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.

Mentor
John, Volunteer Mentor | @johnbishop | Jul 23, 2022
In reply to @yelenik123 "Hello, My name is Lisa, I am 39yrs old, I am married and we have three..." + (show)
@yelenik123

Hello, My name is Lisa, I am 39yrs old, I am married and we have three children. I was diagnosed as Seronegative in 2015.

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Hi Lisa @yelenik123, Welcome to Connect. I'm tagging @lmoross @irishdoe and @tmtm4 who have posted about having Seronegative RA in other discussions and may have some thoughts or suggestions to share with you. Also, @colleenyoung shared an interesting post about number of patients with seronegative type RA here -- https://connect.mayoclinic.org/comment/649508/.

I'm not sure if you have seen this article but I thought it might be helpful if you are looking for more information.
-- Does Seronegative Rheumatoid Arthritis Exist?: https://www.healthline.com/health/rheumatoid-arthritis-seronegative-ra

Have you been on any treatments since you were diagnosed?

REPLY
1 reply
adlttl123 | @adlttl123 | Jul 23, 2022
In reply to @tmtm4 "The original neurosurgeon is very well-respected and one of the best in KC. He refused to..." + (show)
@tmtm4

The original neurosurgeon is very well-respected and one of the best in KC. He refused to fuse any of the three compressed discs including the one outside the curve because my back will collapse "in the near future" if he does. I went for a second opinion and he said, yes he can fuse the one on the outside.
I didn't understand how both docs had opposite opinions so I went to a third consult. Of course, he said they are are both right. He can fuse the one on the outside, but I will most likely need the "big" operation in the near future. That was two years ago. The thought of going into a hospital for a month w/another month upstairs in rehab makes me sick to my stomach. I do not think I would survive it.
After my last shoulder surgery, I told the home health nurse I don't know what my problem is. I start shaking and crying before going under for any type of surgery. It's embarrassing but I can't help it. She said I have PTSD from all the surgeries.

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So glad that you shared with us!! I can totally understand how you feel about having anxiety and fear or whatever your feelings are about going into surgery. In September of 2015 I went in to have female pelvic floor surgery and the doctor perforated my colon and put me in a stoma bag. It took several years to get over the physical and emotional trauma of that experience. How then can we just walk back into surgery. I was in surgery all day with 3 surgeons trying to fix me. Stick with us I love this group.

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1 reply
tmtm4 | @tmtm4 | Jul 24, 2022
In reply to @adlttl123 "So glad that you shared with us!! I can totally understand how you feel about having..." + (show)
@adlttl123

So glad that you shared with us!! I can totally understand how you feel about having anxiety and fear or whatever your feelings are about going into surgery. In September of 2015 I went in to have female pelvic floor surgery and the doctor perforated my colon and put me in a stoma bag. It took several years to get over the physical and emotional trauma of that experience. How then can we just walk back into surgery. I was in surgery all day with 3 surgeons trying to fix me. Stick with us I love this group.

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That's horrible! This is a good place to vent with no judgement. My kids do not like it if I complain at all so I just come here. 🙂
Prayers and comfort for you!

REPLY
1 reply
tmtm4 | @tmtm4 | Jul 24, 2022
In reply to @kanaazpereira "This is so great! Thank you so much for responding. The process is the same when..." + (show)
@kanaazpereira

This is so great! Thank you so much for responding.

The process is the same when following, joining and posting in any discussion thread; it's just that formerly, the RA discussions were mixed in with Chronic Pain, Bones, Joints & Muscles, Autoimmune Diseases, and conversations were getting scattered throughout the community.
This discussion or section of the community is dedicated to topics specifically related to rheumatoid arthritis.

Here's a quick refresher about posting your messages and joining in the discussion:

Click “DISCUSS” in the top navigation bar. Then select “Groups” from the drop-down menu.
Click a group that interests you, like Autoimmune Diseases.
Scroll to review a list of the most recent discussions.
Click the title of an interesting discussion, in this example, "Rheumatoid Arthritis (RA) - Introduce yourself and meet others."
This will take you to the discussion thread where you can read all of the comments.
To add your own comment, scroll to the bottom of the page and type your comment into the “Write your reply here…” box.
Once you have written your comment, click “POST REPLY.”
You can also reply directly to another member’s comment by clicking “REPLY” below their comment.

Please let me know if you have any other questions.
I look forward to connecting you with others, sharing insights, experiences, and suggestions about living with rheumatoid arthritis.

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Thank you! I think I already joined and have spoken with a number of people. IDK which group I am in but obviously RA, Osteoporosis, Scoliosis, severe arthritis throughout back and hands, and Depression/anxiety are my primary concerns.

