New to the Group

[Guest guest]

Brent, I want to thank you for your message to Jill, because it was an

uplifting message for me to read, too. Information fights panic.

Your suggestions, insight, empathy and compassion are lovely. Thank

you for sharing them with us all.

I've been diagnosed with PA for a while, and for the first 5 years or

so fought it like crazy. I feel more at peace in my life now. I am

no longer at war with my body. I have accepted this diagnosis, and

now want to set out to be as mobile and healthy as I can be for as

long as I can be. I figure my prognosis is in large part up to me.

I think this group is going to make a difference in lots of ways. One

thing I've noticed in my personal life is sometimes I want/need to

talk about what's happening in my body, but my husband/friends/co-

workers can't relate. Like on Friday at work I began having sharp

pains in my upper chest area. Of course, I became convinced I was

having a heart spasm. After getting over the fear of my doctor

thinking I am a hypochondriac, I called to ask if she thought I should

be worried. We figured out pretty quickly together that what I was

experiencing was costochrondritis. I have have a flare of synovitis

in my thumb/wrist recently, and now this new development. I didn't

even realize this could happen. I felt relieved to know I wasn't

having a heart attack!

When you try to talk to people who don't have PA, I think it can them

feel helpless because they can't fix it or say something comforting,

and in my case I sort of end up feeling like I have complained, which

is NOT what I want to do. This place solves that. I've only been

signed up for a few days, but I can already tell this place is a

source of support, solidarity, an outlet, and a place to share humor

and hope. I hope to be able to contribute.

Thank you again.

Kendrick

Hi Jill,

On behalf of the many other members, welcome to the group. You

sound remarkably up-beat. Being upbeat is a personal strength that

I wish upon you if you don't already believe yourself as being. In

terms of wanting and having more energy, I think nearly all people

here can really relate. To get more energy, you may need to try

a........

[Guest guest]

Donna welcome to the group. It sounds as if you have a full and blessed

life and a great attitude. That is a HUGE step forward. How are the

girls with the new family adjustments on the horizon? 10.....ah.....the

last year of being a little girl. My daughter is eleven and though she

has special needs she is still very much like a regular 11 year old at

times and really wants her independence now...when she's not clinging

to me. lol. And 5 is so fresh and fun. And your first baby off to

college. You have quite a span there! I know the feeling of finally

having a diagnosis and KNOWING what is going on. And now you can begin

to learn and take some control back. This is a good site for that and

great for support and understanding as well. And yes...a home based

business is a good idea. If you come up with a good one, let me know as

I am finding it to be something I need to do as well. Welcome again! -

Betz

[Guest guest]

Hey Jill. Welcome to the group though I'm sorry your life lead you to a

place where you needed us. This is a great spot for support and

reliable information. It can be very clinical and very uplifting. And

don't worry about lengthy posts. They have not booted me off yet and I

get a little wordy sometimes. Ok. All the time. lol. I'm 45, diagnosed

4 years ago and having a rough year but working through it. Thanks to

this group I am an educated patient and when I have a long day like I

did this Friday...in the ER for seven hours alone, I know I can come

home and get some support from the group who understands the

frustrations that this disease can give. I have recently been diagnosed

with Iritis, inflamation of the optic nerve. This can effect about 30%

of the people who have Psoriatic Spondylitis which is the form of PA

that I have. There are actually 5 types of PA. Sometimes it takes years

to figure out what your type is and frankly, I don't think it matters

though. You will get treated with whatever drugs work best for you. We

are all different and respond differently to the medications. So keep

reading and keep your great attitude and you'll be the best you can be.

(Isn't that a hair color commercial???) -Betz

[Guest guest]

In a message dated 08/09/2006 12:47:50 GMT Daylight Time, BFSHOPS@...

writes:

Last month, a hand surgeon from the Curtis International Hand

Clinic (Baltimore, MD) that specializes in inflammatory arthritic

hands reconstructed my left hand. My right hand also needs the same

surgery.

Hi Beth,

Welcome to the group. I also have the mutilans version of PA although I just

have two fingers affected by pencil in cup syndrome and they are minor fingers

so no need for any reconstruction. How are your hands after the surgery? Was

it a success?

I'm glad you could join us but sorry that you have to. I hope someone was

able to help you with your Enbrel question. I am on it too but just one 50mg

weekly dose.

Take care,

[Guest guest]

hi lorrie in seattle here, and i also have experienced chest pains. ive never

heard of costochrondritis. could i get more info about this or anyone out

there? ive also been told its not a heart attack. but im not so convinced.

thanks lorrie

kendrick_fischer <kendrick_fischer@...> wrote:

Brent, I want to thank you for your message to Jill, because it was an

uplifting message for me to read, too. Information fights panic.

