Hello to everyone

[Guest guest]

Hello Botamina and welcome to the list:-) yes we have taken Doxycycline and

some of us are on Monocycline. You have found a good spot to learn how to

improve your health statas. I usedto not be aboe to hardly walk. With the

help of the antibiotics I was able to get around again , to to college and

earn a degreee. I a small bit I am off to a protest rallly march over the

bombings in Yugoslavia. Life is good Take the antibiotics. :-)

[Guest guest]

Lynn. I don't see a problem with you posting. What kind of liver problem do you have? My daughter was reading VC s for a while but she has stopped. I like romance novels myself, but haven't found the time to read lately. Take care. Ann CT [ ] hello to everyone Good morning,everyone. How is everyone feeling this morning? I hope I don't make a nusance of myself by posting in here, since I don't have AIH at this time.(hope I never do) I do have a liver problem and welcome anything I can read or hear from you all, as a group, or individually. I am home alone during the day, and the highlight of my day is reading the posts and just gives me some interaction and insight. I tend to worry all the time about myself. I feel very sad since learning about my problem, as though this is not really me. Find myself wishing to go back to before I knew about my liver.I always worked out of the home and worked long and fast paced hours. Now, the time just drags.. Bert, hope you are feeling better. ,or at least as well as you were yesterday. You asked me what book I was reading. I like VC s. I like to read mystery/romance novels. Well, everyone take care and stay warm, you who are in the cold states. It has turned cold again here this morning.But , as they say here, if you don't like the weather now, just wait and it will change. lol So true, and that makes for a lot of colds, flu and sinus trouble. I have had bad sinus trouble for weeks. Enjoy your Weekend!! Lyn (Ark)

[Guest guest]

-

Welcome back. That's great news about .

Diane (, 3, pauci)

[Guest guest]

Yay ! May Arthur stay away forever!!!

xoxo, Ellie and Riley 5 poly

[Guest guest]

it tis however you;ll be fine,,,tell them you need sedation..anything you;l be fine

[Guest guest]

Hi ,

I have both the spondyloarthropathy and Polyarticular Juvenile Rheumatoid

Arthritis. Prednisone is a scary drug, but the reality is that doctors know

the dangers and they put them on the lowest doses for the least amount of

time. I hope everything works out for you. And welcome to the group.

(poly JRA and Spondy, 19)

[Guest guest]

Welcome . Yes, that word is one we come to know how to spell and say

rather quickly. I know when the receptionist is registering for

his blood work, they all look at the word like " what? " and you have to

explain. We've been there enough now that some know it themselves now. I

am glad you are starting a support group - that is so needed. I hope it

goes well for you. There are a few of us here on the list with kids with

spondy - so there is info here. Georgina is great about finding medical

info and posting it. That really helps. My son has problems with his

neck too on occasion. His big spots are lower back, along his spine and

pelvic rim, his achilles tendon and tendons in his feet, sometimes his

hands. Now we are worried about the possibility of Crohn's but he has

not wanted to go for the tests. We are discussing this. I hope things go

well for Tyler. The FACES group has some nice " kids get arthritis too "

tshirts. Perhaps that will give you some inspiration. Welcome again and

let us know how Tyler is doing, Michele (17,pauci & spondy)

