Re: Being Tested Now... New to Group

[Guest guest]

Welcome to the board but I'm sorry you have reason to be here. Some people get diagnosed quickly and others can take years before their symptoms settle to any specific disease. Fortunately many kinds of inflammatory arthritis are treated about the same so treatment can begin long before a diagnosis is definite. The American College of Rheumatology has developed seven criteria for diagnosing RA and any four of them qualify for a positive disagnosis.

1. Morning stiffness, lasting for at least an hour, present daily for at least 6 weeks2. Arthritis of 3 or more joints, lasting for at least 6 weeks3. Arthritis of the hand joints, lasting for at least 6 weeks4. Symmetric arthritis, lasting for at least 6 weeks5. Rheumatoid nodules6. Positive rheumatoid factor (blood test)7. Joint changes on x-ray

Notice that only one of them is blood work, one is x-rays, and the others are patient history and doctor's examination. They have a lot of variety in the diagnostic criteria because RA can vary greatly from one person to another.

Prednisone is a conticosteroid that is often given for temporary relief while RA drugs are taking their time in working to control the RA. Prednisone usually acts quite rapidly while most RA drugs take several weeks to several months to become effective. It can be bad for someone susceptible to diabetes so it might not be a good choice for you. It also has a lot of other bad side effects but it does have strong anti-inflammatory properties.

Methotrexate is the most commonly prescribed drug for RA and a lot of people get good results from it. It often has annoying side effects such as nausea, mouth sores, and hair loss, but by taking Folic Acid and/or Leucovorin along with it these side effects are usually reduced. Also side effects are less pronounced with injections as opposed to pills.

It's unlikely that you will regain all of your pre-RA capabilities but it is likely that you can adapt easily and still do what you really need to do. The first year or so is the hardest so RA is a great teacher of patience. Please post any questions you have and don't hesitate to ask for clarification if any explanation is not clear or doesn't make sense to you. Few if any of us are medicatlly trained but we have actually experienced RA so we have a lot of practical knowledge. God bless.

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

From:

Rheumatoid Arthritis

Sent: Saturday, August 27, 2005 7:27 PM

Subject: Being Tested Now... New to Group

Hi,I'm new here. I've just started the process of being tested for RA. At this point, I don't know where to turn. I don't know how long it will take to get a definitive diagnosis. It all started with a nasty little virus called parvo b-19. It is usually mild in kids, but it hit me very hard. It caused arthritis-type pain in many of my joints, neuropathy, skin sensitivity, swollen lymph nodes in my head and neck, fatique and muscle pains. After having parvo b-19 for 12 weeks, the Infectious Disease doc believes that I have developed RA and possibly even lupus. Auto-immune diseases have run in my family for generations. My sister has lupus, but doesn't know much about RA. I wasn't supposed to have the parvo this long. At first, the pain in my joints was just that... pain. Now it includes redness, heat and swelling. That's why the ID doc thinks I have RA. She's not as sure about lupus, but the testing has just begun.I don't know where to go from here. I don't know how long it takes to get diagnosed or what tests they are doing. I'm frustrated and in pain. I can't take NSAIDs because I'm allergic... so right now I'm only on tylenol which doesn't work very well. She told me about steroids and the risk of increased blood sugars with long-term use. Not a great option for me since I'm already borderline diabetic, and my mom and grandmother have type II diabetes. Argg!I hope someone can tell me what to expect, what other types of treatment are out there, what this disease is really like. My daughter asked me if I will be ok. She's 7 and I'm a single mom. I told her I'll be fine. But will I? Will I be able to go back to who I was before all of this? Can anyone tell me what to expect? I'm at a loss here... I don't know where to turn. In my experience, the best place to go is the source... people who are living it... Please help!

[Guest guest]

Getting the final diagnosis of having RA is far from finding relief from

this sill disease though. I went the doctors route of medications for

almost 2 years with no relief, or virtually none, and the disease

progressively getting worse.

My recommendation to everyone with a health challenge is to look at your

livestyle and see if there are some positive changes you can

make.......Diet, Proper Rest, Stress Reduction, Water Intake, Exercise.