REPLY
tmtm4 | @tmtm4 | Jul 24, 2022
In reply to @kozlo52 "If you are on plaquinil remember to have your eyes checked per the rheumatologist's recommendation. it..." + (show)
@kozlo52

If you are on plaquinil remember to have your eyes checked per the rheumatologist's recommendation. it can create eye problems....kozlo52

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I took Plaquenil for awhile and then had a severe reaction w/ hives. At the ER they thought I was going into Stevens-Johnson syndrome or Stevens Barr something. I'm not sure. I couldn't remember when I took Benadryl last so they hesitated to give me a shot or admit me. They finally gave me a shot-I've never had a shot that hurt that bad! By the next day it had calmed down but I had a pretty bad rash/hives for a month.

They got me into my RA doc the next day as an emergency appt and she said you don't look like you are going into SJS. I replied, "You should have seen me yesterday!" It was bad!

REPLY
adlttl123 | @adlttl123 | Jul 24, 2022
In reply to @tmtm4 "That's horrible! This is a good place to vent with no judgement. My kids do not..." + (show)
@tmtm4

That's horrible! This is a good place to vent with no judgement. My kids do not like it if I complain at all so I just come here. 🙂
Prayers and comfort for you!

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Thank you. My chip are the last people that I vent to.

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klw | @klw | Jul 26, 2022

Hi, I am really shy about introducing myself. I just never know what to say. I was diagnosed with seronegative RA last year (after 10 years of severe pain and chasing a diagnosis). I have gone to PT twice and both times helped, but I am not a home motivated person. (anyone else?). I walk my BIG but older dog just about every morning and go to yoga once a week. My diet is a mess - I have the palate of a 5 year old and am addicted to sugar. I had a reaction to Methotrexate and am now on leflunomide. I am a retired English teacher so you would think I had all the time in the world. The truth is the RA slows me down - a lot - some days the breaks are way longer than the do something time.

REPLY
evergreen2022 | @evergreen2022 | Jul 27, 2022
In reply to @johnbishop "Hi Lisa @yelenik123, Welcome to Connect. I'm tagging @lmoross @irishdoe and @tmtm4 who have posted about..." + (show)
@johnbishop

Hi Lisa @yelenik123, Welcome to Connect. I'm tagging @lmoross @irishdoe and @tmtm4 who have posted about having Seronegative RA in other discussions and may have some thoughts or suggestions to share with you. Also, @colleenyoung shared an interesting post about number of patients with seronegative type RA here -- https://connect.mayoclinic.org/comment/649508/.

I'm not sure if you have seen this article but I thought it might be helpful if you are looking for more information.
-- Does Seronegative Rheumatoid Arthritis Exist?: https://www.healthline.com/health/rheumatoid-arthritis-seronegative-ra

Have you been on any treatments since you were diagnosed?

Jump to this post

I am so glad to find this group. I was diagnosed two years ago by a man who is a wonderful person as well as an exceptional rheumatologist. Unfortunately, he left the practice and I was shifted to a kind young woman. However, she does not believe in the SerumNegative test. She believes if the ANA and other tests are not positive you do not have RA. Also, he had prescribed Methotrexate which made me feel better, with no side effects, and she removed it. His office is on my health plan but it takes about two hours to get there and I no longer drive. However, I finally just this week decided, that I am going back to him. These days there are telehealth visits available and I hope after one or two visits to help me get back on track, I can go to those. It just isn't worth it to suffer and also to be wondering who was right. So, I hope all of us find physicians who believe in us. I cannot get in to see him until October but, I wasn't seeing the other one anyway! Fingers crossed for all of you.

REPLY
1 reply
suzcape | @suzcape | Aug 1, 2022
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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I was the diagnosis gift of RA in June 2022. Sudden onset that progressed over month or so previous. Rt Ankle, L knee, wrists, R knee built up to every joint. Rheumatologist came thru w/ Methylprednisolone 4mg Hydroxychloroquine 200mg. Hydrox aft 3 wks gave allergic reaction (not fun). Plans to change meds. So far no pain. Pred was increased short term - makes me energized, have clean house. No like steroids though. Thats my story do far. Never knew anyone who had RA.

REPLY
1 reply
mnmimi | @mnmimi | Nov 1, 2022

I just found this link after joining the Autoimmune group. I am a 69-year-old woman with rheumatoid arthritis for more than 40 years. My symptoms are well managed with sulfasalazine, methotrexate, celebrex, and I can be as active as I choose to be. Last winter I began having severe chest pain and tightness/squeezing that woke me up in the night. This happened several times a month. Alway when I was sound asleep. The discomfort lasted for several hours.My Primary found nothing with EKG and chest x-ray. My rheumatologist ordered a prescription anti-acid to address issues of GERD. I was symptom-free for several months. Recently, the same experience has been occurring again. In these episodes I have no shortness of breath, radiating pain, sweating, nausea, and my blood pressure and pulse are normal. I am at low risk for heart issues due to no family history, low cholesterol, and low blood pressure. I feel something is not right but I also don’t want to panic. Anyone with a similar history?

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