My story

[Guest guest]

Hello ,

And WELCOME !!! Glad you've found us.

Computers are wonderful tools but they can be SO frustrating at times and

I'm sure it was all the computers fault that your last e-mail got lost<grin>

Having two 'youngies' (and boys at that!) must have made things very

difficult for you one needs so much energy to keep up doesn't one<caring

hug>

Good for you taking matters into your own hands, well done ! It's not easy

to stand up to those doctors who are entrenched in the conventional

treatment of these diseases and we're so conditioned into thinking that they

are always right, which of they're not! The ones I particularly dislike are

those who try to frighten people by saying that they will be totally

crippled if they don't follow their instructions. GRRRRRR !!!!

Have you checked out the Frequently Asked Questions on our web site? You

will find lots of helpful information there and I'm pretty sure that the

question of 'how long' to take the AB is there too.

These critters are the most cunning around as they are able to hide on a way

that makes the lab results show negative and yet they can still be there.

It's not uncommon to stay on a maintenance dose and that can be done quite

successfully, without any hassles.

Are you (AND EVERYONE ELSE !!!) drinking LOOOOOOOOOOOOOOOOOOOTS OF WATER??!!

<smile> It's really essential!

If you feel you would like a doctors support let me know what state you live

in as we have a list of doctors who 'do' the AP.

Seems to me that you are doing really well on your own and you should give

yourself a bit pat on the back <smile>

hugs,

lisbeth

rheumatic my story

>From: " anna sulucz " <asulucz@...>

>

>Hi Group.

>The first time I wrote to the group I might have " misplaced " my message, so

>I am going to repeat a short version of it.

>I am 38 years old, raising two boys, 6 and 3. I was diagnosed with severe

RA

>three years ago, after my second son was born.

>I was devastated, depressed, fatigued, spending much of the time in bed

with

>aching joints, stiff hands, at a time when my kids needed me the most. It

>was difficult for my husband to coop with my illness to, knowing me very

>energetic, athletic, happy woman. I was completely changed and nobody liked

>it.

>I was put on Plaquenil and Voltaren. I found an article in a newspaper

about

>a Washingtonian (DC) doctor who successfully treated RA with antibiotic and

>showed it to my doctor. He said it was " garbage " .

>Plaquenil had never worked for me and my RA factor was constantly raising.

I

>went to a different doctor who prescribed me MTX.

>At that point I felt that I had to take my fate in my hands because these

>doctors just couldn't care less.

>I went to the library, did my own research, found " The New Arthritis

>Breakthrough " , run to the doctor and convinced her to prescribe me the

>Minociclyne.

>She told me that there is a " theory " of micoplasmas, but she never believed

>in it.

>Taking 200 mg a day, after only a couple of days I felt better, after 6

>months my RA factor was negative. Unfortunately uncomfortable rashes

>appeared on my skin so I stopped taking the antibiotic.

>After 4 months of no mediation at all, I had the worst flare in my life.

>I went right back to Minociclyne and it worked again!

>Being on my own, not having professional help I followed Dr.Sorin's

>Romanian rheumatologist)protocol, 100mg MWF and I am still doing good.

>I don't have stiff joints, no need of painkillers, just the usual bloodwork

>time to time which is still negative.

>I don't know whether I should change the doze and how much longer I should

>take the antibiotic because in spite of my good results, when I overdue

>physical activity I still feel some of my joints aching, minor pain which

is

>gone after a good night's sleep.

>I am so glad that I found out about this group because I would like to

share

>my wonderful experience with you and I also need your support in fighting

>this terrible disease. Thank you.

>

>>

[Guest guest]

Hi Helen,

Glad you decided to join us. It is hard to get a diagnosis at first. My

RD still can't decide if I have RA or PA because I have mild outbreaks of

psoraisis. I stopped taking the plaquinel and methotrexate last spring and

can't say I noticed a difference.

About the Celebrex. A few on the list are on it but I have noticed Vioxx

seems to be helping more people. I was picking up my RX yesterday and the

lady ahead of me was getting Celebrex and it was on the tip of my tongue to

ask her if it worked for her, but I didn't. I noticed she walked down the

aisle to the pain killers, so I wonder.

Bev

> After 'discovering' the Antibiotic protocol on the internet, I

> approached my GP for support, which he is doing willing (and is very

> supportive - he knew that my Rhemy wouldn't be!).

> I've been on 50mg of Mino 2xday for 8 weeks now, and can't say that

> I've noticed any improvement yet. I know I'll have to be patient, I

> guess I'm just looking for a little reassurance that I've made the

> right choice! (Is it usual to vary the Mino treatment over a period

> of time - IV's etc?)

> I've been on Voltaren for over a year now, and my GP wants me to

> switch to Celebrex (my stomach's not been too happy!)- he feels that

> it's a safer choice. I've read quite a few of the posts, and I'm not

> sure now if it is the better of the two evils?

> Any advice would be appreciated.

> Kind Regards.

> Helen.

>

>

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

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[Guest guest]

Hi & Welcome Helen: I was wondering why you are on 50mg. twice a day versus

100mg.? Dr. Trentham started me on 50mg. twice a day only because I may have

had previous hives from doxycycline and we wanted to be sure that would not

happen with the Minocin - but he increased it to 100mg. twice a day three

weeks later. He believes in starting patients right off with 100mg. twice a

day so I was wondering why you are on this low dose after 8 weeks now. Just

my opinion, but perhaps if your dose was increased to that, you might get

better results?

Babs

RA 8/98, DX 4/99, AP 11/99

200 mg. Minocin

112 mcg. Synthroid

2 mg. Hytrin

10 mg. Lipitor

Mestinon

Vits. & Misc. Suplmts.

[Guest guest]

Dear Helen, I second Babs on wonderful why such a low dosage. Babs, do you

still see Dr. Trentham. What is he like in person and where do you go to see

him? He is the one who trained Dr. Sinnott. Hope you are feeling better,

Helen

but are curious, too.