Your suggestions, insight, empathy and compassion are lovely. Thank

you for sharing them with us all.

I've been diagnosed with PA for a while, and for the first 5 years or

so fought it like crazy. I feel more at peace in my life now. I am

no longer at war with my body. I have accepted this diagnosis, and

now want to set out to be as mobile and healthy as I can be for as

long as I can be. I figure my prognosis is in large part up to me.

I think this group is going to make a difference in lots of ways. One

thing I've noticed in my personal life is sometimes I want/need to

talk about what's happening in my body, but my husband/friends/co-

workers can't relate. Like on Friday at work I began having sharp

pains in my upper chest area. Of course, I became convinced I was

having a heart spasm. After getting over the fear of

my doctor thinking I am a hypochondriac, I called to ask if she thought I

should

be worriedickly together that what I was . We figured out pretty qu

experiencing was costochrondritis. I have have a flare of synovitis

in my thumb/wrist recently, and now this new development. I didn't

even realize this could happen. I felt relieved to know I wasn't

having a heart attack!

When you try to talk to people who don't have PA, I think it can them

feel helpless because they can't fix it or say something comforting,

and in my case I sort of end up feeling like I have complained, which

is NOT what I want to do. This place solves that. I've only been

signed up for a few days, but I can already tell this place is a

source of support, solidarity, an outlet, and a place to share humor

and hope. I hope to be able to contribute.

Thank you again.

Kendrick

Hi Jill,

On behalf of the many other members, welcome to the group. You

sound remarkably up-beat. Being upbeat is a personal strength that

I wish upon you if you don't already believe yourself as being. In

terms of wanting and having more energy, I think nearly all people

here can really relate. To get more energy, you may need to try

a........

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

Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+

countries) for 2¢/min or less.

[Guest guest]

I had a severe bout of chest pains, went to the ER & everything.

After a full workup the ER doc thought I had pericarditis...

inflammation of the lining aroudn the heart.

Well, after 5 weeks of no relief & intermittent severe pain despite

rest, my physician's assistant suggested it could be acid reflux. I

was like " what??? I have no burning sensation, just chest pain &

tingling down my arm. None of the ER docs thought it was anything

other than heart related!! " . Well, she said that millions are spent

are cardiac treament when many times the issue is acid reflux.

3 different trial meds later, I started taking Nexium, and my chest

pain disappeared. I've been fine ever since.

Something to consider,

-Marietta

> hi lorrie in seattle here, and i also have experienced chest

pains. ive never heard of costochrondritis. could i get more info

about this or anyone out there? ive also been told its not a heart

attack. but im not so convinced.

> thanks lorrie

[Guest guest]

Hi!

My name is Sandy, I just turned 36 Sunday, and I was just diagnosed

with PA earlier this month. I really appreciate everyone sharing

their stories on here, I don't feel so alone in this now seeing how

many other people have such similar experiences to mine. I never

even knew PA existed until I was getting ready to go for a check up

and I was trying to look up a cream that I had used before that had

really worked on my psoriasis and saw a link for an article about PA

and I wondered if that was what my Mom had had. Well, once I started

reading I realized it described exactly what was happening to MY

hands! I'd been having extreme pain in them (and the main reason I

had scheduled the check up!), swelling, stiffness, burning, redness.

