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.

Funcountess | @funcountess | Oct 5, 2020
In reply to @djfd "Another very important thing you will need to do if you go on biologics is to..." + (show)
@djfd

Another very important thing you will need to do if you go on biologics is to check with your pharmacist and have them check all your medications to make sure they can be taken with your biologic, many combinations can be deadly, especially prednisone. I found out that is deadly combination with Remicade. You also need to check with pharmacist anytime you are put on new medication. It is a double check in case your md misses it (they make mistakes to). I just try to do it when pharmacy isn't busy as it can take time sometimes but is well worth it. Better safe than sorry.

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Good advice, when taking medicine, you can never be too careful.

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darkarta | @darkarta | Oct 20, 2020

I am living in Canada.i thought I had PMR because the symptoms came on literally over night.However it seems like there is fluid in shoulders and hands.I just started meds yesterday.Would like to hear from others with this type of over-lap and what meds,how are you doing.Thank you.

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runwthme | @runwthme | Oct 21, 2020

Hi, I am new posting to this group and have a few questions about symptoms I have. Two weeks ago I woke up to small bumps on the top of my hands up to my wrists. Also, my joints on my hands were very sore. The bumps were under the skin so you couldn’t quite see, but definitely feel. Started out on top of my thumb area and eventually spread to the whole top. Not red, nor swollen. I’ve been on plaquenil for about 7 months for undifferentiated CTD and I think helps a bit. Also, the last month, I developed severe squeezing pain around my ribs. Hurt to twist, take a deep breath etc. Also, after a few hours in bed, my spine becomes so painful, top to bottom, as though I’ve been in a vice. Anyone else with these symptoms to add to the bunch?

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clpd13 | @clpd13 | Oct 25, 2020
In reply to @dinym "I have been diagnosed with RA in the last fortnight after thinking I had PMR over..." + (show)
@dinym

I have been diagnosed with RA in the last fortnight after thinking I had PMR over the last 16 months. Couldn't get the prednisolone meds down below 7.5 mg and wasn't holding the pain. Then 8 weeks ago after my index finger was swollen, suddenly had extreme pain in both hands and wrists. Couldn't drive, which is rather essential where I live. Now being weaned of Prednisolone and taking 10 mg once a week of methotrexate with a folic acid tablet each day after the Methotrexate for 2 days to counter any side effects. So far so good.
Have read a paper that says there is evidence RA is " likely caused by Proteus asymptomatic urinary tract infections". ( 2011 Rashid and Ebringer Autoimmunity in Rheumatic Diseases is induced by Microbial Infections via Crossreactivity or Molecular Mimicry) . Does anyone know more about this and if any treatments have been tried for this Microbe? I will bring this up with my rheumatologist at my next visit in June. Also can RA go into remission or is there always pain somewhere? Thanks for this Forum! Got a lot of learning about RA to do.

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I have had great luck with a combo of humira and methotrexate. I’ve been in remission for a couple of years now so hang in there! Hopefully you’ll find the right drugs for you. I was excited to see the study you shared. I’m always looking for new research but must have missed that one. I’d also love to know if anyone is being treated. Thanks!

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1 reply
darkarta | @darkarta | Oct 25, 2020
In reply to @clpd13 "I have had great luck with a combo of humira and methotrexate. I’ve been in remission..." + (show)
@clpd13

I have had great luck with a combo of humira and methotrexate. I’ve been in remission for a couple of years now so hang in there! Hopefully you’ll find the right drugs for you. I was excited to see the study you shared. I’m always looking for new research but must have missed that one. I’d also love to know if anyone is being treated. Thanks!

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I see you have RA.I am newly diagnosed.I live in Canada and the drug plan won't allow going to biologics right off the bat.How did you manage to do it/

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Mentor
John, Volunteer Mentor | @johnbishop | Oct 25, 2020

Hello @clpd13, Welcome to Mayo Clinic Connect. Thank you for sharing your experience. It sounds like you are doing great with your RA since it has been in remission a couple of years. Have you made any lifestyle or diet related changes that you feel have helped keep the RA in remission?

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clpd13 | @clpd13 | Oct 25, 2020

I stay active and generally eat healthy but that’s really not any different than before the humira.

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anonoymous | @anonoymous | Oct 25, 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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I am 21 years old about to turn 22. I need other advice about ra. I was diagnosed last year and I also have tiezte syndrome.

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Mentor
Sue, Volunteer Mentor | @sueinmn | Oct 25, 2020
In reply to @anonoymous "I am 21 years old about to turn 22. I need other advice about ra. I..." + (show)
@anonoymous

I am 21 years old about to turn 22. I need other advice about ra. I was diagnosed last year and I also have tiezte syndrome.

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Hello - Welcome to Mayo Connect. We are a community of people living with a variety of life's challenges who help and support each other on our journeys. We are not medical professionals, and cannot provide medical advice, but we can talk about what steps we have taken to manage our health.

Can you tell us a little about your journey with RA so far? Symptoms, who diagnosed, specific type, etc? Then those with similar symptoms or diagnosis can jump in and chat. Also, here is some info about Tietze Syndrome, a specific form of costochondritis, a painful but not progressive or life-threatening condition.

Some things you will learn here is to learn as much as you can about your condition, to become your own advocate when seeking treatment, and above all, do everything you can to stay healthy and strong.
Sue

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tigger1968 | @tigger1968 | Feb 11, 2021

Hi! I was recently diagnosed about 2 years ago in Oklahoma, but moved back to Alabama. I've been having a hard time finding a good doctor here. I got COVID last September and since then my RA has been unbearable. They had put me on Rinvoq because I had allergic reactions to the Humera I was taking. (both of which I take with methotrexate once a week as well) Before COVID the Rinvoq seemed to be doing okay. Since then I have been in nothing but pain. The doctors here are not doing anything to try to stop the pain to the point that I am now suicidal since I do not see an end in sight for the pain. My psychiatrist is hesitant to put me in a hospital because of COVID and I am at such a higher risk of getting it again. I am now waiting to hear from Mayo to set up my first appointment to see if they can figure out the cause of the increase in pain and hopefully try to make it better.

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