Babs56p@... wrote:

> Hi & Welcome Helen: I was wondering why you are on 50mg. twice a day versus

> 100mg.? Dr. Trentham started me on 50mg. twice a day only because I may have

> had previous hives from doxycycline and we wanted to be sure that would not

> happen with the Minocin - but he increased it to 100mg. twice a day three

> weeks later. He believes in starting patients right off with 100mg. twice a

> day so I was wondering why you are on this low dose after 8 weeks now. Just

> my opinion, but perhaps if your dose was increased to that, you might get

> better results?

>

> Babs

> RA 8/98, DX 4/99, AP 11/99

> 200 mg. Minocin

> 112 mcg. Synthroid

> 2 mg. Hytrin

> 10 mg. Lipitor

> Mestinon

> Vits. & Misc. Suplmts.

>

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

> Get a NextCard Visa, in 30 seconds!

> 1. Fill in the brief application

> 2. Receive approval decision within 30 seconds

> 3. Get rates as low as 2.9% Intro or 9.9% Fixed APR

> Apply NOW!

> 1/2646/0/_/532797/_/955241786/

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

Attachment: vcard [not shown]

[Guest guest]

Hi Adam,

Have I sent you our doctors' list or are you referring to the shorter list

on rheumatic.org? If you're still in Brisbane, there's a Dr. Philip

Stowell who is very good with this therapy and perhaps you could talk to

him by telephone and discuss the financial problems? I'll send you his

contacts if you haven't had the list from me.

It's worth trying tons of your local doctors with the protocol from

rheumatic.org. I can give you references of Australian doctors (Drs.

Hanner and Kerrie Davies in are very experienced) who

would help any doctor in your area.

I'm in Adelaide - let me know what I can do to help,

Chris.

On Wed, 4 Oct 2000, adam parsons wrote:

> hi everyone,

> i thought id let everyone get to know me by telling my story,

> which starts when i was 13years old. It was at 13 that i started getting

> psoriasis, but at the same time the asthma that id had went away. It didnt

> seem like such a bad swap to me because i loved to exercise and was suddenly

> able to. the P was just a few spots on my scalp and didnt seem like a big

> deal except for the itching. anyway, i started running and by the time i was

> 19 i was running 20km every day and still had enough energy to work 14 hour

> shifts as well.then i startted to get back pain, which the doctor told me

> was a torn muscle. it took about 2 months to heal which was a very long time

> for me as i was used to healing within days. a little while after that my

> collar bone began to swell...i thought it was from a fall id taken

> rollerblading but it just wouldnt go away. at the same time the psoriasis

> was getting worse..spreading all over my body. my doctor sent me to get

> blood tests and a bone scan done which revealed PA. after that i pretty much

> lived in denial..not of the fact that i had PA, i just refused to believe

> that it had to change my life. i didnt take any interest in what the doc put

> me on; id just take it and try to do what id always done. it was impossible

> of course. as the PA spread i had to give up running completely...i could

> run through pain coz i was used to it, but my legs just werent

> responding.....id always thought that PA would just mean pain and that you

> only got weak and stiff if you werent fit. when i gave up running i got

> insomnia and yet at the same time i was constantly lethargic. for the firtst

> 2 years i didnt sleep more than 4 hours a night. my doc put me on

> methotrexate which helped once the dose got high enough but then i started

> to react to it. even though all tyhe tests came back ok, i started vomiting

> each week...two days after taking the methotrexate.it got so bad that i was

> hospitalised for two weeks. even then the docs wanted to keep using meth

> because they werent able to connect my being sick with it directly....i said

> no. it took 3 months of not taking methotrexate to get rid of all the

> symptoms. then i started to flare badly....instead of taking some new

> medical poison i moved from colder climate melbourne to the warmth of

> brisbane and experienced total remission for 1 month. Then it started over

> again.....its at a stage now where i can hardly walk most mornings...im 24

> now and i have twelve joints affected at the moment and a number of tendons

> etc 3 of those joints only started swelling a month ago after being

> hospitalised for cytomegolavirus(they think). my local doc wont prescribe

> AP. i went to see a rheumatologist today to find out what he thought...his

> response was... " hold on. We aren't here to discuss what you want your

> treatment to be, we're here for me to decide on your treatment " . after some

> argument in which he mentioned that minocin can cause brain swelling(has

> anyone ever heard of that?)he told me he wanted me to take methotrexate

> again but as muscle injections. i took the script but its definatley a last

> resort. im still looking for a doc to prescribe AP for me. none of the ones

> on the list are any good for me coz none of them bulk bill(which means you

> have to pay for each visit). if i can find one that does bulk bill it will

> be free, except maybe the prescription and as im on a disability pension im

> short on cash. right now im having a hard time keeping depression at bay, in

> fact most of the time i cant. im sure most of you know the feeling of your

> life spiraling out of control. im constantly getting worse and finding a doc

> is hard coz of mobility problems. well thats my story...sorry its so long

> winded. and thanks for all the responses to my previous email.

> adam

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[Guest guest]

Dear Adam,

Sometimes you just have to forge you own way. My son also has no

income and no insurance. He has had to go on charity care at the

local hospital. It took a lot of phone calls and some forms to fill

out to get assistance. Then he had to convince their traditional

rheumatologist to prescribe antibiotics. We brought in a lot of

literature copied off the net to get the doctor's reluctant

cooperation.

Since then he has applied for Basic Health Insurance and found a

group that will supplement the monthly premium payments. This will

give him a lot more choices with finding a doctor who is familiar

with AP. I know things are probably very different where you live,

but start exploring and you may find some options. It's so hard when

you can't work because of your illness and at the same time you have

bigmedical expenses. You might be able to find some compassionate

agency or organization willing to help.

Pierre Fontain has published a website that will help with the cost

of medications. Other than that, you may have to find a doctor that

does bulk billing and then educate him to give you the care you want.