I had also been having really bad problems with my nails - fingers

and toes - and had thought I'd had a nail fungus but the nail

treatment drugs hadn't worked on me, plus the other pains I had all

over, especially in my knees that I thought was left over from a car

wreck about 5 years ago and the two surgeries resulting from it. The

list goes on and on. Back pain, hip pain, heel spurs, boils

(generalized pustular psoriasis? I had NEVER heard of it!) my eyes

becoming too dry and red and sore and not being able to wear

contacts anymore, I'd had 3 sleep studies and been diagnosed with

narcolepsy every time and have been taking Adderall to keep me awake

and aware during the day and Ambien at night to be able to sleep for

several years - if I don't take them I can't stay awake no matter

where I am, psoriasis covering me on about 30% or more of my body,

it goes on and on. Well, when I went for the check up I told my

general doc about the extreme pain in my hands which had started in

my left thumb and went from there into the index finger, then

started in my right hand, my hands have been swollen first thing in

the morning for years and I'd have to let them soak in warm water

for several minutes to get them to start moving again, but nobody

had EVER suggested PA. That doc didn't either, she suggested that I

might have " Trigger Thumb " and referred me to an orthopedic doctor

who did x-rays on my hands. When he came into the exam room I could

tell it wasn't good news. He asked me what I thought was going on

and I told him how the doctor had suggested Trigger Thumb but I

didn't really understand why it would be spreading so rapidly into

other parts of my hands and that I'd been doing some research on my

psoriasis and had run across PA and how it seemed to explain

EVERYTHING that had ever been wrong with me. He told me that he

thought I was exactly right and that he'd been " feeling me out " to

see if I had any idea that anything was really wrong with me before

having to come out and tell me everything, and that telling him that

I have psoriasis was the most important thing I could have told him

and that my x-rays showed deformities in almost every joint and that

he was going to refer me to a rheumatologist for further testing and

treatment. It had taken about a month from the first dr. appt. until

I was in the orthopedic dr.'s office, then another 6 week wait to

see a rheumatologist, which was very painful and anxiety ridden, but

as soon as I met the doctor he looked at my hands and nails, asked

several questions and said along with the x-rays and other dr.

reports there was no question - I have PA. Then came the blood

tests, I can't take methotrexate - my liver levels are way too high -

twice as high as they're supposed to be, so he said he was going to

put me on Enbrel but that he was sure my health insurance would try

to fight it, which they did, but with persistance and many frequent

phone calls, they gave in pretty quickly and okayed my prescription

to be filled and I only had to pay the $35 co-pay each month, I was

extremely lucky I think. I took my first shot last Friday and so far

I can tell a big difference! I'm not hurting anywhere near as bad as

it had been, the swelling is down everywhere, my psoriasis looks

like it's starting to go away, and I feel more awake and aware than

I have in years. I've had more doctor visits over the years than I

can count, every symptom being diagnosed as something different and

never being connected to each other by any of the doctors or myself.

If it hadn't really started hurting really bad I don't think it ever

would have been. I've been to a few different dermatologists, but

not even a single one ever suggested PA, even though I know that I'd

been asked about aches and pains by them. It was about April when

the pain in my hands started, and I was diagnosed 9-6-06, and in the

5 months my pinky fingers have gone pretty crooked, my thumbs are a

little crooked and the joints have gotten really big in them, one

has a big lump jutting out of the side of it, both of my index

fingers are turning to the outside at top. Since my first shot

Friday I have lost 5 pounds, I've always been really overweight but

the docs could never figure out why, i don't eat much, but if i

don't starve myself the weight keeps coming on. I read an article

the other day (I can't remember which website - I've read so many

here lately!) that said PA can really mess up your thyroid and

metabolism, I haven't been sick or anything since taking the shot so

that's the only thing that I can think of to explain losing 5 pounds

in 4 days. I just hope the Enbrel keeps working - from reading on

here I saw some people wrote that after a few years it wasn't

working as well. I go back to the rheumatologist is 3 weeks, and I

hadn't read much when I last went, but what are good questions that

I should ask? I want to know as much as possible as to what I can

expect, what the eventual prognosis could be, etc. I'd appreciate

any insight that anyone could give me. Wishing you all the best!

[Guest guest]

Welcome, Sandi. Isn't it a shame that for so many there is already

joint damage before we finally get diagnosed? I think we who have

PA can help doctors become more aware of PA and what questions to

ask and what to look for. I've called each of the GPs that saw me

over the years, plus each of the orthopedists that saw me over the

years. I had really nice conversations with them and they seemed to

appreciate it. I urged them to be very particular to look for nail

changes when people complain of joint pain. In my case, I didn't

have skin involvement for many years. But my nails might have been

a clue had any doctor ever looked at them.

I've also talked to 2 friends who are internists, telling them all

I've learned about PA. Neither was aware that joint pain can precede

skin involvement, or that nail P can be misdiagnosed as fungus, or

that joint damage can occur so quickly.

Also, 3 dentists (including one who teaches at the dental school

here) about how many people are misdiagnosed with TMJ when what they

have is PA. And sometimes it is the first manifestation of the PA!

The dentists were clueless and so appreciative of the info I gave

them. I suggested they ask about P, ask about pain in other joints,

and look at nails, whenever someone presents with suspected TMJ.

I'm urging these doctors and dentists to err on the side of caution

and refer people to rheumatologists for differential diagnosis,

rather than risk possible irreversible joint damage. Most were not

aware how quickly joint damage can occur, even in absence of " major "

episodes.

Now I'm going to start talking to nail technicians. Tell them about

PA and how it can manifest itself in nails and skin of hands and

feet. Printed out some pics from the web of plantar-palmar P so

they can hopefully recognize it if they see it. Also some pics of

nail issues. My rheumy gave me some extra brochures from the

Arthritis Foundation about PA so I can give them out to the

manicurists and pedicurists.

