Rheumatoid Arthritis (RA) - Introduce yourself and meet others

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?

I have had RA for 23 years. I am on mtx, biologic, mobic. Things seem to be progressing and I find that there are days when it takes till dinner time for me to feel okay. Anyone else found this to be true?

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since you are on the meds you describe make sure you get bloodwork to check your liver enzynes and to do urinanalysis to make sure your kidneys are functioning properly because of mobic. Mtx was a chemo drug from the 1940's to fight cancer, which may cause the "run down" feeling. also make sure you take a good probiotic for your digestive track…..kozlo52

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@mam4252

Thanks for your input. We are in the process of getting an appointment with Mayo.

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We have completed the process and have an appointment in Rochester. Thanks for your help along the way!

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My name is Anna. I am 75 and live in NYC but lived and taught many years in the Twin cities. I was diagnosed with MGUS (monoclonal gammopathy of unspecified significance) – a mild case — 3 years ago. And then this year diagnosed with mild RA mainly bothering me in my right foot. Given that the RA is mild, the doctor is having me go on the auto immune protocol diet which seems to be working to help. My big problem has been infections. I was hospitalized with cellulitis in May (granted the doctor failed to diagnose an infection in my ankle) and then got the superbug C. Difficile this past January. The infectious disease specialist and the GI doctor say that both MGUS and RA weaken immunity. I was told that because of these two conditions, even though I have them mildly, " your immunity is weak". Are you all experiencing infections? Has your immunity been weakened by RA?

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@annapocono

My name is Anna. I am 75 and live in NYC but lived and taught many years in the Twin cities. I was diagnosed with MGUS (monoclonal gammopathy of unspecified significance) – a mild case — 3 years ago. And then this year diagnosed with mild RA mainly bothering me in my right foot. Given that the RA is mild, the doctor is having me go on the auto immune protocol diet which seems to be working to help. My big problem has been infections. I was hospitalized with cellulitis in May (granted the doctor failed to diagnose an infection in my ankle) and then got the superbug C. Difficile this past January. The infectious disease specialist and the GI doctor say that both MGUS and RA weaken immunity. I was told that because of these two conditions, even though I have them mildly, " your immunity is weak". Are you all experiencing infections? Has your immunity been weakened by RA?

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I have RA which is also considered mild and fibro. My immune system is very weak. I get sinus infections and bronchitis constantly especially in the winter. It is horrible.

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@annapocono

My name is Anna. I am 75 and live in NYC but lived and taught many years in the Twin cities. I was diagnosed with MGUS (monoclonal gammopathy of unspecified significance) – a mild case — 3 years ago. And then this year diagnosed with mild RA mainly bothering me in my right foot. Given that the RA is mild, the doctor is having me go on the auto immune protocol diet which seems to be working to help. My big problem has been infections. I was hospitalized with cellulitis in May (granted the doctor failed to diagnose an infection in my ankle) and then got the superbug C. Difficile this past January. The infectious disease specialist and the GI doctor say that both MGUS and RA weaken immunity. I was told that because of these two conditions, even though I have them mildly, " your immunity is weak". Are you all experiencing infections? Has your immunity been weakened by RA?

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Hi Anna, I did not know that ones immunity is weakened simply by having RA . I thought that immunity was lowered by taking immune suppressive drugs for the disease. Would love to get that straight . I have Sjogrens and other UDCT diseases. Zenk

Liked by Lyn

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@annapocono

My name is Anna. I am 75 and live in NYC but lived and taught many years in the Twin cities. I was diagnosed with MGUS (monoclonal gammopathy of unspecified significance) – a mild case — 3 years ago. And then this year diagnosed with mild RA mainly bothering me in my right foot. Given that the RA is mild, the doctor is having me go on the auto immune protocol diet which seems to be working to help. My big problem has been infections. I was hospitalized with cellulitis in May (granted the doctor failed to diagnose an infection in my ankle) and then got the superbug C. Difficile this past January. The infectious disease specialist and the GI doctor say that both MGUS and RA weaken immunity. I was told that because of these two conditions, even though I have them mildly, " your immunity is weak". Are you all experiencing infections? Has your immunity been weakened by RA?