hello to everyone

Hello to everyone,

I am a new member to your list. My husband and I are from

central Pa. We have a 4 1/2 year old son, Tyler, who was diagonosed

in Jan. with spondyloarthropathy. I learned how to pronounce that

word real fast. I am waitind for a more specific diagnosis from that

group of arthritis. We take Tyler to Children's Hospital in

Pittsburgh Pa. There he sees a ped. rheumy once a month. He currently

takes aweekly inj. of methotrexate {5cc}. Although his arthritis is

still active{with swelling currently in his toes,knees,right elbow

and his biggest monster, his neck} he still goes on. I sometimes

wonder if he has just adapted to living with pain. I know a lot of

these kids do. His eyes have been checked and thank goodness they are

okay. He used to take naprosyn twice a day but I felt as though it

was not working and his appetite was terrible. I made some diet

changes and his metho. was increased and now he seems to do well

without any thing for pain. On his bad days I still give him naprosyn i

don't know if that is something that needs to build up in the body

to work well or if it can just be taken as needed. He took it for 9

weeks straight without it seeming to working. His rheumy gave us a

script for prednisone but it scares me. I haven't filled it yet. Some

days we are almost pushed over the edge and want to use it but then

he will wake the next day and feel better. Iam currently forming a

support group along with another mom in my area who is also a member

of your list. The Arthritis Foundation is sponsoring us. We have

scraped up about 8 families from a wide area. Iam so excited for my

son to meet these other children. If anyone has any ideas for our

group please let me know. I am trying to get t-shirts made for the

kids with the arthritis logo " kids get arthrits too " with donations

from local businesses. Any ideas for that let me know also. I am so

happy to see that there really are other people out there going

through the same thing and talking about it. Iam am making it my

personal mission to do what I can to spread the word. I hope to hear

from some of you soon.

Frye

Tyler spondyloarthropathy 4

[Guest guest]

Welcome to and Tyler!

I have a 15 year old diagnosed with spondy, at age 12. He is on

methotrexate, azulfidine and voltaren. He has had bilateral hip

effusions, and problems with his knees, ankles, hips and spine. He also

has associated kidney and lung issues. We are kicking around the idea of

one of the newer biologicals but he is in a holding pattern till August,

for now, due to a positive PPD (TB screening test) and we have to wait

till he is done with preventative INH therapy.

MICHELLE: They also wanted to check Rob for Crohn's when we first

switched to Cincinnati Children's, and they did an upper GI with small

bowel follow-through. It just involved drinking some of that lovely

chalky stuff and a series of xrays over a few hours. I don't know if they

could do that test for if he would agree to it, but it was a lot

less invasive than a colonoscopy....

and Rob 15 Spondy

On Mon, 10 May 2004 10:54:10 -0500 " Tepper, Michele "

<MTepper@...> writes:

Welcome . Yes, that word is one we come to know how to spell and say

rather quickly. I know when the receptionist is registering for

his blood work, they all look at the word like " what? " and you have to

explain. We've been there enough now that some know it themselves now. I

am glad you are starting a support group - that is so needed. I hope it

goes well for you. There are a few of us here on the list with kids with

spondy - so there is info here. Georgina is great about finding medical

info and posting it. That really helps. My son has problems with his

neck too on occasion. His big spots are lower back, along his spine and

pelvic rim, his achilles tendon and tendons in his feet, sometimes his

hands. Now we are worried about the possibility of Crohn's but he has

not wanted to go for the tests. We are discussing this. I hope things go

well for Tyler. The FACES group has some nice " kids get arthritis too "

tshirts. Perhaps that will give you some inspiration. Welcome again and

let us know how Tyler is doing, Michele (17,pauci & spondy)

hello to everyone

Hello to everyone,

I am a new member to your list. My husband and I are from

central Pa. We have a 4 1/2 year old son, Tyler, who was diagonosed

in Jan. with spondyloarthropathy. I learned how to pronounce that

word real fast. I am waitind for a more specific diagnosis from that

group of arthritis. We take Tyler to Children's Hospital in

Pittsburgh Pa. There he sees a ped. rheumy once a month. He currently

takes aweekly inj. of methotrexate {5cc}. Although his arthritis is

still active{with swelling currently in his toes,knees,right elbow

and his biggest monster, his neck} he still goes on. I sometimes

wonder if he has just adapted to living with pain. I know a lot of

these kids do. His eyes have been checked and thank goodness they are

okay. He used to take naprosyn twice a day but I felt as though it

was not working and his appetite was terrible. I made some diet

changes and his metho. was increased and now he seems to do well

without any thing for pain. On his bad days I still give him naprosyn i

don't know if that is something that needs to build up in the body

to work well or if it can just be taken as needed. He took it for 9

weeks straight without it seeming to working. His rheumy gave us a

script for prednisone but it scares me. I haven't filled it yet. Some

days we are almost pushed over the edge and want to use it but then

he will wake the next day and feel better. Iam currently forming a

support group along with another mom in my area who is also a member

of your list. The Arthritis Foundation is sponsoring us. We have

scraped up about 8 families from a wide area. Iam so excited for my

son to meet these other children. If anyone has any ideas for our

group please let me know. I am trying to get t-shirts made for the

kids with the arthritis logo " kids get arthrits too " with donations

from local businesses. Any ideas for that let me know also. I am so

happy to see that there really are other people out there going

through the same thing and talking about it. Iam am making it my

personal mission to do what I can to spread the word. I hope to hear

from some of you soon.