I really think that better education about PA among physicians,

dentists, and nail techs could help save many people from serious

damage.

sherry z

[Editor's Note: You are so right, Sherry. We can do a lot to educate the

people who are in the front line of identifying the disease. My rheumy is the

head of rheumatology at a teaching hospital in NYC and as a result, has a lot of

med students do a rotation with him. I always make the students look at my

nails even if my rheumy fails to mention them to the students. I tell them to

take a good look, because this is a classic clinical way to identify PA. Even

sadder to me than those of us who for years went un- or mis-diagnosed, are those

who have been diagnosed with PA but who refuse to take the very medications that

will help them stem the progression of the disease. We also have an obligation

to educate them. Thanks for your excellent post, Sherry. Kathy F.]

>

> Hi!

> My name is Sandy, I just turned 36 Sunday, and I was just

diagnosed

> with PA earlier this month. I really appreciate everyone sharing

[Guest guest]

Hello Sandy. Welcome to the group...yes....this bunch will help you

not feel so alone or isolated with your disease as well as keep you

educated and informed. I'm sorry you had to go through so much junk to

get to a diagnosis. Such is the case for many of us as often the

symptoms don't present themselves at the same time so it ends up

falling together like a puzzle. As far as meds, some can stick with one

med for years and years but most of us need to change eventually.

That's the nature with most diseases from what I understand. But there

are more drugs...even better drugs on the very near horizon so not to

worry. -Betz

[Guest guest]

> >

> > Hi!

> > My name is Sandy, I just turned 36 Sunday, and I was just

> diagnosed

> > with PA earlier this month. I really appreciate everyone sharing

>

Thank you Sherry!

In the short time that I've even known about PA there have been two

times already, while talking to people about this, that I've had

people told me that someone in their family has a lot of the same

symptoms that I do. One, a good friend of mine's daughter has P that

comes and goes, a knuckle that stays swollen all the time, and who

has had nail problems and had a nail come completely off because it

got so bad. I asked her if she'd ever been diagnosed with PA and she

said No, that she goes to a dermatologist and he will give her

topical creams or ointments but has never even suggested that her P

could be something more and I told her she should make sure that she

gets in to see a rheumy and to ask about the possiblitly of having

PA. My friend seemed to want to shrug it off and said that her

daughter didn't really have any pain with it other than the one

knuckle hurting and I told her it would be a GREAT time for her to

go, so any further damage might be avoided. Another friend, whose

daughter is in her teens and has P, said that her daughter had

started complaining about her bones and joints hurting but thought

that it was just more " growing pains " and that she saw a

dermatologist but he'd never said anything about PA either. The

dermatologists I've seen never said anything either. What's with

this? You would think that they would be the ONES who would know

something about it! My current gp's office that I've been going to

for about 2 years now didn't know anything about PA but it seems any

time I've had a problem they knew enough to at least point me in a

direction of someone who might. The last visit I had they referred

me to an orthopedic doctor about the pains in my hands, and a

cardiologist for the pains I'd been having in my left shoulder and

arm, which after reading on here I think is all related with the PA,

especially after they had me wear a heart monitor, do a stress test,

an echocardiogram, and a nuclear scan of my heart and found nothing.

But, again, at least they knew that, whatever it was was beyond

their experience. I've heard of too many people going to doctors who

would never admit that they didn't know what it was or what to do

and would just try different things until the person just stopped

going because they were too frustrated or had been made to feel like

they were imagining everything. I think the more people we educate

about this the better! And I agree with Kathy totally when I've read

her saying that knowledge is power. My husband doesn't understand my

need to read on here or on other websites to find out as much as I

can because he thinks I'll get depressed about everything. I had to

tell him that it doesn't matter what i read, it's not going to make

me depressed because there is nothing that I can do about it, but i

can be aware of what's going on with my body so I can recognize if

something is going on so I can try to get treatment for whatever it

is, and do my best to be around as long as possible and as active as

possible and be with him and our sons. To me it's like reading the

Serenity prayer, we need the strength (and knowledge) to change what

we can and the patience (and knowledge) to accept what we can't. And

the more knowledge that we can give to other people so that,

hopefully, they can get diagnosed and treated before they have bone

or joint damage too, the better. My Mom had P, and permanently

swollen joints and knuckles, and I don't believe she EVER had any

idea about PA. She was an extremely smart and well read person, but

she ended up dying at the age of 48, and I wonder now it it was

associated with the PA. I appreciate your reply and your insights.

[Guest guest]

>

> Hello Sandy. Welcome to the group...yes....this bunch will help you

> not feel so alone or isolated with your disease as well as keep you

> educated and informed. I'm sorry you had to go through so much junk

to

> get to a diagnosis. Such is the case for many of us as often the

> symptoms don't present themselves at the same time so it ends up

> falling together like a puzzle. As far as meds, some can stick with

one

> med for years and years but most of us need to change eventually.