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@annapocono yes…all w/RA have a compromised immune system

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@zenk

Hi Anna, I did not know that ones immunity is weakened simply by having RA . I thought that immunity was lowered by taking immune suppressive drugs for the disease. Would love to get that straight . I have Sjogrens and other UDCT diseases. Zenk

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@zenk – my understanding is the same as yours. ie. that RA is caused by an over-active immune system and therefore the treatment is immuno-suppressant medication. The result can be weakened or compromised immunity. I think everyone is individual, though. For me — even though I'm taking a bucket of drugs — my immunity has pretty much just come back to what would be considered 'normal'. I don't seem to catch colds or illnesses any more easily than anyone else. The biggest issue I have is that if I DO catch something I have to stop my biologic and so am doubly miserable! 🙂 That's the main reason I avoid places where catching something is more likely (public transport, hospitals, large crowds, kids with bugs).

Liked by Lyn

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@mam4252

I have had RA for 23 years. I am on mtx, biologic, mobic. Things seem to be progressing and I find that there are days when it takes till dinner time for me to feel okay. Anyone else found this to be true?

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I'm not quite sure where to jump into this group. But I need some help and information. I came down with what I feel is Lyme Disease 10 months ago. I have had ove 100 viles of blood taken in that time. Still they have found nothing untl last week. They did a Rheumatoid Factor Blood screening. Finally something came up. But my Neurogist dosen't know what it is. I have an aapt. with a Rheumologist in a month. My Rheumatoid Factor is 71UI/ml. Normal is 15IU/ml.
Can anybody out there let me know what this may mean?
Thanks,
Sundance

Liked by Lyn

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@sundance6

I'm not quite sure where to jump into this group. But I need some help and information. I came down with what I feel is Lyme Disease 10 months ago. I have had ove 100 viles of blood taken in that time. Still they have found nothing untl last week. They did a Rheumatoid Factor Blood screening. Finally something came up. But my Neurogist dosen't know what it is. I have an aapt. with a Rheumologist in a month. My Rheumatoid Factor is 71UI/ml. Normal is 15IU/ml.
Can anybody out there let me know what this may mean?
Thanks,
Sundance

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Hi @sundance6, I think Rheumatoid Factor is just one piece of diagnosing rheumatoid arthritis. Here is a little information I found that may explain it a better.

Understanding Rheumatoid Arthritis Lab Tests and Results
https://www.hss.edu/conditions_understanding-rheumatoid-arthritis-lab-tests-results.asp

RF Test: What is the Normal Range for a Rheumatoid Factor Test?
https://www.rheumatoidarthritis.org/ra/diagnosis/rheumatoid-factor/

Hope you can share the results of your upcoming meeting with the rheumatologist.

Liked by Lyn

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@sundance6

I'm not quite sure where to jump into this group. But I need some help and information. I came down with what I feel is Lyme Disease 10 months ago. I have had ove 100 viles of blood taken in that time. Still they have found nothing untl last week. They did a Rheumatoid Factor Blood screening. Finally something came up. But my Neurogist dosen't know what it is. I have an aapt. with a Rheumologist in a month. My Rheumatoid Factor is 71UI/ml. Normal is 15IU/ml.
Can anybody out there let me know what this may mean?
Thanks,
Sundance

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You have RA

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Thank You John. That is a start!
Sundance