The only other way I can think of--is to borrow the money to get to a

good AP doctor, and pay it back when you're well again and able to

work. My son is getting help from the family to cover the cost of

expensive tests and vitamin supplements that are not covered. Don't

be afraid to ask for help. What goes around comes around and someday

you maybe able to help them in return. What's important is to get

your health back. If you are committed to that, it will happen.

Best of luck to you,

God Bless,

[Guest guest]

> Pierre Fontain has published a website that will help with the cost

> of medications.

Here's one www.needymeds.com

Once when I had no insurance, I was able to get meds through the local

county hospital for free. It was called the MIA program (Medically Indigent

Adult) The doctor I was seeing at a sliding scale clinic would write

" patient is MIA " on the prescription and I could take them to the county

hospital pharmacy and get them filled for free. It took a few hours to have

them filled due to the long back-up they had, but was worth it.

Perhaps you could ask if there is a similar program at the local hospital

in your area (the default hospital that has to take charity patients). It

may take some detective work, as they do not really want to be swamped with

people doing this, but try the hospital social worker or patient advocate

for starters if the pharmacy won't tell you. It is just like the program

that needymeds.com tells you about (subsidized by the drug companies, for

tax breaks, I'd bet! ; ), but the hospital does the paperwork on it instead

of you.

You sound like you have plenty of courage and determination, Adam, even if

it is a bit worn out from over-use! Make sure you eat right (sometimes hard

to do when you are depressed, but not eating only makes it worse) and get

your vitamins, especially the B-vitamins--they are cheap, and I feel they

help me with everything from depression and pain level to the tingling I get

in my hands and feet from nerves that are pressed by swelling.

Take care, and don't be shy about talking over your problems here if you

are blue--someone here has probably been through the same things you have,

and can offer tips and sympathy, and someone else is probably going through

the same thing and reluctant to talk about it, so you can help them too by

bringing up issues we all face. Liz G

[Guest guest]

In a message dated 10/04/2000 2:02:24 AM Pacific Daylight Time,

asp93@... writes:

<< " hold on. We aren't here to discuss what you want your

treatment to be, we're here for me to decide on your treatment " >>

Hum well I am in America so I do not know how it is in Australia except for

the Olympic coverage and that flying girl, LOL. However here in America as a

last resort one can go to a feed store (a place where you buy food and

supplies and medicine for ones farm animals),and pick up some powered

tetracycline. A trip to a health store (for humans) and one can pick up some

empty gel caps. It is then a matter of simplicity to measure out the correct

dosage. Where there is a will there is a way. After all it is not the Doctor

which gets you better it is the antibiotic.

Also, even though I have a rheumotologist, all of my Antibiotics have been

prescribed to me by general practitioners, family doctors. Best of luck to

you in your goal of getting the antibiotics. I know you will get them :-)

Chin up :-)

As for what your Doctor said well sorry he is mistaken. If a patient does

not take an active role in ones health care, one can be blindly lead down the

usual path and we have seen how that turns out. :-)

[Guest guest]

Wow, never thought of that! Bet it's way cheaper, too.

Lyn

==================

>In a message dated 10/04/2000 2:02:24 AM Pacific Daylight Time,

>asp93@... writes:

>

><< " hold on. We aren't here to discuss what you want your

> treatment to be, we're here for me to decide on your treatment " >>

>

>Hum well I am in America so I do not know how it is in Australia except for

>the Olympic coverage and that flying girl, LOL. However here in America as

>a

>last resort one can go to a feed store (a place where you buy food and

>supplies and medicine for ones farm animals),and pick up some powered

>tetracycline. A trip to a health store (for humans) and one can pick up

>some

>empty gel caps. It is then a matter of simplicity to measure out the

>correct

>dosage. Where there is a will there is a way. After all it is not the

>Doctor

>which gets you better it is the antibiotic.

> Also, even though I have a rheumotologist, all of my Antibiotics have

>been

>prescribed to me by general practitioners, family doctors. Best of luck to

>you in your goal of getting the antibiotics. I know you will get them :-)

>Chin up :-)

> As for what your Doctor said well sorry he is mistaken. If a patient

>does

>not take an active role in ones health care, one can be blindly lead down

>the

>usual path and we have seen how that turns out. :-)

>

>

>To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

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[Guest guest]

Welcome Charlene. I'm glad you found a good rheumatologist at last -

they're hard to come by. I wish some of them had arthritis, then they

might have a better idea of our condition. When my rheumy asks how I

am, unless I'm having a flare I usually say " fine. " Of course what

that really means is achy and sore all over and usually very tired as

well - that's " normal " for us. Hah, if only they knew! I stopped

complaining about " normal " aches and pains a long time ago because

there's absolutely nothing they can do about it, but if the feeling

could be transferred over to the doctor for just a few minutes he/she

would probably be screaming bloody murder! I guess that's why

arthritis sufferers are said to have a higher pain threshold than

most folks - we have to!

Regarding leg pains as children - yes, that happened to me at about

that same age you mention (10 or 12). It's one of the few things I

remember well from my childhood. A friend and I had been running a

lot that day, and in the evening a really severe ache set in, in one

of my knees (I forget exactly which one, but I'm pretty sure it was

the left one which is the same one that gives me most problems these

days). It was the most excruciating pain I ever had during childhood

and lasted about three or four days. We were very poor back then, and

I don't think my folks could afford to take me to a doctor - or if

they did, he certainly wasn't able to help. It was so severe I

couldn't walk or sleep much for the three days, and it was constant

the whole time - never letting up. My father made me a crutch out of

a 2x2 piece of lumber, and after the third day I was able to start

using it to hobble around from room to room. Finally, a few days

later it disappeared completely, or at least for the next 30 years or

so ;-). In fact, I would probably have forgotten all about it except

that I tend to remember it whenever I get a flare, and now recognize

it for what it probably was - an inflammatory arthritis flare up, but

at the time no one had any idea what was causing it.