> That's the nature with most diseases from what I understand. But

there

> are more drugs...even better drugs on the very near horizon so not

to

> worry. -Betz

>

Thanks Betz! It really does help to hear other people's stories. I had

kind of gotten the idea that a lot of people had to change medications

pretty often and it worries me because my rheumy told me there were

some medications that I wouldn't be able to take because my liver

levels are already bad. I'd heard of Enbrel, which is what I'm taking

now, and I've heard of Humira and Remicade, but that's about all I

know about. I'd heard of Celebrex, too, my father in law was taking

that for his RA and he died of a stroke a few months after starting

it. I guess we just have to keep hoping they finally find a cure. I'm

not that worried about myself, there's nothing I can change. I just

worry about my sons, I have two. My older son is 15 and my younger son

is 11, and knowing that my Mom had P and most probably PA, makes me

worry about having passed it on to my sons, they don't show any signs

yet, but I'm glad that at least I now I know some of the signs to

watch out for.

Thanks!

Sandy

[Guest guest]

Sorry to hear about the clueless derms. I was lucky in that it was

a derm who immediately saw what was going on with me and sent me to

the rheumy. The GP and orthopedists basically just did the " try

this - try that " routine.

Your observation about this group being like the Serenity Prayer is

brilliant and I totally agree!

regards,

sherry z

>

>> possible and be with him and our sons. To me it's like reading

the

> Serenity prayer, we need the strength (and knowledge) to change

what

> we can and the patience (and knowledge) to accept what we can't.

And

> the more knowledge that we can give to other people so that,

> hopefully, they can get diagnosed and treated before they have

bone

> or joint damage too, the better.

[Guest guest]

hi thanks for the response! i think you are right. this week my rheumy put me on

prilosec and so far no chest pains. i thought for sure that one more

thing.....well at least not this time:)

Marietta <mariettashirk@...> wrote: I had a severe bout of

chest pains, went to the ER & everything.

After a full workup the ER doc thought I had pericarditis...

inflammation of the lining aroudn the heart.

Well, after 5 weeks of no relief & intermittent severe pain despite

rest, my physician's assistant suggested it could be acid reflux. I

was like " what??? I have no burning sensation, just chest pain &

tingling down my arm. None of the ER docs thought it was anything

other than heart related!! " . Well, she said that millions are spent

are cardiac treament when many times the issue is acid reflux.

3 different trial meds later, I started taking Nexium, and my chest

pain disappeared. I've been fine ever since.

Something to consider,

-Marietta

> hi lorrie in seattle here, and i also have experienced chest

pains. ive never heard of costochrondritis. could i get more info

about this or anyone out there? ive also been told its not a heart

attack. but im not so convinced.

> thanks lorrie

__________________________________________________

[Guest guest]

Bree

Don't forget to get checked for co-infections. I had overcome the basic

Lyme OK, but it took a while to find an LLMD who also diagnosed me with

Bartonella, which explained a lot of the neuro symptoms. After 2 months

on Levaquin, most of the neuro symptoms seem to be better or gone

altogether.

W

Baltimore

BB wrote:

>Hi:

>

>I'm new to the group...just saw a specialist yesterday for " the bite, "

>and started taking doxycycline today. However, the doc thinks it's

>reasonable that I may have an underlying case of Lyme that's been

>present for awhile. Apparently, I have many of the symptoms and high

>exposure. I live in the NE, woodsy area, lots of indoor/outdoor pets.

>In fact, one of our dogs and I are on the same treatment now!

>

>I do not WANT to have Lyme disease, but if I do -- it explains a lot.

>I went to my PCP, gyno and a holistic physician last month after

>months (maybe even a year) of just feeling bad. Just lousy much of the

>time: fatigue, dizziness, mental fuzziness, aches and pains, headaches

>galore, etc. I just got fed up and wanted to know if it it was perhaps

>some form of depression, or perimenopausal symptoms or depressed

>immune system, or all of the above. Nothing conclusive from anyone.

>And nobody suggested a Lyme test.

>

>But if I do have this Lyme thing...if I have it...it explains A LOT.

>

>Glad you're all here.

>

>Bree

>

>

>

>

>

>

[Guest guest]

>

> >Hi:

Thanks to all who emailed and replied.

Bree

Nyack, NY

> >I'm new to the group...just saw a specialist yesterday for " the bite, "

> >and started taking doxycycline today. However, the doc thinks it's

> >reasonable that I may have an underlying case of Lyme that's been

> >present for awhile. Apparently, I have many of the symptoms and high

> >exposure. I live in the NE, woodsy area, lots of indoor/outdoor pets.

> >In fact, one of our dogs and I are on the same treatment now!

> >

> >I do not WANT to have Lyme disease, but if I do -- it explains a lot.