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71

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@lisaangela

I’m looking for some direction, guidance, info help. So here is my story. I am currently 52 years old. (Female) Up until 2013 I felt healthy, no issues with arthritis etc. I started doing CrossFit in 9/13. (I was 46 years old) I loved doing it, lost weight, felt great, got into great shape. But shortly after startung CrossFit my hips started to hurt. I thought it was just muscle aches etc. kept going. I began limping, pain etc. In 2015 I saw an orthopedic who gave me some injections and suggested I had tendinitis, and arthritis. But the pain just kept getting worse. By 4/16 I decided to see another orthopedic. After X-rays and MRI I found out I had a torn labrum and bone on bone arthritis. I had my first hip replacement in 9/16. Three years after starting CrossFit! In 5/17 I had my second hip replacement. In 5/18 ai could barely use my shoulder, went to the orthopedic, discovered I was totally bone on bone arthritis and I had a total shoulder replacement. Since then slowly all of my joints are being destroyed. Currently I need my right thumb joint replaced. My hands ache horribly. My ankles hurt. My neck hurts. I have radiating pain in different joints at different times. I feel like a mess. I have horrible inflammation in my body everyday. I never knew what inflammation was until 2013. If I do any heavy duty house work or exercise I am in pain for 3 days.Two years ago I found my biological mother. I am adopted. She has had rheumatoid arthritis since she was 30 and encouraged me to see a rheumatologist. She informed me that she has tested serum negative for rheumatoid arthritis all her life, but has the diagnosis and is on meds. I decided to see a rheumatologist last summer. After looking at my records and examining me he informed me that he thought I had severe osteoarthritis. He recommended that I keep taking my anti inflammatory and return of my symptoms worsen. He didn’t test my blood. I felt frustrated and uncertain as to what to do next. I continue to take anti-inflammatory medication but my joints keep getting worse. I also have inflammation in my eyes now. I’m much more tired and overwhelmed. I’ll just add that I have been a counselor for 22 years and do not have a physically stressful job. I sit and talk to my clients. I am completely baffled by what is happening to my body and need some help! Any information Or suggestions would be great! I am considering going to another rheumatologist for a second opinion. Any recommendations in the Buffalo area would be appreciated. Thanks for listening. Lisa

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@lisaangela Welcome to connect we aren't Drs but help with our experience .With all you have are you under. Dr ,s care ?If not you need to see a rheumatologist Good luck I hope you post again

Liked by Lyn

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@lisaangela

I’m looking for some direction, guidance, info help. So here is my story. I am currently 52 years old. (Female) Up until 2013 I felt healthy, no issues with arthritis etc. I started doing CrossFit in 9/13. (I was 46 years old) I loved doing it, lost weight, felt great, got into great shape. But shortly after startung CrossFit my hips started to hurt. I thought it was just muscle aches etc. kept going. I began limping, pain etc. In 2015 I saw an orthopedic who gave me some injections and suggested I had tendinitis, and arthritis. But the pain just kept getting worse. By 4/16 I decided to see another orthopedic. After X-rays and MRI I found out I had a torn labrum and bone on bone arthritis. I had my first hip replacement in 9/16. Three years after starting CrossFit! In 5/17 I had my second hip replacement. In 5/18 ai could barely use my shoulder, went to the orthopedic, discovered I was totally bone on bone arthritis and I had a total shoulder replacement. Since then slowly all of my joints are being destroyed. Currently I need my right thumb joint replaced. My hands ache horribly. My ankles hurt. My neck hurts. I have radiating pain in different joints at different times. I feel like a mess. I have horrible inflammation in my body everyday. I never knew what inflammation was until 2013. If I do any heavy duty house work or exercise I am in pain for 3 days.Two years ago I found my biological mother. I am adopted. She has had rheumatoid arthritis since she was 30 and encouraged me to see a rheumatologist. She informed me that she has tested serum negative for rheumatoid arthritis all her life, but has the diagnosis and is on meds. I decided to see a rheumatologist last summer. After looking at my records and examining me he informed me that he thought I had severe osteoarthritis. He recommended that I keep taking my anti inflammatory and return of my symptoms worsen. He didn’t test my blood. I felt frustrated and uncertain as to what to do next. I continue to take anti-inflammatory medication but my joints keep getting worse. I also have inflammation in my eyes now. I’m much more tired and overwhelmed. I’ll just add that I have been a counselor for 22 years and do not have a physically stressful job. I sit and talk to my clients. I am completely baffled by what is happening to my body and need some help! Any information Or suggestions would be great! I am considering going to another rheumatologist for a second opinion. Any recommendations in the Buffalo area would be appreciated. Thanks for listening. Lisa

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Hello Lisa @lisaangela, welcome to Connect. I can understand your frustration trying to get a diagnosis and a treatment that helps. There is another discussion here on Connect where your post may receive move visibility. I'm tagging our moderator @ethanmcconkey to see if we should move your post to the following discussion.

> Groups > Autoimmune Diseases > Rheumatoid Arthritis (RA) – Introduce yourself and meet others
https://connect.mayoclinic.org/discussion/rheumatoid-arthritis-ra-introduce-yourself-and-meet-others/

I'm not sure if it is an option for you but if it is and you would like get a second opinion from Mayo Clinic, you can find the contact information for the Minnesota, Arizona and Florida campuses here http://mayocl.in/1mtmR63.

Liked by Lyn

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