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?

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

I was diagnosed with RA in July. Would love to know if any one has tips on eating different foods to help with inflammation.

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@littlesassy

Would love to join in

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@littlesassy Welcome to Mayo Clinic Connect. We’re happy to have you and hope was can answer your questions. You asked about diet for autoimmune disorders. Many people swear by the Autoimmune Diet Protocol. I’ve not tried it so I can’t comment on its effectiveness.
https://www.healthline.com/nutrition/aip-diet-autoimmune-protocol-diet
As with most things, be sure to check with your doctor first. I have heard some people complaining about “leaky gut syndrome.”
You were diagnosed in July. Did you have symptoms for a long time before diagnosis? Have you been started on medication?
One more question: how did you find Mayo Clinic Connect?

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@becsbuddy

@littlesassy Welcome to Mayo Clinic Connect. We’re happy to have you and hope was can answer your questions. You asked about diet for autoimmune disorders. Many people swear by the Autoimmune Diet Protocol. I’ve not tried it so I can’t comment on its effectiveness.
https://www.healthline.com/nutrition/aip-diet-autoimmune-protocol-diet
As with most things, be sure to check with your doctor first. I have heard some people complaining about “leaky gut syndrome.”
You were diagnosed in July. Did you have symptoms for a long time before diagnosis? Have you been started on medication?
One more question: how did you find Mayo Clinic Connect?

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Hi. It started with a sore wrist, which I had problems with that on and off. My wrist was getting better but I woke up one day to swollen hands and feet. I couldn't lift anything with one hand. My fingers aches and I couldn't make a fist. After a week I finally went in to the doctor. Blood work, X-rays and off to Rochester.

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@obackus

I was diagnosed with RA and secondary Sjogren's in June 2023. I have been ill since October 2010 when I had an eye problem which was finally diagnosed in 2022 as an optic nerve bleed (I am told this has never been seen by top doctors in Boston???). I have had multiple tests, blood, scans, spinal taps, EMGs, you name it. After many years of being told I was crazy, I finally had a skin biopsy and have Small Fiber Polyneuropathy with Autonomic Disfunction (heart issues - Tachycardia, lung issues - frequent infections, IBS with severe constipation, neurogenic bladder - incontinence and retention) Every organ is being affected at this point. I am now suspected to have CVID - common variable immune deficiency. Things just keep coming. I am 53 and trying to work full-time, finish my Ph.D, and raise a family. A very long story - back to RA - I was taking Leflunomide which I was told was the best for me but it adversely affected my liver, and was recently switched to Hydroxychloroquine. I have been in chronic pain and illness for over 12 years with little help from multiple doctors and specialists. Any and all information about what others have experienced is welcome!

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I was diagnosed with RA after my second covid vaccine. I’m a couple years older than you. Athletic, fit. To painful and frail. I saw someone who hadn’t seen me in a year and they asked me “do you know where I can find Lisa?” A close friend said that she has watched me deteriorate. I tried to keep pushing. I have tried low dose prednisone, methotrexate and then humira. A few other less invasive meds. I’m taking narcotics to be able to move. I lost 15 pounds without trying and I was already lean. Currently on an anti inflammatory diet. Have been since December. I have no appetite due to the pain so it’s not hard to be on the diet. Because I was “normal” lol prior to the vaccines, my next step is to find a physician who is treating and studying long vax, vaccine injuries and long covid. I have been advised not to get boosted. I’m afraid it will do me in physically. I’m miserable. It’s hard for people to understand because other than being extremely underweight and unable to make plans, no one understands the pain and exhaustion involved. I got Covid earlier this year. No one believed me in a joking way because I mask at the pharmacy and have only been around people outside. I was put on paxlovid. I felt cruddy due to covid, but my RA symptoms greatly improved. It was oddly good. Came right back when I finished paxlovid. I have to say that the paxlovid kept the covid out of my lungs. My fever was gone within 24 hours, but I was just flattened. Another woman in the forum had the same experience. I will definitely post anything and everything that I learn. I’m a tough cookie with a high tolerance for pain. This is really hard. I get random rashes. A joint will blow up out of nowhere, lessen in severity of inflammation and then be ruined. Best to all dealing with this. I never imagined this happening.

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@lisajade4mayo

I was diagnosed with RA after my second covid vaccine. I’m a couple years older than you. Athletic, fit. To painful and frail. I saw someone who hadn’t seen me in a year and they asked me “do you know where I can find Lisa?” A close friend said that she has watched me deteriorate. I tried to keep pushing. I have tried low dose prednisone, methotrexate and then humira. A few other less invasive meds. I’m taking narcotics to be able to move. I lost 15 pounds without trying and I was already lean. Currently on an anti inflammatory diet. Have been since December. I have no appetite due to the pain so it’s not hard to be on the diet. Because I was “normal” lol prior to the vaccines, my next step is to find a physician who is treating and studying long vax, vaccine injuries and long covid. I have been advised not to get boosted. I’m afraid it will do me in physically. I’m miserable. It’s hard for people to understand because other than being extremely underweight and unable to make plans, no one understands the pain and exhaustion involved. I got Covid earlier this year. No one believed me in a joking way because I mask at the pharmacy and have only been around people outside. I was put on paxlovid. I felt cruddy due to covid, but my RA symptoms greatly improved. It was oddly good. Came right back when I finished paxlovid. I have to say that the paxlovid kept the covid out of my lungs. My fever was gone within 24 hours, but I was just flattened. Another woman in the forum had the same experience. I will definitely post anything and everything that I learn. I’m a tough cookie with a high tolerance for pain. This is really hard. I get random rashes. A joint will blow up out of nowhere, lessen in severity of inflammation and then be ruined. Best to all dealing with this. I never imagined this happening.

