Re: Question re Stroke & Rebetron

February 28, 2001

IM no MD but platelets are cells that help you clot. Low platelets are

dangerous. YOu can bleed excessively. MY son suffers from low platelets and

has needed transfusions for it. THats how he got hep C. WHat is yout

platelet count? IF they get low, sometimes you can get a blotchy rash called

petechia .. IF you dont know your count , get copies of your blood work or

ask your doc..I always get copies of his bloodwork so I dont have to bother

the doc.

LInda

February 28, 2001

People with heart conditions are NOT allowed to do combo.

I have known 3 people just this past year who had strokes and/or heart

attacks while on combo and were combo induced.

It isn't common, and is the reason your doc checks you out before treatment.

At least, I should hope he/she does lol

I just returned from seeing my primary for a sinus infection. I hate these

things. ug ug Hope you are all well!

/ Alley

alleypat@...

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February 28, 2001

Thanks for getting back to me so quickly. Sure hope your sinus infection

goes away quickly too...they are miserable, aren't they. I haven't had

one in years....not since a homeopathic doctor recommended using warm

humidity in my house when the heat is on. Said it's much healthier than

the dryness and cold mist humidifiers. Since I haven't had a cold or

sinus infection since I started using warm mist humidity in my home, I

won't argue with the point..........

Alley/Pat wrote:

> People with heart conditions are NOT allowed to do combo.

>

> I have known 3 people just this past year who had strokes and/or heart

>

> attacks while on combo and were combo induced.

>

> It isn't common, and is the reason your doc checks you out before

> treatment.

> At least, I should hope he/she does lol

>

> I just returned from seeing my primary for a sinus infection. I hate

> these

> things. ug ug Hope you are all well!

>

> / Alley

> alleypat@...

> http://community.dallasnews.com/dmn/dfwliver

>

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February 28, 2001

this is from the rebetron.com site:

http://www.rebetron.com/treat/rebetron/yes/effects.htm

IMPORTANT SAFETY INFORMATION

Anemia associated with therapy may exacerbate symptoms of coronary disease

or deteriorate cardiac function. It is advised that complete blood counts

(CBC) be obtained at baseline and at weeks 2 and 4 of therapy or more

frequently if clinically indicated.

/ Alley

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February 28, 2001

Aw thanks yep, I keep a humidifyer running in winter, and I boil water on

the stove.

Went to primary care doc, got my aristacort shot and decadron shot I shoulda

got two weeks ago but my head hurt too much to go lol. I had to feel better

to drive to doc to get shot to help me feel better.... Does that sound like

a catch 22 if you ever heard one? lol

I already feel better, thanks my headache is gone and sinuses are

draining, however, my neck and shoulders are so tense and hurt. I have some

skelaxin (sp) but I'm so tired of swallowing pills. I'm using hot moist

towels on my shoulders and avoiding the noisy grandkids

/ Alley

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February 28, 2001

If you get low platelets, wouldn't that be a sort of good thing against a

stroke? I don't mean anemia is good, just that if you aren't clotting, how

can you have a stroke? Maybe I'm confused lol

I'm a blonde texas hepper after all

/ Alley

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February 28, 2001

I might be able to help you if you have access to an H2O store or an

Origins store....and would even send you some if you don't.

I'm into aromatherapy and someone told me of a stress cream they used

from H2O for headaches when they were pregnant. I get a lot of stress

headaches where my neck and should get so knotted they are painful. So I

thought I'd give it a try. It is so good that I keep a vial

everywhere....in my purse, by my bed, in the office. It's called

Aromaplus Stress Relief Formula. I rub it into my shoulders and neck at

the base of my skull and usually within 20 minutes the knots of tension

are starting to disolve. I can't read the rpinting on the container to

tell you what is in it....my eyes are getting old, not to mention the

rebetron messing with my vision....but it is wonderful stuff. I prefer

H2Os brand but Origins carries a similar product. I'd be glad to pop one

in the mail to you ... I always have a spare around the house.

> however, my neck and shoulders are so tense and hurt. I have some

> skelaxin (sp) but I'm so tired of swallowing pills. I'm using hot

> moist

> towels on my shoulders and avoiding the noisy grandkids

>

> / Alley

> alleypat@...

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> 12631861@...

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>

February 28, 2001

My regular doctor finally called (can you imagine, at 9pm he is just

finishing up calls) and he said my platelets aren't low but I'm starting

to get real anemic...but not dangerously anemic yet. He suggested I add

a little meat to my diet.