Regarding a romantic relationship with someone who isn't too active,

how about a computer nerd? I'm not suggesting myself because I'm

already married, but most of us are about as active as a snail

because we're glued to our computer screens all the time! That's not

true in all cases of course - I once knew another computer programmer

who's hobby was skydiving. The rest of us thought he was nuts. Of

course I was a lot more active back then myself.

Best of luck to you,

-- Ron

=========

Qur'an 2:165; " And among the people are those who take [for worship]

partners besides Allah; they love them as they should love Allah, but

those of faith are greater in their love for Allah. If only the evil-

doers could see. Behold! They would see the punishment: That to Allah

belongs all power, and Allah will strongly enforce the punishment. "

> Hello Everybody!

>

> My name is Charlene. I am an RN and 52 years old. I started

> experiencing symptoms of Psoriatic Arthritis about 7 years ago.

> I thought I was going to out of my mind from the fatigue and the

> effect it had on my life and daily activities. I'd go to doctors

> and complain about the severe joint pain, swelling in my face

> around my eyes and the fatigue. All the docs I went to would do

> tests for RA and osteo arthritis along with general blood

> chemistries and tell me the " arthritis " tests were negative and

> labs showed I was as healthy as a horse and was going to live be

> 95 (with a cholesterol of 185). Who wants to be 95 if you can

> barely get through a whole day???

>

> I found a wonderful,kind, empathetic rheumatologist in

> sdale, AZ who agreed with my suspicions of having PA. He's

> even done the HLA test which I have come back " screamimg "

> positive for PA.

>

> Did you know that many of us complained of leg pains as little

> kids and were worked up for RA which turned out to be negative?

> Also, those leg pains were explained to be " growing " pains.

>

> I have a 12 year old who also complains of pains in leg bones

> after exercise which has been written off as having " growing "

> pains. I just pray she doesn't come down with this awful

> disease.

>

> I would love to communicate with any of you in the Phoenix area.

> We can start by e-mail and then if you would like to converse on

> the phone I'd love to talk to any of you.

>

> I'm a single mom and dread thought of trying to begin a new

> relationship with anyone since most people claim to be so

> " active " . I do what I can. My daughter and I do take Tae Kwon Do

> lessons.

>

> Please excuse the typos- I'm a great nurse but a lousy typist!

>

> Charlene

[Guest guest]

--- Ron S Dotson <rkba@...> wrote:

> Welcome Charlene. I'm glad you found a good

> rheumatologist at last -

> they're hard to come by. I wish some of them had

> arthritis, then they

> might have a better idea of our condition. When my

> rheumy asks how I

> am, unless I'm having a flare I usually say " fine. "

> Of course what

> that really means is achy and sore all over and

> usually very tired as

> well - that's " normal " for us. Hah, if only they

> knew! I stopped

> complaining about " normal " aches and pains a long

> time ago because

> there's absolutely nothing they can do about it, but

> if the feeling

> could be transferred over to the doctor for just a

> few minutes he/she

> would probably be screaming bloody murder! I guess

> that's why

> arthritis sufferers are said to have a higher pain

> threshold than

> most folks - we have to!

>

> Regarding leg pains as children - yes, that happened

> to me at about

> that same age you mention (10 or 12). It's one of

> the few things I

> remember well from my childhood. A friend and I had

> been running a

> lot that day, and in the evening a really severe

> ache set in, in one

> of my knees (I forget exactly which one, but I'm

> pretty sure it was

> the left one which is the same one that gives me

> most problems these

> days). It was the most excruciating pain I ever had

> during childhood

> and lasted about three or four days. We were very

> poor back then, and

> I don't think my folks could afford to take me to a

> doctor - or if

> they did, he certainly wasn't able to help. It was

> so severe I

> couldn't walk or sleep much for the three days, and

> it was constant

> the whole time - never letting up. My father made me

> a crutch out of

> a 2x2 piece of lumber, and after the third day I was

> able to start

> using it to hobble around from room to room.

> Finally, a few days

> later it disappeared completely, or at least for the

> next 30 years or

> so ;-). In fact, I would probably have forgotten all

> about it except

> that I tend to remember it whenever I get a flare,

> and now recognize

> it for what it probably was - an inflammatory

> arthritis flare up, but

> at the time no one had any idea what was causing it.

>

>

> Regarding a romantic relationship with someone who

> isn't too active,

> how about a computer nerd? I'm not suggesting myself

> because I'm

> already married, but most of us are about as active

> as a snail

> because we're glued to our computer screens all the

> time! That's not

> true in all cases of course - I once knew another

> computer programmer

> who's hobby was skydiving. The rest of us thought he

> was nuts. Of

> course I was a lot more active back then myself.

>

> Best of luck to you,

>

> -- Ron

>

> =========

> Qur'an 2:165; " And among the people are those who

> take [for worship]

> partners besides Allah; they love them as they

> should love Allah, but

> those of faith are greater in their love for Allah.

> If only the evil-

> doers could see. Behold! They would see the

> punishment: That to Allah

> belongs all power, and Allah will strongly enforce

> the punishment. "

>

>

>

>

> > Hello Everybody!

> >

> > My name is Charlene. I am an RN and 52 years old.

> I started

> > experiencing symptoms of Psoriatic Arthritis about

> 7 years ago.

> > I thought I was going to out of my mind from the

> fatigue and the

> > effect it had on my life and daily activities. I'd

> go to doctors

> > and complain about the severe joint pain, swelling

> in my face

> > around my eyes and the fatigue. All the docs I

> went to would do

> > tests for RA and osteo arthritis along with

> general blood

> > chemistries and tell me the " arthritis " tests were

> negative and

> > labs showed I was as healthy as a horse and was

> going to live be

> > 95 (with a cholesterol of 185). Who wants to be 95

> if you can

> > barely get through a whole day???

> >

> > I found a wonderful,kind, empathetic

> rheumatologist in

> > sdale, AZ who agreed with my suspicions of

> having PA. He's

> > even done the HLA test which I have come back

> " screamimg "

> > positive for PA.

> >

> > Did you know that many of us complained of leg

> pains as little

> > kids and were worked up for RA which turned out to

> be negative?

