Re: New to the group!

[Guest guest]

Unfortunately, I'm not aware of any test or tests that can either confirm RA or rule it out. Sometimes lab work can give a strong indication of RA but is not enough to prove it. It takes an examination of the joints by a specialist (rheumatologist) to finally get a confirmed diagnosis. Some people wait a year or more to get a diagnosis confirmed. One thing that is often useful as a diagnostic aid is a person's response to Prednisone. Usually someone with an inflammatory disease such as RA will show marked improvement after a week or less on Prednisone, and if the improvement does not happen, then it is unlikely that the diagnosis is RA. Good luck and God bless.

----- Original Message -----

From: jsala

Rheumatoid Arthritis

Sent: Thursday, December 04, 2003 6:35 PM

Subject: New to the group!

Hello,I am new to the group. I went to my primary care physician complaining of knee and ankle pain and fatigue. Two visits and three phone calls later...the physician is referring me to a rheumatologist (possible RA).My question to the group:What are the screening tests that my rheumatologist will do? I am a big "chicken" when it comes to tests and my rheumatologist appointment isn't until January. That's along time for me to wait and agonize over things. So far my CBC, RA, ANA, Sed Rate, and xrays are all normal. I am waiting for the results for a C-Reactive Protien and Lyme Disease test.J Sala

[Guest guest]

Hello J... best thing right now it to relax and accept that it will be a while before you get word. like my Momma always said.. 'if i can do something about a problem, i do it.. if i can't, i'm just borrowing trouble worrying over it."

Like my Reumie told me, " got good news and bad news.. the bad news is that you tested positive for RA, but we still want to check it out to absolutely sure.. the good news is that there is medication that will help you with the pain and inflamation and hopefully keep it in check."

We did the prednesone test and it really helped so it seemed to be conclusive that RA was present. i have been on several different NSAIDS the past 4 years and am keeping fairly level.. have flares sometime.. it is slowly progressing but not at an alarming rate. I had the symtoms for a number of years before i finally referred my self to a rheumie as many other DRs kept suggesting that it was 'a nervous condition' and never ran tests for RA. I'm old so am not worrying myself to death over it.. one has to take some things in stride and make the best of it, doing what we can to to keep the body healthful to fight it, eat intelligentlyl, get enough rest, exercise as much as possible and keep busy to keep our minds free of worry. I think keeping ones mind busy, and the body limbered up as much as possible are important componants of being able to handle the situation. -----

I had to loose a bit of weight to make it better for my feet and knees (about 35 lbs overweight.) this is important.

well... i could ramble on, but don't want to bore everone with a long long ramble.. :?)

just be patient and keep cool!

love... lee h

Original Message -----

From: jsala

Rheumatoid Arthritis

Sent: Thursday, December 04, 2003 8:35 PM

Subject: New to the group!

Hello,I am new to the group. I went to my primary care physician complaining of knee and ankle pain and fatigue. Two visits and three phone calls later...the physician is referring me to a rheumatologist (possible RA).My question to the group:What are the screening tests that my rheumatologist will do? I am a big "chicken" when it comes to tests and my rheumatologist appointment isn't until January. That's along time for me to wait and agonize over things. So far my CBC, RA, ANA, Sed Rate, and xrays are all normal. I am waiting for the results for a C-Reactive Protien and Lyme Disease test.J Sala.

[Guest guest]

ooooooooooooooOh dear!! i should think, since news groups are supposed to be a place of exchange and support as well as information shared, that it would be permissable for one to kind of unload when the going gets a bit rough and one has no one who understands, to

let off a little steam and release some of the pressure.

i think that we , for the most part, wonder at times if we are using the desease as an excuse as we really don't really know what the implications are and how the next scenerio will come about... how or what or when.. and we have, through the years, been sort of brushed off as being a bit of a hypochondriac, or anxiety problems that a good dose of valium or a bit of codein would take care of.

back in 1960's DR gave me a prescription for valium telling me it was a muscle relaxant... two days on that stuff and i knew i didn't need that. it did relax me.. heheheh!!!

