New to Group

[Guest guest]

Daphne, which NSAIDs have you tried? They don't all work in the same

way. If you let PA get out of hand, it will cause anxiety and

depression as well! Work with your rheumy to find an anti-

inflammatory that you can tolerate. Even if you have to take an anti-

depressant and/or anti-anxiety med, you MUST get the inflammation

under control.

Sometimes they start you on NSAIDs alone, and then if you need more

help after a month or so, they'll try methotrexate. Since you have a

problem with NSAIDs, ask the rheumy if you can try methotrexate right

off the bat - that may save some time. You still might need to take

both together, at least at first to get things under some control.

When I first saw a rheumy last June, I was in so much excruciating

pain that all I could do was sob and say, " Help me! "

good luck,

sherry z

>

> Hello,

> I was recently diagnosed with PA. It has affected my

> joints more than anything. Fingers, toes, elbows

> knees hips, etc. Low back. I'm using a topical on

> the plaque on my lower back and knee. I cannot

> tolerate NSAIDs. They make me anxious and depressed.

> I'm going to the Rheumatologist today and would like

> some help as to what to ask him.

> Anyone?

>

> Thanks.

> Daphne

>

>

>

>

______________________________________________________________________

______________Boardwalk for $500? In 2007? Ha! Play Monopoly Here and

Now (it's updated for today's economy) at Games.

> http://get.games./proddesc?gamekey=monopolyherenow

>

[Guest guest]

Hi and thanks for the fast reply.

I have been on all over the counter, Aleve, Advil,

etc. (I have a very high pain level, and it's hard to

get something to work for me.)

I was on celebrex, indomethecin, relafen. Severe

stomach pain, constipation, really bad leg cramps and

mouth sores. That's just a few of the side effects.

indocin left me totally anxious and panic stricken.

(I also do not do well with narcotics)

I went to the doc today; I left feeling confused. He

viewed my x-rays and said, well the good news is there

isn't any bone deterioration ..... yet. The bad news

is you still have PA and we'll have to try you on

something new. I've only started seeing this guy

recently. I have severe swelling and pain in my hands

and feet. he sent me home with.. get this.... FISH

OIL. He said to start taking it. He will see me in

two months and in between if it isn't helpinghe'll

lput me on prednisone.

I'm bummed.

--- " S. Zorzi " <szorzi_1999@...> wrote:

> Daphne, which NSAIDs have you tried? They don't all

> work in the same

> way. If you let PA get out of hand, it will cause

> anxiety and

> depression as well! Work with your rheumy to find

> an anti-

> inflammatory that you can tolerate. Even if you

> have to take an anti-

> depressant and/or anti-anxiety med, you MUST get the

> inflammation

> under control.

>

> Sometimes they start you on NSAIDs alone, and then

> if you need more

> help after a month or so, they'll try methotrexate.

> Since you have a

> problem with NSAIDs, ask the rheumy if you can try

> methotrexate right

> off the bat - that may save some time. You still

> might need to take

> both together, at least at first to get things under

> some control.

>

> When I first saw a rheumy last June, I was in so

> much excruciating

> pain that all I could do was sob and say, " Help me! "

>

>

> good luck,

> sherry z

>

>

> >

> > Hello,

> > I was recently diagnosed with PA. It has affected

> my

> > joints more than anything. Fingers, toes, elbows

> > knees hips, etc. Low back. I'm using a topical

> on

> > the plaque on my lower back and knee. I cannot

> > tolerate NSAIDs. They make me anxious and

> depressed.

> > I'm going to the Rheumatologist today and would

> like

> > some help as to what to ask him.

> > Anyone?

> >

> > Thanks.

> > Daphne

> >

> >

> >

> >

>

______________________________________________________________________

> ______________Boardwalk for $500? In 2007? Ha! Play

> Monopoly Here and

> Now (it's updated for today's economy) at

> Games.

> >

>

http://get.games./proddesc?gamekey=monopolyherenow

> >

>

>

>

________________________________________________________________________________\

____Be a better Heartthrob. Get better relationship answers from someone who

knows. Answers - Check it out.

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[Guest guest]

Daphne - sorry you had such a disappointing visit with your rheumy.

All of the side effects you mention can be worked out with patience

and a little experimentation; perhaps we can help you figure out how

to do that if your doctor is not helpful. For example, I've solved

the stomach pain/constipation problem with a combo of daily Activia

yogurt, lots of fresh fruits and veggies, and hot green tea

throughout the day. The leg cramps are much better since I started

taking extra calcium with D3. The mouth sores are usually fixed

pretty easily with folic acid supplements, a rather larger dose than

usually gotten over-the-counter. Also, many people don't realize

that many side effects go away once your body " adjusts " to the drug.

If you stopped taking them pretty quickly after experiencing

uncomfortable side effects, it may be that there was not time for

things to get better.

Your rheumy wasn't kidding when he said the good news is that you

have no bone deterioration yet. That is a serious possibilty with

untreated or under-treated PA. Some people here have suffered

crippling damage. It's important that you treat this serious disease

seriously. Perhaps the reason he sent you home with only fish oil is

that he sensed you're not willing to take any anti-inflammatories?

Perheps if you called and spoke with the nurse and indicated you

would like to try again, but would like help with the side effects...?

Daphne, the problem with PA is that the side effects of the disease

itself can be MUCH worse than the side effects of the drugs used to

treat it. Excruciating pain, immobility, irreversible bone

deterioration -Sad to say, but true. Not trying to scare anyone;

just wanting us all to remember that - though we hate to take all

these drugs and hate the side effects - they help us in the long run

to live longer, happier, more productive lives.