I don't have the counts...my regular doctor has started doing the blood

work and faxing the results to the liver guy. And I haven't walked down

to his office to pick up this last test results yet. It's a system we've

worked out because the liver guy's plebologist (or however it's spelled)

is so bad and rude I won't allow him to pull my blood. I've even issued

a complaint about him and the way he treats patients.

The liver guy and I went to every other day shots about a month ago

after my 6 month pcr. He wasn't happy with the drop in my viral load so

we decided to be real aggressive for a couple months. So my doc will

now start doing CBCs weekly until we see what happens when I add some

meat to my diet (yuck, I hate the thought of eating the flesh of an

animal I consider to be my relative).

But you know, I was thrilled with my viral load. I went from 4.2million

to 5000. Okay, so it's not undetectable but I thought that was a real

good drop. And all my liver function tests (alts, ast, etc) were normal

for the first time in years. And as long as my liver functions stay

normal...if it takes another 20 years for the virus to cause additional

liver damage, I'm in good shape. Or at least I think I am.

I'm off to bed. Nice to know that this horrible fatigue I've been

experiencing lately is nothing more than anemia. Thanks for the link.

Good night all.....

Alley/Pat wrote:

> If you get low platelets, wouldn't that be a sort of good thing

> against a

> stroke? I don't mean anemia is good, just that if you aren't clotting,

> how

> can you have a stroke? Maybe I'm confused lol

>

> I'm a blonde texas hepper after all

>

> / Alley

> alleypat@...

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> http://members.icq.com/12631861

> 12631861@...

> -------------------------------------------------------

>

February 28, 2001

Tatezi,

The anemia that is caused by the Rebetron (the

ribavirin part of it) will not respond to eating meat.

You don't have IRON DEFICIENCY anemia, you have

hemolytic anemia. All the meat in the world, or all

the iron supplements, won't help at all, and in fact,

the high iron content provides a great environment for

the virus to multiply in. Not to mention it's hard on

your liver. The ribavirin causes the destruction of

red blood cells. The ONLY solution to this problem is

a reduction in the amount of ribavirin. However,

since your regular doctor doesn't seem to be familiar

with the anemia caused by the ribavirin he may also

not know how low the hemoglobin can drop to before

your dose should be reduced, or how low it can drop

before the ribavirin should be discontinued. This is

one reason why specialists need to be determining your

treatment and following you. Your regular doctor may

be doing your blood work but your GI needs to be

reading them and interpreting them for you. As for

the low platelets, the interferon causes them to drop,

but you'd be surprised how low they can go before it

becomes a major concern. On your stroke question,

people with heart conditions should not take ribavirin

in most cases. But in people who don't have heart

problems this is a very uncommon side effect. You can

read about all these things in the prescribing

information that lists all side effects, warnings, and

dosing instructions (including when doses should be

reduced) at http://www.rxlist.com Type in Inton-A in

the search box, then scroll down to where you see

(highlighted) Intron-A/Rebetron (I think, if I'm

remembering right! I know if you type in Rebetron you

only get the patient info, not the prescribing info).

It sounds like your viral load has dropped quite a

bit, have you thought about doing DAILY dosing of the

interferon? If you do get to undetectable you really

might want to talk to your doctor about staying on the

treatment for a longer time. (Not fun to think about,

I know.) There has been some indication that the

length of treatment should be determined by WHEN you

go undetectable. It makes sense if you think about

it. Someone who doesn't go undetectable until week 40

obviously has a more resistant strain of virus than

someone who is undetectable by week 4.

Good luck!

Claudine

>

__________________________________________________

March 1, 2001

Thanks, Claudine....

My doctor does fax the labs to the liver guy and it was the liver guy

that alerted me there was something going on with my blood because he

asked me to get another test done in 2 weeks instead of 4 weeks. The

liver guy seemed unconcerned other than wanting to keep a closer watch

on the counts. But he didn't explain why...I like all the information

not just some of it. Which is why I called my regular doc.

And you are right, my regular doc has very little knowledge of our

treatment or disease and I am aware of that. That is why I depend so

much on everyone here...and as always you folks have come through for

me.

I didn't know that the ribavirin was what caused the anemia. I'm glad to

know that. Is it also the ribavirin that causes the thyroid issue, the

crankiness and the memory loss?