anyway, you sound like you have it pretty well handled and seem to have a good attitude and that helps a lot. I didn't hear one 'poor me' in your post and i respect you very much. you are so much more knowledgeable than i regarding treatments, medications, etc. i have a bit of trouble with short term memory and can't recall all the meds i've used ..... except the Raglan and after i took it for a while, i started to having symptoms like paulsey or Parkinsons and i dang well was not going to have that, so i Google searched paulsey and found that Raglan, not even sure how to spell it any more... can cause symptoms like that in some people so stopped taking it. Naprosyn 500 mg 2xday doing fairly well, not out of pain but enough to function fairly well.. here while back i decided it wasn't doing me any good so quit taking it... duh!!!!!!!.... big time flare!!!!! like you say.. forgot how to walk like the big kids do!

started taking it again and DR upped it to 550 mg Naproxen (naprosyn) .. just started on it. we shall see what we shall see! i, too, am on minimal pred.. 5 mg/dly.

i'm over 75 so guess i'm pretty lucky to be as well as i am. i do do a few herbs that i think help me.

love.. lee h

----- Original Message -----

From: Abdul Hamid Roslida

Rheumatoid Arthritis

Sent: Saturday, December 06, 2003 10:38 AM

Subject: Re: New to the group!

Well, good for u leo. i have been diagnosed as an RA since my juvenile years, and as time goes by, I ve been confirmed to be having a chronic RA. I ve tried various kinds of drugs from plaquenil, sulphasalazine etc and nothing works for me. Only prednisolone worked for me at tat time and since i ve been on steroidal medication for too long ( i m nstill on pred now tho with a very minimal dose ( 5mg/dly) . My rheumatologist has started on mtx 2 years ago and from wat he told me, he's gonna reduce the dose in my next appt. I am on COX-2 too, the mild one tho , mobic, and I found tat COX-2 inhibtors like vioxx doesnt work on inflammation of Ra exc for the time u r on the post op of some joint replacement.

well, being an RA and see how yr joints deformed by years is actually not a happy experience indeed. i have never gone thru a real teenage years becos during the time, it had flared out so many times. even my school teacher wondered how did i go thru all the exams when i have been in and out of the hospital so often. well as u said leo, i can even write abook abt the pains and agonies of being an RA. and I cant even remember how to walk like a normal person anymore. believe me, being an RA, we have to be emotionally prepared indeed.

Just rrealised this is supposed to be a newsgoup.. not a session with the shrink:)

well.. ciao

Ida

[Guest guest]

Dear , I am sorry that no one has replied to your message. I can only speak for myself but my life has been turned upside down the past few months. I am the Child Services Coordinator for the local homeless shelter for my paid full time job and Director of Care for the local animal shelter, which is a volunteer position. This time of the year is a hectic time at both sites. A little about me: I'm 26, I was diagnosed with reactive arthritis in 1999 (triggered by an eye infection and only affects 1 side of the body). My current meds are: Azulfidine EN, Prednisone, Folic Acid, Methotrexate, Ibuprofen, & Remicade. I'm dating a man that also has arthritis. I don't have any children and it is unlikely I will in the near future. (I can barely afford myself and I will be unable to stop taking my meds) It is most likely I will adopt if I choose to have kids in my life.

Also, I grew up in Queens, NY, attended college in PA, and currently live in VA about an hour west of DC.

Take care,

in VA

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~>I liked this message a lot. My heart goes out to all of you...I tried to find

>some support in this group, but no one is responding or replying. If this

>is a group for friendship and support while dealing with RA, then why doesn't

>anyone reply to someone new who needs friendship and support? I am 29

>and also an expectant mother, and I can't take any meds right now for the

>RA pain or the anxiety that comes with it....due to my baby. but if no one replies

>back I guess I'll leave the group and find one that may welcome newcomers.

>

Browse styles for all ages, from the latest looks to cozy weekend wear at MSN Shopping. And check out the beauty products!

[Guest guest]

Hello ... i don't know what happened, but i have searched both my inbox and deleted folder and this is the only post i find from you. may have been a server problem. did you get a copy of it in your inbox? this happens occasionally, why, i don't know.

any way, i am not a monitor but do welcome you to the group and am sure everyone else does, too.

i read all the posts, but don't respond to all, as usually someone who is more knowledgeable than i will already have responded.

i recon if everyone on the group sent out a big welcome or a thank you when something good came through or.. an ' i agree with you.. ' we never would be able to get through all the posts...LOL!!!

please know that whether your post is responded to or not, most of us will have read it, and know that our thoughts for you are positive and we do empathize with you.

i'm not even sure if this list is monitored! LOL... guess i need to go on line and and read the pages and find out!

also, can you repost your original post?

thanks.. lee h aka Granny lee

----- Original Message -----

From:

Rheumatoid Arthritis

Sent: Sunday, December 07, 2003 12:42 PM

Subject: Re: New to the group!