One year ago, I was healthy and only taking 1/2 of a blood pressure

pill a day. Now I inject myself 3 times a month, swallow anywhere

from 10-16 pills a day, use a steroid ointment on my skin twice a

day. You know what? I'm more thankful for my health now than I ever

was before. In between then and now, I hit rock bottom being almost

completely bedridden - and now, with the help of a good rheumy, those

drugs I resisted so hard, and the advice I found here, I'm back on my

feet and enjoying life again. I'm even thankful for the occassional

side effect now, because it reminds me that the drugs are working and

that I could be back where I was last summer.

best regards, and let us know how we can help,

sherry z

>

> Hi and thanks for the fast reply.

> I have been on all over the counter, Aleve, Advil,

> etc. (I have a very high pain level, and it's hard to

> get something to work for me.)

> I was on celebrex, indomethecin, relafen. Severe

> stomach pain, constipation, really bad leg cramps and

> mouth sores. That's just a few of the side effects.

> indocin left me totally anxious and panic stricken.

> (I also do not do well with narcotics)

> I went to the doc today; I left feeling confused. He

> viewed my x-rays and said, well the good news is there

> isn't any bone deterioration ..... yet. The bad news

> is you still have PA and we'll have to try you on

> something new. I've only started seeing this guy

> recently. I have severe swelling and pain in my hands

> and feet. he sent me home with.. get this.... FISH

> OIL. He said to start taking it. He will see me in

> two months and in between if it isn't helpinghe'll

> lput me on prednisone.

>

> I'm bummed.

[Guest guest]

good advice. but dont make fun of the fish oil. once taken for a week or two,

the joints do feel better. it doesnt fix the problem at all. but you could be

more comfortable. i went a month without it and did feel more aches and pains.

so im back on it now. but you will still need an anti-inflamatories and sherry

im so glad you are feeling better! :-) casey

" S. Zorzi " <szorzi_1999@...> wrote: Daphne - sorry you had such a

disappointing visit with your rheumy.

All of the side effects you mention can be worked out with patience

and a little experimentation; perhaps we can help you figure out how

to do that if your doctor is not helpful. For example, I've solved

the stomach pain/constipation problem with a combo of daily Activia

yogurt, lots of fresh fruits and veggies, and hot green tea

throughout the day. The leg cramps are much better since I started

taking extra calcium with D3. The mouth sores are usually fixed

pretty easily with folic acid supplements, a rather larger dose than

usually gotten over-the-counter. Also, many people don't realize

that many side effects go away once your body " adjusts " to the drug.

If you stopped taking them pretty quickly after experiencing

uncomfortable side effects, it may be that there was not time for

things to get better.

Your rheumy wasn't kidding when he said the good news is that you

have no bone deterioration yet. That is a serious possibilty with

untreated or under-treated PA. Some people here have suffered

crippling damage. It's important that you treat this serious disease

seriously. Perhaps the reason he sent you home with only fish oil is

that he sensed you're not willing to take any anti-inflammatories?

Perheps if you called and spoke with the nurse and indicated you

would like to try again, but would like help with the side effects...?

Daphne, the problem with PA is that the side effects of the disease

itself can be MUCH worse than the side effects of the drugs used to

treat it. Excruciating pain, immobility, irreversible bone

deterioration -Sad to say, but true. Not trying to scare anyone;

just wanting us all to remember that - though we hate to take all

these drugs and hate the side effects - they help us in the long run

to live longer, happier, more productive lives.

One year ago, I was healthy and only taking 1/2 of a blood pressure

pill a day. Now I inject myself 3 times a month, swallow anywhere

from 10-16 pills a day, use a steroid ointment on my skin twice a

day. You know what? I'm more thankful for my health now than I ever

was before. In between then and now, I hit rock bottom being almost

completely bedridden - and now, with the help of a good rheumy, those

drugs I resisted so hard, and the advice I found here, I'm back on my

feet and enjoying life again. I'm even thankful for the occassional

side effect now, because it reminds me that the drugs are working and

that I could be back where I was last summer.

best regards, and let us know how we can help,

sherry z

>

> Hi and thanks for the fast reply.

> I have been on all over the counter, Aleve, Advil,

> etc. (I have a very high pain level, and it's hard to

> get something to work for me.)

> I was on celebrex, indomethecin, relafen. Severe

> stomach pain, constipation, really bad leg cramps and

> mouth sores. That's just a few of the side effects.

> indocin left me totally anxious and panic stricken.

> (I also do not do well with narcotics)

> I went to the doc today; I left feeling confused. He

> viewed my x-rays and said, well the good news is there

> isn't any bone deterioration ..... yet. The bad news

> is you still have PA and we'll have to try you on

> something new. I've only started seeing this guy

> recently. I have severe swelling and pain in my hands

> and feet. he sent me home with.. get this.... FISH

> OIL. He said to start taking it. He will see me in

> two months and in between if it isn't helpinghe'll

> lput me on prednisone.

>

> I'm bummed.

---------------------------------

Sick sense of humor? Visit TV's Comedy with an Edge to see what's on,

when.

[Guest guest]

Thank you both, Casey and Sherry. This means a lot to

me. My family doesn't understand how it is affecting

me, and I think my boyfriend is tired of hearing one

thing after another. (although very sympathetic, I

might say.)

I am going to my GP tonight. I have a list; I will

bring a printed version of the stuff you guys wrote to

me, and maybe I'll just do what you all advise.

Re the fish oil? I thought he thought I wouldn't take

anything else either. but I still thought it was a

little odd.

I will let you know how I make out tonight.

Sherry, I don't know how you did it!!!!!

--- casey <denise05775@...> wrote:

> good advice. but dont make fun of the fish oil. once

> taken for a week or two, the joints do feel better.