> > Also, those leg pains were explained to be

> " growing " pains.

> >

> > I have a 12 year old who also complains of pains

> in leg bones

> > after exercise which has been written off as

> having " growing "

> > pains. I just pray she doesn't come down with this

> awful

> > disease.

> >

> > I would love to communicate with any of you in the

> Phoenix area.

> > We can start by e-mail and then if you would like

> to converse on

> > the phone I'd love to talk to any of you.

> >

> > I'm a single mom and dread thought of trying to

> begin a new

> > relationship with anyone since most people claim

> to be so

> > " active " . I do what I can. My daughter and I do

> take Tae Kwon Do

> > lessons.

> >

> > Please excuse the typos- I'm a great nurse but a

> lousy typist!

> >

> > Charlene

>

>

> Hi Charlene, I am that doctor with PA,who

understands you and am so sorry for my colleages who

do not have PA and can not comfort you so well as

arthritis sufferers having PA. What about to share

experiences between the great nurse and a doctor

having PA and dealing with it.

Gordon

__________________________________________________

[Guest guest]

--- Ron S Dotson <rkba@...> wrote:

> Welcome Charlene. I'm glad you found a good

> rheumatologist at last -

> they're hard to come by. I wish some of them had

> arthritis, then they

> might have a better idea of our condition. When my

> rheumy asks how I

> am, unless I'm having a flare I usually say " fine. "

> Of course what

> that really means is achy and sore all over and

> usually very tired as

> well - that's " normal " for us. Hah, if only they

> knew! I stopped

> complaining about " normal " aches and pains a long

> time ago because

> there's absolutely nothing they can do about it, but

> if the feeling

> could be transferred over to the doctor for just a

> few minutes he/she

> would probably be screaming bloody murder! I guess

> that's why

> arthritis sufferers are said to have a higher pain

> threshold than

> most folks - we have to!

>

> Regarding leg pains as children - yes, that happened

> to me at about

> that same age you mention (10 or 12). It's one of

> the few things I

> remember well from my childhood. A friend and I had

> been running a

> lot that day, and in the evening a really severe

> ache set in, in one

> of my knees (I forget exactly which one, but I'm

> pretty sure it was

> the left one which is the same one that gives me

> most problems these

> days). It was the most excruciating pain I ever had

> during childhood

> and lasted about three or four days. We were very

> poor back then, and

> I don't think my folks could afford to take me to a

> doctor - or if

> they did, he certainly wasn't able to help. It was

> so severe I

> couldn't walk or sleep much for the three days, and

> it was constant

> the whole time - never letting up. My father made me

> a crutch out of

> a 2x2 piece of lumber, and after the third day I was

> able to start

> using it to hobble around from room to room.

> Finally, a few days

> later it disappeared completely, or at least for the

> next 30 years or

> so ;-). In fact, I would probably have forgotten all

> about it except

> that I tend to remember it whenever I get a flare,

> and now recognize

> it for what it probably was - an inflammatory

> arthritis flare up, but

> at the time no one had any idea what was causing it.

>

>

> Regarding a romantic relationship with someone who

> isn't too active,

> how about a computer nerd? I'm not suggesting myself

> because I'm

> already married, but most of us are about as active

> as a snail

> because we're glued to our computer screens all the

> time! That's not

> true in all cases of course - I once knew another

> computer programmer

> who's hobby was skydiving. The rest of us thought he

> was nuts. Of

> course I was a lot more active back then myself.

>

> Best of luck to you,

>

> -- Ron

>

> =========

> Qur'an 2:165; " And among the people are those who

> take [for worship]

> partners besides Allah; they love them as they

> should love Allah, but

> those of faith are greater in their love for Allah.

> If only the evil-

> doers could see. Behold! They would see the

> punishment: That to Allah

> belongs all power, and Allah will strongly enforce

> the punishment. "

>

>

>

>

> > Hello Everybody!

> >

> > My name is Charlene. I am an RN and 52 years old.

> I started

> > experiencing symptoms of Psoriatic Arthritis about

> 7 years ago.

> > I thought I was going to out of my mind from the

> fatigue and the

> > effect it had on my life and daily activities. I'd

> go to doctors

> > and complain about the severe joint pain, swelling

> in my face

> > around my eyes and the fatigue. All the docs I

> went to would do

> > tests for RA and osteo arthritis along with

> general blood

> > chemistries and tell me the " arthritis " tests were

> negative and

> > labs showed I was as healthy as a horse and was

> going to live be

> > 95 (with a cholesterol of 185). Who wants to be 95

> if you can

> > barely get through a whole day???

> >

> > I found a wonderful,kind, empathetic

> rheumatologist in

> > sdale, AZ who agreed with my suspicions of

> having PA. He's

> > even done the HLA test which I have come back

> " screamimg "

> > positive for PA.

> >

> > Did you know that many of us complained of leg

> pains as little

> > kids and were worked up for RA which turned out to

> be negative?

> > Also, those leg pains were explained to be

> " growing " pains.

> >

> > I have a 12 year old who also complains of pains

> in leg bones

> > after exercise which has been written off as

> having " growing "

> > pains. I just pray she doesn't come down with this

> awful

> > disease.

> >

> > I would love to communicate with any of you in the

> Phoenix area.

> > We can start by e-mail and then if you would like

> to converse on

> > the phone I'd love to talk to any of you.

> >

> > I'm a single mom and dread thought of trying to

> begin a new

> > relationship with anyone since most people claim

> to be so

> > " active " . I do what I can. My daughter and I do

> take Tae Kwon Do

> > lessons.

> >

> > Please excuse the typos- I'm a great nurse but a

> lousy typist!

> >

> > Charlene

>

>

> Hi Charlene, I am that doctor with PA,who

understands you and am so sorry for my colleages who

do not have PA and can not comfort you so well as

arthritis sufferers having PA. What about to share

experiences between the great nurse and a doctor

having PA and dealing with it.

