. some people can go into the mid teens depends how sick you are. this forum has a wealth of info. so read them they are very helpful.   GOD BLESS YOU LIV4GOD-ROBERT

[Oreos]

More info:  There was a study posted recently on the possible benefits of taking Vioxx with Pegasys tx to improve platelet count.  Here's the line to the study:

http://www.natap.org/2003/AASLD/day7 1.htm

FYI - I'm on 180 mg Pegasys/1000 Copegus

[Tony-z]

Welcome to a great Forum. You will find good information and some great people here.

            God Bless,

             Tony

[tomrons]

Hi my name is Tom.A normal platler count range is(140-400)X ave
is aorund 250.Im assuming you have Hepatis what kind A,B,C,D,E,?
Anyway your Docs is correct when your platlets drop that low
a full dosage will make your plalets drop even lower big trouble.
One day you will do something as simple as brushing your teeth
and you will Hemorage they may be be able to stop it you bleed to death.
I have hep c and cirrhosis,sever damage to my liver Ast and Alt
numbers on your blood test are important.Prothrombin Time by
its self not normalized.Theres lots of other things.
I cant take the injections because my platlets are lower than
yours with cirrhosis.Im going to University of Pennsylvania
Tranplant Liver Center next week for final evaluation.If i get a transplant then when the HCV how much hep c do i have at that time i wii be able to start the injections.Im backwards but what
you gona do.

                 Hope Feel Better Hang In There !
            e-mail: Tjoelbirds5@aol anytime you want to talk
                    im home all day.

[tomrons]

Hi my name is Tom.A normal platler count range is(140-400)X ave
is aorund 250.Im assuming you have Hepatis what kind A,B,C,D,E,?
Anyway your Docs is correct when your platlets drop that low
a full dosage will make your plalets drop even lower big trouble.
One day you will do something as simple as brushing your teeth
and you will Hemorage they may be be able to stop it you bleed to death.
I have hep c and cirrhosis,sever damage to my liver Ast and Alt
numbers on your blood test are important.Prothrombin Time by
its self not normalized.Theres lots of other things.
I cant take the injections because my platlets are lower than
yours with cirrhosis.Im going to University of Pennsylvania
Tranplant Liver Center next week for final evaluation.If i get a transplant then when the HCV how much hep c do i have at that time i wii be able to start the injections.Im backwards but what
you gona do.

                 Hope Feel Better Hang In There !
            e-mail: Tjoelbirds5@aol anytime you want to talk
                    im home all day.

[hph5477]

My platelets have jumped up and down.  Just did 23/48 this AM.  My chart from the doc shows no concern on the platelets til they drop to 50 or below.

I agree with Oreos that I would double check on this before dropping my dosage.  My PA had indicated previously that the first 12 wks were the most critical on the INF and then the RIBA after that.  She also told me that if you make the first 8 wks with numbers in range, then most people will make the full tx without extra help or dropping dosages.

Good luck with your tx.

[honey1616]

Thanks for all the great research!!  <<<<winks>>>>  Great to have ya here!

[Tim in Tenn]

I was on tx for 14 weeks.I am feeling pretty good right now ,lots of energy but its because of the prednisone.I don't look forward to feeling fatigued all the time from the hep c after I finish the course of prednisone.My viral load was done the same day that they caught my platelet count so low and it came back undetectable.They are going to check it again in a couple of months but if its still undetectable it will be a miracle because I only did 14/48 on tx.But I can hope anyway.Thanks for asking.

[Tim in Tenn]

Usually 30,000 is the danger number for platelet counts.Mine dropped to less than 10,000 in December and tx was stopped.I had a 3 week long nosebleed from it.Coulda been worse though.Anything less than 20,000 and the possibility of brain hemorrhage is present.,or gastrointestinal bleeding.While I hate not being able to finish my tx its better than bleeding to death.My docs want me to wait for new tx options in the future.Platelets were back up to 112,000 in February after taking prednisone and I will have to be monitored for a while to make sure they stay up.Good luck to you all.

[honey1616]

Tim...how long were you on tx and how long have you been off?  And what I'm really wanting to know is...how do you feel right now?

[woodbeegood]

thanks for your help everyone-by the way i was diagnosed last aug 1b viral load came in just under 2 mil-take care

[new-sojourn]

I think you are absolutely right about all the additional drugs screwing up blood values.  Sometimes its just better to cowboy up and ride thru the discomfort.

[honey1616]

I agree with the less on meds for pains.  We have so much going into our bodies already and I really think we can have so much going on that its bound to cause more complicated problems for us.  If I get really bad headaches or stomach and has to be bad, I will then take a couple of tylenol.  Chevy, I also have kinda weird rash on my leg that has been itching.  And I know what you mean about the beginning sx's and now a new crop have introduced themselves to me!!  LOL  I love this board because otherwise if I was always complaining to my family and friends...they would think I was a hypochondriac!! Sometimes I feel that way LOL

[honey1616]

I read your posting and can only imagine how hard that would be to go through.  You seem like you are handling it very good and I wish you the best of Luck!!

