New Member

Posted November 13, 2006 · November 13, 2006

i don't know but mobic is a really good medication . Ive been on it for a

few yers along with enbrel .. But the time I was on celebrex wasn;t so good .

Celebrex didn't help me much. I f you do get mobic and your insurance will pay

for it don;t get the generic form of mobic because the generic doesn't work

as good . ask the doctor to write 'no exchanges 'on prescription ofr hey will

give you the generic form of mobic. cathy from ma.

Posted November 13, 2006 · November 13, 2006

, welcome! I'm only going to tackle one item in your post and

leave other things for other people. What do I do for energy? The

absolutely best thing is - REST!

I know it's really hard to get rest with a 2 year old to care for, not

to mention grad school, but that is simply the most important thing

you can do for yourself in dealing with PA.

You will find that you need more - a lot more - sleep when you are in

a flare. Even when you are not flaring, you must be careful to get

adequate rest to avoid starting a flare.

If you can't sleep, at least sit and get off your feet as much as

possible. I'm using a stool in the kitchen while I cook. And a stool

in the garden. And take 5-minute cap naps whenever possible. Even

sitting up, just put your head back, close your eyes, and either sleep

or practice some relaxation techniques (like concentrating on relaxing

each part of your body, starting with your toes). Those little 5-

minute sessions a few times a day can work wonders.

Whenever I'm a passenger in a car someone else is driving, I lay my

head back and fall asleep. My husband says I can turn it off

instantly and wake up in 5-10 minutes feeling so much refreshed.

take care of yourself,

sherry z

>

What do you do for energy?

>

> in Indy

>

Posted November 13, 2006 · November 13, 2006

In a message dated 09/11/2006 19:18:44 GMT Standard Time,

viking_warlock@... writes:

So what parts of me

are affected, head, shoulders knees and toes.....knees and toes..

LOL.

Hi Ian,

So, does that mean that your eyes and ears and mouth and nose are ok? lol

Posted November 13, 2006 · November 13, 2006

In a message dated 10/11/2006 20:08:05 GMT Standard Time, cateyb@...

writes:

On Monday, my 5 year old daughter was diagnosed with PA. I don't know what to

expect for her. I'm hoping I can learn some things through this group.

Hi Catey,

I'm really sorry to here this, especially with your daughter being so young.

You have come to the right place if you want to learn about the disease. There

is also a lot of stuff around on the internet regarding PA so hopefully

between it all you will be able to educate yourself on it.

Welcome to the group Catey. I hope we can be of some help to you.

Take care,

Posted November 13, 2006 · November 13, 2006

In a message dated 11/11/2006 16:46:58 GMT Standard Time,

wendy.deboard@... writes:

Hello all. I've been lurking for a few days and decided it was time to

reveal myself. (Don't worry, it's not as exciting as it sounds! )

Hi ,

Welcome to the group. I'm glad you decided to say hello. I'm sorry this

disease has hit you but it is good that you found us.

I am . I live in Scotland. I'm 49yrs old, had P since I was 23 and PA

since the age of 30. We are both on the same drugs. I hope it works really well

for you. I have made a slow but steady improvement since starting the Enbrel.

Take care,

Posted November 14, 2006 · November 14, 2006

I don't want to be argumentative, but generic Mobic worked exactly the same for

my son as did the namebrand. It's an effective drug, but it tore his stomach

up. He had to go off it for 4 weeks and take Prevacid to heal his stomach. The

doc said Mobic is frequently hard on the stomach, so be aware of that.

PotterHarryMom

Mairyn 8

Connor 12

Cameron 14

" It is our choices, Harry, that show what we truly are, far more than our

abilities. " Albus Dumbledore

From: Harry Potter and the Chamber of Secrets

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

Want to start your own business? Learn how on Small Business.

Posted November 14, 2006 · November 14, 2006

This is a wonderful group Catey... Welcome... Shaun and Barb...

Posted November 14, 2006 · November 14, 2006

Thanks . I'm sorry I had to meet all you wonderful people the way I did,

but I am glad I found this.

I'm still in the early stages of this disease so fortunately I don't have much

damage yet...just a lot of pain. How long were you on the meds before you

started to tell a difference? I'm less worried about staying on Enbrel for the

long term but more worried about the MTX. Did your PA progress very rapidly? (I

have so-o-o-o many questions right now!!)