Gordon

__________________________________________________

[Guest guest]

<> My Story>

Welcome Charlene!!

I am also 52 and an RN and live in southeastern Wisconsin. As a child

and young adult, I suffered from what my mother called " leg aches " . They

usually occurred at night and the remedy was one aspirin and a hot water

bottle. Usually they were gone in the morning. It was just a fact of

childhood, though none of my sisters suffered from them. It is a very

interesting connection.

Welcome to the group---- you will find a lot of support and helpful

information here.

in Wisconsin

>

>

[Guest guest]

Hi Gordon!

Yes it will be SO WONDERFUL to communicate with a fellow medical colleague

who has PA. Although my rheumatologist is very empathetic and deals gently,

kindly and correctly with us, until you've come down with this dreaded

disease a non PA person has no clue what we go through. The fatigue and the

depression just drives me CRAZY!! I use to be able to go at a steady pace 18

hours a day; now I thank the Lord if I can get through 12 hours. One thing

for sure is that this disease has given me a greater understanding and

empathy for people with diseases such as Lupus or MS.

Being a doctor I have a question I like your answer/opinion on. The Medrol

injection that I was getting Q4months made me feel great, It alleviated the

bone symptoms, the pain, and the fatigue. The rheumi refuses to give them to

me on this time frame because he worried about my bone density decreasing.

Is that S/E any worse than the risk of infections from a depressed immune

system from metho?

Gordon, please write me directly at my home e-mail address so we don't have

to have all the other responses attached. My personal e-mail address is:

charahrens@...

Looking forward to hearing from you soon,

Charlene

Re: [ ] Re: My Story

>

> --- Ron S Dotson <rkba@...> wrote:

> > Welcome Charlene. I'm glad you found a good

> > rheumatologist at last -

> > they're hard to come by. I wish some of them had

> > arthritis, then they

> > might have a better idea of our condition. When my

> > rheumy asks how I

> > am, unless I'm having a flare I usually say " fine. "

> > Of course what

> > that really means is achy and sore all over and

> > usually very tired as

> > well - that's " normal " for us. Hah, if only they

> > knew! I stopped

> > complaining about " normal " aches and pains a long

> > time ago because

> > there's absolutely nothing they can do about it, but

> > if the feeling

> > could be transferred over to the doctor for just a

> > few minutes he/she

> > would probably be screaming bloody murder! I guess

> > that's why

> > arthritis sufferers are said to have a higher pain

> > threshold than

> > most folks - we have to!

> >

> > Regarding leg pains as children - yes, that happened

> > to me at about

> > that same age you mention (10 or 12). It's one of

> > the few things I

> > remember well from my childhood. A friend and I had

> > been running a

> > lot that day, and in the evening a really severe

> > ache set in, in one

> > of my knees (I forget exactly which one, but I'm

> > pretty sure it was

> > the left one which is the same one that gives me

> > most problems these

> > days). It was the most excruciating pain I ever had

> > during childhood

> > and lasted about three or four days. We were very

> > poor back then, and

> > I don't think my folks could afford to take me to a

> > doctor - or if

> > they did, he certainly wasn't able to help. It was

> > so severe I

> > couldn't walk or sleep much for the three days, and

> > it was constant

> > the whole time - never letting up. My father made me

> > a crutch out of

> > a 2x2 piece of lumber, and after the third day I was

> > able to start

> > using it to hobble around from room to room.

> > Finally, a few days

> > later it disappeared completely, or at least for the

> > next 30 years or

> > so ;-). In fact, I would probably have forgotten all

> > about it except

> > that I tend to remember it whenever I get a flare,

> > and now recognize

> > it for what it probably was - an inflammatory

> > arthritis flare up, but

> > at the time no one had any idea what was causing it.

> >

> >

> > Regarding a romantic relationship with someone who

> > isn't too active,

> > how about a computer nerd? I'm not suggesting myself

> > because I'm

> > already married, but most of us are about as active

> > as a snail

> > because we're glued to our computer screens all the

> > time! That's not

> > true in all cases of course - I once knew another

> > computer programmer

> > who's hobby was skydiving. The rest of us thought he

> > was nuts. Of

> > course I was a lot more active back then myself.

> >

> > Best of luck to you,

> >

> > -- Ron

> >

> > =========

> > Qur'an 2:165; " And among the people are those who

> > take [for worship]

> > partners besides Allah; they love them as they

> > should love Allah, but

> > those of faith are greater in their love for Allah.

> > If only the evil-

> > doers could see. Behold! They would see the

> > punishment: That to Allah

> > belongs all power, and Allah will strongly enforce

> > the punishment. "

> >

> >

> >

> >

> > > Hello Everybody!

> > >

> > > My name is Charlene. I am an RN and 52 years old.

> > I started

> > > experiencing symptoms of Psoriatic Arthritis about

> > 7 years ago.

> > > I thought I was going to out of my mind from the

> > fatigue and the

> > > effect it had on my life and daily activities. I'd

> > go to doctors

> > > and complain about the severe joint pain, swelling

> > in my face

> > > around my eyes and the fatigue. All the docs I

> > went to would do

> > > tests for RA and osteo arthritis along with

> > general blood

> > > chemistries and tell me the " arthritis " tests were

> > negative and

> > > labs showed I was as healthy as a horse and was

> > going to live be

> > > 95 (with a cholesterol of 185). Who wants to be 95

> > if you can

> > > barely get through a whole day???

> > >

> > > I found a wonderful,kind, empathetic

> > rheumatologist in

> > > sdale, AZ who agreed with my suspicions of

> > having PA. He's

> > > even done the HLA test which I have come back

> > " screamimg "

> > > positive for PA.

> > >

> > > Did you know that many of us complained of leg

> > pains as little

> > > kids and were worked up for RA which turned out to

> > be negative?

> > > Also, those leg pains were explained to be

> > " growing " pains.

> > >

> > > I have a 12 year old who also complains of pains

> > in leg bones

> > > after exercise which has been written off as

> > having " growing "

> > > pains. I just pray she doesn't come down with this

> > awful

> > > disease.

