|
|
|
Group: Forum Members
Last Login: Saturday, January 22, 2011
Posts: 1,400,
Visits: 1,846
|
|
Welcome
This is a forum where all members share information and try to give support to all. Please feel free to join in and post.
We would love to have you introduce yourself. There are a couple ways to do that. One is to complete your profile. The other is to start a new message thread – include some variation of the word “newbie” or “introduction” in your post title. You can post whatever information about yourself you want to share with us. It helps us to know you better and respond better. We welcome all new members and hope you enjoy being here. We look forward to hearing more from you.
RA Diagnostic Criteria
From 1987 to 2009, ACR’s diagnostic criteria for RA was any four of the following:
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
In October of 2009, the American College of Rheumatology collaborated with the European League Against Rheumatism to re-define diagnostic criteria. The goal is to recognize RA early, then treat it aggressively enough that the above criteria are never met.
Now, instead of the aforementioned criteria, there is a scoresheet that looks at joint involvement, serology, duration of synovitis, and acute phase reactants:
Joint Involvement
• 1 med-large joint (0 points)
• 2-10 med-lg joints (1 point)
• 1-3 small joints (2 points)
• 4-10 small joints (3 points)
• >10 joints (at least one small joint) (5 points)
Serology
• Neither RF or ACPA (anti-CCP) positive (0 points)
• At least one test low positive titer (2 points)
• At least one test high positive titer (3 points)
Duration of Synovitis
• <6 weeks (0 points)
• >6 weeks (1 point)
Acute Phase Reactants
• Neither ESR nor CRP abnormal (0 points)
• Abnormal CRP or abnormal ESR (1 point)
Total score of six or more points means a definite RA diagnosis, even without x-ray evidence. Doctors aren’t limited by normal sed rate, CRP, or RF. A zillion joints involved for six or more weeks equates to a positive diagnosis without it mattering one bit what any lab results might say.
General RA Information
Arthritis Foundation's Disease Center
Arthritis Today's Focus on Rheumatoid Arthritis
Arthritis Foundation's Q&A Page
Links to Additional Helpful Information
Spoon Theory
Tip-offs to Rip-offs
Alternative Therapies
Defining the Terms
First Visit to The Rheumatologist
Finding A Rheumy
Antibiotic Therapy - Road Back Foundation
Social Security Disability Benefits (SSDI and SSI programs)
Food Intolerance
The Squat Shot - how to give yourself a shot
The Prednisone Battle - weaning off of pred
Lab Tests Online
Discussion of ESR, CRP, ANA, Anti-CCP, and RF tests
Assistive Devices for Rheumatoid Arthritis
North Coast Medical - formerly BeAbleToDo
Stress (good but technical)
What's the Harm?
ReliefInsite
The Arthritis Store
Ease-of-Use Program
Medication Information
Arthritis Drug Types
Drug Information Online
RxList - The Internet Drug Index
Drugs & Supplements - Mayo Clinic
Arthritis Drug Guide
Financial Assistance
Patient Assistance Programs for Rheumatology-Related Drugs
Partnership for Prescription Alliance
Needy Meds
The Medicine Program
Free Medicine Program
Rx Assist
Medication Foundation
Prescription Drug Assistance Programs (pdf file)
QDrug Discounts
Message from Susan on Whidbey, Posted : 9/4/2006 12:21 PM
I'm writing because it seems appropriate, with so many joining our ranks, to talk about the emotional upheaval you're now experiencing.
You should know that most of us have gone through the process. First you're just peeking at the posts because you KNOW you probably don't have RA, but there's that nagging fear.
Then, as more symptoms seem to fall into place, you decide to find out for sure because you know SOMETHING is wrong.
Then there is, for many, an interminable wait as symptoms get worse but the blood tests seem normal. And NO you're not a hypochondriac. Take that one off your list right now.
Then, though it may take a second opinion or three or four, you have the diagnosis. You'll feel a smidgeon of relief, but now you've opened up a whole new can of worms.