[layla]

That was me that mentioned the dots. That is a good  description of "my dots". Funny I've been taking more aspirin lately. I'm not real worried about it but I thought I may as well ask here. Thanks. LL

[layla]

Yes I just checked and the board must not be updated. My next shot is #56 along with 800 riba per day. I lowered riba from 1000 to 800 a couple weeks ago. I've had fairly mild sx on tx and have found the latest problems to be due to something else. Not sure that is so good since at least with tx they would go away when I was done. I was happy to read your post. Thanks again. LL

[cindee]

woodbeegood, Hi and WELCOME!!!!! My platlets dropped to 9,000 during tx. My doctor had me going evry wk for blood work. He told me to be very careful with shaving my legs and anything that might cause me to get cut. I stayed on tx for the 48 wks. I wish you best!!! and I will say some extra prayers for YOU!!! Tx is a weird thing....I found out last wk that I have replased...better than being a non-responder...I start a case study @ Duke University Medical on April 28th. You hang in there and we're all pullin' for ya! luv, Cindee

Chevy, Hey girl...I had and still have the "red spots" on my palms and neck (some finger tips too). I guess that's why my recent news about replasing didn't really "floor" me. I knew it in my heart.....I have this sorta thing...my Mother has it too, it's like we "know" things before the fact. I am staying up-beat, but still sleeping a LOT !!!!!! Do you have my e-mail addy? It's  ***@****  Give me a shout sometime. Love ya girl, Cindee

[cheriums]

Yes, you should be able to keep your Peg. dose up until your platelet count falls below 50; your doc needs some education!  He/she could just read the PDR on Pegasys.  Unless you have some special problem/ consideration.  My platelet count fell fast and far in the first four weeks. (Took me by surprise, that did!) I started Vioxx, which was a no-brainer for me since I was already taking Celebrex for my arthritis -- I just switched.  I only lost 9 more platelets from the count, after starting Vioxx ... at least, so far.  So good.  The Vioxx would help with side effects, obviously, like joint pain, muscle aches ... so a two-for-one drug.

[cheriums]

Thank you for posting the link to the article about the Vioxx study!  I had only seen a brief summary, (started taking Vioxx on that basis alone) and had been looking everywhere for the article without finding it!  I've printed it out, now.  THANK YOU!!

[cuteus]

I wonder if the benefit extends to other NSAIDs, only my RBC suffered considerably, and I take ibuprofen regularly...hum

[shebee]

Hubby's plateletts hover around 37...have dropped to 25 and still does 15 of infergen.  (this is 2nd time around)

On peg intron & pegasys...he dropped his dose to 1/2 a few times...take your doc's advice.

[jakmak52]

On Week #10,180ug Peg & 1200mg Riba,also taking 150mg Wellbutrin, 10mg Prozac, & Uroxatral for BPH, 800mg Ibuprofin from time to time, and phenergine occassionally for nasea. Viral Load was originally 3,968,000 and dropped to 833,000 after 4weeks. WBC & Platelets were low and Dr. wants to see me again in two weeks to check it. I'm Geno 1a with no liver damage.(TG)I'm just wondering and a little anxious of what the Dr. will recommend if the platelets don't elevate...Vioxx or Neurema?? Who knows..got to kill the HCV at any rate.

[jakmak52]

On Week #10,180ug Peg & 1200mg Riba,also taking 150mg Wellbutrin, 10mg Prozac, & Uroxatral for BPH, 800mg Ibuprofin from time to time, and phenergine occassionally for nasea. Viral Load was originally 3,968,000 and dropped to 833,000 after 4weeks. WBC & Platelets were low and Dr. wants to see me again in two weeks to check it. I'm Geno 1a with no liver damage.(TG)I'm just wondering and a little anxious of what the Dr. will recommend if the platelets don't elevate...Vioxx or Neurema?? Who knows..got to kill the HCV at any rate.

[Ms Bee]

hi my name is georgina and im deaf and im kinda scared...last may my platelet count was 139 and this week it went to 90 and dr wants me test more. and this morning i went bathroom and went number 2 and got bright red blood all over it.  is that going to effect my platelet worse?

[jan541]

first time checking this site out.  i was told that my platelets were low 2 years ago, but didn't get that lab rpt.  recently got one.  i was down to 35.  i have only begun finding out the seriousness of this condition.  i have hep c 1a, probably for a long time.  maybe HIV too.  no test.  i can't take anymore bad news right now. i have "the dots" too.  anyway i was wondering if Effexor is bad for people w/ our disorder.  i was on that for quite a while.  i cannot get med coverage for several months so no dr now.  any ideas?? Jan

[scoop49]

when i started tx 14 weeks ago platelets were at 70
since then they have dropped to be as low as 24- usually in low 30's.
platelets were low for three years before starting treatment -but my doc says new studies indicated not to worry quite so much and that the 50 count is no longer considered time to stop tx. (please keep in mind probably no two of our conditions are the same and these questions of when to vary tx are complicated-talk to your doc-get a second opinion if you think best.

luckily,although  i have advanced disease my tx has not been anything close to unbearable (low energy is my worst problem). last week i had a 2 and 1/2 log drop (vl now less than 600) and my doctor is cautiously optimistic

she said as long as i can stay on tx 80% of the time that as long as my platelets hold i have a good chance. also i have been finding out that even if i don't clear-and stay clear-that the treatment will have improved my liver condition.

by the way- does anyone know that if for example we need to stop or greatly reduce dosage - would that accelerate the disease (kind of like if you don't complete all the penicillin like they always tell you)
or would it continue without a noticeable boost. also has anyone knowledge if as platelets drop they tend to stabilize at some level (this seems to be true in my case-but my 34 to 29 to 32 to 36 to 24 last counts are not exactly cause for celebration.

hone your collective swords my best thought to us all
(hep-hep-away!  -as a friend emailed.
scoop