Thanks,

Posted November 15, 2006 · November 15, 2006

In a message dated 16/11/2006 00:12:30 GMT Standard Time,

wendy.deboard@... writes:

I'm still in the early stages of this disease so fortunately I don't have

much damage yet...just a lot of pain. How long were you on the meds before you

started to tell a difference? I'm less worried about staying on Enbrel for the

long term but more worried about the MTX. Did your PA progress very rapidly? (I

have so-o-o-o many questions right now!!)

Hi ,

I'm not sure how to answer your 'Did your PA progress very rapidly' question.

It progressed in a quick, slow, quick, quick, slow sort of manner. lol

The first sign of PA came when I was 30 years old after a cross country race

I was running.

I had been training hard and running well. I had also been running a lot more

races than usual and doing more on the road so at the end of this race I had

a bit of a pain in my left heel.

Over the next few months I was going for all sorts of physiotherapy to try

and get rid of this 'injury' but nothing worked. It took over a year of physio

and going to specialists in various hospitals before they sussed that it was

arthritis. (At one point they thought it was Gout as the toes of that foot were

now really sore) It was sometime after the diagnosis that the second foot went

the same way. After a couple of years the started me on Myocrisin (Gold)

injections. I know gold has had a bit of a slagging within the group in the past

but it worked well for me for 10 years. I felt a million

dollars!.................................get

it?..................Gold?..................million

dollars?.......................sorry............I'll get my coat. lol

Eventually

though, it stopped being as effective and I went through two or three years

of going downhill. I went to Ireland to work during this period (Year 2000)

and managed to get by ok for around 18 months. During the years after the gold

stopped working I started being affected in a lot more places. Neck, Lower

back, wrists and fingers but for those first 18 months in Ireland I seemed to be

holding at that level. The following 18 months were bad though. It was during

that period that my right wrist more or less seized and I had a pretty rapid

destruction of the joints of a couple of fingers. My Rheumy started me on MTX, I

guess around the middle of 2002 but it didn't do anything for it. He then

added Ciclosporin but all that did was make me sick so at the beginning of 2005

he dropped the Ciclosporin and started me on Enbrel. Since then, although I'm

not brilliant. I am much better that I was so I can't

complain...........................well I can and I do but I shouldn't. lol By

the way the Enbrel and

MTX mix started working slowly but surely after three or four weeks

A couple of days back I was looking through a book I used to record my times

during races. You can actually see how the PA affected me from the time I felt

the first pain in my heel to the progression as I tried to keep running

through the problem up until the last competative race before I finally admitted

that I couldn't do it any more. I have put the times of one of my team mates who

was an Irish international so it will let you see the difference in how well

I was going when it started against how slow I was at the end.

The first race was:

26th November 1988 ---- Renfrewshire C/C Championships - Distance: 6

miles

9th - Cammy Spence - Time:

35min 43sec

11th- Me -

35min 53sec

My last race:

21st January 1989 --- Western District C/C Championships -

Distance 7.5miles

12th Cammy Spence -

Time: 43min 55sec

104th Me -

50min 45sec

Lol It tells its own story doesn't it. From 10 seconds behind Cammy to 6

minutes and 50 seconds (which would be over a mile) behind in two months! lol

Bet your sorry you asked now! lol

Hopefully with you being on Enbrel before you have any destruction of joints

will mean that it won't get that bad for you. It would be great if that was

the case.

Good luck,

Posted November 16, 2006 · November 16, 2006

Wow ...what a story! No, I'm not sorry I asked. I like to know the stories

behind the people! Thanks for your response.

Take care,

martincoyless@... wrote:

Hi ,

I'm not sure how to answer your 'Did your PA progress very rapidly' question.

It progressed in a quick, slow, quick, quick, slow sort of manner. lol

Posted November 25, 2006 · November 25, 2006

Welcome ... I suffer from PA and have for years... Hope you enjoy the

group...

Love and Peace Always,

Shaun and Barb

Posted November 29, 2006 · November 29, 2006

In a message dated 23/11/2006 12:00:27 GMT Standard Time,

kristibryan@... writes:

Hi I am new to this group. I have had psoriasis for over 10 years,

diagnosed with PA about 2 years ago. I have been taking Enbrel

injections since then. I am just looking for others who also suffer to

learn from and compare with.

Hi Kristi? is it?

Welcome to the group. Well done! You just found 2900+ of us. lol I'm glad you

found us but sorry you had to. Is the Enbrel working ok for you? I hope so. I

am on it too, along with MTX

Hope to hear from you again soon.