And right here, when you're really feeling awful because none of the medications kick in for an eternity, you need to look carefully at the rheumatologist and decide whether this is the person with whom you want to be sharing the battle against the rheumatoid monster. This is your first really important decision. You'll read here of the frustration and disappointment that comes of a poor match between patient and doctor. Making the most of your health depends on being able to stay upbeat- and that ain't happening with the wrong combination, no matter how diplomaed he/she is.
But all the while, you'll be going through the classic stages of grief. The sooner you work through denial, anger, guilt, the better. Bottling that stuff up 'for the sake of the family' only holds you back. Go off by yourself, if you must, to scream and cry. Or come here to vent. But get that bad stuff out so you can devote your energy to taking up every sword you can find again the RA monster.
Please know that you are NOT alone. Chances are there is someone here who has already experienced the strangest symptom you can think of. It would be SO much easier if there were a predictable pathway of symptoms and outcomes.
There's not. You'll have to do battle as your body dictates. In that sense, it's a lonely struggle. But this community is united in sharing support, and from that you will gain the strength to keep taming the beast within.
Information about RA? There's loads of it here. Hints, tricks, and inside jokes to boot. But underneath all that is sharing a lifeline with all who join us. Please do and help make us stronger by your participation.
RA Info On Other Sites
Rheumatoid Arthritis Guide – WebMD
Arthritis Center – Johns Hopkins
Rheumatoid Arthritis – Mayo Clinic
Rheumatoid Arthritis - Arthritis Research Campaign
Diagnosis of RA – UpToDate for Patients
Rheumatoid Arthritis - National Institute of Arthritis and Musculoskeletal and Skin Diseases
Diagnosis and Management of Rheumatoid Arthritis – American Academy of Family Physicians
Rheumatoid Arthritis – Family Doctor
Rheumatoid Arthritis and Complementary & Alternative Medicine - National Center for CAM
Rheumatoid Arthritis Treatment - Johns Hopkins
Rheumatoid Arthritis Treatment – UpToDate for Patients
60-Second Guide to RA - Rheumatoid Arthritis Guy's blog
RA 101 - Rheumatoid Arthritis Warrior's blog
General Information About the Board
The board contains "threads" that consist of an initial post and the related replies that were written by clicking the "add reply" button while reading the open post. A new thread is started by clicking the “add topic” button. If you are changing a subject it is best to start a new thread.
In addition to the information you’ve hopefully/probably already located, some site features that you might have missed include:
Profiles
To learn about a person, click on that individual’s name and you will be able to view the person’s profile. Many of us do this so that we can refresh our memory about you and customize an answer to questions you pose (depending on your privacy settings). It is helpful to know your diagnosis and meds. When you create your profile, you have the option of (1) allowing all AF members to view your profile, (2) allowing only those you friend to view your profile, or (3) not allowing anyone to view your profile. Here is a thread about changing profiles.
Signature Line
You will notice that some people have a standard signature line. It is not necessary to re-type this information every time; directions for creating a signature line can be found here.
Site Mail & Private Messages
Sometimes it’s nice to communicate with people one-on-one instead of on the open discussion board. There are two different ways to do this. Discussion of site mail versus private messages can be found here on the technical support message board.
MedBlog Articles You Might Find Helpful
Pain Management
Never Say 10! How Doctors Interpret the Pain Scale
Non-Pharmaceutical Pain Management Options
Dr. Rob on Narcotics
Letter from a Chronic Pain Sufferer (and response from an ER doc)
Understanding the Doctor-Patient Relationship
Types of Doctors – Finding a Doctor part1
To My Patients
How to be a Good Patient
Dr. Grumpy’s Tips for Patients
Letter to Patients from the Healthcare System
Getting Along Part 1 – Doctor Rules
Getting Along Part 2 – Patient Rules
An Open Letter to Consultants
Why See A Doctor
Be Reasonable
Breaking Up
I Work for a Living
I Work for a Living Part 2
Making Patients Angry
Top Ten Ways to Annoy Your Doctor
How to Bug A Doctor
Patient’s Bill of Responsibilities
How Not To Be an Obnoxious Patient
RA Patient Blogs
Arthritis Foundation's Community Page
List of additional RA blogs
Thank you to Jess, Grandpavan, SusanOnWhidbey, Pam, and everyone else who contributed.
