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.

leigh17 | @leigh17 | Apr 21 8:08am

Thank you I think this will be helpful to several of us who or I guess you could say are on the RA spectrum . I am not testing for RA, but I have high levels of collagen type two antibodies that are found in RA. It’s attacking my cartilage, has caused excessive inflammation throughout my body so I have had five spinal fusions , two shoulder replacements. The first one failed and the second one the disease attacked the tendon and I could no longer open doors. It appears there’s a tear in the shoulder now and I have to see orthopedic in May to see what we do.. I just started treatment with Actemra infusions but it’s only been three months and we’re not seeing any improvement yet. Having bloodwork done in two months to see if the levels have come down. I’m hoping someone will post something about this as well. I did post several months ago but didn’t get any responses so thank you so much for putting this on here in this type of format.

sbcher | @sbcher | May 29 8:33am

hello, I would love to be part of the group.

clover52 | @clover52 | May 29 9:45am

Hi I have RA and have for a lot of years. No one really understands the pain or even think you have it until the deformation starts. That’s why I am so glad this group
Has been started. Is anyone on long term disability?

pb50 | @pb50 | May 29 3:12pm

I’ve had RA for 12 years - initially sero negative, I am now sero positive. My initial symptoms were terrible - more like PMR in that large joints were involved and joint and muscle
Weakness was profound. I was started on Humira and went through that, Enbrel, and since 2019, Remicade infusions every six weeks.

But I am so much more intact and ‘able’ than so many and am grateful.

It’s an is. Some days are better, some worse. Ive had four trigger finger release surgeries. I just had injection #3 on one finger- the most i can have. So i will see if that holds or surgery is in my future again.

Many people have it so much worse. I’m blessed to always have had a Doc - five along the way, and I only kicked out one and that was in the first meeting. The rest fought to get the best treatment option for me approved.

Common RA story I expect.

Becky, Volunteer Mentor | @becsbuddy | May 29 4:47pm

In reply to @sbcher "hello, I would love to be part of the group." + (show)

@sbcher Welcome, you’re a member of this group just because you posted here! You can join any group any time! I would suggest that you read some of the older posts just to get an idea of what everyone goes through on their RA journey.
Do you have RA? If so, what treatment are you on?

denverni | @denverni | May 30 7:46am

Hi, I am Nancy. I have had RA for 27 years. I am very fatigued. I have taken all the medicines and infusions. Next is a JAK inhibitor. I am hopeful. Thank you.

sbcher | @sbcher | May 30 8:18am

In reply to @becsbuddy "@sbcher Welcome, you’re a member of this group just because you posted here! You can join..." + (show)

Thank you Becky! I was dianosed with R/A in my late 50s. Wrist & hands. All the drugs I've tried have not helped. Currently on Methotrexate 2.5 4 pills a week. It seems to be tearing up my stomach, not much relief in my joints.

Looks for other treatments and help that others have experienced.

catartist | @catartist | May 30 9:32am

In reply to @becsbuddy "@sbcher Welcome, you’re a member of this group just because you posted here! You can join..." + (show)

I will read - after 35 years of steroid daily for ( negative) RA pain I am now ‘dissolving - muscles - and weight - and wondering if any one else is experiencing this. So need info - Drs not overly helpful. Best!