These all add up to how we feel and I would encourage everyone to do a good

review. We are what we feed our body.

Dorey

www.LivingWithRheumatoidArthritis.com

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

From: " " <momofangel@...>

<Rheumatoid Arthritis >

Sent: Monday, August 29, 2005 7:20 PM

Subject: Re: Being Tested Now... New to Group

> Thanks for your response.

>

> Wow! That was a lot of information. I think I understand now why

> the Infectious Disease doc suspects RA. I have had the parvo for

> over 12 weeks now, and complained of the first four on your list. I

> explained to her how I taught my seven year old to make me coffee

> and bring my medicines to me each morning because I couldn't get up

> out of bed... that my pain was pretty even on both sides (with the

> exception of the swollen lymph nodes in my skull), and that the

> arthritis pain included my hands, wrists, knees, ankles, feet and

> neck. Now I don't know what rheumatoid nodules are... and I'm still

> waiting on the blood test. I also don't have previous x-rays of

> most of my joints, so I'm not sure how they would compare.

>

> I also feel like I'm in limbo waiting for any kind of pain relief.

> Since I have no appointment or test results until September 21, am I

> supposed to suffer until then? Should I go back to see my Internist?

> Arggh!

>

> Plus, there is no telling if I'm still actually contagious with this

> stinkin' virus!! Fortunately, today I found out that my younger

> sister, who is pregnant, is already immune to the virus so I can be

> near her again. Otherwise the virus had the potential to make her

> lose her baby. I was afraid I might not be able to see her until

> sometime after the baby was born(and she is only in her first

> trimester).

>

> Sorry, I don't mean to blabber on about this annoying virus. I'm

> really quite relieved that there is a forum where I can ask

> questions and talk to other people who know about RA from their own

> experiences.

>

> Thank you!

>

>

>> Welcome to the board but I'm sorry you have reason to be here.

> Some people get diagnosed quickly and others can take years before

> their symptoms settle to any specific disease. Fortunately many

> kinds of inflammatory arthritis are treated about the same so

> treatment can begin long before a diagnosis is definite. The

> American College of Rheumatology has developed seven criteria for

> diagnosing RA and any four of them qualify for a positive

> disagnosis.

>> 1. Morning stiffness, lasting for at least an hour, present daily

> for at least 6 weeks

>> 2. Arthritis of 3 or more joints, lasting for at least 6 weeks

>> 3. Arthritis of the hand joints, lasting for at least 6 weeks

>> 4. Symmetric arthritis, lasting for at least 6 weeks

>> 5. Rheumatoid nodules

>> 6. Positive rheumatoid factor (blood test)

>> 7. Joint changes on x-ray

>>

>> Notice that only one of them is blood work, one is x-rays, and

> the others are patient history and doctor's examination. They have

> a lot of variety in the diagnostic criteria because RA can vary

> greatly from one person to another.

>>

>> Prednisone is a conticosteroid that is often given for temporary

> relief while RA drugs are taking their time in working to control

> the RA. Prednisone usually acts quite rapidly while most RA drugs

> take several weeks to several months to become effective. It can be

> bad for someone susceptible to diabetes so it might not be a good

> choice for you. It also has a lot of other bad side effects but it

> does have strong anti-inflammatory properties.

>>

>> Methotrexate is the most commonly prescribed drug for RA and a lot

> of people get good results from it. It often has annoying side

> effects such as nausea, mouth sores, and hair loss, but by taking

> Folic Acid and/or Leucovorin along with it these side effects are

> usually reduced. Also side effects are less pronounced with

> injections as opposed to pills.

>>

>> It's unlikely that you will regain all of your pre-RA capabilities

> but it is likely that you can adapt easily and still do what you

> really need to do. The first year or so is the hardest so RA is a

> great teacher of patience. Please post any questions you have and

> don't hesitate to ask for clarification if any explanation is not

> clear or doesn't make sense to you. Few if any of us are medicatlly

> trained but we have actually experienced RA so we have a lot of

> practical knowledge. God bless.