Frye

Tyler spondyloarthropathy 4

[Guest guest]

Hi and welcome! sorry to hear about young Tyler and a site you might

want to ceck is the Sponylitis Assoc.

http://www.spondylitis.org/ I belong to a group here in Louisville

called FACES and they are selling T-shirts!

http://hometown.aol.com/faces1999/myhomepage/index.html

The is a wonderful group of people dealing with jra in ther and

their childrens life's.

I have been living with it now for 36 years since the age of 13, and I

too have A S.

There are some fund raising events going on in the FACES group as well,

Road block, car wash, and of course Arthritis walk. I amstill very new

to this all and only fround the just 3 short years ago, but have

found it to be a very compassionate group of individuals. I also belng

to an e-group of adults who have been living with

A S as well, http://www.spondyville.com

it is also a group.

I wish you all the best!

Rusty

[Guest guest]

. Welcome to the group. I am sure you will learn quickly to rely and

sometimes even depend on this group for support and advice. This group is

filled with so many wonderful knowledgeable parents!! Hearing about yet

another JRA kid breaks my heart. It sounds like little Tyler has already

been through the ringer with this disease! We also tried Naprosyn on our

daughter. Unfortunately, like most NSAIDS, it take 4-6 months to work and we

just didn't have that kind of time so we switched to MTX, plus our daughter

has a very sensitive liver and could not handle it. I wouldn't recommend

giving it intermittently since it does need time to build up. If the pain is

severe speak with your rheumy about Motrin or Advil. Caroline is also on

Prednisone. She was on 30 mg/day for about 2 months and we have now tapered

her down to 15 mg/day. It is scary, but it truly is the miracle quick fix

drug. We noticed a change within the week. Fortunately, the doctors know the

risks associated with Pred and they do work to get your child off of it as

soon as possible. Side effects run the gamut, but most common is increased

appetite, weight gain, stomach aches... Caroline has gained 2 pounds in the

last month and has the puffy " pred " cheeks. But, she can walk again and that

is huge! Hope this helps and once again - welcome

Alia and Caroline, age 2, poly and uveitis

hello to everyone

Hello to everyone,

I am a new member to your list. My husband and I are from

central Pa. We have a 4 1/2 year old son, Tyler, who was diagonosed

in Jan. with spondyloarthropathy. I learned how to pronounce that

word real fast. I am waitind for a more specific diagnosis from that

group of arthritis. We take Tyler to Children's Hospital in

Pittsburgh Pa. There he sees a ped. rheumy once a month. He currently

takes aweekly inj. of methotrexate {5cc}. Although his arthritis is

still active{with swelling currently in his toes,knees,right elbow

and his biggest monster, his neck} he still goes on. I sometimes

wonder if he has just adapted to living with pain. I know a lot of

these kids do. His eyes have been checked and thank goodness they are

okay. He used to take naprosyn twice a day but I felt as though it

was not working and his appetite was terrible. I made some diet

changes and his metho. was increased and now he seems to do well

without any thing for pain. On his bad days I still give him naprosyn

i don't know if that is something that needs to build up in the body

to work well or if it can just be taken as needed. He took it for 9

weeks straight without it seeming to working. His rheumy gave us a

script for prednisone but it scares me. I haven't filled it yet. Some

days we are almost pushed over the edge and want to use it but then

he will wake the next day and feel better. Iam currently forming a

support group along with another mom in my area who is also a member

of your list. The Arthritis Foundation is sponsoring us. We have

scraped up about 8 families from a wide area. Iam so excited for my

son to meet these other children. If anyone has any ideas for our

group please let me know. I am trying to get t-shirts made for the

kids with the arthritis logo " kids get arthrits too " with donations

from local businesses. Any ideas for that let me know also. I am so

happy to see that there really are other people out there going

through the same thing and talking about it. Iam am making it my

personal mission to do what I can to spread the word. I hope to hear

from some of you soon.