> it doesnt fix the problem at all. but you could be

> more comfortable. i went a month without it and did

> feel more aches and pains. so im back on it now. but

> you will still need an anti-inflamatories and sherry

> im so glad you are feeling better! :-) casey

>

> " S. Zorzi " <szorzi_1999@...> wrote:

> Daphne - sorry you had such a disappointing visit

> with your rheumy.

> All of the side effects you mention can be worked

> out with patience

> and a little experimentation; perhaps we can help

> you figure out how

> to do that if your doctor is not helpful. For

> example, I've solved

> the stomach pain/constipation problem with a combo

> of daily Activia

> yogurt, lots of fresh fruits and veggies, and hot

> green tea

> throughout the day. The leg cramps are much better

> since I started

> taking extra calcium with D3. The mouth sores are

> usually fixed

> pretty easily with folic acid supplements, a rather

> larger dose than

> usually gotten over-the-counter. Also, many people

> don't realize

> that many side effects go away once your body

> " adjusts " to the drug.

> If you stopped taking them pretty quickly after

> experiencing

> uncomfortable side effects, it may be that there was

> not time for

> things to get better.

>

> Your rheumy wasn't kidding when he said the good

> news is that you

> have no bone deterioration yet. That is a serious

> possibilty with

> untreated or under-treated PA. Some people here have

> suffered

> crippling damage. It's important that you treat this

> serious disease

> seriously. Perhaps the reason he sent you home with

> only fish oil is

> that he sensed you're not willing to take any

> anti-inflammatories?

> Perheps if you called and spoke with the nurse and

> indicated you

> would like to try again, but would like help with

> the side effects...?

>

> Daphne, the problem with PA is that the side effects

> of the disease

> itself can be MUCH worse than the side effects of

> the drugs used to

> treat it. Excruciating pain, immobility,

> irreversible bone

> deterioration -Sad to say, but true. Not trying to

> scare anyone;

> just wanting us all to remember that - though we

> hate to take all

> these drugs and hate the side effects - they help us

> in the long run

> to live longer, happier, more productive lives.

>

> One year ago, I was healthy and only taking 1/2 of a

> blood pressure

> pill a day. Now I inject myself 3 times a month,

> swallow anywhere

> from 10-16 pills a day, use a steroid ointment on my

> skin twice a

> day. You know what? I'm more thankful for my health

> now than I ever

> was before. In between then and now, I hit rock

> bottom being almost

> completely bedridden - and now, with the help of a

> good rheumy, those

> drugs I resisted so hard, and the advice I found

> here, I'm back on my

> feet and enjoying life again. I'm even thankful for

> the occassional

> side effect now, because it reminds me that the

> drugs are working and

> that I could be back where I was last summer.

>

> best regards, and let us know how we can help,

> sherry z

>

>

> >

> > Hi and thanks for the fast reply.

> > I have been on all over the counter, Aleve, Advil,

> > etc. (I have a very high pain level, and it's hard

> to

> > get something to work for me.)

> > I was on celebrex, indomethecin, relafen. Severe

> > stomach pain, constipation, really bad leg cramps

> and

> > mouth sores. That's just a few of the side

> effects.

> > indocin left me totally anxious and panic

> stricken.

> > (I also do not do well with narcotics)

> > I went to the doc today; I left feeling confused.

> He

> > viewed my x-rays and said, well the good news is

> there

> > isn't any bone deterioration ..... yet. The bad

> news

> > is you still have PA and we'll have to try you on

> > something new. I've only started seeing this guy

> > recently. I have severe swelling and pain in my

> hands

> > and feet. he sent me home with.. get this.... FISH

> > OIL. He said to start taking it. He will see me in

> > two months and in between if it isn't helpinghe'll

> > lput me on prednisone.

> >

> > I'm bummed.

>

>

>

>

>

>

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

> Sick sense of humor? Visit TV's Comedy with

> an Edge to see what's on, when.

>

> [Non-text portions of this message have been

> removed]

>

>

________________________________________________________________________________\

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http://new.toolbar./toolbar/features/mail/index.php

[Guest guest]

Hi,

I'm going to do exactly that. Has anyone tried

indomethecin?

That is what he gave me the last time? or maybe I'll

just switch to celebrex!

Thank you so much for your help!!!

regards,

Daphne

--- " S. Zorzi " <szorzi_1999@...> wrote:

> Daphne - sorry you had such a disappointing visit

> with your rheumy.

> All of the side effects you mention can be worked

> out with patience

> and a little experimentation; perhaps we can help

> you figure out how

> to do that if your doctor is not helpful. For

> example, I've solved

> the stomach pain/constipation problem with a combo

> of daily Activia

> yogurt, lots of fresh fruits and veggies, and hot

> green tea

> throughout the day. The leg cramps are much better

> since I started

> taking extra calcium with D3. The mouth sores are

> usually fixed

> pretty easily with folic acid supplements, a rather

> larger dose than

> usually gotten over-the-counter. Also, many people

> don't realize

> that many side effects go away once your body

> " adjusts " to the drug.

> If you stopped taking them pretty quickly after

> experiencing

> uncomfortable side effects, it may be that there was

> not time for

> things to get better.

>

> Your rheumy wasn't kidding when he said the good

> news is that you

> have no bone deterioration yet. That is a serious

> possibilty with

> untreated or under-treated PA. Some people here

> have suffered

> crippling damage. It's important that you treat

> this serious disease

> seriously. Perhaps the reason he sent you home with

> only fish oil is

> that he sensed you're not willing to take any

> anti-inflammatories?

> Perheps if you called and spoke with the nurse and

> indicated you

> would like to try again, but would like help with

> the side effects...?

>

> Daphne, the problem with PA is that the side effects

> of the disease

> itself can be MUCH worse than the side effects of

> the drugs used to

> treat it. Excruciating pain, immobility,

> irreversible bone

> deterioration -Sad to say, but true. Not trying to

> scare anyone;

> just wanting us all to remember that - though we

> hate to take all

> these drugs and hate the side effects - they help us

> in the long run

> to live longer, happier, more productive lives.