> > >

> > > I would love to communicate with any of you in the

> > Phoenix area.

> > > We can start by e-mail and then if you would like

> > to converse on

> > > the phone I'd love to talk to any of you.

> > >

> > > I'm a single mom and dread thought of trying to

> > begin a new

> > > relationship with anyone since most people claim

> > to be so

> > > " active " . I do what I can. My daughter and I do

> > take Tae Kwon Do

> > > lessons.

> > >

> > > Please excuse the typos- I'm a great nurse but a

> > lousy typist!

> > >

> > > Charlene

> >

> >

> > Hi Charlene, I am that doctor with PA,who

> understands you and am so sorry for my colleages who

> do not have PA and can not comfort you so well as

> arthritis sufferers having PA. What about to share

> experiences between the great nurse and a doctor

> having PA and dealing with it.

>

> Gordon

>

>

>

>

>

> __________________________________________________

>

[Guest guest]

NO DRINKING AT ALL !

[ ] My Story

> Hello, My story is differnt than most in that my family Dr. diagnosed

> my problem on the first visit. (I have had psoriasis for 10 years and

> PA for about 8 months.) I guess after looking at all of the

> psoriasis. My nails must have been the give away. I tried several of

> the arthritis medications Vioxx, predisone, ibuprofen, etc. He said I

> needed something more potent that he would rather a RH. prescribe.

> I told my RH. what medications that I had tried. My RH said I had PA

> and wanted me to take 1800 mg a day of ibuprofen, to which my family

> Dr. said was candy and in that I had already tried that and needed

> something else. Later in that same day I went to see my Dermatoligist

> and after seeing my nails, swollen and very red left thumb, right

> toe, she immediatly put me on 20 mg MTX and recommended that I not

> take Ibuprofen with it. My pharmisist also said not to combine the 2

> medications. That confused me because I've read in the group where a

> lot of people have taken both. All of these trained professionals

> have me confused. I'm only on MTX and after 5 months I am psoriasis

> free but my hands and feet are fair worse from the PA.

> Question 1. How long should I wait to try something else.

> Question 2. What kind of drinking is bad when on MTX.

> Question 3. Does anyone know of a connection between the Adkins diet

> and PA. (have been on the diet for approx. 2 years)

>

> Daryl

>

>

>

>

>

>

>

[Guest guest]

Daryl asked:

> > Question 3. Does anyone know of a connection between the Adkins

diet

> > and PA. (have been on the diet for approx. 2 years)

> >

Just a general comment about some diets. I'm not sure whether Adkins

is low-carb or low-protein (or is neither). But in general, any diet

that is too low in carbs or too low in protein can stress the

kidneys. Got this from reading and also from a nephrologist. (I have

one kidney so I keep up with the literature from that angle.)

Sorry I can't be more helpful re: PA.

Bryna

[Guest guest]

so what do you think made you get so much better? the hydroxyurea?

> Message: 1

> Date: Mon, 19 Aug 2002 19:37:42 -0000

> From: " atlantichighway " <STUARTPEARSON6@...>

> Subject: MY STORY

>

> I thought I would share my experiences with others on this site.

> I am 50 and have suffered from psoriasis since the age of 17.Around

> 1987 I began to experience aches and pains in my elbows, knees and

> toes.This was diagnosed by my GP as ' An early arthropathy', I was

> prescribed Voltarol as an anti-inflammatory, which seemed to help.

>

> However, the cold damp British winters were totally unsympathetic to

> my plight, and I had more than one or two 'bad days'.I was a foot

> patrol Police officer at this time, so having dodgy toes and knees

> was no fun!

>

> Around 1990, I transferred to Detective duties, which obviously

> involved less physical exercise.At the time I remember taking a long

> time to heave myself out of bed and, on a bad day walking downstairs

> sideways to ease the pressure on my knees.

>

> The arthritis was not improving nor was my psoriasis; nor my general

> physical and mental health.

>

> In 1992, I was retired from the police on ill-health grounds, mostly

> due to my problems coping with the above.

>

> After about a year or so later[ my memory gets worse!] , I was

> prescribed hydroxyurea once daily.

>

> Whether purely co-incidental or not I noticed a gradual improvement

> in my PS and my arthritis.So much so that in mid 1993 I applied to

> rejoin the Police.

>

> The inevitable medicals ensued.I was then told that I would have to

> re-take the Police 'Fitness Test' before my application could be

> considered further.

>

> I made the mistake of not preparing for the Ist test and failed

> miserably.I stuck at it, building up my speed strength and stamina,

> until I finally passed the test in late 1993.I would add that by this

> time my arthritis had disappeared COMPLETELY and my skin was better

> than it had been for years.

>

> Shortly afterwards I rejoined the Police where I still am to this day.

>

> My psoriasis waxes and wanes and I now have problems with my neck and

> shoulders, which I am told is 'calcification of the neck ligaments'.

>

> However my quality of life is many times better than it was, whether

> attributable to drugs, exercise, good luck or co-incidence I don't

> know, but I thought I would strike a positive note!

>

> Tip1.. Buy an oatmeal colour lounge carpet if you are psoriatic,

> trebles the life expectancy of your vaccuum cleaner!

>

> Tip2.. Several years ago on British TV there was a musical black

> comedy called 'THE SINGING DETECTIVE', written by a bloke called

> Dennis Potter. Dennis was a very famous playwright who happened to

> suffer very badly from Psoriatic Arthritis, he is sadly now dead [

> from cancer.] The piece was allegedly semi-auto-biographical and was

> very well received.It was funny sad and very thought provoking,

> focussing almost entirely on his illness.Check it out if available in

> the US.

>

> Love and Peace to all.

>

>

[Guest guest]

Hi Shirl,

I'm on Bextra and it's working well for me. Vioxx and Celebrex didn't help

at all. When you go back to your doctor he will give you more information.