Take care,

Posted December 2, 2006 · December 2, 2006

>

> >

Hello- I am going to make this short, but I have been fourtunate to find this

group at the

sugguestion of my doctor. I have had PA for over ten years. I am not the

typical PA

patient as I am in my early 30's. I have just had a bad flare up this past

summer, but

finally it is getting better through a new medical and excercise regimen.

Before I continue,

I am taking humira once a week, cyclosporine, arava and prednisone. Hopefully,

I will be

able to add to this group and receive critical help.

Again, thanks in advance for the help I will receive in thr future,

Greg(peacefrog)

Posted December 2, 2006 · December 2, 2006

Welcome aboard, Peacefrog.

This is a large group of people, and someone here will be able to

relate to just about anything you throw out. It sounds like your doctor

is working with you to be aggressive with this disease - that seems to

be the best way for most people who are willing to put forth effort to

be as healthy as possible. Enjoy as much of life as your body permits.

And like, peace, dude. Keep smiling, it helps. Brent

Posted December 2, 2006 · December 2, 2006

Greg, welcome to our happy (if spotty and achy) family! Tell us more

about your exercise regimen. Before my major flare this spring/summer,

I was working out 5-6 days a week, combination of weights and

treadmill. Between the ankle and toe joint pain and the tendonitis in

both elbows, I've been stalled the last 8 months. My rheumy wants me

to do water aerobics, and I will start that soon, but I'm so bummed

about not being able to do what I used to do. I'd love to hear about

your experience. Is there hope I can someday get back to the routine I

liked?

best regards,

sherry z

>

> finally it is getting better through a new medical and excercise

regimen. Before I continue,

Posted December 3, 2006 · December 3, 2006

Sherry, thank you for your kind response, this group

has already given me more insight than I can imagine.

I am just getting over a bad flare up and just

re-started my excercise routine after being unable to

do it for the last 9-12 months. I heard water

aquatics is best excercise for our condition. I would

called your local arth foundation and see if they have

a low cost program. Where I live (it is cold here), a

private gym could run up to $ 100 per month.

Right now, I am doing low weight streching focused on

my legs where the arthritis is worst and I am hoping

to include walking and evenutally weight training.

Anyway, hope you feel better soon,

Greg

[Editor's Note: Greg, many YMCAs have aquatics programs that cost between

$40-$50 for 8 weeks -10 weeks. Some offer aquatics programs for even less for

people with arthritis. Check out a Y if there is one near you. Another

low-cost option would be to check with hotels and motels near you that have

indoor pools. In many cases, they have " friends and neighbors " rates whereby

you can use their pool at a nominal cost (in some cases for free if you tell

them about your medical condition). It's worth making a few phone calls - the

worst that can happen is that the motels near you say no. Kathy F.]

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

> Greg, welcome to our happy (if spotty and achy)

> family! Tell us more

> about your exercise regimen. Before my major flare

> this spring/summer,

> I was working out 5-6 days a week, combination of

> weights and

> treadmill. Between the ankle and toe joint pain and

> the tendonitis in

> both elbows, I've been stalled the last 8 months.

> My rheumy wants me

> to do water aerobics, and I will start that soon,

> but I'm so bummed

> about not being able to do what I used to do. I'd

> love to hear about

> your experience. Is there hope I can someday get

> back to the routine I

> liked?

>

> best regards,

> sherry z

>

Posted December 4, 2006 · December 4, 2006

Greg, thanks for the info. I'm also currently just doing a lot of

stretching exercises, mostly legs as well. I was able to walk (stroll,

really) about 1 mile over the holiday, with no ill effect, so I'm

hoping I can start some low-key walking maybe 3 times a week to start.

best to you,

sherry z

>

> Sherry, thank you for your kind response, this group

> has already given me more insight than I can imagine.

>

> Right now, I am doing low weight streching focused on

> my legs where the arthritis is worst and I am hoping

> to include walking and evenutally weight training.

Posted December 8, 2006 · December 8, 2006

In a message dated 02/12/2006 22:30:04 GMT Standard Time,

peacefrog0630@... writes:

I have had PA for over ten years. I am not the typical PA

patient as I am in my early 30's.

Hi Greg,

Welcome to the group. You will probably find that a lot of us are (or were,

lol) in our thirties and have this. I'm sorry to hear that you have had it for

most of your twenties too. I was thirty when it hit although I was 23 when the

P hit.