I liked this message a lot. My heart goes out to all of you...I tried to find

some support in this group, but no one is responding or replying. If this

is a group for friendship and support while dealing with RA, then why doesn't

anyone reply to someone new who needs friendship and support? I am 29

and also an expectant mother, and I can't take any meds right now for the

RA pain or the anxiety that comes with it....due to my baby. but if no one replies

back I guess I'll leave the group and find one that may welcome newcomers.

[Guest guest]

Hello !

You are very welcome in our group and I am sorry that no one replied to your original message. I am included. I too do not reply to every message and I apologize if I have offended you in any way.

I can only imagine what you must be feeling! Expecting a baby is a difficult enough ordeal in and of its self but to have RA on top of that must be so difficult!!!!! Do you have good support around you? How long have you been diagnosed? Is this your first little one? How far along are you? I know, I know.....20 questions.....I am just curious and interested in you.

I wish you the best and I do hope that you stay. There are a lot of good people here and they care. All of us have RA or some form of auto-immune disease or are a support to someone who has one.

I was diagnosed when I was 41 (I'll be 45 next month). Within 6 months of being diagnosed, I was on disability. It hit me hard! And has been very difficult to treat. I was working as a manager of a Hallmark Store but I just can not do that any longer so after 3 years of treatment, I was finally able to follow my dream and calling to become a pastor of a church. My RA is just as bad as it was, only the meds are helping a little better plus I have finally learned to cope with it better. I was just plain mad at my body for 2 years! I had my first grandchild and I couldn't even get on the floor to play with her. I was walking with a walker. Now I am having trouble with my white blood cell count - it keeps dropping and dropping and the RA is beginning to affect my lungs. I take Remicade every 8 weeks - although it only lasts for 6 weeks - my next infusion is on Friday. The RA is really roaring in my body right now! Affecting ALL my joints! I also take 25 mg of methotrexate injection every week as well as folic acid and vioxx and prednisone. I also have ulcerative colitis (another auto-immune disease) which I take asacol for.

Since my RA is really bad right now, I do empathize with you about the pain. It is horrid!!!!! And the fatigue!!!!! I am sure your doctor is monitoring you well. At least I hope he or she is. And I also hope that you have a good support around you that understands how you feel and what you are enduring (spouse, friends, family).

We are here. We are all in different stages of the disease. We care about you. Please let us know how you are doing.

Carla

----- Original Message -----

From: leo

Rheumatoid Arthritis

Sent: Monday, December 08, 2003 6:30 PM

Subject: Re: New to the group!

Hello ... i don't know what happened, but i have searched both my inbox and deleted folder and this is the only post i find from you. may have been a server problem. did you get a copy of it in your inbox? this happens occasionally, why, i don't know.

any way, i am not a monitor but do welcome you to the group and am sure everyone else does, too.

i read all the posts, but don't respond to all, as usually someone who is more knowledgeable than i will already have responded.

i recon if everyone on the group sent out a big welcome or a thank you when something good came through or.. an ' i agree with you.. ' we never would be able to get through all the posts...LOL!!!

please know that whether your post is responded to or not, most of us will have read it, and know that our thoughts for you are positive and we do empathize with you.

i'm not even sure if this list is monitored! LOL... guess i need to go on line and and read the pages and find out!

also, can you repost your original post?

thanks.. lee h aka Granny lee

----- Original Message -----

From:

Rheumatoid Arthritis

Sent: Sunday, December 07, 2003 12:42 PM

Subject: Re: New to the group!

I liked this message a lot. My heart goes out to all of you...I tried to find

some support in this group, but no one is responding or replying. If this

is a group for friendship and support while dealing with RA, then why doesn't

anyone reply to someone new who needs friendship and support? I am 29

and also an expectant mother, and I can't take any meds right now for the

RA pain or the anxiety that comes with it....due to my baby. but if no one replies

back I guess I'll leave the group and find one that may welcome newcomers.