This is a great web-site. You'll find out everything you need to know by

reading all the posts here. Good luck,

Cheryl

[ ] My Story

> Hi my name is Shirl and I am 47 years old ,here is my story .I fell

> last April of 2001 and broke my right wrist ,I now have what they

> call rsd .I am in pain all the time all threw my body .I went back to

> the same Dr that treated my hand from the very begaining in October

> of this year .,he thinks now my rsd has left me now and that I might

> have now what they call psoriatic arthritis .So I went to a

> rheumatology November the 6th I wont know if it is this until next

> Monday waiting on the blood test to come back.But this doctor kinded

> thinks this is what it is psoriatic arthritis.So he put me on bextra

> one a day 20 mg.To be hosnest with u i think I hurt more with this

> medication it might sound crazy but i hurt more in my back more so in

> my back then any where esle. I would like for any one to please email

> me back and let me know about this medication and what you think

> about this whole thing cause I am confused Thank you Shirl

>

>

>

> Please visit our Psoriatic Arthritis Group's informational web page at:

> http://www.wpunj.edu/pa/ -- created and edited by list member

aka(raharris@...).

>

> In August 2001 list member Jack aka(Cornishpro@...) began to

conduct extensive research which he publishes as the Psoriatic Arthritic

Research Newsletter monthly in our emails and digest format. Many thanks to

Jack. Back issues of the newsletter are stored on our PA webpage.

>

> Also remember that the list archives comprise a tremendous amount of

information (Over two years of messages and answers).Feel free to browse

them at your convenience.

>

> Let's hear from some of you lurkers out there! If you have a comment or

question chances are there is a person who has been around a while who can

help you out with an educated guess for an answer. If not we can at least

steer you in the right direction with a good website to go to for the

answers.

>

> Blessings and Peace,

>

> Atwood-Stack, Founder

> Alan , Web & List Editor

> Jack , Newsletter Editor

> Pat Bias, List Editor

> Ron Dotson, List Editor

> and many others who help moderate (thank you!)

>

>

>

[Guest guest]

Hi Sherl,

If what you are taking isn't working call your Dr. and

tell him. My first NSAID worked for a little while

then it was upsetting my stomach so I called an the

new NSAID is so much better. Just call it can't hurt

you.

Good Luck,

Charlie

[Guest guest]

-Welcome to the group, Tammy! I am sorry you had such a long journey

to the PA diagnosis. I hope now that the Docs know what you have

they can find a treatment that will help. As you will see from our

messages this sometimes takes a trial and error approach.

Good Luck with everything. Did you know the psoriasis foundation

provides info and help to people seeking disability? They can be

reached at psoriasis.org.

Best Wishes,

Marti

[Guest guest]

In a message dated 9/27/2003 1:14:27 AM Eastern Daylight Time,

makeitquit@... writes:

> Sorry to hear about all of that.

> I think a lot of us in here would say we were not DXed right away.

> If the Methotrexate (MTX) does not work, you will probably go on the Enbrel

> or Humira.

I just went to my rheumy and also derm this week. they both said that a new

drup is coming out in a month or two called Raptiva. It sounds to me a little

like Humira since it works on the T cells. They are going to start me on it

as soon as it is out since the Enbrel and mtx did not work.

Janet

[Guest guest]

Thank you Marti for the welcome and the info. I just went to the site right now

to ask for information.

Tammy

-----

-Welcome to the group, Tammy!

Good Luck with everything.

Did you know the psoriasis foundation

provides info and help to people seeking disability? They can be

reached at psoriasis.org.

Best Wishes,

Marti

[Guest guest]

Thank you.

Tammy

Re: [ ] My story

Oh Yeah!!! There are NO windbags in here :-)

[Guest guest]

I have psoriasis on my scalp. That is the only place, but no one diagnosed it as

psoriasis until this past april when the diagonosed me with pa.

Tammy

Hi Tammy, I'm pretty new, my husband is the one w/PA. I found the group while

looking PA up. I had a question, " Do you have psoriasis? " if you do, is it bad.

My husband was misdiagnosed for almost 12 years or so. I'm sorry to hear about

your rough road w/ PA. best of luck! D

[Guest guest]

Hi and welcome to the group. Please don't feel guilty. Obviously the lactation consultant didn't explain things clearly. You have caught this very early. will probably benefit from more repositioning. CT usually waits till at least 3 months to band, sometimes 5. They will give you an honest opinion. Which CT are you going to? Have you seen all of the repo advice and tools in the files and links sections?

Good luck. Keep us posted.

mom to na

DOC Grad

www.thefilyaws.comsorcamc <sorcamc@...> wrote:

Hello! I am new here. I have a son, with positional plagio. Ikeep beating myself up b/c I think I did it to him. When he was born2 months ago (4 minutes of pushing, so an easy birth) he had a cutelittle round head. I could not get him to nurse on my right breast,so the lactation consultant told me to try the football hold. It waspretty uncomfortable for me, but I supported by the back of hishead. I think with all the nipple pain(that a lot of us have in theearly days of nursing) I might have been clenching my hand around hishead while he was nursing. At my 2 week appointment the doc noticed"significant flattening" and asked about the birth. I told her it waspretty uneventful. Later when I got home and went to feed him, Irealized that the malformation of his head fir

perfectly into my handwhen I nursed him. I immediately called the Lactation consultant andtold her that her instruction had caused my son to have a deformedhead!! SHe told me, NO, you need to support him at his neck - at thebase of his head....a little too late, unfortunately. For the past 6weeks, we have been doing repo and the two stretches. I went toCranial tech and have a follow up there this week. I also went for my2 month last week. 's head has definitely improved, but thereis still a decent sized flat spot and his ear misalignment is prettybad. I am pretty confident that the head would round itself out onit's own, but I am more concerned about the ear/facial assymetry. Ithink we will give C.Tech the go ahead to get things rolling this weekif they thing a helmet would help. He is so young, I am hoping wehave quick results. I look forward to learning more from all of

you.For more plagio info