Re: Not Drinking Alcohol....How Important?

[Guest guest]

I am with Kathy F. on this one. Alcohol is bad for compromised liver

due to constant uptake of MTX or even with standard painkillers like

celebrex or tylenol. The liver filters these things out and it is

working hard doing this.

PA and drinking is also bad: alcohol causes swelling and puffiness.

Our skin, joints and soft tissues are already swollen. It is a

poison. When someone's system is already weakened by disease, alcohol

is all the harder on it. If you have ever wiped alcohol on an open

wound, you know how powerful just a drop can be. Think of a person

with PA as having a whole body that is constantly being wounded. The

alcohol does nothing to promote healing and, in fact, impedes

healing. Also, it is a diuretic, therefore, it removes much-needed

water from cleansing the system.

[Editor's Note: Thanks, Brent. You are so right. When I was about 16 and of

the age where kids start drinking surrepticiously, my mother took me down to the

basement with a bottle of rum. She poured a little of the rum on an old coffee

table that we kept near the pool table. A few minutes later, she wiped up the

rum and pointed out that the alcohol had eaten the surface of the coffee table.

She then told me that while she knew I would drink with my peers, I should

remember that if alcohol can destroy the surface of wood, I should just imagine

what it would be doing to my insides. It was a vivid lesson and here I am 41

years later still talking about it - so clearly it is a lesson I never forgot.

Alcohol is not our friend. Kathy F.]

[Guest guest]

Thanks Kathy for the info.

I'm processing my recent losses and I don't know if I'm willing to

give up the precious times with friends that usually revolve around

a bottle of good wine, or the horrible day that feels soooo much

better when I can decompress with a glass of good wine. Temporarily

it would be no problem, but for the rest of my life?

I doubt the French or Italians would give up this pleasure. There

is a point where one can give up too much and life isn't worth

living anymore.

Maybe this is one too many losses for me to handle right now, maybe

it's because I live near the wine country in California, maybe it's

because I have no idea yet what the Rheumatologist is going to say

and I'm depressed. But I'm sick of all these losses.

Hollie

[Editor's Note: Hollie, I'm sorry to hear about your losses but we shouldn't

use the death of others as an excuse to destroy our own lives. Within a 24

month period, I lost my mother, 5 friends on 9/11 (I live in NYC and worked in

the financial services industry - in fact, I worked in the Trade Center during

the 1993 bombing), another friend died from a massive infection the following

New Year's Eve and the following August, my close friend Gerry hung himself.

This was clearly the lowest point in my life and the weight of their deaths was

almost more than I could bear. I still would give up everything I own to have

one more cup of coffee with my mother. BUT: Drinking would not have brought any

of them back and participating in the destruction of my own body would have

dishonored their memories. It was better to face my grief than to drown my

sorrows. If all your friends need booze to be sociable, maybe you should look

for some friends who are stimulating to be with who don't need liquor. I'm not

trying to be harsh here, but I wish you could hear yourself making excuses.

This does not sound like a casual drinker - it sounds like booze has become one

of the centers of your joy - and that is a potentially deadly thing for you

because you have a very, very serious disease. PA won't kill you, but it will

take away pieces of your life slowly. Booze will hasten that process and will

add, not detract, to your pain and suffering. Kathy F.]

[Guest guest]

Kind of hard to believe that we are even having this " conversation "

or string on here. But it's great that there are folks on here who

are willing to speak up for someone that they don't know. I'm hoping

that anyone on here who is still claiming alchol restrictions as

a " loss " in their lives will be touched by how us gimps have reached

out and taken our time to encourage him or her to see the light on

this one. I myself have never ever heard anyone tell me " Man....if

it weren't for alchol, I'd never be the success I am today "

or " Booze has brought more peace and love into my life than I ever

imagined " or " I got together with friends last night and had a few

and even though my head hurts and I'm a little queesy...I think the

whole event turned my life around and from here on out, everything's

going to be better! " . Ok...I could go on and perhaps I'm getting a

bit carried away but you get the picture. This is what I tell myself

and my daughter...there are no success stories with alcohol. I love

good wine and a handcrafted wheat beer or even a nice chewy, thick

stout. But I love life more. I love more. I love chocolate

more...but that's another string. -Betz

>

> I am with Kathy F. on this one. Alcohol is bad for compromised

liver

> due to constant uptake of MTX or even with standard painkillers

like

> celebrex or tylenol. The liver filters these things out and it is

> working hard doing this.