>

> One year ago, I was healthy and only taking 1/2 of a

> blood pressure

> pill a day. Now I inject myself 3 times a month,

> swallow anywhere

> from 10-16 pills a day, use a steroid ointment on my

> skin twice a

> day. You know what? I'm more thankful for my

> health now than I ever

> was before. In between then and now, I hit rock

> bottom being almost

> completely bedridden - and now, with the help of a

> good rheumy, those

> drugs I resisted so hard, and the advice I found

> here, I'm back on my

> feet and enjoying life again. I'm even thankful for

> the occassional

> side effect now, because it reminds me that the

> drugs are working and

> that I could be back where I was last summer.

>

> best regards, and let us know how we can help,

> sherry z

>

>

>

>

> >

> > Hi and thanks for the fast reply.

> > I have been on all over the counter, Aleve, Advil,

> > etc. (I have a very high pain level, and it's

> hard to

> > get something to work for me.)

> > I was on celebrex, indomethecin, relafen. Severe

> > stomach pain, constipation, really bad leg cramps

> and

> > mouth sores. That's just a few of the side

> effects.

> > indocin left me totally anxious and panic

> stricken.

> > (I also do not do well with narcotics)

> > I went to the doc today; I left feeling confused.

> He

> > viewed my x-rays and said, well the good news is

> there

> > isn't any bone deterioration ..... yet. The bad

> news

> > is you still have PA and we'll have to try you on

> > something new. I've only started seeing this guy

> > recently. I have severe swelling and pain in my

> hands

> > and feet. he sent me home with.. get this....

> FISH

> > OIL. He said to start taking it. He will see me

> in

> > two months and in between if it isn't helpinghe'll

> > lput me on prednisone.

> >

> > I'm bummed.

>

>

>

________________________________________________________________________________\

____

Don't pick lemons.

See all the new 2007 cars at Autos.

http://autos./new_cars.html

[Guest guest]

A note about the fish oil --

I have a friend who is a medical researcher/nutritionist. She works

with patients with extreme inflammation issues. She actually

recommends fish oil -- and more specifically krill oil -- very highly

for inflammation. She told me that krill oil is actually better

because it has a higher concentration of the better fish oils -- and

it doesn't have the after-taste that regular fish oil does. I had a

hard time finding it (you can get it online) and finally discovered I

could special-order it through Whole Foods. I have to admit -- I do

feel better when I'm taking it (in addition to all the meds!).

Good luck!

Patty

> >

> > Hi and thanks for the fast reply.

> > I have been on all over the counter, Aleve, Advil,

> > etc. (I have a very high pain level, and it's hard to

> > get something to work for me.)

> > I was on celebrex, indomethecin, relafen. Severe

> > stomach pain, constipation, really bad leg cramps and

> > mouth sores. That's just a few of the side effects.

> > indocin left me totally anxious and panic stricken.

> > (I also do not do well with narcotics)

> > I went to the doc today; I left feeling confused. He

> > viewed my x-rays and said, well the good news is there

> > isn't any bone deterioration ..... yet. The bad news

> > is you still have PA and we'll have to try you on

> > something new. I've only started seeing this guy

> > recently. I have severe swelling and pain in my hands

> > and feet. he sent me home with.. get this.... FISH

> > OIL. He said to start taking it. He will see me in

> > two months and in between if it isn't helpinghe'll

> > lput me on prednisone.

> >

> > I'm bummed.

>

>

>

>

>

>

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

> Sick sense of humor? Visit TV's Comedy with an Edge to see

what's on, when.

>

>

[Guest guest]

Casey - I didn't mean to make fun of the fish oil. I myself eat fish

high in omega 3 every single day, often twice a day. I'm not sure of

it's efficacy in treating PA or RA, but it is certainly great for

overall good health and longevity. Thanks for the well wishes - I am

definitely doing pretty well right now. I had 3 pretty bad weeks,

then with the light treatment and new dose of Humira, I've had 3

really good weeks. I hope it continues!

best wishes to you as well,

sherry z

>

> good advice. but dont make fun of the fish oil. once taken for a

week or two, the joints do feel better. it doesnt fix the problem at

all. but you could be more comfortable. i went a month without it and

did feel more aches and pains. so im back on it now. but you will

still need an anti-inflamatories and sherry im so glad you are

feeling better! :-) casey

[Guest guest]

Thanks, Patty.

I was wondering what type to take. I was also worried

about the taste. I just don't know if I can swallow

all that medication every day. Won't leave room for

food!!!

Thanks again,

Daphne

--- prbypr5570 <proche@...> wrote:

> A note about the fish oil --

>

> I have a friend who is a medical

> researcher/nutritionist. She works

> with patients with extreme inflammation issues. She

> actually

> recommends fish oil -- and more specifically krill

> oil -- very highly

> for inflammation. She told me that krill oil is

> actually better

> because it has a higher concentration of the better

> fish oils -- and

> it doesn't have the after-taste that regular fish

> oil does. I had a

> hard time finding it (you can get it online) and

> finally discovered I

> could special-order it through Whole Foods. I have

> to admit -- I do

> feel better when I'm taking it (in addition to all

> the meds!).

>

> Good luck!

>

> Patty

[Guest guest]

keeping my fingers crossed for you!...casey

" S. Zorzi " <szorzi_1999@...> wrote: Casey - I didn't mean to make

fun of the fish oil. I myself eat fish

high in omega 3 every single day, often twice a day. I'm not sure of

it's efficacy in treating PA or RA, but it is certainly great for

overall good health and longevity. Thanks for the well wishes - I am

definitely doing pretty well right now. I had 3 pretty bad weeks,

then with the light treatment and new dose of Humira, I've had 3

really good weeks. I hope it continues!

best wishes to you as well,

sherry z

>

> good advice. but dont make fun of the fish oil. once taken for a

week or two, the joints do feel better. it doesnt fix the problem at

all. but you could be more comfortable. i went a month without it and

did feel more aches and pains. so im back on it now. but you will

still need an anti-inflamatories and sherry im so glad you are

feeling better! :-) casey

---------------------------------

Building a website is a piece of cake.

