low platelets

[Guest guest]

Hi,

I also have low platelets and have posted to a few lists about this.

The doctor I have now will not treat me, so I have asked my GP for a referal

to a specialist in one of the bigger cities.

I have recieved e-mails from people who have reieved treatment even with low

platelets.

Doc, what is your opinion on this subject?

Sue

[Guest guest]

I too have heard of many people with low platelets

being treated. If the cause of the low platelets is

liver disease then it would make sense to treat,

unless they were seriously low. Maybe that medication

Marilyn was asking about, Interleukin-11, which is a

" stimulation of platelet production " drug is something

for y'all to look into also. There is another drug

sometimes used with low platelets, but I don't think

I've heard of it being used in HCV. I THINK it is

called DDAVP??? I could have all those initials mixed

up! Maybe it's just used for situations like

emergency surgery or something, I really don't know.

--- <suejacks@...> wrote:

> Hi,

> I also have low platelets and have posted to a few

> lists about this.

> The doctor I have now will not treat me, so I have

> asked my GP for a referal

> to a specialist in one of the bigger cities.

> I have recieved e-mails from people who have reieved

> treatment even with low

> platelets.

>

> Doc, what is your opinion on this subject?

>

> Sue

>

>

__________________________________________________

[Guest guest]

I had low platelets. The disorder was called immune thrombocytopenia purpura. I

was told that my platelets were not being recognized by my spleen as being part

of my system and was killing them off while they were still young. My platelets

had gotten dangerously low and could not be brought up by any medication.

Prednisone or gamma globulin did not work. I had my spleen removed and that

solved that problem. They are normal now. My spleen weighed 3 1/2 lbs. It

was bigger than my daughter when she was born. She weighed 1 lb. 15 ozs. I

still am confused about the whole matter. Did my spleen act up before the liver

disease or did it do it afterwards. I know the liver can interfere with the

spleen and platelet production, but can in turn the spleen if not functioning

normally interfere with the liver and cause damage. I don't know.

Take care and God Bless

Virginia

[Guest guest]

I had low platelets. The disorder was called immune thrombocytopenia purpura. I

was told that my platelets were not being recognized by my spleen as being part

of my system and was killing them off while they were still young. My platelets

had gotten dangerously low and could not be brought up by any medication.

Prednisone or gamma globulin did not work. I had my spleen removed and that

solved that problem. They are normal now. My spleen weighed 3 1/2 lbs. It

was bigger than my daughter when she was born. She weighed 1 lb. 15 ozs. I

still am confused about the whole matter. Did my spleen act up before the liver

disease or did it do it afterwards. I know the liver can interfere with the

spleen and platelet production, but can in turn the spleen if not functioning

normally interfere with the liver and cause damage. I don't know.

Take care and God Bless

Virginia

[Guest guest]

I have Congenital ITP and so does my daughter

sometimes they refer to the " I " being Idiopathic which

means unknown cause.....Connie

--- isqazi <isqazi@...> wrote:

> I had low platelets. The disorder was called immune

> thrombocytopenia purpura. I

> was told that my platelets were not being recognized

> by my spleen as being part

> of my system and was killing them off while they

> were still young. My platelets

> had gotten dangerously low and could not be brought

> up by any medication.

> Prednisone or gamma globulin did not work. I had my

> spleen removed and that

> solved that problem. They are normal now. My

> spleen weighed 3 1/2 lbs. It

> was bigger than my daughter when she was born. She

> weighed 1 lb. 15 ozs. I

> still am confused about the whole matter. Did my

> spleen act up before the liver

> disease or did it do it afterwards. I know the

> liver can interfere with the

> spleen and platelet production, but can in turn the

> spleen if not functioning

> normally interfere with the liver and cause damage.

> I don't know.