>

> PA and drinking is also bad: alcohol causes swelling and puffiness.

> Our skin, joints and soft tissues are already swollen. It is a

> poison. When someone's system is already weakened by disease,

alcohol

> is all the harder on it. If you have ever wiped alcohol on an open

> wound, you know how powerful just a drop can be. Think of a person

> with PA as having a whole body that is constantly being wounded.

The

> alcohol does nothing to promote healing and, in fact, impedes

> healing. Also, it is a diuretic, therefore, it removes much-needed

> water from cleansing the system.

>

> [Editor's Note: Thanks, Brent. You are so right. When I was

about 16 and of the age where kids start drinking surrepticiously,

my mother took me down to the basement with a bottle of rum. She

poured a little of the rum on an old coffee table that we kept near

the pool table. A few minutes later, she wiped up the rum and

pointed out that the alcohol had eaten the surface of the coffee

table. She then told me that while she knew I would drink with my

peers, I should remember that if alcohol can destroy the surface of

wood, I should just imagine what it would be doing to my insides.

It was a vivid lesson and here I am 41 years later still talking

about it - so clearly it is a lesson I never forgot. Alcohol is not

our friend. Kathy F.]

>

[Guest guest]

Kathy, I don't know what you meant by " we shouldn't use the death of

others as an excuse to destroy our own lives " . I didn't mention the

death of anyone.

I guess you wanted to talk about your own losses from deaths. I was

referring to the losses coming from my PA diagnosis only 2 weeks ago.

Since the stated purpose of this group is " to share information,

help, hope and feelings " , I was surprised by your statement that " I

wish you could hear yourself making excuses. This does not sound

like a casual drinker - it sounds like booze has become one of the

centers of your joy " .

That is quite a leap from my original post. I was sharing some sad

feelings and expecting some hope or support.

I know I'm not an alcoholic so I have nothing to defend. Neither my

friends nor I drink regularly (the curse of getting older, wine

causes migraines in my girlfriends, I don't like the taste of wine

like I used to since getting CFS). But a few times a year we have a

good wine with dinner and do girl talk. This is a far cry from

getting drunk.

The way you jumped to the conclusions you did tells me you have your

own issues about this subject. Has alcoholism touched your life in

some way?

I do believe having a good wine with meals is one of life's great

pleasures, the French and Italians would agree with me. It's sad to

lose this and all the other small pleasures one loses because of

this disease.

Hollie

[Editor's Note: Hollie, you could not be more wrong: I seldom talk about

myself on this list, have never had a problem with alcohol and I had no burning

desire to share my losses with you, I assure you. I tried to HELP you by

pointing out that you can go through a lot and not have to drink. I bared my

soul to you only after you: (1) said that you do not want to give up drinking

wine on a regular basis; (2) stated that you had a number of benefits coming up

during which you wanted to drink wine BEFORE dinner and DURING dinner; (3)

acknowledged that you cannot imagine giving up having wine when you socialize

with your friends; (4) stated definitely that the French and Italians would

never give up wine (ignoring the many French and Italians who do not drink for a

variety of reasons); (5) aired that you cannot imagine not drinking wine

regularly and that life may not be worth living if you have to stop drinking

wine and (6) stated that you needed to drink to feel better because you were

dealing with all these " losses " . If your losses are not deaths, that's great.

Bully for you. But if you re-read your posts, you will see that you have gone

to great lengths to make excuses FOR drinking and to NO lengths to recognize

that doing so might put your health at great peril. People who do not have our

disease can certainly drink with greater abandon than those of us who have the

disease. Unfortunately, OUR new normal often means that we cannot drink the way

we used to without worsening our symptoms and possibly causing our livers great

bodily harm. YOU asked this group a question about whether it was OK to drink

while taking MTX and I said that it is not except with great moderation. Brent

and Betz concurred. YOUR response was to defend your love of drinking and to

make excuses for continuing to do so. Your response was to attack me. That is

your right. You are an adult and an adult has choices. You must weigh YOUR

priorities just as others weigh theirs. Knowing that drinking is MUCH more

harmful for you than for people who do not have your disease, you still choose

to drink. No problem Skoal. Prosit. A votre sante. Salute. Cheers. I did

not share my losses because I needed to. I did it to try to help you. Silly me.