Small Business gives you all the tools to get online.

[Guest guest]

your welcome. and you are right. loved ones do get tired of hearing it.lets be

honest. but like we get used to PA, they get use to the whining. see it all

works out.LOL......casey

daphne <daphey@...> wrote: Thank you both, Casey and Sherry. This

means a lot to

me. My family doesn't understand how it is affecting

me, and I think my boyfriend is tired of hearing one

thing after another. (although very sympathetic, I

might say.)

I am going to my GP tonight. I have a list; I will

bring a printed version of the stuff you guys wrote to

me, and maybe I'll just do what you all advise.

Re the fish oil? I thought he thought I wouldn't take

anything else either. but I still thought it was a

little odd.

I will let you know how I make out tonight.

Sherry, I don't know how you did it!!!!!

--- casey <denise05775@...> wrote:

> good advice. but dont make fun of the fish oil. once

> taken for a week or two, the joints do feel better.

> it doesnt fix the problem at all. but you could be

> more comfortable. i went a month without it and did

> feel more aches and pains. so im back on it now. but

> you will still need an anti-inflamatories and sherry

> im so glad you are feeling better! :-) casey

>

> " S. Zorzi " <szorzi_1999@...> wrote:

> Daphne - sorry you had such a disappointing visit

> with your rheumy.

> All of the side effects you mention can be worked

> out with patience

> and a little experimentation; perhaps we can help

> you figure out how

> to do that if your doctor is not helpful. For

> example, I've solved

> the stomach pain/constipation problem with a combo

> of daily Activia

> yogurt, lots of fresh fruits and veggies, and hot

> green tea

> throughout the day. The leg cramps are much better

> since I started

> taking extra calcium with D3. The mouth sores are

> usually fixed

> pretty easily with folic acid supplements, a rather

> larger dose than

> usually gotten over-the-counter. Also, many people

> don't realize

> that many side effects go away once your body

> " adjusts " to the drug.

> If you stopped taking them pretty quickly after

> experiencing

> uncomfortable side effects, it may be that there was

> not time for

> things to get better.

>

> Your rheumy wasn't kidding when he said the good

> news is that you

> have no bone deterioration yet. That is a serious

> possibilty with

> untreated or under-treated PA. Some people here have

> suffered

> crippling damage. It's important that you treat this

> serious disease

> seriously. Perhaps the reason he sent you home with

> only fish oil is

> that he sensed you're not willing to take any

> anti-inflammatories?

> Perheps if you called and spoke with the nurse and

> indicated you

> would like to try again, but would like help with

> the side effects...?

>

> Daphne, the problem with PA is that the side effects

> of the disease

> itself can be MUCH worse than the side effects of

> the drugs used to

> treat it. Excruciating pain, immobility,

> irreversible bone

> deterioration -Sad to say, but true. Not trying to

> scare anyone;

> just wanting us all to remember that - though we

> hate to take all

> these drugs and hate the side effects - they help us

> in the long run

> to live longer, happier, more productive lives.

>

> One year ago, I was healthy and only taking 1/2 of a

> blood pressure

> pill a day. Now I inject myself 3 times a month,

> swallow anywhere

> from 10-16 pills a day, use a steroid ointment on my

> skin twice a

> day. You know what? I'm more thankful for my health

> now than I ever

> was before. In between then and now, I hit rock

> bottom being almost

> completely bedridden - and now, with the help of a

> good rheumy, those

> drugs I resisted so hard, and the advice I found

> here, I'm back on my

> feet and enjoying life again. I'm even thankful for

> the occassional

> side effect now, because it reminds me that the

> drugs are working and

> that I could be back where I was last summer.

>

> best regards, and let us know how we can help,

> sherry z

>

>

> >

> > Hi and thanks for the fast reply.

> > I have been on all over the counter, Aleve, Advil,

> > etc. (I have a very high pain level, and it's hard

> to

> > get something to work for me.)

> > I was on celebrex, indomethecin, relafen. Severe

> > stomach pain, constipation, really bad leg cramps

> and

> > mouth sores. That's just a few of the side

> effects.

> > indocin left me totally anxious and panic

> stricken.

> > (I also do not do well with narcotics)

> > I went to the doc today; I left feeling confused.

> He

> > viewed my x-rays and said, well the good news is

> there

> > isn't any bone deterioration ..... yet. The bad

> news

> > is you still have PA and we'll have to try you on

> > something new. I've only started seeing this guy

> > recently. I have severe swelling and pain in my

> hands

> > and feet. he sent me home with.. get this.... FISH

> > OIL. He said to start taking it. He will see me in

> > two months and in between if it isn't helpinghe'll

> > lput me on prednisone.

> >

> > I'm bummed.

>

>

>

>

>

>

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

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> an Edge to see what's on, when.