And thanks for suggesting going to just the interferon for maintenance.

I hadn't even thought about that even though I've read articles about

it....course any more nothing stays in my memory. I don't mind staying

on the treatment....I know how sick many of you are but in comparison

I've really had it pretty darn easy. I'm cranky, my thyroid is blown,

I'm tired...but I'm not sick like so many of you describe.

And I'm so relieved to know that eating the flesh of animals won't make

a difference. I knew not to take iron supplements but was really a tad

distressed about having to eat meat.

Everyone here is so wonderful....how fortunate that we all have each

other to reach out to.

Gotta get ready for work....today is my day for volunteering with

battered wimmins shelter children while moms are working so I need to be

on time to the office since I'm only there half a day today.

Thank you everyone......<<<hugs>>>>

Mitakuye oyasin

Tatezi

claudine intexas wrote:

> Tatezi,

> The anemia that is caused by the Rebetron (the

> ribavirin part of it) will not respond to eating meat.

> You don't have IRON DEFICIENCY anemia, you have

> hemolytic anemia. All the meat in the world, or all

> the iron supplements, won't help at all, and in fact,

> the high iron content provides a great environment for

> the virus to multiply in. Not to mention it's hard on

> your liver. The ribavirin causes the destruction of

> red blood cells. The ONLY solution to this problem is

> a reduction in the amount of ribavirin. However,

> since your regular doctor doesn't seem to be familiar

> with the anemia caused by the ribavirin he may also

> not know how low the hemoglobin can drop to before

> your dose should be reduced, or how low it can drop

> before the ribavirin should be discontinued. This is

> one reason why specialists need to be determining your

> treatment and following you. Your regular doctor may

> be doing your blood work but your GI needs to be

> reading them and interpreting them for you. As for

> the low platelets, the interferon causes them to drop,

> but you'd be surprised how low they can go before it

> becomes a major concern. On your stroke question,

> people with heart conditions should not take ribavirin

> in most cases. But in people who don't have heart

> problems this is a very uncommon side effect. You can

> read about all these things in the prescribing

> information that lists all side effects, warnings, and

> dosing instructions (including when doses should be

> reduced) at http://www.rxlist.com Type in Inton-A in

> the search box, then scroll down to where you see

> (highlighted) Intron-A/Rebetron (I think, if I'm

> remembering right! I know if you type in Rebetron you

> only get the patient info, not the prescribing info).

> It sounds like your viral load has dropped quite a

> bit, have you thought about doing DAILY dosing of the

> interferon? If you do get to undetectable you really

> might want to talk to your doctor about staying on the

> treatment for a longer time. (Not fun to think about,

> I know.) There has been some indication that the

> length of treatment should be determined by WHEN you

> go undetectable. It makes sense if you think about

> it. Someone who doesn't go undetectable until week 40

> obviously has a more resistant strain of virus than

> someone who is undetectable by week 4.

> Good luck!

> Claudine

> >

>

> __________________________________________________

>

March 1, 2001

In a message dated 3/1/01 1:09:17 PM !!!First Boot!!!, tatezi@... writes:

> I didn't know that the ribavirin was what caused the anemia. I'm glad to

> know that. Is it also the ribavirin that causes the thyroid issue, the

> crankiness and the memory loss?

>

Hi! You, obviously, haven't heard of what we call " Interferon Fog " . Yes, it

does cause memory loss, crackiness and I am, for the first time in my life,

hypothyrodic. I spent the first 35 years of my life on diets trying to lose

weight. Guess I spend the rest of it trying to gain weight. Anemia is the

most common reason the docs take people off of Rebetron. It is the reason my

doc took me off. When my RBC hit the cellar, we both said: " Enough,

already. " That count made me inelligable for any trials on the new drugs. I

finally made it to 4.0, but that still isn't within normal values.

For all you people who are fighting with your disability companies.......I

finally won.....without a lawyer. Advise: Go see a psychologist for a

couple of sessions and explain what this disease is like. Then have him/her

write a letter. I started seeing mine two weeks before I started with the

first round of treatment, which was Interferon, alone. She has been seeing

me off an on now , for three years. The Navy demands that you see, either a

psychiatrist or a psychologist if you have a terminal illness or are

undergoing chemo. Speak with your primary care physician. None of them

wants to be responsible for a suicide. Good luck and good. Anne

March 1, 2001