Frye

Tyler spondyloarthropathy 4

[Guest guest]

,

Welcome to the . You'll find it a wonderful place.

I too just started a support group in my area. We live in Boise,

ID. We meet about every 6 weeks, nothing formal, and we have the

kids playing while the adults talk. We don't do a formal agenda.

Our rheumy has offered to speak at a meeting if we want. We made up

a tri-fold color flyer. The AF did a one-time mailing to their

database for us, our rheumy did a mailing to his ped. patients,

we've gotten the flyers into school nurses. I put our meeting dates

in the free calendar section of some local papers and magazines.

Stacia and Hunter,8,systemic,iritis

[Guest guest]

Hi Beth. Sorry you're not feeling well. I know it's hard to type when

your hands and wrists hurt.

I hope you feel better.

a

On Aug 16, 2005, at 4:30 PM, Beth wrote:

> Sorry that I have not been on lately. I have not been

> doing very well, my hands and wrists have really been

> hurting and sore.

> Welcome to all the new people. You will learn alot of

> good info from the people here. I hope everyone else

> is feeling a little better.

> Beth(AR) 

>

>

>            

> ____________________________________________________

> Start your day with - make it your home page

> http://www./r/hs

>

>

>

>

[Guest guest]

Hi Beth. Sorry you're not feeling well. I know it's hard to type when

your hands and wrists hurt.

I hope you feel better.

a

On Aug 16, 2005, at 4:30 PM, Beth wrote:

> Sorry that I have not been on lately. I have not been

> doing very well, my hands and wrists have really been

> hurting and sore.

> Welcome to all the new people. You will learn alot of

> good info from the people here. I hope everyone else

> is feeling a little better.

> Beth(AR) 

>

>

>            

> ____________________________________________________

> Start your day with - make it your home page

> http://www./r/hs

>

>

>

>

[Guest guest]

In a message dated 8/16/2005 11:49:58 P.M. Eastern Daylight Time,

writes:

Sorry that I have not been on lately. I have not been

doing very well, my hands and wrists have really been

hurting and sore.

Welcome to all the new people. You will learn alot of

good info from the people here. I hope everyone else

is feeling a little better.

Beth,

Me too!!! I feel your pain, girl! My wrists and hands have been behaving

very badly. I am trying to give them as much gentle loving care as possible

so that they can shape up and get on with it.

I just wanted to acknowledge you for taking care of YOU and resting them!

People on this list are just so darn smart, aren't they? :-) Continue to take

good care, everyone!

Love and Prayers,

Beth

[Guest guest]

In a message dated 8/16/2005 11:49:58 P.M. Eastern Daylight Time,

writes:

Sorry that I have not been on lately. I have not been

doing very well, my hands and wrists have really been

hurting and sore.

Welcome to all the new people. You will learn alot of

good info from the people here. I hope everyone else

is feeling a little better.

Beth,

Me too!!! I feel your pain, girl! My wrists and hands have been behaving

very badly. I am trying to give them as much gentle loving care as possible

so that they can shape up and get on with it.

I just wanted to acknowledge you for taking care of YOU and resting them!

People on this list are just so darn smart, aren't they? :-) Continue to take

good care, everyone!

Love and Prayers,

Beth

[Guest guest]

Beth,

I am sorry that your having so much problem with your hand and wrists.

I will keep you in my prayers, T

--- In , Beth <mightybeth2001@y...>

wrote:

> Sorry that I have not been on lately. I have not been

> doing very well, my hands and wrists have really been

> hurting and sore.

> Welcome to all the new people. You will learn alot of

> good info from the people here. I hope everyone else

> is feeling a little better.

> Beth(AR)

>

>

>

> ____________________________________________________

> Start your day with - make it your home page

> http://www./r/hs

[Guest guest]

Beth,

I am sorry that your having so much problem with your hand and wrists.