[Guest guest]

Welcome to the group and I have no idea what happened to your earlier

post. Sometimes they take a while to show up and occasionally they seem to get

lost. Please keep trying.

I was started on Arava and Prednisone and then switched from Arava to

Methotrexate. Neither Arava nor Methotrexate worked well enough for me to get

off Prednisone so we added Remicade and slowly went up from 3 mg/kg to 6 mg/kg

which is where I am now. Then I was finally able to get off Prednisone and I

feel pretty well controlled. Usually Prednisone works quickly to relieve the

symptoms of RA but does little or nothing to slow or stop the permanent joint

damage. For that you need an RA drug like Methotrexate and many people need a

combination of medications to control their RA. If you can get a biologic I

strongly recommend it.

Some doctors define RA as not being in the spine but there are related

kinds of arthritis that do affect the spine. Whether it is RA or some other

inflammatory arthritis your rheumatologist should be able to help if it is any

kind of arthritis. However there are a lot of other things that can be wrong

with the spine so seeing an orthopedic doctor may be a good idea.

I don’t have throat problems but some people do. I have heard

that the neck contains a bone that can be affected by RA. Also sometimes our

medications or illness causes acid reflux that can damage the throat. Seeing

an ENT is a good idea. Let us know what happens.

I’m 78 and have had RA for a little over 4 years. My oldest son

is about your same age.

I hope you get better treatment for your illness or illnesses and start

feeling better soon. God bless

From: Rheumatoid Arthritis [mailto:Rheumatoid Arthritis ] On Behalf Of leonfii

Sent: Sunday, March 12, 2006 8:12

AM

Rheumatoid Arthritis

Subject:

New to the group!

On the 10th I sent the

message below to the group, but it did show-

up!!! Don't know what I did wrong!?

I was diagnosed with RA about 9 months ago.

Rheumatologist started

me on 15mgs of Methotraxate in combination with

prednisone and this

worked for me.

About 1 month ago I went completely off the

prednisone but the pain

started again. Two days ago I called rheumy

and he placed me back on

prednisone but the pain hasn't gone away. I

can't remember , but may

take awhile for it to take effect. Are any

of you on this

combination of meds?. All my joints are

effected by this: shoulders,

elbows, wrists, fingers, knees, ankles,

feet. The bottom of my feet

are getting calluses and it's very painful to

walk.

I also suffer with neck & back pain..an x-ray

of the back showed a

couple of the disks are degenerating. Rheumy said

back problems have

nothing to do with RA!.

3 days ago I ended up at the ER with the strangest

feeling in my

throat (not sore from a cold) it felt as if the

cartilage or the

mechanics of the throat itself were

collapsing. After an EKG and X-

ray I was told to see an ENT - I have an

appointment this afternoon.

March 8th of 2005 I had surgery for the removal of

a brain tumor

(benign). I'll be 54 next month..I've always

been very active, but

for the last three years my world has been falling

apart very

rapidly!!!

Any of you experience the throat thing? For

me that was so so scary.

Any comments/suggestions are appreciated

My best to all

[Guest guest]

My messages came through. Must have done something wrong at my end.

I have two different email addresses in outlook. I need to just

stick to a particular one when sending messages to the group. My name

is Filinta AKA .

Thank you for the information you gave me on RA and medications.

I saw ENT for the throat problem and was told I have arthritis on the

voice box and trachea.

I have an appointment with Rheumatologist March 24th and hope to talk

about maybe adding / adjusting or changing meds. What is a biologic?

My best to you.

>

> Welcome to the group and I have no idea what happened to your

earlier post.

> Sometimes they take a while to show up and occasionally they seem

to get

> lost. Please keep trying.

>

>

>

> I was started on Arava and Prednisone and then switched from Arava

to

> Methotrexate. Neither Arava nor Methotrexate worked well enough

for me to

> get off Prednisone so we added Remicade and slowly went up from 3

mg/kg to 6

> mg/kg which is where I am now. Then I was finally able to get off

> Prednisone and I feel pretty well controlled. Usually Prednisone

works

> quickly to relieve the symptoms of RA but does little or nothing to

slow or

> stop the permanent joint damage. For that you need an RA drug like

> Methotrexate and many people need a combination of medications to

control

> their RA. If you can get a biologic I strongly recommend it.