>

> Take care and God Bless

> Virginia

>

>

>

__________________________________________________

[Guest guest]

I have Congenital ITP and so does my daughter

sometimes they refer to the " I " being Idiopathic which

means unknown cause.....Connie

--- isqazi <isqazi@...> wrote:

> I had low platelets. The disorder was called immune

> thrombocytopenia purpura. I

> was told that my platelets were not being recognized

> by my spleen as being part

> of my system and was killing them off while they

> were still young. My platelets

> had gotten dangerously low and could not be brought

> up by any medication.

> Prednisone or gamma globulin did not work. I had my

> spleen removed and that

> solved that problem. They are normal now. My

> spleen weighed 3 1/2 lbs. It

> was bigger than my daughter when she was born. She

> weighed 1 lb. 15 ozs. I

> still am confused about the whole matter. Did my

> spleen act up before the liver

> disease or did it do it afterwards. I know the

> liver can interfere with the

> spleen and platelet production, but can in turn the

> spleen if not functioning

> normally interfere with the liver and cause damage.

> I don't know.

>

> Take care and God Bless

> Virginia

>

>

>

__________________________________________________

[Guest guest]

I need the same clarification.

Thanks

MEL

[Guest guest]

I need the same clarification.

Thanks

MEL

[Guest guest]

Mike,

sorry to hear about your platelets. I dunno much about that tho sorry. The

whole time I was on treatment my platelets lowered a bit, but never

dangerously low. I don't know why some do and some don't, maybe if we knew

we could help everyone tolerate treatment better.

Good luck

alley

[Guest guest]

Hi Mike,

The low platelets are a side effect of the

interferon. Doctors seem to be getting worried less

and less about low platelets during treatment. I guess

people just do better even when the platelets are low

than they used to assume they would. 50 seems to be

the point now where they are reducing the dose of

interferon. I have also heard of Neumega (generic

name oprelvekin - Interleukin 11) being used, and I

believe there is a doctor doing a study right now

using it along with Rebetron. You can look up more

info on Neumega at:

http://www.rxlist.com/cgi/generic3/oprelvek.htm

It seems like I used to have some info on it's use in

HCV somewhere, I'll see if I can find it and post it.

The only other things I have ever heard about

increasing platelets are to make sure you are getting

adequate B vitamins, especially B12 and folic acid,

and (believe it or not) one of the possible side

effects of ribavirin, according to Dr. E. Lawitz at

the Brook Army Medical Center, is increased platelets!

I had never heard or read that anywhere before he

spoke at our local support group meeting.

Good luck,

Claudine

__________________________________________________

[Guest guest]

In a message dated 7/12/2001 10:36:38 PM Eastern Daylight Time,

alleypat@... writes:

> Mike,

>

> sorry to hear about your platelets. I dunno much about that tho sorry. The

> whole time I was on treatment my platelets lowered a bit, but never

> dangerously low. I don't know why some do and some don't, maybe if we knew

> we could help everyone tolerate treatment better.

>

> Good luck

>

Dear Mike,

Mine dropped into the cellar........one of the reasons that my doctor and I

decided that I was Ribavirin intolerant. BE VERY CAREFUL about using knives

or anything that has a cutting edge. That includes paper. You could have a

REAL problem with blood clotting. I know everyone is telling you not to, but

look at your RBC (red blood cell count). If you are developing anemia along

with a low platelet count, temporarily discontinue treatment until both of

them get, at least into the low normal range. You don't want to develop

anemia along with everything else.

You might want to consider discussing continuing treatment, but temporarily

lowering your dosage, or skipping a something. I had to go by Navy

protocol.....or else. If I had known then, what I know now, I would have

cut the Ribavirin pills in half before I swallowed them. But that was then

and this is now.

Hope this helps.

