1. < Autoimmune Diseases

Rheumatoid Arthritis (RA) - Introduce yourself and meet others

Posted by Kanaaz Pereira, Connect Moderator @kanaazpereira, Mar 30, 2017

Let's talk about living with rheumatoid arthritis.
As moderator of the Autoimmune Diseases group, I noticed that several people were talking about RA, but those conversations were scattered throughout the community. I thought I would start this discussion to bring us all together in one place.

Let’s grab a cup of tea, or beverage of choice, and let's chat. Why not start by introducing yourself?

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

fannie | @fannie | Nov 20, 2019
In reply to @becsbuddy "@fannie Did you have all these symptoms before you had stents put in your legs? Did..." + (show)
@becsbuddy

@fannie Did you have all these symptoms before you had stents put in your legs? Did the doctors or nurses comment on your symptoms? Maybe you could ask your doctor if the stents are causing your problems, especially as you say you are allergic to nickel. Could you make an appointment with your doctor and ask if it’s possible? Let us know

Jump to this post

No, I didn't have any of these symptoms before having the stents put in. My allergist, or my family Dr seem to think my problems aren't coming from my stents. This is why they recommended a Rheumatologist. With testing positive for autoimmune disease...this is what they are inclined to believe, but still they (rheumatologist) haven't been able to diagnose exactly what it is. I'm confused, concerned & trying on my own to find out what's going on with my body.
Thanks for your concerns!!

REPLY
3 replies
kozlo52 | @kozlo52 | Nov 20, 2019
In reply to @fannie "No, I didn't have any of these symptoms before having the stents put in. My allergist,..." + (show)
@fannie

No, I didn't have any of these symptoms before having the stents put in. My allergist, or my family Dr seem to think my problems aren't coming from my stents. This is why they recommended a Rheumatologist. With testing positive for autoimmune disease...this is what they are inclined to believe, but still they (rheumatologist) haven't been able to diagnose exactly what it is. I'm confused, concerned & trying on my own to find out what's going on with my body.
Thanks for your concerns!!

Jump to this post

when you say you tested positive for RA, does this mean that your rheumatoid factor was positive? what was your "sed rate"? do you have a lot of joint pain? have you been tested for Lyme disease? do you have swelling of the joints?.......kozlo52

REPLY
kozlo52 | @kozlo52 | Nov 20, 2019
In reply to @becsbuddy "@fannie Did you have all these symptoms before you had stents put in your legs? Did..." + (show)
@becsbuddy

@fannie Did you have all these symptoms before you had stents put in your legs? Did the doctors or nurses comment on your symptoms? Maybe you could ask your doctor if the stents are causing your problems, especially as you say you are allergic to nickel. Could you make an appointment with your doctor and ask if it’s possible? Let us know

Jump to this post

when you say you are allergic to nickel, did an allergist skin test you for this or was this from bloodwork?....kozlo52

REPLY
boomerexpert | @boomerexpert | Nov 20, 2019

I am RF negative; know it's RA from the kind of damage to my hands/feet, and a node was removed and analyzed

REPLY
Ethan McConkey, Moderator | @ethanmcconkey | Nov 20, 2019
In reply to @fannie "No, I didn't have any of these symptoms before having the stents put in. My allergist,..." + (show)
@fannie

No, I didn't have any of these symptoms before having the stents put in. My allergist, or my family Dr seem to think my problems aren't coming from my stents. This is why they recommended a Rheumatologist. With testing positive for autoimmune disease...this is what they are inclined to believe, but still they (rheumatologist) haven't been able to diagnose exactly what it is. I'm confused, concerned & trying on my own to find out what's going on with my body.
Thanks for your concerns!!

Jump to this post

Hi @fannie here are a few discussions on undiagnosed autoimmune diseases that I thought may be helpful:

Undiagnosed Autoimmune with back pain, spasms, and stiffness: https://connect.mayoclinic.org/discussion/undiagnosed-autoimmune/
Undiagnosed and don’t know where to go next: https://connect.mayoclinic.org/discussion/undiagnosed-and-dont-know-where-to-go-next/
Autoimmune mystery: https://connect.mayoclinic.org/discussion/autoimmune-mystery/

REPLY
kimdett | @kimdett | Nov 28, 2019

Hi everyone! I am 54 and was just diagnosed with palindromic rheumatism also called seronegative rheumatoid arthritis. I have had 3 flare ups and these include painful and swollen hands and wrists and feet. Also have pleurisy. Started taking plaquenil at the beginning of November. Hasn’t helped yet. Also prescribed prednisone to help with flare ups. The difference between RA and what I have is I go back to completely normal between flare ups. But it can turn into RA eventually. Anyone else out there have palindromic rheumatism?