> >I went to my PCP, gyno and a holistic physician last month after

> >months (maybe even a year) of just feeling bad. Just lousy much of the

> >time: fatigue, dizziness, mental fuzziness, aches and pains, headaches

> >galore, etc. I just got fed up and wanted to know if it it was perhaps

> >some form of depression, or perimenopausal symptoms or depressed

> >immune system, or all of the above. Nothing conclusive from anyone.

> >And nobody suggested a Lyme test.

> >

> >But if I do have this Lyme thing...if I have it...it explains A LOT.

> >

> >Glad you're all here.

> >

> >Bree

> >

> >

> >

> >

> >

> >

>

[Guest guest]

Hi Bree:

Just wanted to let you know that Lyme Disease can lay dormant for

years. I should know. I got Lyme in 1995 and every Lyme Literate Doc

I've seen in the last 10 years believes that I had probably had it

since I was a kid. I grew up in the Hudson Valley of Upstate New York

and was always out in the woods, crawling through bushes, and climbing

trees. I have battled chronic fatigue, cognitive " fogginess " ,

depression, hormonal anarchy, and even psychotic symptoms of an

organic origin. All because of a bug bite. So you are in good company.

I monitor the list serve but am often too sick to reply. But I saw

your posting and today was a good day, so I thought I would drop you a

line. Welcome to the list serve!

Laurie

[Guest guest]

Oh, sorry to hear about that! The worse thing for me was being in pain –

hard to be sexy when you cant even get your own socks and underwear on, LOL!

but I have to say that actually since my pain level has gone down and I only

need a very little bit of med from time to time- I think it actually gets me

more in the mood- maybe cause I feel better, maybe cause now that my pain

level is less I DO get a bit of a rush when I take it…not what I would think

of as a high but almost like I had a cup of coffee…sorry I know that doesn’t

help. Maybe it depends on the meds. I am taking percoset and ibuprofen. I

am down to taking just 2.5 mg-5 mg of the percoset…course I will have to go

off the ibuprofen when I get my epidural on the 24th….I am sure I will NOT

be fun that week prior!!

JP

New to the group

Hi I am new and this is my first post. I have been reading the

messages on this site and I had a problem that I didn't see

addressed. I have had herniated discs and cord displacement and have

been on a lot of pain meds in the past year. I have experienced a

complete loss of sex drive and was told by my doctor that it is from

the medicines that I take.

From what I have read, from all of your posts, I pretty much take the

same meds. as all of you. Can you tell me how you deal with this. My

injury has taken enough of a toll on my marriage and family but this

loss of sex drive is terrible. I honestly don't know how my husband

can stand it.

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6:29 PM

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6:29 PM

[Guest guest]

Welcome, Sandy! Your story sounds so familiar. I'm sure as you read

more of our stories you will find ours sound familiar to you as well.

I hope you will see a rheumatologist soon. Please be sure to scream

loudly if your symptoms, especially the joint and tendon symptoms,

worsen or don't get a lot better. The problem with treating only the

pain and inflammation is that the arthritis can cause permanent damage

to your bones if not treated agressively.

best regards,

sherry z

>

> Good Morning Everyone,

> After looking at the photos on this website my PA is more manageable

than some. I am

> happy to be a member of this group and hope to find a common ground

with many of you.

[Guest guest]

In a message dated 20/01/2007 22:52:41 GMT Standard Time, StampinSan@...

writes:

After looking at the photos on this website my PA is more manageable than

some. I am

happy to be a member of this group and hope to find a common ground with many

of you.

Hi Sandy,

Welcome to the group. I'm glad you found us but sorry you had to. I feel your

friend was 100% correct to suggest that you find another Derm. Maybe it is

just me but I find it amazing that a Derm can't recognise P. I hope that the new

derm and the Rheumy you will be seeing can get you on to the meds that will

help you as soon as possible.

Reading on:

Sandy, Please know that Kathy keeps a very good eye on what gets through for

the rest of us to see. (and she sometimes has to take a lot of hassle for

doing so) She won't necessarily stop the stuff from getting through but if she

considers it to be 'Not scientifically proven,' she will say so and then people

can make up their own minds. I hope Kathy was able to put your mind at rest

regarding this.

Let us know how things go after your specialist appointments. I hope they go

well for you.

Take care,

[Guest guest]

In a message dated 27/01/2007 02:36:47 GMT Standard Time, abqgirl05@...

writes:

Hi! I am Lexi from Santa Fe, NM. After twenty years of dealing with

scalp psoriasis and sporadic inflammation in my toes, I've been

officially diagnosed with psoriatic arthritis. I am quite humbled by

this; I am a healthy person otherwise. I hope to learn and share my

experienes with you.