I will keep you in my prayers, T

> Sorry that I have not been on lately. I have not been

> doing very well, my hands and wrists have really been

> hurting and sore.

> Welcome to all the new people. You will learn alot of

> good info from the people here. I hope everyone else

> is feeling a little better.

> Beth(AR)

>

>

>

> ____________________________________________________

> Start your day with - make it your home page

> http://www./r/hs

[Guest guest]

Hey Larry! Take care of yourself!!

> Hello to all of you.

> I have resigned as a moderator for this group.

> It was a privilege and an honor to serve all of you as a moderator.

> While I was a moderator I always tried to do my best to serve the

group.

> I did make mistakes,as we all do.

> If I did anything to offend any of you please know that it was never

my intention to do so.

> I hope to be able to remain as a member of the group and to be able

to have contact with as many of you as would like to have contact with

me.

> MAY YOU ALL HAVE A BETTER DAY TODAY THAN YESTERDAY AND NOT AS GOOD A

DAY AS TOMORROW.

> TAKE AS BEST CARE AS YOU CAN AND BE SAFE.

> Larry

[Guest guest]

Hey Larry! Take care of yourself!!

> Hello to all of you.

> I have resigned as a moderator for this group.

> It was a privilege and an honor to serve all of you as a moderator.

> While I was a moderator I always tried to do my best to serve the

group.

> I did make mistakes,as we all do.

> If I did anything to offend any of you please know that it was never

my intention to do so.

> I hope to be able to remain as a member of the group and to be able

to have contact with as many of you as would like to have contact with

me.

> MAY YOU ALL HAVE A BETTER DAY TODAY THAN YESTERDAY AND NOT AS GOOD A

DAY AS TOMORROW.

> TAKE AS BEST CARE AS YOU CAN AND BE SAFE.

> Larry

[Guest guest]

Hey Larry! Take care of yourself!!

> Hello to all of you.

> I have resigned as a moderator for this group.

> It was a privilege and an honor to serve all of you as a moderator.

> While I was a moderator I always tried to do my best to serve the

group.

> I did make mistakes,as we all do.

> If I did anything to offend any of you please know that it was never

my intention to do so.

> I hope to be able to remain as a member of the group and to be able

to have contact with as many of you as would like to have contact with

me.

> MAY YOU ALL HAVE A BETTER DAY TODAY THAN YESTERDAY AND NOT AS GOOD A

DAY AS TOMORROW.

> TAKE AS BEST CARE AS YOU CAN AND BE SAFE.

> Larry

[Guest guest]

Hello ladies,

I have been away from my computer for the last six weeks or so, touching base occasionally to read emails. I have been fighting our local elections and it has been an extremely stressful time, most of you would not have known that I was in local politics and a councillor for our borough. Unfortunately I did not win the election on the 4th of May due to the large vote for the British National Party, these are a political party that believes white English people should have more rights than any other colour or nationality, needless to say I am disgusted that some of my residents would choose to vote for these morons. I myself would be classed as a foreigner in my own country because I have Irish grandparents, and Jewish great grandparents.

Anyway that is all water under the bridge, I am officially unemployed so will be around on the site more. My osteopath has said he is pleased I am no longer working as he feels alot of my problems are stress related, and my health should now improve, I hope this is the case as its costing me a small fortune in osteopathic bills to keep my neck in good shape.

I have missed you all and hope you are all doing ok.

I seriously hope my dizziness will improve, its so disconcerting!

Love to you all

Sue

[Guest guest]