+WarmSocks 
______________________________________________________
Aiming for NED
Rheumatoid Arthritis, Spondylitis, Enthesitis, Peripheral Neuropathy, Raynauds
Azulfidine (ssz), Methotrexate (mtx), Humira, Folic Acid, Feldene, Prilosec, vitamins
|
|
|
|
|
Group: Forum Members
Last Login: Thursday, March 11, 2010
Posts: 1,
Visits: 4
|
|
| Help. How do I get started asking questions? I have so much I want to talk about. Does anyone have spinal stenois? Or am I in the wrong web site to discuss this form of arthritis? I have the knots on my hands, the pain in my back, the numbness in my legs, the tingling, the planter factious. Does anyone ever go to a chiropractor? I only take over counter meds and I have to say, they don't work.
|
|
|
|
|
Group: Forum Members
Last Login: Saturday, January 28, 2012
Posts: 663,
Visits: 1,830
|
|
Warmsocks, what an excellent post! Thank you so much for putting this together!
Phyllis
Graves Disease diagnosed 2003. RA Diagnosed 2009. Currently taking Remicade infusions 400 mg every 6 wks; Methotrexate 20 mgs; Folic Acid; Pepcid; Prednisone 5 mg; Synthroid 150mcgs; Diclofenac
Daughter of the King; Wife to Rick 14 yrs; Mom to 2 sons and 2 daughters. Awma (Grandma) to Makalya 11; Quinten 9; Zac 8; Emilly 6
|
|
|
|
|
Group: Forum Members
Last Login: Saturday, September 18, 2010
Posts: 5,
Visits: 9
|
|
| Warmsocks, this was a very informative blog about RA and would be well suited for other types of arthritis also. All the titers and sed rates and such have been off the charts for me but the first two rhumatologist I went to over a five year span just stated there was nothig to be done due to my allergies to sulfa meds. See what they nknew and how dumb an RN can be(me). I lit up a full body scan done 10 years ago due to an ankle injury but I did not chatch the implication and neither did my doctors. Wish they had it would have stopped some of these troubles I had in the past 2 years. I had no problems except occassional pains and swellings from what I thought was just lifes work and toll on our bodies due to hard work since the age of 8. I knew I had As and dealt with the pain and non use of my legs at times but could always move even stiff legged or swinging them but after the accident every thing hit hard. I added a profile as you suggested and hope to hear from some peoplenwho have had this same problem and about the meds. Thanks again a bless you. Marti
|
|
|
|
|
Group: Forum Members
Last Login: 2 days ago @ 6:24 PM
Posts: 660,
Visits: 2,485
|
|
I would like to thank everyone who helped put all this information together. It really helps us newbies!!
Trish
____________________________________________________________________________________________________________
Diagnosed w/ Idiopathic Anaphylaxis 2003, Fibro 2003, OA, Osteopenia, Interstitial Cystitis 2003, Sinus Induced Migraines 2003, Endometriosis 2004, Mild Sleep Apnea 2004, RA 2009, Current Meds: Humira 40mg every other week, MTX 20mg, Folic Acid, plaquenil 400mg, Seasonale, Relafen, Calcium 600 w/D, Ambien, Vitamins,
|
|
|
|
|
Group: Forum Members
Last Login: Monday, November 14, 2011
Posts: 6,
Visits: 19
|
|
| Thank you for the great post. Very informative and right on point. I am a Newbie and a Lurker lol Like so many others not quite sure what my body is doing. I see the rheumy in about a week and hopefully will get some answers. Although I see now that a definitive answer may take time and to quote someone" if it walks like a duck quakes like a duck" lets just get this treated. My hands swell, my fingers ache(twisting) my wrists hurt ,my toes hurt ,my feet hurt and my knee is starting to well... hurt! Thanks to all who so graciously put their stories on this site. I have found them so helpful.
|
|
|
|
|
Group: Forum Members
Last Login: Thursday, April 21, 2011
Posts: 2,
Visits: 11
|
|
I am new to this website (but not new to RA--I was diagnosed when I was 25, I'm 48 now). I have a daughter hoping to go to college next fall and we are currently trying to find a way to pay for college. As most of us with RA know, the money that most people would have available to save for their kids education has been spent on Dr.s, prescriptions, devices, procedures. etc.