I do not regret doing so - I hope it helped others - clearly - you do not wish

to hear what you don't want to hear so I don't know why YOU asked about

drinking. Your mind was made up before you ever posted. That's fine with me. I

don't judge you. Enjoy your wine. Kathy F.]

> Thanks Kathy for the info.

>

> I'm processing my recent losses and I don't know if I'm willing to

> give up the precious times with friends that usually revolve around

> a bottle of good wine, or the horrible day that feels soooo much

> better when I can decompress with a glass of good wine.

Temporarily

> it would be no problem, but for the rest of my life?

>

> I doubt the French or Italians would give up this pleasure. There

> is a point where one can give up too much and life isn't worth

> living anymore.

>

> Maybe this is one too many losses for me to handle right now, maybe

> it's because I live near the wine country in California, maybe it's

> because I have no idea yet what the Rheumatologist is going to say

> and I'm depressed. But I'm sick of all these losses.

>

> Hollie

>

> [Editor's Note: Hollie, I'm sorry to hear about your losses but

we shouldn't use the death of others as an excuse to destroy our own

lives. Within a 24 month period, I lost my mother, 5 friends on

9/11 (I live in NYC and worked in the financial services industry -

in fact, I worked in the Trade Center during the 1993 bombing),

another friend died from a massive infection the following New

Year's Eve and the following August, my close friend Gerry hung

himself. This was clearly the lowest point in my life and the weight

of their deaths was almost more than I could bear. I still would

give up everything I own to have one more cup of coffee with my

mother. BUT: Drinking would not have brought any of them back and

participating in the destruction of my own body would have

dishonored their memories. It was better to face my grief than to

drown my sorrows. If all your friends need booze to be sociable,

maybe you should look for some friends who are stimulating to be

with who don't need liquor. I'm not trying to be harsh here, but I

wish you could hear yourself making excuses. This does not sound

like a casual drinker - it sounds like booze has become one of the

centers of your joy - and that is a potentially deadly thing for you

because you have a very, very serious disease. PA won't kill you,

but it will take away pieces of your life slowly. Booze will hasten

that process and will add, not detract, to your pain and suffering.

Kathy F.]

>

[Guest guest]

> I was

> referring to the losses coming from my PA diagnosis only 2 weeks

ago.

Hollie,

I want to say that arthritis (and other autoimmune diseases) cause us

to go through the grief process many times over... I've had arthritis

since I was 10yrs old (I'm 34 with 2 kids now)... and I *still*

grieve over the things I 'used' to be able to do with no pain. I

have had a couple of remissions lasting a year or two... then I go

through grieving over THAT stuff I can't do anymore. Arthritis does

cause a lot of losses, and I think sometimes that that is the hardest

part of the disease.

My brother is a professor in NYC & his partner is a psychiatrist, and

they both go to a lot of events / benefits / openings that have wine

before, during, & after. My brother's partner CAN'T drink due to

some hereditary potential for liver / kidney problems. I think he

just gets some club soda in his wine flute and works the crowd or

table without too much fuss. Yes, he'd love to drink the wine, but

after watching his mom need a kidney transplant at 45, he just

doesn't. There are lots of reasons people do NOT drink at these

events. Granted, if you are used to it, you WILL mourn it, and

that's *OK*. It's just one more thing the disease takes.

I'm pretty new here but if you feel the need to vent about the

changes you are going to have to make, feel free! I will listen.

(((hugs!)))