Anne

[Guest guest]

Ann, WHY? do you believe it is the rebratron that lowers or has

an effect on the platelet count? You are the second person who

has already mentioned this and how you would have cut your own

dosage of the rebratron. I am continually told that rebratron

has or may have an effect on anemia..but it is the interferon

that effects the platelet count. So, basically my question to

you is where did you get the idea or information that it is the

rebratron that effects the 'platelet' count? Very curious to

know the answer. Thank you

--- AVansi7465@... wrote:

> In a message dated 7/12/2001 10:36:38 PM Eastern Daylight

> Time,

> alleypat@... writes:

>

>

> > Mike,

> >

> > sorry to hear about your platelets. I dunno much about that

> tho sorry. The

> > whole time I was on treatment my platelets lowered a bit,

> but never

> > dangerously low. I don't know why some do and some don't,

> maybe if we knew

> > we could help everyone tolerate treatment better.

> >

> > Good luck

> >

>

> Dear Mike,

> Mine dropped into the cellar........one of the reasons that my

> doctor and I

> decided that I was Ribavirin intolerant. BE VERY CAREFUL

> about using knives

> or anything that has a cutting edge. That includes paper.

> You could have a

> REAL problem with blood clotting. I know everyone is telling

> you not to, but

> look at your RBC (red blood cell count). If you are

> developing anemia along

> with a low platelet count, temporarily discontinue treatment

> until both of

> them get, at least into the low normal range. You don't want

> to develop

> anemia along with everything else.

> You might want to consider discussing continuing treatment,

> but temporarily

> lowering your dosage, or skipping a something. I had to go by

> Navy

> protocol.....or else. If I had known then, what I know now,

> I would have

> cut the Ribavirin pills in half before I swallowed them. But

> that was then

> and this is now.

> Hope this helps.

> Anne

>

>

>

[Guest guest]

Mike,

I am one of Dr. Lawitz's patients.

My platelets have dropped about 80% and he doesn't seem to be concerned. I

have another blood draw in one week and will let you know what level it is

now if you want. They dropped fast in the beginning and then started to

slow way down but haven't gone up at in all in 4 months I have been on

combo. I think my last blood draw my platelets were like 120.

So far, the only thing I have noticed is that I bruise more easily (and I am

unsure that this is caused by the platelet's, but I think so). Otherwise, I

don't think it is effecting me.

Edie

Re: Low platelets

> Hi Mike,

> The low platelets are a side effect of the

> interferon. Doctors seem to be getting worried less

> and less about low platelets during treatment. I guess

> people just do better even when the platelets are low

> than they used to assume they would. 50 seems to be

> the point now where they are reducing the dose of

> interferon. I have also heard of Neumega (generic

> name oprelvekin - Interleukin 11) being used, and I

> believe there is a doctor doing a study right now

> using it along with Rebetron. You can look up more

> info on Neumega at:

> http://www.rxlist.com/cgi/generic3/oprelvek.htm

>

> It seems like I used to have some info on it's use in

> HCV somewhere, I'll see if I can find it and post it.

> The only other things I have ever heard about

> increasing platelets are to make sure you are getting

> adequate B vitamins, especially B12 and folic acid,

> and (believe it or not) one of the possible side

> effects of ribavirin, according to Dr. E. Lawitz at

> the Brook Army Medical Center, is increased platelets!

> I had never heard or read that anywhere before he

> spoke at our local support group meeting.

> Good luck,

> Claudine

>

>

>

> __________________________________________________

>

[Guest guest]

Youre right it is IFN which effects the platelets and not Ribavirin.

[Guest guest]

Thanks for your reply, Edie.

I had my weekly blood test and and I'll be darned after dropping 20

points last week - it gained 30 this week (now at 101) This is a bit

like a roller coaster ride, huh?

I think that water may have been the culprit as I made a concerted

effort to drink lots more. II just moved the water closer to the

computer.

I'm right behind you at 3 months of TX. Have you ahd a PCR yet?

Wishing you well,

Mike

Hepatitis C Support Forum

http://www.delphi.com/hepconline/start

Edie wrote:

> Mike,

> My platelets have dropped about 80% and he doesn't seem to be

> concerned.

Hepatitis C Support Forum

http://www.delphi.com/hepconline/start

[Guest guest]

Mike,

I have not had my PCR done since the beginning of treatment. It was 3.2

million copies then.