>>

>> ----- Original Message -----

>> From:

>> Rheumatoid Arthritis

>> Sent: Saturday, August 27, 2005 7:27 PM

>> Subject: Being Tested Now... New to Group

>>

>>

>> Hi,

>> I'm new here. I've just started the process of being tested for

>> RA. At this point, I don't know where to turn. I don't know

> how

>> long it will take to get a definitive diagnosis.

>>

>> It all started with a nasty little virus called parvo b-19. It

> is

>> usually mild in kids, but it hit me very hard. It caused

> arthritis-

>> type pain in many of my joints, neuropathy, skin sensitivity,

>> swollen lymph nodes in my head and neck, fatique and muscle

> pains.

>> After having parvo b-19 for 12 weeks, the Infectious Disease doc

>> believes that I have developed RA and possibly even lupus. Auto-

>> immune diseases have run in my family for generations. My

> sister

>> has lupus, but doesn't know much about RA.

>>

>> I wasn't supposed to have the parvo this long. At first, the

> pain

>> in my joints was just that... pain. Now it includes redness,

> heat

>> and swelling. That's why the ID doc thinks I have RA. She's

> not as

>> sure about lupus, but the testing has just begun.

>>

>> I don't know where to go from here. I don't know how long it

> takes

>> to get diagnosed or what tests they are doing. I'm frustrated

> and

>> in pain. I can't take NSAIDs because I'm allergic... so right

> now

>> I'm only on tylenol which doesn't work very well. She told me

> about

>> steroids and the risk of increased blood sugars with long-term

> use.

>> Not a great option for me since I'm already borderline diabetic,

> and

>> my mom and grandmother have type II diabetes. Argg!

>>

>> I hope someone can tell me what to expect, what other types of

>> treatment are out there, what this disease is really like. My

>> daughter asked me if I will be ok. She's 7 and I'm a single

>> mom. I told her I'll be fine.

>>

>> But will I? Will I be able to go back to who I was before all

> of

>> this? Can anyone tell me what to expect? I'm at a loss here...

> I

>> don't know where to turn. In my experience, the best place to

> go is

>> the source... people who are living it...

>>

>> Please help!

>>

>>

>>

>>

>>

>>

>>

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

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

>> ! GROUPS LINKS

>>

>> a.. Visit your group " Rheumatoid Arthritis " on the web.

>>

>> b..

[Guest guest]

A rheumatoid nodule is a small lump that is usually hard and painlesss, probably no larger than a pea. I think they usually appear near a joint but we have so many joints that could be anywhere. I usually have them on my hands (usually between 10 and 20 of them) and elbows (about 3 each). Other people have them on their knees or feet, and I guess they can even appear on the lungs. I think they are an accumulation of excess fluid caused by inflammation of the joints and can come and go at any time. I'm not sure how they differ from synovial cysts but I call anything smaller than a pea a nodule and anything larger a cyst.

I suggest you call your doctor to see if you can get started on some medicines. If Prednisone is not good for you maybe you can get started on Methotrexate and a pain reliever. I have used Ibuprofen as an over-the-counter anti-inflammatory but it is hard on your stomach and may need some additional medicine to avoid damage from that. Unfortunately most medicines either do not have an effect or also have side effects. We do know that untreated RA usually leads to permanent joint damage and the medicines usually have either side effects that are reversible when the medicine is stopped or else very rare side effects that are irreversible. I prefer the risks that are either reversible or very rare to the ones that are likely and irreversible.

Also call your rheumatologist to see if you can get in earlier. There may be cancellations and you can be worker in sooner. Also if your GP calls your rheumatologist you may get in sooner. The squeaking wheel gets the grease, so SQUEAK!

I don't know anything about the parvovirus but I do know that a lot of diseases have symptoms similar to RA so that RA is often very hard to diagnose. Sometimes a lot of tests are run to rule out other things and make sure that they are treating the right disease. However, I think they should be treating the most likely disease until they get a diagnosis that rules it out. I hope you are able to get effective treatment soon.

Please do not apologize for frequency or length of posts. We can ignore things we don't find interesting but we can't respond to anything that is not posted. God bless.