-Marietta

[Guest guest]

Hollie...read what you wrote Honey. I don't know what else to tell

you. We are all taking our time to help you here. Why would we do

that? We have all had to give up these things. We have all had to

give up many things. I suppose they are losses. But one thing most

of us on here, Kathy and Brent included has done is that we are not

counting our losses anymore. Therefore we are not as depressed as

some are. We are counting our blessings and one of those blessings

is that through our pain and sense of loss, we can help others. That

is a blessing indeed. This disease is bad. But we can still see. We

can still smell brownies coming out of the oven and peonies from the

garden, ok? We can still think and feel and make choices. We are not

brain dead. There is still much living to do. Don't give up on

yourself and don't give up on reaching out to people who have been

there. If it were me, I'd go to those parties and I'd bring my own

exotic non alcoholic concoction and I'd enjoy the company of

my " girls " and not even mention to them that I miss the drinks but

tell them that you are glad that PA did not take your friends away.

I'd show them that I am strong and nothing is bigger than my will to

survive or my ability to thrive. Go for it. I think most of us

jumped to the same conclusion that Kathy did but it was based on

your words and your words were pretty clear. You wrote a sincere

letter. Just re-read it and maybe you'll see why we came to this

conclusion. We chose to try to help you when we read your post. We

still chose to try and help you. I ask that you chose to let us. If

not...then I wish you well and send you with the knowledge that we

are here when you are ready to move beyond the place where you are

in your journey to a place of growing and learning and reaching new

heights. We'll be here. -Betz---

[Guest guest]

Yes, that's what I was getting at, thanks Marietta, I do need to

vent more than anything.

First the loss of my legs due to non-cartilage in the hip(s) is a

very big loss. Being in a walker, wondering if I can ever wear my

shoes again (because they have heels), much less even go to the

store or hike or walk my dog....that is the biggest loss.

Do I now always have to wear flats and go to events in a walker, or

not go at all? I think every horrific possiblity goes through my

mind. Will my husband divorce me if I can't participate and throw

me out like a lame mare?

And you are so right about the grieving process, some days

everything seems so sad it's unbearable.

This all seems unfair since I had to go through this grieving

process when I got Chronic Fatigue Syndrome and went for two years

living alone, unable to get off the bed or sofa, couldn't shop for

groceries and NOBODY to help me. And I'm still dealing with the

lack of energy and other symptoms of CFS.

It's nice that you have remissions, but I can imagine the sadness

when you know it's back again.

I didn't have children because my doctor told me with CFS

pregnancies are so difficult, another thing to mourn.

Thanks for allowing me to vent, I feel better afterward.

Hollie

> > I was

> > referring to the losses coming from my PA diagnosis only 2 weeks

> ago.

>

> Hollie,

>

> I want to say that arthritis (and other autoimmune diseases) cause

us

> to go through the grief process many times over... I've had

arthritis

> since I was 10yrs old (I'm 34 with 2 kids now)... and I *still*

> grieve over the things I 'used' to be able to do with no pain. I

> have had a couple of remissions lasting a year or two... then I go

> through grieving over THAT stuff I can't do anymore. Arthritis

does

> cause a lot of losses, and I think sometimes that that is the

hardest

> part of the disease.

>

> My brother is a professor in NYC & his partner is a psychiatrist,

and

> they both go to a lot of events / benefits / openings that have

wine

> before, during, & after. My brother's partner CAN'T drink due to

> some hereditary potential for liver / kidney problems. I think he

> just gets some club soda in his wine flute and works the crowd or

> table without too much fuss. Yes, he'd love to drink the wine,

but

> after watching his mom need a kidney transplant at 45, he just

> doesn't. There are lots of reasons people do NOT drink at these

> events. Granted, if you are used to it, you WILL mourn it, and

> that's *OK*. It's just one more thing the disease takes.

>

> I'm pretty new here but if you feel the need to vent about the

> changes you are going to have to make, feel free! I will listen.

>

> (((hugs!)))

> -Marietta

>

[Guest guest]

Thanks Betz,

I really needed to vent more than anything and grieve about the good

old days.

I already know about this grieving process having gone through it 14

years ago when I first " caught " chronic fatigue syndrome and learned

to lead a " lesser " life. Funny how I have to go through it again,

thought I'd learned my lessons.

You are farther along than me...I'm new to this blow.

Just wish I could still walk to the garden to get those peonies or

bake brownies, hard with no legs.