Doctor says he is going to do another PCR at 24 weeks of treatment. I got

about 7.5 weeks to go until that happens. Then, if I have dropped a

logrithm (in other words, drop a zero off of 3,200,000 copies), then I get

to go on with treatment until 44 weeks. If I haven't dropped at least a

logrithm, then he is going to take me off treatment.

I can't hardly wait to get to week 24 to see if this is working.

I can't hardly drink enough water! I drank 4.5 liters of just plain water

last week DAILY. I also drank a half gallon of Gatorade in addition to the

water DAILY. And I am still dehydrated!

Does anyone know how much is too much to drink? I am concerned about

overworking/damaging my kidneys.

Edie

Re:Low platelets

> Thanks for your reply, Edie.

>

> I had my weekly blood test and and I'll be darned after dropping 20

> points last week - it gained 30 this week (now at 101) This is a bit

> like a roller coaster ride, huh?

>

> I think that water may have been the culprit as I made a concerted

> effort to drink lots more. II just moved the water closer to the

> computer.

>

> I'm right behind you at 3 months of TX. Have you ahd a PCR yet?

>

> Wishing you well,

>

> Mike

>

>

> Hepatitis C Support Forum

> http://www.delphi.com/hepconline/start

>

> Edie wrote:

>

> > Mike,

> > My platelets have dropped about 80% and he doesn't seem to be

> > concerned.

>

> Hepatitis C Support Forum

> http://www.delphi.com/hepconline/start

>

>

>

>

[Guest guest]

<<Ann, WHY? do you believe it is the rebratron that lowers or has

an effect on the platelet count? You are the second person who

has already mentioned this and how you would have cut your own

dosage of the rebratron. I am continually told that rebratron

has or may have an effect on anemia..but it is the interferon

that effects the platelet count. So, basically my question to

you is where did you get the idea or information that it is the

rebratron that effects the 'platelet' count? >>

I'm wondering if we're not confusing " rebetron " which is the combination of

meds with " ribavarin " which is the pills.

Both the meds will cause problems, and I'm sure the experts here can tell

you which one causes which.

Just wanted to clarify the wording and make sure that's what you meant

[Guest guest]

Doc sent through a post after Ann's original message that it is the

interferon that causes the low platelettes.....

Alley/Pat wrote:

> <<Ann, WHY? do you believe it is the rebratron that lowers or has

> an effect on the platelet count? You are the second person who

> has already mentioned this and how you would have cut your own

> dosage of the rebratron. I am continually told that rebratron

> has or may have an effect on anemia..but it is the interferon

> that effects the platelet count. So, basically my question to

> you is where did you get the idea or information that it is the

> rebratron that effects the 'platelet' count? >>

>

> I'm wondering if we're not confusing " rebetron " which is the

> combination of

> meds with " ribavarin " which is the pills.

>

> Both the meds will cause problems, and I'm sure the experts here can

> tell

> you which one causes which.

>

> Just wanted to clarify the wording and make sure that's what you meant

>

>

>

>

[Guest guest]

<<Ann, WHY? do you believe it is the rebratron that lowers or has

> an effect on the platelet count? >>

<<Doc sent through a post after Ann's original message that it is the

interferon that causes the low platelettes.....>>

Yes, Interferon is one part of the REBETRON. Rebetron is the brand name for

Interferon and Ribavarin packaged together. That is what got me confused.

Perhaps she meant she thot the Ribavarin lowered her platelets, but Doc told

her it was the Interferon. So you could say the Rebetron did haha just one

half of it.

Hope it's better.

alley

[Guest guest]

<<Ann, WHY? do you believe it is the rebratron that lowers or has

> an effect on the platelet count? >>

<<Doc sent through a post after Ann's original message that it is the

interferon that causes the low platelettes.....>>

Yes, Interferon is one part of the REBETRON. Rebetron is the brand name for

Interferon and Ribavarin packaged together. That is what got me confused.