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Wow, you have been on a rough journey. Maybe ask your pharmacist what is in Paxlovid that would help you long term.

I am on hydroxychloroquine. It took 12 weeks to kick in but I am not prowling in pain when weather changes come through anymore.
Mediterranean/paleo diet. Fish oil supplements help. 2240 mg. Good multi vitamin. Collagen powder/probiotic. /100mg coq10.

Good Luck! I had horses for years. So sorry you are giving your riding up.

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@lisajade4mayo

I was diagnosed with RA after my second covid vaccine. I’m a couple years older than you. Athletic, fit. To painful and frail. I saw someone who hadn’t seen me in a year and they asked me “do you know where I can find Lisa?” A close friend said that she has watched me deteriorate. I tried to keep pushing. I have tried low dose prednisone, methotrexate and then humira. A few other less invasive meds. I’m taking narcotics to be able to move. I lost 15 pounds without trying and I was already lean. Currently on an anti inflammatory diet. Have been since December. I have no appetite due to the pain so it’s not hard to be on the diet. Because I was “normal” lol prior to the vaccines, my next step is to find a physician who is treating and studying long vax, vaccine injuries and long covid. I have been advised not to get boosted. I’m afraid it will do me in physically. I’m miserable. It’s hard for people to understand because other than being extremely underweight and unable to make plans, no one understands the pain and exhaustion involved. I got Covid earlier this year. No one believed me in a joking way because I mask at the pharmacy and have only been around people outside. I was put on paxlovid. I felt cruddy due to covid, but my RA symptoms greatly improved. It was oddly good. Came right back when I finished paxlovid. I have to say that the paxlovid kept the covid out of my lungs. My fever was gone within 24 hours, but I was just flattened. Another woman in the forum had the same experience. I will definitely post anything and everything that I learn. I’m a tough cookie with a high tolerance for pain. This is really hard. I get random rashes. A joint will blow up out of nowhere, lessen in severity of inflammation and then be ruined. Best to all dealing with this. I never imagined this happening.

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@lisajade4mayo. Welcome to Mayo Clinic Connect. I sure hope the members here will be able to help you. I honestly don’t know what to say about your condition. You’ve been to Stanford U. Hospital and no one was able to help you? Did you see an immunologist or a rheumatologist?
If you think that The Mayo Clinic would work for you, here is the web link:
https://mayocl.in/1mtmR63
Have you been to a long covid clinic in your area?

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I need help, after getting the covid moderna vaccine. I've been diagnosed with Rheumatoid Arthritis.. 3 months after taken the first 2, I could barely walk out of my full-time job. August 26, 2021. Still can't work. Hands and feet are terrible. I had to have an ablation on my left and right SI joint. I'm stiff everyday, fatigue, can barely get dressed. My husband has to help me.. Haven't been able to do nothing I use to. I've got a Rheumatologist here, but since need help. Anyone else have issues with the covid vaccines?

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Hola!
Posterior y relacionado a la vacunación, es bien conocido que se han reportado casos de endocarditis, especificamente, aunque recientemente he leido de relación con autoinmunidad en general.
No estas sola. Hay distintas perspectivas sobre la vacunación, pero lo que te ha sucedido también le ha pasado a otras personas y ya es un tema de estudio científico:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10108562/

Este es sobre la relacion de covid 19 y un POSIBLE efecto protector de la vacunación:
https://www.thelancet.com/journals/eclinm/article/PIIS2589-5370(23)00331-0/fulltext

En mi caso, fui diagnosticada con AR después del covid 19 ( al principio lo confundían con long covid, pero también esta documentado el potencial del SARS-CoV-2 como disparador de autoinmunidad). La AR es una enfermedad dificil y hay que aprender a vivir con ella: si, te cambia la vida…
En mi caso, al lado de mi tratamiento farmacológico, ha sido MUY IMPORTANTE hacer cambios en alimentación te recomiendo chequear en internet el “protocolo autoinmune” de la dra sara ballantyne (paleo mom). Consulta con tu profesional de la salud y considera hacerlo. Para mi fue definitivo para controlar inflamación (dolor y rigidez).
Te acompaño desde mi corazón y espero que puedas encontrar mejoría y tranquilidad pronto.

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@littlesassy

I was diagnosed with RA in July. Would love to know if any one has tips on eating different foods to help with inflammation.

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Hola!
Puedes consultar sobre “paleo mom” y protocolo autoinmune en internet. Consulta con tu nutricionista. A mi me ha servido mucho!

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