>

> [Non-text portions of this message have been

> removed]

>

>

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[Guest guest]

Hi Daphne,

I, too, was recently diagnosed with PA (March 2007), and the pain

was excruciating and joint inflammation like you--virtually every

joint in my body. I had to undergo several tests for about 3-4

weeks, especially since I have nonalcoholic fatty liver disease. So,

my dermatologist and rheumatologist both concurred that they would

skip the methotextrate and put me on Enbrel. Before that, I was on

massive doses of Aleve (which helped for awhile, but I experienced

some severe leg cramps with it and soon, the pain overwhelmed me

even with the Aleve), and had a round of methylprednisolone (which

helped a bit) and then a round of Prednisone (did not help at all,

and made my face get all puffy with little bumps.) Finally, when my

insurance authorized the Enbrel, I got my first injection in early

April, and I kid you not, within three days I awoke with virtually

no pain and was able to walk for the first time in almost three

months without a cane/crutches. I'm on my sixth week of Enbrel, and

I'm still doing pretty good. I get a little bit of stiffness in my

wrists and my knees still get a little sore sometimes, but at least

I'm walking and have regained some energy. I still need lots of rest

every night and on the weekends, but I'll take my condition now any

day over the nightmarish pain and immobility I was experiencing most

of February, March and early April.

Good luck, hopefully your docs can work with you to find the meds

combo that works for you. There is hope. Believe me, I'm a very

optimistic person, but I think I sank to emotional depths that I

never experienced back in March and early April. THERE IS HOPE!

Best wishes--

Vera

>

> Hi and thanks for the fast reply.

> I have been on all over the counter, Aleve, Advil,

> etc. (I have a very high pain level, and it's hard to

> get something to work for me.)

> I was on celebrex, indomethecin, relafen. Severe

> stomach pain, constipation, really bad leg cramps and

> mouth sores. That's just a few of the side effects.

> indocin left me totally anxious and panic stricken.

> (I also do not do well with narcotics)

> I went to the doc today; I left feeling confused. He

> viewed my x-rays and said, well the good news is there

> isn't any bone deterioration ..... yet. The bad news

> is you still have PA and we'll have to try you on

> something new. I've only started seeing this guy

> recently. I have severe swelling and pain in my hands

> and feet. he sent me home with.. get this.... FISH

> OIL. He said to start taking it. He will see me in

> two months and in between if it isn't helpinghe'll

> lput me on prednisone.

>

> I'm bummed.

>

[Guest guest]

Hi Vera,

Thanks. I went to my GP and she told me to start the

Celebrex, but take some folic acid and also take the

fish oil. I actually found " krill oil " on the Dr.

Mercola website and ordered that. I'm hypothyroid,

menopausal, and between that and the PA she thought

that the Rheumatologist was hesitant to do anything.

I'm done with specialists and told her that she was

now my " specialist. " She will check with me in two

months and if the symptoms are not significantly

improved, she may very well prescribe enbrel.

Thanks for your input. I appreciate it.

Daphne

Really glad you found something to make you feel

better.

--- vdevera <vdevera@...> wrote:

> Hi Daphne,

> I, too, was recently diagnosed with PA (March 2007),

> and the pain

> was excruciating and joint inflammation like

> you--virtually every

> joint in my body. I had to undergo several tests for

> about 3-4

> weeks, especially since I have nonalcoholic fatty

> liver disease. So,

> my dermatologist and rheumatologist both concurred

> that they would

> skip the methotextrate and put me on Enbrel. Before

> that, I was on

> massive doses of Aleve (which helped for awhile, but

> I experienced

> some severe leg cramps with it and soon, the pain

> overwhelmed me

> even with the Aleve), and had a round of

> methylprednisolone (which

> helped a bit) and then a round of Prednisone (did

> not help at all,

> and made my face get all puffy with little bumps.)

> Finally, when my

> insurance authorized the Enbrel, I got my first

> injection in early

> April, and I kid you not, within three days I awoke

> with virtually

> no pain and was able to walk for the first time in

> almost three

> months without a cane/crutches. I'm on my sixth week

> of Enbrel, and

> I'm still doing pretty good. I get a little bit of

> stiffness in my

> wrists and my knees still get a little sore

> sometimes, but at least

> I'm walking and have regained some energy. I still

> need lots of rest

> every night and on the weekends, but I'll take my

> condition now any

> day over the nightmarish pain and immobility I was

> experiencing most

> of February, March and early April.

>

> Good luck, hopefully your docs can work with you to

> find the meds

> combo that works for you. There is hope. Believe me,

> I'm a very

> optimistic person, but I think I sank to emotional

> depths that I

> never experienced back in March and early April.

> THERE IS HOPE!

> Best wishes--

> Vera

[Guest guest]

Patty,

I found krill oil on Dr. Mercola's website. I ordered

that. I only need 2-3 a day instead of 6!

Thanks for the heads up!!!

Daphne

--- prbypr5570 <proche@...> wrote:

> A note about the fish oil --

>

> I have a friend who is a medical

> researcher/nutritionist. She works

> with patients with extreme inflammation issues. She

> actually

> recommends fish oil -- and more specifically krill

> oil -- very highly

> for inflammation. She told me that krill oil is

> actually better

> because it has a higher concentration of the better

> fish oils -- and

> it doesn't have the after-taste that regular fish

> oil does. I had a

> hard time finding it (you can get it online) and

> finally discovered I

> could special-order it through Whole Foods. I have

> to admit -- I do

> feel better when I'm taking it (in addition to all

> the meds!).

>

> Good luck!

>

> Patty

[Guest guest]

Welcome to the group Daphne...

Love and peace always

SB

[Guest guest]

Family just see you as burden... I hear it all the time too... Until they suffer

the disease no one really can know what your going threw... Some never will...

Love and peace always

SB

[Guest guest]

Hi Jo Anne,

I have a 5 year old that was just diagnosed last fall with PA. We've been on

Naproxen twice a day for 6 months and most of the inflamation is gone. There is

some damage to the joints in her fingers, but the doctors think that it may

repair itself as she grows. Physical and Occupation Therapy have done wonders.

She doesn't have any psoriasis yet, maybe just a little behind her ears. It

runs in my family though, and I think that helped the Rheumy make the diagnosis.