Hollie

> Hollie...read what you wrote Honey. I don't know what else to tell

> you. We are all taking our time to help you here. Why would we do

> that? We have all had to give up these things. We have all had to

> give up many things. I suppose they are losses. But one thing most

> of us on here, Kathy and Brent included has done is that we are not

> counting our losses anymore. Therefore we are not as depressed as

> some are. We are counting our blessings and one of those blessings

> is that through our pain and sense of loss, we can help others.

That

> is a blessing indeed. This disease is bad. But we can still see. We

> can still smell brownies coming out of the oven and peonies from

the

> garden, ok? We can still think and feel and make choices. We are

not

> brain dead. There is still much living to do. Don't give up on

> yourself and don't give up on reaching out to people who have been

> there. If it were me, I'd go to those parties and I'd bring my own

> exotic non alcoholic concoction and I'd enjoy the company of

> my " girls " and not even mention to them that I miss the drinks but

> tell them that you are glad that PA did not take your friends away.

> I'd show them that I am strong and nothing is bigger than my will

to

> survive or my ability to thrive. Go for it. I think most of us

> jumped to the same conclusion that Kathy did but it was based on

> your words and your words were pretty clear. You wrote a sincere

> letter. Just re-read it and maybe you'll see why we came to this

> conclusion. We chose to try to help you when we read your post. We

> still chose to try and help you. I ask that you chose to let us. If

> not...then I wish you well and send you with the knowledge that we

> are here when you are ready to move beyond the place where you are

> in your journey to a place of growing and learning and reaching new

> heights. We'll be here. -Betz---

>

[Guest guest]

Hi Hollie =)

As a person who's gone thru a liver biopsy and been diagnosed as stage 3

liver disease (that's the terms used by the internist) i strongly recomend

not drinking. I too was on methotrexate as well, along with Remicaid (sp?

I'm sick right now sorry) and a few other medications for other illnesses.

To this day, I dont drink alcohol, nor do I use products with alcohol in it.

I take no chances because the surgeon told me that should I choose to drink,

it wouldn't take long to completely destroy my liver with the alcohol.

Liver disease (while alcohol induced) is prevelant in my family. While I'm

not gonna preach at ya, I think drinking is a very bad idea and would either

choose not to do it at all, or find a different kind of medication that

might not have such a harsh affect on your liver (I know, good luck =) I

hope this helps you.

On 9/2/06, Hollie <rosey9932000@...> wrote:

>

> I've heard some of you mention not drinking while taking some meds,

> especially MTX. Is drinking less important with some meds than others?

>

> Although I'm not a heavy drinker, a few glasses of wine on weekends,

> my husband and I have an extremely busy social calendar of mostly

> benefit dinners where I usually drink wine before and with dinner.

>

> When I start on the PA meds will I have to quit drinking entirely? Is

> this because of potential liver damage?

>

> Thanks,

>

> Hollie

>

> [Editor's Note: A number of our meds are particularly hard on the liver,

> including MTX and Arava. While on these meds, your rheumatologist should

> require you to have monthly or bi-monthly (i.e. every two months) blood

> tests in order to monitor your liver carefully. Because these meds are

> extremely toxic to the liver, it is recommended that you NOT drink alcohol

> while taking these meds. Some rheumies will allow you to have an OCCASIONAL

> drink, but drinking regularly is not something any responsible rheumy would

> recommend or condone. So, while you may not have to stop drinking entirely,

> you will need to restrict your alcohol consumption. Some people choose not

> to and instead rely on the monthly blood tests to tell them if they are

> destroying their livers. We only have one liver, and I'm not sure that

> playing Russian roulette with it is a good idea. If you can limit yourself

> to a glass of wine a week or less, it is probably OK, but really, which is

> more important - your liver or your liquor? I have an occasional glass of

> wine and enjoy it thorougly, but I wouldn't hesitate to kiss this goodbye if

> necessarily. It is your call - so please discuss your lifestyle with your

> rheumy before agreeing to go on MTX. Perhaps some other medication would be

> better for you if drinking is a priority. BTW, alcohol also worsens our PA

> symptoms - so that's two reasons to limit our alcoholic intake. Kathy F.]

