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.

caril | @caril | Sep 27, 2019
In reply to @johnbishop "Hi @caril -- Welcome to Connect. I recently learned about RA Warrior from @fighter. Their website..." + (show)
@johnbishop

Hi @caril -- Welcome to Connect. I recently learned about RA Warrior from @fighter. Their website does have some information on RA and fatigue here:

What Causes Rheumatoid Arthritis Fatigue
-- https://rawarrior.com/what-causes-rheumatoid-arthritis-fatigue/comment-page-2/

Have you found anything that helps you manage the fatigue? @fighter and other members may have some suggestions for you.

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Thank you for the link to rawarrior.com. The best way I have found to manage the fatigue is to pay attention to myself and take breaks. I also found it helps to always go to bed at the same time each night. Not drinking alcohol has also helped. I almost always sleep poorly if I have a drink at night and that pretty much ruins the next days productivity. I look forward to hearing advice from others who are struggling with fatigue. Thank you!

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1 reply
caril | @caril | Sep 27, 2019
In reply to @fighter "I manage fatigue by taking Lunesta (eszoplicone) 2 mg; without it, I feel exhausted, when I..." + (show)
@fighter

I manage fatigue by taking Lunesta (eszoplicone) 2 mg; without it, I feel exhausted, when I get out of bed in the morning!

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Thank you. I will ask about that at my November appt.

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1 reply
fighter | @fighter | Sep 27, 2019
In reply to @caril "Thank you. I will ask about that at my November appt." + (show)
@caril

Thank you. I will ask about that at my November appt.

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I have found that when I speak to a healthcare provider, I say I would like to try Lunesta. If the provider hasn't suggested it or given it to a patient, he or she may not prescribe it or offer it on his own.

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kozlo52 | @kozlo52 | Sep 28, 2019
In reply to @caril "Thank you for the link to rawarrior.com. The best way I have found to manage the..." + (show)
@caril

Thank you for the link to rawarrior.com. The best way I have found to manage the fatigue is to pay attention to myself and take breaks. I also found it helps to always go to bed at the same time each night. Not drinking alcohol has also helped. I almost always sleep poorly if I have a drink at night and that pretty much ruins the next days productivity. I look forward to hearing advice from others who are struggling with fatigue. Thank you!

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what has your recent bloodwork shown with regard to fatigue? Are your b12 levels good(range=200-1100)? what are you taking for ra pain?If your B12 levels are low the only way to get these up is to get shots 1/week for a monththen 1/month until you get above the minumum of 200 (desireable level is 400+.........................kozlo52

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1 reply
caril | @caril | Sep 28, 2019
In reply to @kozlo52 "what has your recent bloodwork shown with regard to fatigue? Are your b12 levels good(range=200-1100)? what..." + (show)
@kozlo52

what has your recent bloodwork shown with regard to fatigue? Are your b12 levels good(range=200-1100)? what are you taking for ra pain?If your B12 levels are low the only way to get these up is to get shots 1/week for a monththen 1/month until you get above the minumum of 200 (desireable level is 400+.........................kozlo52

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I looked back on my labs and didn't see B12 and will ask about that at my next appt. In addition to RA, I have complicated endocrine issues that are being monitored closely and could be another source.

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barneythe2nd | @barneythe2nd | Oct 3, 2019
In reply to @fighter ":)" + (show)
@fighter

🙂

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Please take my dad off all Mayo Clinic Threads, he passed away. Thank you

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 3, 2019
In reply to @barneythe2nd "Please take my dad off all Mayo Clinic Threads, he passed away. Thank you" + (show)
@barneythe2nd

Please take my dad off all Mayo Clinic Threads, he passed away. Thank you

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Hi son or daughter of @barneythe2nd. Please accept our condolences for the loss of your father. His account has been deactivated and you will no longer receive Mayo Connect-related emails.
Take care,
Colleen
Community Director
Mayo Clinic Connect

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1 reply
fmad | @fmad | Oct 3, 2019
In reply to @colleenyoung "Hi son or daughter of @barneythe2nd. Please accept our condolences for the loss of your father...." + (show)
@colleenyoung

Hi son or daughter of @barneythe2nd. Please accept our condolences for the loss of your father. His account has been deactivated and you will no longer receive Mayo Connect-related emails.
Take care,
Colleen
Community Director
Mayo Clinic Connect

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Please accept my condolences with much love in my heart.

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Bob | @nmalsb4316 | Oct 10, 2019

I am Bob, father of a daughter with RA. She was just prescribed a combination of lefludomide and Humira. As an old pharmaceutical rep I have always used "side effects" as things to be alert to should they occur but not as basis for fear. The side effects, however, coincide with some pre-existing or genetically predisposed. What are others experience with this combo?

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1 reply
boomerexpert | @boomerexpert | Oct 10, 2019

Never heard of it... and sounds to me like a bit of over-medicating

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1 reply
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