It is amazing how they keep going through all this. There are days when she

looks so tired and worn out, it just breaks my heart. Her limitations are

starting to show and she's starting to realize that nobody else has to deal with

arthritis. I know there is a long road ahead of me. So far she keeps up with

everything. She's very determined. I just tell her to remember to rest if she

gets tired. She's pretty good about that.

The original symptons seemed to appear overnight. Her teachers noticed before

we did. But then it stopped getting worse and now she's almost back to

'normal'. There's no rhyme or reason to this.

Please feel free to email me anytime. There doesn't seem to be a lot of kids

who have this. I haven't found anyone except you. You can learn a lot from

this group. Some of it is hard to take because I know it may be my daughter's

future. But I try not to look too far ahead and hope for better treatments in

the future.

`°º¤ø,¸¸,ø¤º°`°º¤ø,¸,ø¤º°`°º¤ø,¸,ø¤º°`°º¤ø,¸,ø¤º°`

Catey

[ ] New to Group

Hello everyone,

We just learned in April that our four year old daughter has psoriatic

arhtritis and I'm interested to know if there are any others on this

group with children affected by this disease. I joined a juvenile

arthritis group and have learned a lot, but only 2-3 others dealing

with PA.

Lianna has not been placed on any medications - partly because she has

mildly elevated AST for no apparent reason - and partly because of her

young age. The psoriais is mild and not much of a problem. Three

months ago she complained of pain in her legs, fingers and toes. Now

the back, hips, elbows and top of the foot have been involved. Do

things usually progress this quickly? Swelling is very minimal, but

we can see a redness to the joints and general fatigue - although like

any child, she tries to keep going even when she hurts. I'd be so

glad to hear from any other parents - how has the disease progressed,

how do you handle the days of extreme fatigue, how hard do you push

for school and activities. . . Thanks for any input :-) Jo Anne

________________________________________________________________________________\

____

Moody friends. Drama queens. Your life? Nope! - their life, your story. Play

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[Guest guest]

My 4 1/2 year old daughter was diagnosed with PA a few months ago as well.

I've been on this board but never saw any kids. I'm also on the JRA list.

Libby's seems to be fairly mild so far. She's on Methotrexate once a week

and Ibuprofen as needed. Her feet hurt in the late afternoon after playing

all day. I try to get her to rest, but she insists on playing. She usually

sits on the couch in the afternoons to rest though...but she pushes through

the day.

Libby's symptoms also seemed to appear over night. She had some injections

and is mostly back to normal.

Cheri

[ ] New to Group

Hello everyone,

We just learned in April that our four year old daughter has psoriatic

arhtritis and I'm interested to know if there are any others on this

group with children affected by this disease. I joined a juvenile

arthritis group and have learned a lot, but only 2-3 others dealing

with PA.

Lianna has not been placed on any medications - partly because she has

mildly elevated AST for no apparent reason - and partly because of her

young age. The psoriais is mild and not much of a problem. Three

months ago she complained of pain in her legs, fingers and toes. Now

the back, hips, elbows and top of the foot have been involved. Do

things usually progress this quickly? Swelling is very minimal, but

we can see a redness to the joints and general fatigue - although like

any child, she tries to keep going even when she hurts. I'd be so

glad to hear from any other parents - how has the disease progressed,

how do you handle the days of extreme fatigue, how hard do you push

for school and activities. . . Thanks for any input :-) Jo Anne

[Guest guest]

Hi Catey,

Thanks so much for your response. I'm glad to meet another mom

dealing with this and I couldn't agree with you more that the future

looks quite daunting and I'm focusing on the here and now. I'm

wondering if you saw swelling in the joints? Did your rhuemy do x-

rays or other types of imaging tests to find the damage to the

joints? Our dr. has done lots of blood work (all was normal except

elevated AST) but no other type of testing. We are beginning to see

some redness and warmth at the back of her knees and inside of elbows

and have possibly seen just a little swelling.

Lianna also has days when, despite a good night's sleep, she is

utterly exhausted. This has been much harder to deal with than pain

and I wonder how she will ever get through a day of school! Thanks

for being willing to share - best wishes - Jo Anne

>

> Hi Jo Anne,

>

> I have a 5 year old that was just diagnosed last fall with PA.

We've been on Naproxen twice a day for 6 months and most of the

inflamation is gone. There is some damage to the joints in her

fingers, but the doctors think that it may repair itself as she

grows. Physical and Occupation Therapy have done wonders. She

doesn't have any psoriasis yet, maybe just a little behind her ears.

It runs in my family though, and I think that helped the Rheumy make

the diagnosis.

>

> It is amazing how they keep going through all this. There are days

when she looks so tired and worn out, it just breaks my heart. Her

limitations are starting to show and she's starting to realize that

nobody else has to deal with arthritis. I know there is a long road

ahead of me. So far she keeps up with everything. She's very

determined. I just tell her to remember to rest if she gets tired.

She's pretty good about that.

>

> The original symptons seemed to appear overnight. Her teachers

noticed before we did. But then it stopped getting worse and now

she's almost back to 'normal'. There's no rhyme or reason to this.

>

> Please feel free to email me anytime. There doesn't seem to be a

lot of kids who have this. I haven't found anyone except you. You

can learn a lot from this group. Some of it is hard to take because

I know it may be my daughter's future. But I try not to look too far

ahead and hope for better treatments in the future.

>

>

> `°º¤ø,¸¸,ø¤º°`°º¤ø,¸,ø¤º°`°º¤ø,¸,ø¤º°`°º¤ø,¸,ø¤º°`

> Catey

>

[Guest guest]

Hi cheri,

I think there is one older boy and one girl on the JRA list with PsA

but I haven't seen much posting on the topic. Just the general

discussion of JRA has been very helpful though. Does Libby have the

Psoriasis rash yet? Lianna also has trouble with her feet hurting,

especially the top of the foot and her toes. Ice packs have been

very helpful. I think it's interesting that your daughter has

a " fairly mild " case, yet has had injections and is on medication.