>

>

>

[Guest guest]

Hollie - I can sure sympathize with you. It is taking me several

months to process the fact that this is really happening to me. You

are right that there are many losses and I think it's normal to

mourn them. I still can't believe that I can't work out at the gym

the way I used to, and that I may never be able to do it the same

way I used to and at the same intensity level. I'm shocked that I

have to ride the little golf cart from gate to gate at the airport.

I can't believe how much I'm sleeping. And swallowing as many as 15

pills a day - not vitamins, but serious meds - is still surreal to

me after 4 months.

I also miss my wine! I am of Italian background and was accumstomed

to having a glass or two with dinner every night. Because of MTX,

I'm now enjoying only one small glass per week, on the weekend when

I dine out. Bummer! One of the worst losses for me - one of life's

simple pleasures.

But to put it in perspective (for BOTH of us - lol!), being able to

use my hands and being able to walk is also one of life's simple

pleasures. I realize that without the medications, I will continue

to suffer serious permanent damage to my bones and joints and could

eventually be crippled or disfigured. So, I sigh and just try to

concentrate on the positive, the fact that my pain IS less and that

there are many other things I CAN enjoy. And I can promise you that

the one glass of wine I do have on Friday or Saturday night is the

most delicious I've ever had! I sip it in tiny sips and make it

last through the whole dinner. I pick it up often and just sniff it

without even sipping, savoring the bouquet and admiring the color.

Also, for the sake of my mental health, I hold on to the fact that

there is such a thing as long-term remission from PA. My first

attack was 10 years ago - did not know what it was at the time and

was not so severe as this one. But, hey, it could happen again,

right? I could get over this flare, reduce the meds and even maybe

be able to go off them totally. I could stay in remission for

years! It *could* happen. I like to think it might happen for me.

Meantime, I will just do my best to adjust to the *now*.

best regards and hoping you stick with us,

sherry z

[Guest guest]

Liver biopsies...thought I read everyone taking Methotrexate needs to

get a liver biopsy occasionally. Is this true?

Hollie

[Editor's Note: No. Rheumies disagree on this one but most seem to be of the

view that if your monthly blood tests show no changes in any of your liver

panels, there is no reason to go the biopsy route. If bloodwork shows rising

liver panels, then a biopsy would probably be in order. Kathy F. ]

> Hi Hollie =)

>

> As a person who's gone thru a liver biopsy and been diagnosed as

stage 3

> liver disease (that's the terms used by the internist) i strongly

recomend

> not drinking. I too was on methotrexate as well, along with Remicaid

(sp?

[Guest guest]

my liver function tests that i had ran monthly showed dangerously hi levels,

so they told me i needed a liver biopsy.... so while having my galbladder

removed i jokingly said hey doc while you're in there.... can you do the

biopsy too? I never thought he would.... but he did.... and I'm glad....all

done at once.....

On 9/4/06, Hollie <rosey9932000@...> wrote:

>

> Liver biopsies...thought I read everyone taking Methotrexate needs to

> get a liver biopsy occasionally. Is this true?

>

> Hollie

>

> [Editor's Note: No. Rheumies disagree on this one but most seem to be of

> the view that if your monthly blood tests show no changes in any of your

> liver panels, there is no reason to go the biopsy route. If bloodwork shows

> rising liver panels, then a biopsy would probably be in order. Kathy F. ]

>

>

> > Hi Hollie =)

> >

> > As a person who's gone thru a liver biopsy and been diagnosed as

> stage 3

> > liver disease (that's the terms used by the internist) i strongly

> recomend

> > not drinking. I too was on methotrexate as well, along with Remicaid

> (sp?

>

>

>

[Guest guest]