Hi Lexi,

Welcome to the group. It's a lot to take in isn't it? When one minute you are

fit and the next, your not. I hope you get a lot of benefit from the group.

They are a good bunch

Take care,

[Guest guest]

Welcome Lexi,

I have always been arthritic but I remember well

wwhen it attacked my toes. It was nasty.

My sons were young and we were in NC at the

Zoological Park there, fabulous place. We had my

dad's recreational vehicle which was a blessing

for me. My toes just turned to fat red stumps

with brusing and I could not walk. I was so

miserable and stayed inside with ice packs. We

came home early and my doc was on vacation so I

was directed to the ER at our hospital. Once

there I actually had a doc ask me quite directly

" Are you sure you weren't drunk and kicked some

one? " HOW IGNORANT, how stupid and uneducated on

any type of arthritis.

I'm glad you're here.

--- martincoyless@... wrote:

>

> In a message dated 27/01/2007 02:36:47 GMT

> Standard Time, abqgirl05@...

> writes:

>

> Hi! I am Lexi from Santa Fe, NM. After twenty

> years of dealing with

> scalp psoriasis and sporadic inflammation in my

> toes, I've been

> officially diagnosed with psoriatic arthritis.

> I am quite humbled by

> this; I am a healthy person otherwise. I hope

> to learn and share my

> experienes with you.

[Guest guest]

Hi ,

With a name like Rambo, I hope you at least kicked the doctor,

or if not at least said " I'll be back " LOL

Keep the light shining,

Ian.

We

> came home early and my doc was on vacation so I

> was directed to the ER at our hospital. Once

> there I actually had a doc ask me quite directly

> " Are you sure you weren't drunk and kicked some

> one? " HOW IGNORANT, how stupid and uneducated on

> any type of arthritis.

>

> I'm glad you're here.

>

>

[Guest guest]

Hi, Marei. Of course you are welcome here! It is a much more open-

minded group, with more accurate information, and more mature

minds .

Gail

>

> Hi,

>

> i was am ember of this group last year and am interested in joining

> again.

>

> Hope you are open to it. Someone reminded me of this group because

we

> are having some issues that we are not happy with on the

> group. I need a group which is a bit more open minded and with a

more

> mature level of people.

>

>

> thanks

>

> Marei

>

[Guest guest]

Hi Cheri:

Welcome to the group. While we are always sad when new members join us (because

that means another child has arthritis) we are always glad that their parents

have found us. You will find this group to be very supportive and

knowledgeable. Please ask any and all questions you may have. I'm sorry I

cannot help you with your mtx question as my daughter is not on any med that

strong. She is doing ok on 300mg ibuprofen twice per day and has tramadol for

really bad days and for her migraines. However, there are a lot of kiddos on

this list that are on mtx and many will jump in to help.

Just wanted to say welcome.

Beth (Hannah, 10, unspecified arthritis; asthma; gerd; migraines)

Sending prayers & happy thoughts,

Beth :-)

New to the group

Hello.

My name is Cheri. My daughter, Libby (4 1/2) was just diagnosed with

Pauciarticular JRA. A little history..

One night in October (the 26th) she woke up crying in pain, I gave her some

medicine thinking she had a charlie horse or something and she went back to

sleep. The next day she was limping very noticeably. She kept limping for the

rest of the week, albeit not very badly, and she also had some cold / flu

symptoms so I took her to the Ped. on the 30th. She had strep and was put on an

antibiotic. The limping was almost unnoticeable, but still present. We went back

to the Dr. and they asked a lot of questions and even talked about JRA but ruled

it out. Referred us to an Ortho. We went to the Ortho right before Thanksgiving

and he diagnosed her with Transient Synovitis and said it would go away on it's

own soon. It didn't...we went back a few times...X-rays. ...he had no idea what

was wrong with her. Kept saying wait and see...it should pass.

In the beginning of January She woke up one morning and could not walk. I called

the Ortho and demanded something be done. He scheduled a bone scan for the next

day at Medical University of South Carolina. She had the bone scan and all they

could say was that it was something in her left foot. The Ortho put her in a

" boot " because he thought it could be a fracture or sprain. She was in the boot

for 3 weeks and we went in for a follow up. He declared her healed and told us

to take the boot off and let her muscles work again. after 2 1/2 weeks of her

still limping I called MUSC to find another Ortho. We got an appointment for the

next day and within 10 minutes the Pediatric Ortho declared JRA and made the

appointment with the Ped Rheumy.

We had that appointment on Tuesday. She's got an appointment next Wednesday for

injections in her knee and both ankles. She was started on Methotrexate. ..an

extremely small dose.... .3 ml per week. We got that today, and will start it

tomorrow. She takes Ibuprofen 3 times a day now. She has her first eye

appointment March 28th.