Each rheumy really seems to have their own ideas about how to treat

this disease. It seems to be fairly uncommon in children this young

so perhaps there is not set protocol. Thanks for sharing and wish

you and Libby well. Jo Anne

>

> My 4 1/2 year old daughter was diagnosed with PA a few months ago

as well.

> I've been on this board but never saw any kids. I'm also on the

JRA list.

> Libby's seems to be fairly mild so far. She's on Methotrexate once

a week

> and Ibuprofen as needed. Her feet hurt in the late afternoon after

playing

> all day. I try to get her to rest, but she insists on playing.

She usually

> sits on the couch in the afternoons to rest though...but she pushes

through

> the day.

>

> Libby's symptoms also seemed to appear over night. She had some

injections

> and is mostly back to normal.

>

> Cheri

>

[Guest guest]

Once it was pointed out to us, the swelling was pretty obvious. She had the

" sausage " toes and fingers. We could feel the heat in her joints as well. They

did blood tests and xrays but they never said there was anything unusual. I was

too overwhelmed to ask I guess.

Now that the inflamation is under control, you can see that her fingers are kind

of disfigured. They haven't done any further xrays to see what the damage was.

She still favors one leg and doesn't have complete range of motion in her

writsts or her middle fingers. But that's where the OT helped. They can

measure her strength and it is continually improving.

Her being tired was the first clue that something was wrong. She would sit on

the playground while her other friends kept playing (not like her at all).

Again, getting the inflamation under control seems to have improved that. I

also think she's sleeping better. Hopefully they can get Lianna's symptoms

under control and that will help with the exhaustion. The doctor was about to

start Lizzy on MTX, but that appointment went so well, he decided to hold off.

I'm sure if the sypmtoms get worse again, that will be our next course of

action.

`°º¤ø,¸¸,ø¤º°`°º¤ø,¸,ø¤º°`°º¤ø,¸,ø¤º°`°º¤ø,¸,ø¤º°`

Catey

________________________________________________________________________________\

____Got a little couch potato?

Check out fun summer activities for kids.

http://search./search?fr=oni_on_mail & p=summer+activities+for+kids & cs=bz

[Guest guest]

So sorry for you little girl... Welcome to the group, I am sure you will find

out a lot here... And a lot of support...

Love and peace always

Shaun and Barb

[Guest guest]

Jo Anne and Cheri -- it might be that it is more common than we think

in children, just under-diagnosed. Many of us older people, in looking

back over our lives, wonder whether we might have had this from a very

early age to some degree. Many of us suffered terrible pains in our

legs, feet, ankles, etc., which our parents and pediatricians insisted

were just growing pains. (We discussed this a while ago here on this

board.) Later in life, we found out that other people never had such

excruciating pain as children that they would lie in bed in tears at

night, suffering quietly, like we did. I know now that I probably had

psoriatic fingernails my whole life, although no one ever identified it

as such until a year ago. I've had considerable pain in my right knee

since my early teens. Three different orthopedists insisted, over a

period of 40 years, that I had no injury there. And sudden bouts of

inexplicable pain in other joints, as well as tendonitis. And terrible

bouts of fatigue, even as a young child.

I wonder whether this is especially overlooked easily when the

arthritis preceeds the psoriasis, as it did for me. I only developed

skin P in my 50s! That's what finally tipped someone off that I had PA!

Anyway, the hopeful message I have for you is that I think I had many

periods of long-term remission along the way. Sometimes total relief

of symptoms, often at least a great diminishing of them so that they

barely affected my life. Your children are not necessarily going to

suffer like this constantly for the rest of their lives. This disease

can and does sometimes go into spontaneous remissions. Also, it's

always better to know WHAT you're dealing with than not. When their

disease does flare, you know to see a rheumy and you know there are

drugs that can help. This is a good thing. Proper treatment from the

early stage should prevent many of the problems that plague us older PA

folks.

As a mother, I know how devastating this feels to you - you would

rather it be YOU than your child. Don't give up; life is still good!

praying for many long (even permanent!) remissions for your babies,

sherry z

>

> Hi cheri,

> I think there is one older boy and one girl on the JRA list with PsA

> but I haven't seen much posting on the topic. Just the general

> discussion of JRA has been very helpful though. Does Libby have the

> Psoriasis rash yet? Lianna also has trouble with her feet hurting,

> especially the top of the foot and her toes. Ice packs have been

> very helpful. I think it's interesting that your daughter has

> a " fairly mild " case, yet has had injections and is on medication.

> Each rheumy really seems to have their own ideas about how to treat

> this disease. It seems to be fairly uncommon in children this young

> so perhaps there is not set protocol. Thanks for sharing and wish

> you and Libby well. Jo Anne

>

[Guest guest]

Everyone gets different symptoms I sure hope your daughters stay minimal...

Love and peace always

Shaun and Barb

[Guest guest]

Have you heard the old Indian saying about the two wolves,

The good wolf is happiness, a bright future, health, great relationships and

all other positive things.

The evil wolf is disease, regret, depression, worry, poor health and all other

negative things.

Ask him which one he would rather feed today to make him healthy.

Also get him on the net if possible to interact with the other people that

have already been through this like me.

We don't have all the answers but are looking for alternative ways to heal

ourselves.

Al

kellydrice wrote:

Hi I am new to the group. A close friend of mine has just been

diagnosed with lymphatic and pancreatic cancer. He has under gone

major surgery and they are doing radiation and chemotherapy. I want to help

support and encourage him and I know he would like natural or

alternative things too but he is in the depressed I don't want to fight I don't

want to do anything stage, what can I do to help him??