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.

candrgonzalez | @candrgonzalez | Dec 1, 2019
In reply to @kanaazpereira "Hello @gizmanbarb, Welcome to Connect; thank you so much for introducing yourself and joining the group...." + (show)
@kanaazpereira

Hello @gizmanbarb,

Welcome to Connect; thank you so much for introducing yourself and joining the group.

Although for different conditions, we have quite a few members who have used methotrexate; @jerseygirl926, @crhp194, @lisa_sj99, @lorrainechavez, @debcha, @sherw, @emmur16, @sallyann, @luladavis, @rosestea, @julied838, @mswanda, @djfd @amkaloha @taterjoy @lisabeans @zenk @jewel8888 @smgarner1 would you share your experience with this drug?

You may also wish to view these discussions, and tag members there for more insight:
I'm looking for information on Methotrexate for Autoimmune Diseases: http://mayocl.in/2h2kHZY
Is it possible to go off RA drugs by following a plant based diet: http://mayocl.in/2oJgPDN
Side affects from Anastrozole and MCTD leaves my body achey: http://mayocl.in/2p6loo8

@guzmanbarb, what side effects are you experiencing? Has your physician offered other medications to relieve the pain?

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I was diagnosed with RA in 2003 and was given Methotrexate- I took the medication once a week for about 9 years (off and on). I experienced nausea, no appetite, headache and light sensitivity for about 24- hours after taking the medication (also my mood was very sad- maybe from the side effects). My Rheumatologist had me tried different medications throughout the years but they did not helped with the pain, stiffness and fatigue. I was prescribed Xeljanz 10mg in 2014 (I was and still am scared about the long term side effects but it does help me and I only take 5mg daily- I have no side effects from it. I do still get flares, joint stiffness, pain, swelling- but much tolerable. On my last appointment he said he may increase it to 10mg if my flares were not under good control. The long term side effects from this medicine do scare me (that's why I only take 5mg). I have an appt in 2 week- I hope my inflammatory markers are ok. As far as Methotrexate I really don't think it helped with my RA symptoms and having the side effects every week was not a good thing.

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Dec 1, 2019
In reply to @kimdett "All of my symptoms point to sero negative rheumatoid arthritis (or also called palindromic rheumatism). I..." + (show)
@kimdett

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.

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@kimdett you have mentioned flare ups with this PR. And also pleurisy with fluid in the lungs. Did the ER do anything to address the fluid buildup? You say that pleurisy can be caused by PR, but is there anything that you can do to prevent it or catch it much earlier?

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kimdett | @kimdett | Dec 1, 2019

No the ER doctor said since he’s not a rheumatologist he didn’t know how to treat it and wanted me to follow up with my rheumatologist

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1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Dec 2, 2019
In reply to @kimdett "No the ER doctor said since he’s not a rheumatologist he didn’t know how to treat..." + (show)
@kimdett

No the ER doctor said since he’s not a rheumatologist he didn’t know how to treat it and wanted me to follow up with my rheumatologist

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@kimdett I’m feeling confused! You’re not getting much help or information, it seems. Have you given any thought to seeing a pulmonologist (a lung specialist)?

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1 reply
kimdett | @kimdett | Dec 4, 2019
In reply to @becsbuddy "@kimdett I’m feeling confused! You’re not getting much help or information, it seems. Have you given..." + (show)
@becsbuddy

@kimdett I’m feeling confused! You’re not getting much help or information, it seems. Have you given any thought to seeing a pulmonologist (a lung specialist)?

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I am confused too! Looking for answers and might get referred to a different rheumatologist if I don't get answers at
my next appointment

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bella2 | @bella2 | Feb 26, 2020
In reply to @kanaazpereira "Hello @kozlo52 @blindeyepug @barneythe2nd @nanke99 @vickiekay @tbeckys @iman_im @lisa_sj99 @1825 @callyrae @jewel8888 @boomerexpert, I'd like to..." + (show)
@kanaazpereira

Hello @kozlo52 @blindeyepug @barneythe2nd @nanke99 @vickiekay @tbeckys @iman_im @lisa_sj99 @1825 @callyrae @jewel8888 @boomerexpert,

I'd like to invite you to this new discussion about rheumatoid arthritis, where it will be easier for you to meet other Connect members living with, and talking about RA. Pull up a chair and tell us a bit about yourself.

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Hello, excited to join this group. I have had RA since 2007. I have had a difficult coarse. Multiple other health issues dealing with in regards to my RA.

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1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Feb 26, 2020
In reply to @bella2 "Hello, excited to join this group. I have had RA since 2007. I have had a..." + (show)
@bella2

Hello, excited to join this group. I have had RA since 2007. I have had a difficult coarse. Multiple other health issues dealing with in regards to my RA.

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Welcome to Connect @bella2 ! I’m glad you found us. We all try to answer questions and give support bases on our own health experiences/journeys. Hope we can help and maybe you can help others!

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hros | @hros | Feb 28, 2020

Thanks. Hope to have some good ideas and learn some things too.

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djfd | @djfd | Mar 2, 2020
In reply to @jewel8888 "I appreciate being added, thank you. Hi im Julie, ive had a lot of health concerns..." + (show)
@jewel8888

I appreciate being added, thank you. Hi im Julie, ive had a lot of health concerns this past year. RA is very painful at times. Methotrexate really helps with my joints and fatigue. I do not have rheumatoid factor and also have psoriatic arthritis and lupus. i like the good days and enjoy walks on the beach with my hubby and dog Roxi. Looking forward to discussions with you all.
Julie

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I have psoriasis and psoriatic arthritis. I have had no rheumatoid factor but not diagnosed with RA. I also keep getting told that I possibly have lupus, but so far keep testing negative. I also have uveitis in both eyes and have lost peripheral vision. Right now I have to say eyes are the worst, worried about going blind as I have been told that is possiblity of psoriatic arthritis isn't gotten under control. Going to eye specialist Wednesday.

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