I think that's everything. I'm glad to have found this group and hope to learn

alot.

I do have a question though. The Methotrexate says injectible.. but the Dr. said

she can take it orally and we can mix it with anything, like yogurt or juice.

The directions say take orally with water, but the drug facts say inject it. So

I'm confused. Any help would be greatly appreciated.

Thanks,

Cheri

[Guest guest]

Hi Cheri. Your daughter's story sounds a lot like my son's. He too was

put into a boot by his orthopedist when his symptoms began (April, 2000)

then we were sent to the " best " foot/ankle orthopedist in the area. Put

into another brace for 3 months. In August 2000, this dr declared he was

all better and would have no more pain. I said, what happens when the

pain comes back? He said it won't. I said when the pain comes back what

do we do? (Yes I questioned him twice in a row!) At that point he said,

then we may consider JRA. Well the pain was back Labor Day weekend that

year and when I called the drs office they said I couldn't go to another

dr and that I had to see him first, but he couldn't get in until

November, meanwhile put him back in the brace! Called my ped's office

and she said, get him to a ped rheumy. Which we did in October 2000

(took that long to get in). Rheumy said get that brace off, his muscles

are atrophying, and diagnosed him that day. Needless to say, we never

went back to the specialist.

Long story short, just wanted to let you know that there are people who

know exactly what you're going through. Welcome to a place that has a

lot of support and info when you need it. About the liquid, some kids

here have done that where they put the fluid into something to drink. My

son was older and took it in pill form. The thing to remember if she

takes it orally she may have more stomach problems. My son did not, but

some do. The one side effect my son had most was mouth sores. He took

folic acid, your dr should have told you about that, and rinsed with

Listerine. That helped. Some kids just take a multi vitamin with folic

acid and that is fine. My son had a separate prescription for it. Ask

the dr. Also, make sure she gets a slit lamp eye exam to watch for

uveitis which is inflammation in the eye. It cannot be detected by just

looking at the eye, the eye dr needs to dilate the eye and examine it. I

know this is hard with a little one, but some of the kids here have that

disease and it needs to be watched carefully.

Again, ask any questions you have. Someone here is bound to have

experienced it! Michele ( 19, spondy)

PS your first post took so long because if you are new, you have to be

approved by Georgina. We had a problem a while back with some weird

emails, so she started doing this.

________________________________

From: [mailto: ] On

Behalf Of Cheri

Sent: Thursday, February 22, 2007 8:00 PM

Subject: New to the group

Hello.

My name is Cheri. My daughter, Libby (4 1/2) was just diagnosed with

Pauciarticular JRA. A little history..

One night in October (the 26th) she woke up crying in pain, I gave her

some medicine thinking she had a charlie horse or something and she went

back to sleep. The next day she was limping very noticeably. She kept

limping for the rest of the week, albeit not very badly, and she also

had some cold / flu symptoms so I took her to the Ped. on the 30th. She

had strep and was put on an antibiotic. The limping was almost

unnoticeable, but still present. We went back to the Dr. and they asked

a lot of questions and even talked about JRA but ruled it out. Referred

us to an Ortho. We went to the Ortho right before Thanksgiving and he

diagnosed her with Transient Synovitis and said it would go away on it's

own soon. It didn't...we went back a few times...X-rays....he had no

idea what was wrong with her. Kept saying wait and see...it should pass.

In the beginning of January She woke up one morning and could not walk.

I called the Ortho and demanded something be done. He scheduled a bone

scan for the next day at Medical University of South Carolina. She had

the bone scan and all they could say was that it was something in her

left foot. The Ortho put her in a " boot " because he thought it could be

a fracture or sprain. She was in the boot for 3 weeks and we went in for

a follow up. He declared her healed and told us to take the boot off and

let her muscles work again. after 2 1/2 weeks of her still limping I

called MUSC to find another Ortho. We got an appointment for the next

day and within 10 minutes the Pediatric Ortho declared JRA and made the

appointment with the Ped Rheumy.

We had that appointment on Tuesday. She's got an appointment next

Wednesday for injections in her knee and both ankles. She was started on

Methotrexate...an extremely small dose.... .3 ml per week. We got that

today, and will start it tomorrow. She takes Ibuprofen 3 times a day

now. She has her first eye appointment March 28th.

I think that's everything. I'm glad to have found this group and hope to

learn alot.

I do have a question though. The Methotrexate says injectible..but the

Dr. said she can take it orally and we can mix it with anything, like

yogurt or juice. The directions say take orally with water, but the drug

facts say inject it. So I'm confused. Any help would be greatly

appreciated.

Thanks,

Cheri