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

From:

Rheumatoid Arthritis

Sent: Monday, August 29, 2005 7:20 PM

Subject: Re: Being Tested Now... New to Group

Thanks for your response. Wow! That was a lot of information. I think I understand now why the Infectious Disease doc suspects RA. I have had the parvo for over 12 weeks now, and complained of the first four on your list. I explained to her how I taught my seven year old to make me coffee and bring my medicines to me each morning because I couldn't get up out of bed... that my pain was pretty even on both sides (with the exception of the swollen lymph nodes in my skull), and that the arthritis pain included my hands, wrists, knees, ankles, feet and neck. Now I don't know what rheumatoid nodules are... and I'm still waiting on the blood test. I also don't have previous x-rays of most of my joints, so I'm not sure how they would compare. I also feel like I'm in limbo waiting for any kind of pain relief. Since I have no appointment or test results until September 21, am I supposed to suffer until then? Should I go back to see my Internist?Arggh! Plus, there is no telling if I'm still actually contagious with this stinkin' virus!! Fortunately, today I found out that my younger sister, who is pregnant, is already immune to the virus so I can be near her again. Otherwise the virus had the potential to make her lose her baby. I was afraid I might not be able to see her until sometime after the baby was born(and she is only in her first trimester).Sorry, I don't mean to blabber on about this annoying virus. I'm really quite relieved that there is a forum where I can ask questions and talk to other people who know about RA from their own experiences. Thank you!

[Guest guest]