REPLY
3 replies
Mentor
John, Volunteer Mentor | @johnbishop | Nov 28, 2019
In reply to @kimdett "Hi everyone! I am 54 and was just diagnosed with palindromic rheumatism also called seronegative rheumatoid..." + (show)
@kimdett

Hi everyone! I am 54 and was just diagnosed with palindromic rheumatism also called seronegative rheumatoid arthritis. I have had 3 flare ups and these include painful and swollen hands and wrists and feet. Also have pleurisy. Started taking plaquenil at the beginning of November. Hasn’t helped yet. Also prescribed prednisone to help with flare ups. The difference between RA and what I have is I go back to completely normal between flare ups. But it can turn into RA eventually. Anyone else out there have palindromic rheumatism?

Jump to this post

Hello @kimdett, Welcome to Connect. I'm sorry to hear the plaquenil hasn't helped yet with the flare ups yet. Did your doctor or rheumatologist say anything about how long it might take for the drug to start working or if there might be another treatment that might help?

I found the following articles on Palindromic Rheumatism treatments and things that may be helpful:

Arthritis Foundation -- https://www.arthritis.org/about-arthritis/types/palindromic-rheumatism/

Palindromic rheumatism - Arthritis Care (PDF) -https://www.arthritiscare.org.uk/assets/000/001/856/Palindromic_2017_Update_original.pdf

PubMed -- Palindromic rheumatism: effect of dietary manipulation.
-- https://www.ncbi.nlm.nih.gov/pubmed/10895376

REPLY
1 reply
kimdett | @kimdett | Nov 28, 2019
In reply to @johnbishop "Hello @kimdett, Welcome to Connect. I'm sorry to hear the plaquenil hasn't helped yet with the..." + (show)
@johnbishop

Hello @kimdett, Welcome to Connect. I'm sorry to hear the plaquenil hasn't helped yet with the flare ups yet. Did your doctor or rheumatologist say anything about how long it might take for the drug to start working or if there might be another treatment that might help?

I found the following articles on Palindromic Rheumatism treatments and things that may be helpful:

Arthritis Foundation -- https://www.arthritis.org/about-arthritis/types/palindromic-rheumatism/

Palindromic rheumatism - Arthritis Care (PDF) -https://www.arthritiscare.org.uk/assets/000/001/856/Palindromic_2017_Update_original.pdf

PubMed -- Palindromic rheumatism: effect of dietary manipulation.
-- https://www.ncbi.nlm.nih.gov/pubmed/10895376

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Thank you! Just having a look now.

REPLY
Mentor
Becky, Volunteer Mentor | @becsbuddy | Nov 29, 2019
In reply to @fannie "No, I didn't have any of these symptoms before having the stents put in. My allergist,..." + (show)
@fannie

No, I didn't have any of these symptoms before having the stents put in. My allergist, or my family Dr seem to think my problems aren't coming from my stents. This is why they recommended a Rheumatologist. With testing positive for autoimmune disease...this is what they are inclined to believe, but still they (rheumatologist) haven't been able to diagnose exactly what it is. I'm confused, concerned & trying on my own to find out what's going on with my body.
Thanks for your concerns!!

Jump to this post

@fannie What have you been able to learn about all your symptoms? What has the rheumatologist said?

REPLY
1 reply
kimdett | @kimdett | Nov 30, 2019
In reply to @becsbuddy "@fannie What have you been able to learn about all your symptoms? What has the rheumatologist..." + (show)
@becsbuddy

@fannie What have you been able to learn about all your symptoms? What has the rheumatologist said?

Jump to this post

All of my symptoms point to sero negative rheumatoid arthritis (or also called palindromic rheumatism). I have had swollen and painful hands and wrists, swollen feet, sometimes in my shoulders too. First flare up was in 2012 and lasted about a month. Totally went away and I had no idea what it was then. Then 2nd flare up was this past May and it lasted for 8 weeks. Then the 3rd flare up started mid-October of this fall. That's when I was diagnosed. Another symptom that happened with 2nd and 3rd flare up was pain in my chest when breathing in deeply. Spent a day in emerg a week ago and I suspected it was pleurisy and was right. Got a cat scan and found out there is fluid build up on the bottom of my lungs and on the left side. T

Very frustrated with my rheumatologist because they never answer their phones and take forever to call you back after leaving a message. After this episode of being in emerg and finding out I have pleurisy which is caused by PR, he just put me back on 5ml of prednisone. Hopefully that helps ... when it comes to my lungs I don't want to mess with this. I don't want to be on prednisone for too long but my blood test show that my inflammation is very high.

I have been on Plaquenil since the beginning of November and that can take a while to start to help.

REPLY
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