Hi Sue! I have thought about you so often, so I am glad to see you posting again. I am sorry you were not successful in your bid for political office, but as you mentioned, it is probably better for your health that you are not working. Whatever did you do for your tooth? Were you able to get it fixed? I am in a similar boat now, having lost 2 permanent molars on the left side due to failed root canals. The area is still healing now, and I am trying to stay off the pain pills. Great to hear from you Sue! I pray you also get relief from that terrible dizziness. I am sure it is very difficult to live with. Hugs, Pattygibbense@... wrote: Hello ladies, I have been away from my computer for the last six weeks or so, touching base occasionally to read emails. I have been fighting our local elections and it has been an extremely stressful time, most of you would not have known that I was in local politics and a councillor for our borough. Unfortunately I did not win the election on the 4th of May due to the large vote for the British National Party, these are a political party that believes white English people should have more rights than any other colour or nationality, needless to say I am disgusted that some of my residents would choose to vote for these morons. I myself would be classed as a foreigner in my own country because I have Irish grandparents, and Jewish great grandparents. Anyway that is all water under the bridge, I am officially

unemployed so will be around on the site more. My osteopath has said he is pleased I am no longer working as he feels alot of my problems are stress related, and my health should now improve, I hope this is the case as its costing me a small fortune in osteopathic bills to keep my neck in good shape. I have missed you all and hope you are all doing ok. I seriously hope my dizziness will improve, its so disconcerting! Love to you all Sue

Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Messenger with Voice.

[Guest guest]

Sue,

A really good bridge should not cause you the

kind of problems that root canals can cause.

I am sorry Patty had to go through this crap. At

least she caught it early, which bodes well for

her health. I have a number of old root canals

and am losing those teeth one by one. It is not

a pretty picture. I am not sure just what I can do about mine.

I hope your dizziness improves very soon.

Lynda

At 03:08 AM 5/7/2006, you wrote:

>Hello Patty lovely to hear from you.

>Sorry to hear about your teeth, its such a

>horrible thing to go through I feel sorry for you.

>I have not done anything with my tooth I am

>ashamed to say, But have got really clever at

>talking with my lip down so its not noticeable,

>I also never smile with an open mouth. I really

>need to get it sorted but I am not sure what to

>do, I have an awful fear that putting in a false

>tooth will cause me no end of problems.

>The Dizziness is still a major problem, I wake

>with it every morning, my osteopath has said its

>related to my neck and after having my neck

>clicked it seems to improve for a day or so but

>it doesn't last. I have been seeing the

>osteopath twice a week and its costing me £58.00

>per week so I hope to see some improvement since stopping work.

>I hope your teeth soon settle down

>Good to hear from you.

>

>Love and blessings

>

>Sue

>

>

>Opinions expressed are NOT meant to take the

>place of advice given by licensed health care

>professionals. Consult your physician or

>licensed health care professional before commencing any medical treatment.

>

> " Do not let either the medical authorities or

>the politicians mislead you. Find out what the

>facts are, and make your own decisions about how

>to live a happy life and how to work for a

>better world. " - Linus ing, two-time Nobel

>Prize Winner (1954, Chemistry; 1963, Peace)

>

>See our photos website! Enter " implants " for access at this link:

><http://.shutterfly.com/action/>http://.shutterfly.co\

m/action/

>

>

[Guest guest]

---Hi, Sue...good to hear from you again. Sounds like it would be

good for you to have a break. I have a bad neck, partially due to 4

accidents and also, the implants - which I'm happy to say are being

removed July 26!! Wooo HOoooooo!!!

Take care,

Love 'n Peace,

Sunny

In , gibbense@... wrote:

>

> Hello ladies,

>

> I have been away from my computer for the last six weeks or so,

touching

> base occasionally to read emails. I have been fighting our local

elections and

> it has been an extremely stressful time, most of you would not have

known that

> I was in local politics and a councillor for our borough.

Unfortunately I did

> not win the election on the 4th of May due to the large vote for

the British

> National Party, these are a political party that believes white

English

> people should have more rights than any other colour or

nationality, needless to

> say I am disgusted that some of my residents would choose to vote

for these

> morons. I myself would be classed as a foreigner in my own country

because I

> have Irish grandparents, and Jewish great grandparents.

> Anyway that is all water under the bridge, I am officially

unemployed so

> will be around on the site more. My osteopath has said he is

pleased I am no

> longer working as he feels alot of my problems are stress related,

and my health

> should now improve, I hope this is the case as its costing me a

small fortune

> in osteopathic bills to keep my neck in good shape.

> I have missed you all and hope you are all doing ok.

> I seriously hope my dizziness will improve, its so disconcerting!

>

> Love to you all

>

> Sue

>