It's good to hear from you. Your doctor is a very wise person. lol

Take care,

Posted December 14, 2006 · December 14, 2006

When apraxia was first mentioned to me as a " working diagnosis " for my

daughter, the talking page http://www.debtsmart.net/talk/index.html

helped me to get a good idea of what to expect. There are also some

videos on Casana's site.

Kris

On Dec 14, 2006, at 9:39 AM, beth_stahmer wrote:

> I posted a few days back with no responsces. My friend has a 5 year

> old boy who has apraxia and pdd. She is having a very hard time

> dealing with everything. She keeps wondering if he will be able to

> speak complete sentences. Any help would be wonderful.

>

> Beth

>

Posted December 14, 2006 · December 14, 2006

When apraxia was first mentioned to me as a " working diagnosis " for my

daughter, the talking page http://www.debtsmart.net/talk/index.html

helped me to get a good idea of what to expect. There are also some

videos on Casana's site.

Kris

On Dec 14, 2006, at 9:39 AM, beth_stahmer wrote:

> I posted a few days back with no responsces. My friend has a 5 year

> old boy who has apraxia and pdd. She is having a very hard time

> dealing with everything. She keeps wondering if he will be able to

> speak complete sentences. Any help would be wonderful.

>

> Beth

>

Posted December 15, 2006 · December 15, 2006

I just went to the debtsmart.net website and listened to recordings

of kids that are around my son's age (3 and a half). The kids on the

website actually make different sounds. I would be thrilled if my

son could do that! He can't. He really only makes one sound. I am

more discouraged and confused than ever. Could my son be

misdiagnosed? Is there something other than apraxia that could cause

his lack of speech? Does anyone have any advice?

>

> > I posted a few days back with no responsces. My friend has a 5

year

> > old boy who has apraxia and pdd. She is having a very hard time

> > dealing with everything. She keeps wondering if he will be able

to

> > speak complete sentences. Any help would be wonderful.

> >

> > Beth

> >

>

Posted December 16, 2006 · December 16, 2006

I just went to the debtsmart.net website and listened to recordings

of kids that are around my son's age (3 and a half). The kids on the

website actually make different sounds. I would be thrilled if my

son could do that! He can't. He really only makes one sound. I am

more discouraged and confused than ever. Could my son be

misdiagnosed? Is there something other than apraxia that could cause

his lack of speech? Does anyone have any advice?

>

> > I posted a few days back with no responsces. My friend has a 5

year

> > old boy who has apraxia and pdd. She is having a very hard time

> > dealing with everything. She keeps wondering if he will be able

to

> > speak complete sentences. Any help would be wonderful.

> >

> > Beth

> >

>

Posted December 16, 2006 · December 16, 2006

I think what you describe is typical for many three year olds with

apraxia. My daughter has made all sorts of sounds all along. She just

didn't " talk " and all of her " sounds " were variations on vowels and

like 2 consonants. She is 33 months and now talking but her apraxia

isn't as severe as many of the kids you'll read about on this board.

Don't be discouraged by the talking page. I used it to listen to older

kids. I wanted to see what my child's future would sound like, etc. I

actually wish that parents who have a child that is " resolved " would

post and let us listen to their child's speech. I think it would help

many of us.

Our slp spent a lot of time just trying to get my daughter to imitate.

Once she would do that sometimes we played games in the car, at the

table, any and everywhere, etc. At first I would sing ee iii eee iii

or some other easy vowel combination and she would try to repeat me.

We did these types of drills frequently. Grace always thought we

were just playing. Her slp then moved her to adding consonants,

multiple syllables, etc etc etc as she progressed. Our therapy this

last year has focused on language skills, play skills, drills, some

tactile cueing, imitation, etc. At home we do some " drills " via

singing songs and such and we also do 2 or 3 sessions (like 10 minutes

each) with a Kaufman Kit. Each of these things on it's own helped but

together they have really assisted my daughter with moving toward

sentences, etc and addressing that motor planning piece.

Don't lose hope.

Kris

On Dec 15, 2006, at 7:39 PM, amieestrella wrote:

> I just went to the debtsmart.net website and listened to recordings

> of kids that are around my son's age (3 and a half). The kids on the

> website actually make different sounds. I would be thrilled if my

> son could do that! He can't. He really only makes one sound. I am

> more discouraged and confused than ever. Could my son be

> misdiagnosed? Is there something other than apraxia that could cause

> his lack of speech? Does anyone have any advice?

>

Posted December 16, 2006 · December 16, 2006