Hollie...I HAD a liver biopsy for an genetic disorder that I have

and let me tell ya Hon...you don't want to go there unless it is

medically necessary. They are not safe and even my Hematologist says

that they no longer use a liver biopsy to diagnose my disorder

(diagnosed with Hereditary Hemachromatosis in 1998....yep....I've

had LOTS of things to process as far as my health goes). My

Rheumatologist uses them for patients on Methotrexate but I remind

myself that I pay her to do the job and I can suggest alternative

ways to treat my body. She is a good person so I trust that she will

honor my request if I end up taking MTX. Remember that you have

choices. I too believe that a biopsy is to used when the blood

panels look iffy. First bloodwork, then biopsy. There are less

complication possibilities with blood work and things can go wrong

with biopsies. Just so ya know...they stick an needle that looks

like it should be used on an Elephant into your liver THROUGH your

rib cage while you are still awake. You do get a shot before hand to

numb the surface but it does not numb the liver baby. And then you

feel like you've been in a car accident for a few weeks....bruised

and sore. Your liver is actually bruised. Hmmmmm........... needle

in the arm and a little bruise there that feels better right away or

needle in the liver and pain for weeks? lol. I'm going with the

bloodwork! -Betz

>

> Liver biopsies...thought I read everyone taking Methotrexate needs

to

> get a liver biopsy occasionally. Is this true?

>

> Hollie

[Guest guest]

Why do you think at the last minute I asked the surgeon " hey while you're in

there " because I knew one was mandatory for me, however I didnt want to go

thru it awake... i have scars from that thing!!! I cant imagine doing it

awake!!!

On 9/4/06, Betsy Jack <itsbetsy@...> wrote:

>

> Hollie...I HAD a liver biopsy for an genetic disorder that I have

> and let me tell ya Hon...you don't want to go there unless it is

> medically necessary. They are not safe and even my Hematologist says

> that they no longer use a liver biopsy to diagnose my disorder

> (diagnosed with Hereditary Hemachromatosis in 1998....yep....I've

> had LOTS of things to process as far as my health goes). My

> Rheumatologist uses them for patients on Methotrexate but I remind

> myself that I pay her to do the job and I can suggest alternative

> ways to treat my body. She is a good person so I trust that she will

> honor my request if I end up taking MTX. Remember that you have

> choices. I too believe that a biopsy is to used when the blood

> panels look iffy. First bloodwork, then biopsy. There are less

> complication possibilities with blood work and things can go wrong

> with biopsies. Just so ya know...they stick an needle that looks

> like it should be used on an Elephant into your liver THROUGH your

> rib cage while you are still awake. You do get a shot before hand to

> numb the surface but it does not numb the liver baby. And then you

> feel like you've been in a car accident for a few weeks....bruised

> and sore. Your liver is actually bruised. Hmmmmm........... needle

> in the arm and a little bruise there that feels better right away or

> needle in the liver and pain for weeks? lol. I'm going with the

> bloodwork! -Betz

> >

> > Liver biopsies...thought I read everyone taking Methotrexate needs

> to

> > get a liver biopsy occasionally. Is this true?

> >

> > Hollie

>

>

>

[Guest guest]

In a message dated 9/5/2006 7:37:11 A.M. Eastern Standard Time,

itsbetsy@... writes:

they stick an needle that looks

like it should be used on an Elephant into your liver THROUGH your

rib cage while you are still awake. You do get a shot before hand to

numb the surface but it does not numb the liver baby. And then you

feel like you've been in a car accident for a few weeks....bruised

and sore. Your liver is actually bruised.

I just had a biopsy last month. I was given a mild sedative so that I was

still awake enough that I could follow instructions. I was also given the

" truth serum " so that I would forget the whole procedure. They also numbed the

whole area so much that it took 6-8 hours for the numbness to wear off. The

biopsy was performed with a sonagram so that they could see what they were

doing. I only felt sore when I tried to take a deep breath. That lasted for

two

days. The worst part was laying still for two hours to prevent spontaneous

bleeding. They inserted the needle toward the back of my side. According to

my husband the scab was smaller than an eighth inch. I spent a total of 6

hours at the hospital.

I consider this procedure like anything else done in a hospital setting. I

was more concerned about a hospital infection than a mistake, accident, or

mishap.

Sandy swOhio

[Guest guest]

So, , all you take is sulfasalazine, no other biologics? And

sulfasalazine does a good job of your PA? I usually hear it in

combo with other meds.

Hollie

> Perhaps a totally different perspective on alcohol and PA and the

meds that

> we take. Until about 6 months ago, my career involved making

multi million

> dollar decisions about alcoholic beverages offered in

restaurants. It would

> have been impossible for me to never taste any of what we were

recommending,

> and a good portion of my job involved the development of

cocktails, also

> impossible to do without tasting.