Very well said. Rest, Nutrition and Stress Reduction are my top three goals every day!!!SamOn Aug 29, 2005, at 8:26 PM, Dorey wrote: Getting the final diagnosis of having RA is far from finding relief from this sill disease though.       I went the doctors route of medications for almost 2 years with no relief, or virtually none, and the disease progressively getting worse. My recommendation to everyone with a health challenge is to look at your livestyle and see if there are some positive changes you can make.......Diet, Proper Rest, Stress Reduction, Water Intake, Exercise. These all add up to how we feel and I would encourage everyone to do a good review.  We are what we feed our body. Dorey www.LivingWithRheumatoidArthritis.com ----- Original Message ----- From: "" <momofangel@...> <Rheumatoid Arthritis > Sent: Monday, August 29, 2005 7:20 PM Subject: Re: Being Tested Now... New to Group > Thanks for your response. > > Wow!  That was a lot of information.  I think I understand now why > the Infectious Disease doc suspects RA.  I have had the parvo for > over 12 weeks now, and complained of the first four on your list.  I > explained to her how I taught my seven year old to make me coffee > and bring my medicines to me each morning because I couldn't get up > out of bed... that my pain was pretty even on both sides (with the > exception of the swollen lymph nodes in my skull), and that the > arthritis pain included my hands, wrists, knees, ankles, feet and > neck.  Now I don't know what rheumatoid nodules are... and I'm still > waiting on the blood test.  I also don't have previous x-rays of > most of my joints, so I'm not sure how they would compare. > > I also feel like I'm in limbo waiting for any kind of pain relief. > Since I have no appointment or test results until September 21, am I > supposed to suffer until then?  Should I go back to see my Internist? > Arggh! > > Plus, there is no telling if I'm still actually contagious with this > stinkin' virus!!  Fortunately, today I found out that my younger > sister, who is pregnant, is already immune to the virus so I can be > near her again.  Otherwise the virus had the potential to make her > lose her baby.  I was afraid I might not be able to see her until > sometime after the baby was born(and she is only in her first > trimester). > > Sorry, I don't mean to blabber on about this annoying virus.  I'm > really quite relieved that there is a forum where I can ask > questions and talk to other people who know about RA from their own > experiences. > > Thank you! > > >> Welcome to the board but I'm sorry you have reason to be here. > Some people get diagnosed quickly and others can take years before > their symptoms settle to any specific disease.  Fortunately many > kinds of inflammatory arthritis are treated about the same so > treatment can begin long before a diagnosis is definite.  The > American College of Rheumatology has developed seven criteria for > diagnosing RA and any four of them qualify for a positive > disagnosis. >> 1. Morning stiffness, lasting for at least an hour, present daily > for at least 6 weeks >> 2. Arthritis of 3 or more joints, lasting for at least 6 weeks >> 3. Arthritis of the hand joints, lasting for at least 6 weeks >> 4. Symmetric arthritis, lasting for at least 6 weeks >> 5. Rheumatoid nodules >> 6. Positive rheumatoid factor (blood test) >> 7. Joint changes on x-ray >> >> Notice that only one of  them is blood work, one is x-rays, and > the others are patient history and doctor's examination.  They have > a lot of variety in the diagnostic criteria because RA can vary > greatly from one person to another. >> >> Prednisone is a conticosteroid that is often given for temporary > relief while RA drugs are taking their time in working to control > the RA.  Prednisone usually acts quite rapidly while most RA drugs > take several weeks to several months to become effective.  It can be > bad for someone susceptible to diabetes so it might not be a good > choice for you.  It also has a lot of other bad side effects but it > does have strong anti-inflammatory properties. >> >> Methotrexate is the most commonly prescribed drug for RA and a lot > of people get good results from it.  It often has annoying side > effects such as nausea, mouth sores, and hair loss, but by taking > Folic Acid and/or Leucovorin along with it these side effects are > usually reduced.  Also side effects are less pronounced with > injections as opposed to pills. >> >> It's unlikely that you will regain all of your pre-RA capabilities > but it is likely that you can adapt easily and still do what you > really need to do.  The first year or so is the hardest so RA is a > great teacher of patience.  Please post any questions you have and > don't hesitate to ask for clarification if any explanation is not > clear or doesn't make sense to you.  Few if any of us are medicatlly > trained but we have actually experienced RA so we have a lot of > practical knowledge.  God bless. >> >>   ----- Original Message ----- >>   From: >>   Rheumatoid Arthritis >>   Sent: Saturday, August 27, 2005 7:27 PM >>   Subject: Being Tested Now... New to Group >> >> >>   Hi, >>   I'm new here.  I've just started the process of being tested for >>   RA.  At this point, I don't know where to turn.  I don't know > how >>   long it will take to get a definitive diagnosis. >> >>   It all started with a nasty little virus called parvo b-19.  It > is >>   usually mild in kids, but it hit me very hard.  It caused > arthritis- >>   type pain in many of my joints, neuropathy, skin sensitivity, >>   swollen lymph nodes in my head and neck, fatique and muscle > pains. >>   After having parvo b-19 for 12 weeks, the Infectious Disease doc >>   believes that I have developed RA and possibly even lupus.  Auto- >>   immune diseases have run in my family for generations.  My > sister >>   has lupus, but doesn't know much about RA. >> >>   I wasn't supposed to have the parvo this long.  At first, the > pain >>   in my joints was just that... pain.  Now it includes redness, > heat >>   and swelling.  That's why the ID doc thinks I have RA.  She's > not as >>   sure about lupus, but the testing has just begun. >> >>   I don't know where to go from here.  I don't know how long it > takes >>   to get diagnosed or what tests they are doing.  I'm frustrated > and >>   in pain.  I can't take NSAIDs because I'm allergic... so right > now >>   I'm only on tylenol which doesn't work very well.  She told me > about >>   steroids and the risk of increased blood sugars with long-term > use. >>   Not a great option for me since I'm already borderline diabetic, > and >>   my mom and grandmother have type II diabetes.  Argg! >> >>   I hope someone can tell me what to expect, what other types of >>   treatment are out there, what this disease is really like.  My >>   daughter asked me if I will be ok.  She's 7 and I'm a single >>   mom.  I told her I'll be fine. >> >>   But will I?  Will I be able to go back to who I was before all > of >>   this?  Can anyone tell me what to expect?  I'm at a loss here... > I >>   don't know where to turn.  In my experience, the best place to > go is >>   the source... people who are living it... >> >>   Please help! >>   >> >> >> >> >> >> >> ------------------------------------------------------------------- > ----------- >>   ! GROUPS LINKS >> >>     a..  Visit your group "Rheumatoid Arthritis" on the web. >> >>     b..