>

>

>

> Some doctors define RA as not being in the spine but there are

related kinds

> of arthritis that do affect the spine. Whether it is RA or some

other

> inflammatory arthritis your rheumatologist should be able to help

if it is

> any kind of arthritis. However there are a lot of other things

that can be

> wrong with the spine so seeing an orthopedic doctor may be a good

idea.

>

>

>

> I don't have throat problems but some people do. I have heard that

the neck

> contains a bone that can be affected by RA. Also sometimes our

medications

> or illness causes acid reflux that can damage the throat. Seeing

an ENT is

> a good idea. Let us know what happens.

>

>

>

> I'm 78 and have had RA for a little over 4 years. My oldest son is

about

> your same age.

>

>

>

> I hope you get better treatment for your illness or illnesses and

start

> feeling better soon. God bless

>

>

>

> _____

>

> From: Rheumatoid Arthritis

> [mailto:Rheumatoid Arthritis ] On Behalf Of leonfii

> Sent: Sunday, March 12, 2006 8:12 AM

> Rheumatoid Arthritis

> Subject: New to the group!

>

>

>

> On the 10th I sent the message below to the group, but it did show-

> up!!! Don't know what I did wrong!?

>

> I was diagnosed with RA about 9 months ago. Rheumatologist started

> me on 15mgs of Methotraxate in combination with prednisone and this

> worked for me.

> About 1 month ago I went completely off the prednisone but the pain

> started again. Two days ago I called rheumy and he placed me back

on

> prednisone but the pain hasn't gone away. I can't remember , but

may

> take awhile for it to take effect. Are any of you on this

> combination of meds?. All my joints are effected by this:

shoulders,

> elbows, wrists, fingers, knees, ankles, feet. The bottom of my

feet

> are getting calluses and it's very painful to walk.

>

> I also suffer with neck & back pain..an x-ray of the back showed a

> couple of the disks are degenerating. Rheumy said back problems

have

> nothing to do with RA!.

> 3 days ago I ended up at the ER with the strangest feeling in my

> throat (not sore from a cold) it felt as if the cartilage or the

> mechanics of the throat itself were collapsing. After an EKG and X-

> ray I was told to see an ENT - I have an appointment this afternoon.

>

> March 8th of 2005 I had surgery for the removal of a brain tumor

> (benign). I'll be 54 next month..I've always been very active, but

> for the last three years my world has been falling apart very

> rapidly!!!

>

> Any of you experience the throat thing? For me that was so so

scary.

>

> Any comments/suggestions are appreciated

>

> My best to all

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Hello Annett - ENT 1st checked my throat with a mirror and then a tube with a scope at the end of it. He said he could see the inflammation. He also made the comment that there was no need for a barium swallow.. he was very certain it was arthritis. Asked me to follow-up with my PCP and Rheumatologist.

I had milder episodes of that in the past: It would feel as if I'd forget on how to swallow - also had dry throat & hoarseness in my voice ( hoarseness mostly during morning hrs).

This time it felt as if the upper part of the throat was collapsing onto the lower and very painful when attempting to swallow. Swelling was also very noticeable on the outside..looked as if I didn't have a neck. My husband noticed it big time!

Good luck with that. Don't wait as long as I did to seek medical attention - it got worst with time.

-----Original Message-----From: Rheumatoid Arthritis [mailto:Rheumatoid Arthritis ] On Behalf Of AnnetteSent: Monday, March 13, 2006 9:07 PMRheumatoid Arthritis Subject: Re: Re: New to the group!

What is he going to do about your voicebox and trachea ? How did he determine the problem?

I have a problem with my throat too, with RA and Sjogren's and it is not figured out yet, but not bad enough to go to emergency. Just a constant annoyance with sore throat - feels like a desert - hot, dry and inflamed.

Annette

On 3/13/06, leonfii <leonfii@...> wrote:

My messages came through. Must have done something wrong at my end. I have two different email addresses in outlook. I need to just stick to a particular one when sending messages to the group. My name is Filinta AKA . Thank you for the information you gave me on RA and medications. I saw ENT for the throat problem and was told I have arthritis on the voice box and trachea. I have an appointment with Rheumatologist March 24th and hope to talk about maybe adding / adjusting or changing meds. What is a biologic?My best to you.