>

> In addition, that job fostered a love for wine that has turned

into my

> biggest hobby, and I am just not ready to walk away from that

quite yet.

>

> So ensuring my ability to manage this disease while I maintained

the ability

> to consume alcohol was critical (I wanted to continue to work, at

least part

> time, and wasn't at that point capable of making massive career

change given

> the stress of dealing with the diagnosis and figuring out how to

deal with

> it...).

>

> It IS possible...First let me qualify all of this by saying that I

probably

> drink less than most people as drinking was my job and I was

overly cautious

> about my personal consumption level.

>

> So the main thing I needed to avoid was Methotrexate; for me,

sulfasalazine

> is the substitute (not an option for those allergic to sulfa, and

not known to

> be as effective as MTX). However, as someone mentioned, most of

these meds

> are processed through your liver. So your liver has more to do

than most

> people's, regardless of which meds you are on. What I find is

that my body

> cannot process alcohol at the same rate as it did before these

meds. So it

> takes a lot less for me to become intoxicated, and a lot longer

for the alcohol

> to work through my system.

>

> My recommendation if you are going to continue to enjoy alcohol is

to use

> extreme moderation...I find that 1 glass of wine is enough for my

body to

> process, sometimes 2 if I am eating a meal and it's over a longer

period of time.

>

> I do agree that I find myself somewhat " puffier " than normal the

morning

> after I have more than 1 glass, but 1 glass doesn't seem to impact

my

> inflammation levels.

>

> Obviously, I've paid a lot of attention to this (and had a great

rheumy who

> told me what to look out for). Everyone is different, and needs

to make

> different choices for different reasons. I was lucky enough to

have a rheumy who

> worked with me to make sure I could do my job, enjoy my wine, and

manage my

> PA. Make sure you get yours involved...

>

>

>

>

>

[Guest guest]

Wow Sandi...I'm glad your experience was more civil than mine. Mine was

done in 1998....maybe they have gotten better with it now or maybe I

just did not do well with it. Even hearing about yours, I'd still

rather not have one unless I really need it. All the same, thanks for

sharing so that the fears of me and the rest of us facing one can be

diminished somewhat. I think I'll feel a little better about it if I

need one again in the future. -Betz

[Guest guest]

In a message dated 9/5/2006 1:38:03 P.M. Pacific Daylight Time,

rosey9932000@... writes:

So, , all you take is sulfasalazine, no other biologics? And

sulfasalazine does a good job of your PA? I usually hear it in

combo with other meds.

Hi Hollie...no, that's not all. I take Voltaren (NSAID) and Remicade. But

I started out with Bextra alone, then added Sulfasalazine and did that for a

few years, then added Enbrel last year and switched to Remicade in Feb.

Sulfasalazine doesn't work for everyone by itself; it did OK for me for a

while.

But the sulfasalazine was used in place of MTX to make sure we kept as much

stress off my liver as possible...

[Guest guest]

, did the Enbrel not work, is that why you switched to

Remicade?

Hollie

> Hi Hollie...no, that's not all. I take Voltaren (NSAID) and

Remicade. But

> I started out with Bextra alone, then added Sulfasalazine and did

that for a

> few years, then added Enbrel last year and switched to Remicade

in Feb.

> Sulfasalazine doesn't work for everyone by itself; it did OK for

me for a while.

> But the sulfasalazine was used in place of MTX to make sure we

kept as much

> stress off my liver as possible...

>

>

>

>

>

[Guest guest]

In a message dated 9/6/2006 12:46:38 P.M. Pacific Daylight Time,

rosey9932000@... writes:

, did the Enbrel not work, is that why you switched to

Remicade?

Hi Hollie,

Enbrel did work...got me about 80% back to normal, but didn't do anything to

improve my SI joints or cervical spine joints, so I switched to Remicade,

which is helping my spine more...

[Guest guest]

I just got back from the doc's and he told me that they're finding the metho

is not a bad as they originally thought. Therefore, they are only doing

biopsies if the liver function tests go up. It used to be that about every

five

years a biopsy was performed.

sandy swOhio

[Guest guest]

Im on Methotrexate and I have not had any liver biopsy... It is not mandatory

that I know of...

Love and Peace Always

Shaun and Barb