I am just wondering if anyone here has any suggestions on where I might find scholarships, grants, or loans that might be available connected to RA?
Thank you in advance for responding.
Sincerely,
Dennis Honsey
|
|
|
|
|
Group: Forum Members
Last Login: Yesterday @ 9:38 PM
Posts: 5,040,
Visits: 8,326
|
|
Hi Dennis,
Try reposting this as a new thread on the main page. Just click on "Add topic". You might have more replies there.
Welcome to the forum!
Gramma Ellie
In remission since April 2011. Hoping it will last!
|
|
|
|
|
Group: Forum Members
Last Login: Yesterday @ 12:26 PM
Posts: 5,192,
Visits: 8,143
|
|
Dennis Honsey (3/16/2011)
. . . I am just wondering if anyone here has any suggestions on where I might find scholarships, grants, or loans that might be available connected to RA?
Thank you in advance for responding.
Sincerely,
Dennis Honsey
Hi Dennis,
Yes . . . but the deadline is March 18th. I think it's open to anyone with RA or a family member of someone w/RA. Perhaps your daughter can apply next year.
Here's the link for more info and good luck to your daughter.
http://www.reachbeyondra.com/scholarship/Default.aspx
________________________________________________
Don’t let what you can’t do, interfere with what you can do.
|
|
|
|
|
Group: Forum Members
Last Login: Tuesday, March 22, 2011
Posts: 2,
Visits: 3
|
|
| Hi I have only been diagnosed for a few weeks and have my first appointment with a rheumatologist April 15th. My hands are the most affected right now making me unable to play the guitar which has been my hobby since age 12 (I am 51) I don't even know where to start except to say my biggest concern with RA meds is having a suppressed immune system. I work in direct care with intellectually impaired adults which exposes me to lots of germs! I will take the meds if it helps with my pain, stiffness, and extreme fatigue. I would love to hear from others!
|
|
|
|
|
Group: Forum Members
Last Login: Yesterday @ 9:38 PM
Posts: 5,040,
Visits: 8,326
|
|
Welcome Macey,
Please post again on the main RA Connect page. Just click [add topic] and introduce yourself there. This thread is not usually read by anyone except those looking for information.
We're glad to have you join us!
In remission since April 2011. Hoping it will last!
|
|
|
|
|
Group: Forum Members
Last Login: Friday, April 15, 2011
Posts: 1,
Visits: 1
|
|
| My mom has RA and her current insurance is EXTREMELY expensive, does anyone know of any good plans that except people with RA?
|
|
|
|
|
Group: Forum Members
Last Login: Monday, January 16, 2012
Posts: 18,
Visits: 29
|
|
Great info thanks for putting it together. It's so nice to have a place to talk with the everyday people who deal with RA!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
"When you get to the end of your rope, tie a knot and hang on."
-- Franklin D. Roosevelt
"I'm a little selfish, impatient and a little insecure. I make mistakes, I am out of control and at times hard to handle. But if you can't handle me at my worst, then you sure as hell don't deserve me at my best."
~ Marilyn Monroe~
|
|
|
|
|
Group: Forum Members
Last Login: Thursday, July 14, 2011
Posts: 2,
Visits: 3
|
|
Hello Everyone,
I am New and I am very interested in this forum and all the information that we can share together in combating this disease and I hope the information and ideas and that I will be a contributing factor in solving arthritis of all types.
Have a Great Day!