Perhaps she meant she thot the Ribavarin lowered her platelets, but Doc told

her it was the Interferon. So you could say the Rebetron did haha just one

half of it.

Hope it's better.

alley

[Guest guest]

<<Ann, WHY? do you believe it is the rebratron that lowers or has

> an effect on the platelet count? >>

<<Doc sent through a post after Ann's original message that it is the

interferon that causes the low platelettes.....>>

Yes, Interferon is one part of the REBETRON. Rebetron is the brand name for

Interferon and Ribavarin packaged together. That is what got me confused.

Perhaps she meant she thot the Ribavarin lowered her platelets, but Doc told

her it was the Interferon. So you could say the Rebetron did haha just one

half of it.

Hope it's better.

alley

[Guest guest]

<<Ann, WHY? do you believe it is the rebratron that lowers or has

> an effect on the platelet count? >>

<<Doc sent through a post after Ann's original message that it is the

interferon that causes the low platelettes.....>>

Yes, Interferon is one part of the REBETRON. Rebetron is the brand name for

Interferon and Ribavarin packaged together. That is what got me confused.

Perhaps she meant she thot the Ribavarin lowered her platelets, but Doc told

her it was the Interferon. So you could say the Rebetron did haha just one

half of it.

Hope it's better.

alley

[Guest guest]

I got the same thing in my blood work and I was alos very low in

testostorone.

Does the platelet thing mean we bleed more than others?

> Just want to know if anyone out there has had a low platelet

count?

> I just got my blood work from my doctor. Could this be related to

> candida?

>

> Thanks!

> Roni

[Guest guest]

lori..... I wonder why you were taken off the meds in the first place as

the disease is chronic and progressive. I can see perhaps trying to go

without the prednisone but the disease is incurable and coming of the

immuno would seem to encourage the immune system to start doing it's

nasty work again.

LFTs are a misnomer as they do not measure how your liver is actually

functioning. You have had a biopsy, perhaps you need another to see how

damaged your liver is. An enlarged spleen as well as an enlarged liver

can be palpitated besides scanned. What other indications are on your

blood tests,,,,serum albumin is one indicator of damage as is

prothrombin-time and to a much lesser degree serum billirubin..

Another thing you might look into is a liver specialist

(hepatologist)..... In order to actually get a transplant your liver

would have to be damaged to such a degree that death is the only

conclusion...before you get to that stage you would most likely suffer

from other conditions such as ascites and edema,bleeding varices and

possibly hepatic encephalopathy. If your liver is continuing to be

damaged by AIH I would think it wise to go back on meds.

I think prednisone is used sometimes in order to maintain platelet

levels. There are other reasons for low platelet counts than the liver

disease (of course none of them good) How high were your prednisone

dosages to cause that much damage in such a short time? I really believe

you should see a liver specialist in addition to your GP. Tell us more.

love jerry

[Guest guest]

Lori,

The CT scan will tell if your spleen is enlarged. Mine is and I also run low

platelets and WBC's as they are being 'gobbled up' by my big spleen (my

doc's explanation). In my case the planned outcome is the same, a new liver

will resolve the problem with my spleen. Is your belly large... A pseudo

pregnancy type look?

I have lots more to share but right now I'm off to work.

Later, Patty

[ ] Low platelets

I have been diagnosed with autoimmune hepatitis for about 5 years

now. I have been through the prednisone and Imuran therapy and at

age 34 have dealt with cataracts from the side-effects of the meds.

I now have been dealing with platelet level at 59,000 and have been

unable to raise with prednisone and IG infusions. My primary MD is

sending me for a CT scan on my spleen to see if it's enlarged and if

so, she believes there is probably more liver damage than the

previous biopsy had shown. She believes that even though my liver

enzymes have been in the normal range since coming off the Imuran-

Prednisone regime, my liver could still be attacking itself and a

transplant may be needed in the future.

I would appreciate any information or thoughts anyone may have to

help ease my mind since I (and not my doctor) am the only one who

seems concerned about this.

Thank you in advance.

Lori Essert