Best regards,
Thomas Jackson
|
|
|
|
|
Group: Forum Members
Last Login: Saturday, July 23, 2011
Posts: 2,
Visits: 5
|
|
| Hi all, my name is Carol. I was recently diagnosed with RA. I have had arthritis since my 30's, osteoarthritis since my 40's. I am now 68. My Orthopedist started me on Plaquenil, prednisone, & vicadin three weeks ago. I started having a rash on my arms, legs, stomach, & chest last week so he told me to take a benedryl daily and if the rash didn't get better then to go off the plaquenil. I went off it two days ago. I read up on other meds for RA and some of the side effects are awful. I would like some feedback from others on meds. When he started me on all this my whole body ached, I was exhausted after just a bit of tasks, I could barely get my legs to step up into our SUV. They would feel weak and jelly like sometimes. The medication was helping, now I'm worried the symptoms will come back. I am also still working part time as a habilitation aide for the mentally challanged. I have to help with housework & grocery shopping, which requires moving furniture sometimes, to clean, & carrying heavy bags. Some days it takes it's toll. I can't quit because I am on UC from a previous job. If I quit I lose my UC.
|
|
|
|
|
Group: Forum Members
Last Login: Saturday, September 10, 2011
Posts: 1,
Visits: 2
|
|
| I have just found this list while googling hair loss and methotrextrate. I was diagnosd with RAin 1996 and in addition Fibromyalgia in 1998. Losing hair more now that mthxt 25 mg each week.
|
|
|
|
|
Group: Forum Members
Last Login: Thursday, January 12, 2012
Posts: 44,
Visits: 73
|
|
| Im not sure if im doing this right or not,, I found out 4 weeks ago I have RA, was put on Plaquenil and was on it for 2 weeks and broke out in hives really bad, Of course my body rejected this kind of Med, So she just put me on Methotrexate and prednisone , folic acid and Im scared to death to start it. I told my husband I will start it Monday. I have never takin any kind of drugs and just shakin in my shoes about this whole thing. Im 52 and I just dont know what to expect...Can anyone that has been on these Meds. help me out??? thanks Sherri
|
|
|
|
|
Group: Forum Members
Last Login: Yesterday @ 12:26 PM
Posts: 5,192,
Visits: 8,143
|
|
sherri hall (9/17/2011)
Im not sure if im doing this right or not . . . .
Hi Sherri,
You might wanna start a new thread, title it something like "newbie, questions about methotrexate, etc." and repost this down in the 'forum topics' section in the lower part of this page -- more people will see your post there and reply.
I never took any drugs either before being diagnosed with RA -- I've now been on methotrexate for nearly 25 years.
These drugs scare many at first, but you will have regular labwork to monitor for side effects. The drugs used today to manage RA can be very effective in managing the pain and inflammation of RA, and more importantly prevent joint damage.
See you over on RA Connects forum.
________________________________________________
Don’t let what you can’t do, interfere with what you can do.
|
|
|
|
|
Group: Forum Members
Last Login: Thursday, January 12, 2012
Posts: 44,
Visits: 73
|
|
| Okay thanks so much Joy...
|
|
|
|
|
Group: Forum Members
Last Login: Sunday, October 09, 2011
Posts: 3,
Visits: 7
|
|
Hello,
My name is Kenneth and I have severe Rhumetoid Arthritis as well as Osteo Arthritis, and I was born with JA.
I seem to have pain everywhere, but the worst is in my neck (where four vertibre are fused together) and then across my shoulders including my shoulder blades. Sometimes the pain can be so unbarable it will bring me to my knees and beg for the pain to stop. To further complicate matters, I have liver disease which is currently under treatment and the doctors hope the Hepatitis Virus will be eliminated and my liver emzymes will return to normal and it will heal successfully. But the doctor(s) will still have to use caution with the extremely powerful anti-imflamitories, as they could still possibly damage my liver. I was taking Azulfidine but my white blood cell count got to low and it had to be terminated. Currently I am looking for a new Rhemetologist that I believe can give me better care. I am currently taking Lortab for pain, but it eventually wears off and I am stuck with my neck, shoulders, rist, hands, knee caps, upper back, ankles, and feet in exstruciating pain. I wish there was a neck operation, but everytime I ask about it the doctors shy away because of the risk involved.
I just needed to reach out to someone, and I did not know where else to go. I will admit that I do have thoughts of just throwing in the towel and quiting, and looking for anything to make the pain stop, but I will not let this disease have power over me. I will keep fighting in hopes that something will happen to at least give me part of my life back. Thank you for taking the time to read my post, and I hope that I will form many close friendships here.
|
|
|
|
