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.

mariarx8 | @mariarx8 | Sep 25, 2023
In reply to @adrimv "Hola! Puedes consultar sobre “paleo mom” y protocolo autoinmune en internet. Consulta con tu nutricionista. A..." + (show)
@adrimv

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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Thank you

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mariarx8 | @mariarx8 | Sep 25, 2023
In reply to @slka46 "Hello - I have been on Cimzia injections and injectable Methotrexate for a handful of years...." + (show)
@slka46

Hello - I have been on Cimzia injections and injectable Methotrexate for a handful of years. This combo did stop the joint damage for me and has been working well. I have had 1 flare that required a steroid taper since being on this combo for RA and UC. It gave me my life back (was life changing). Cimzia is similar to Humira. I could not afford this without the help of the co-pay program the pharmaceutical company offers and insurance from my employer. That is not to say I still don't have side affects of the disease but my pain is much better controlled. I hope this information is helpful to someone. I'm happy to share my story and what has worked for me.

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Thank you for sharing this

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onetowatchst | @onetowatchst | Oct 6, 2023
In reply to @mia447 "Hi all -- I'm new here so thought I would introduce myself. I live in Australia..." + (show)
@mia447

Hi all -- I'm new here so thought I would introduce myself. I live in Australia and was diagnosed with RA (and fibro) in 2016. It took a long time for me to get a diagnosis as I am sero-negative, and I apparently didn't 'fit' the classic picture. I do have joint pain in my hands and feet but have always more battled awful fatigue and muscle pain as my main symptoms. I was eventually referred to a sympathetic rheumatologist who shook her head a bit and said she thought it was 'obvious' I have RA (by then I was pretty fed up with being told "there's nothing wrong with you" so I wanted to hug her! :). Most of all I was happy to finally get a diagnosis and some treatment. I'm currently taking Methotrexate, Plaquenil, Mobic, Prednisolone and Simponi for the RA and Clonazepam and Zaldiar for the fibro-related pain. For now the drugs seem to be working and I still manage to work 4 days a week although at times I'd like nothing more than to spend the day in bed! I've found keeping moving, doing yoga, and learning mindfulness-based meditation has helped me keep active. I'd love to hear what everyone else is doing to try and stay active.

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I have both of these as well. I don't complain, and often get a response like - you look fine. I'm only taking
hydroxaqualine for inflammation. My pain is debilitating, and wakes me up while I'm sleeping. I am scared to get on any RA meds due to side effects, and the pain meds are so stigmatized--I don't want to sound like I'm seeking them out.
Stretching and inversion help to a point, but I am in between insurances coverage. So I have to be strong for 40 days before I can see a physician and ask what alternatives I can start implementing to ease the fibromyalgia pain.

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3 replies
Mentor
Becky, Volunteer Mentor | @becsbuddy | Oct 6, 2023
In reply to @onetowatchst "I have both of these as well. I don't complain, and often get a response like..." + (show)
@onetowatchst

I have both of these as well. I don't complain, and often get a response like - you look fine. I'm only taking
hydroxaqualine for inflammation. My pain is debilitating, and wakes me up while I'm sleeping. I am scared to get on any RA meds due to side effects, and the pain meds are so stigmatized--I don't want to sound like I'm seeking them out.
Stretching and inversion help to a point, but I am in between insurances coverage. So I have to be strong for 40 days before I can see a physician and ask what alternatives I can start implementing to ease the fibromyalgia pain.

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@onetowatchst Oh, you're not using anything for the pain. I understand when you say that you’re scared of side effects. All meds today seem to have these awful-sounding side effects, but not everyone suffers from them. The manufacturers are required to list everything even if only 1 person experienced the side effect. That’s partly why the approval process takes so long. I’m not trying to talk you into anything. I know you want to change the look of RA, so they need to see it as not so painful.
There are several discussions, here on Mayo Connect. Have you read them to see what meds others are taking?

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1 reply
mia447 | @mia447 | Oct 7, 2023
In reply to @onetowatchst "I have both of these as well. I don't complain, and often get a response like..." + (show)
@onetowatchst

I have both of these as well. I don't complain, and often get a response like - you look fine. I'm only taking
hydroxaqualine for inflammation. My pain is debilitating, and wakes me up while I'm sleeping. I am scared to get on any RA meds due to side effects, and the pain meds are so stigmatized--I don't want to sound like I'm seeking them out.
Stretching and inversion help to a point, but I am in between insurances coverage. So I have to be strong for 40 days before I can see a physician and ask what alternatives I can start implementing to ease the fibromyalgia pain.

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I feel for you. The 'you look fine' comments make me want to curl up in a ball for a week! I don't know how you manage without either RA meds or pain meds. I'm forever grateful my rheumatologist normalised taking meds with me right from the start. We talked about side-effects in depth but her advice was if you delay meds to the point that your joints are damaged it can be irreversable - and then the pain is much harder to manage. I figured as she was the one who finally diagnosed my problem I'd best take her advice. 🙂 I hope you find something to help out with the fibro pain - it absolutely is debilitating. That kind of ongoing deep-seated pain is exhausting. xx

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2 replies
harley22 | @harley22 | Oct 8, 2023
In reply to @mia447 "I feel for you. The 'you look fine' comments make me want to curl up in..." + (show)
@mia447

I feel for you. The 'you look fine' comments make me want to curl up in a ball for a week! I don't know how you manage without either RA meds or pain meds. I'm forever grateful my rheumatologist normalised taking meds with me right from the start. We talked about side-effects in depth but her advice was if you delay meds to the point that your joints are damaged it can be irreversable - and then the pain is much harder to manage. I figured as she was the one who finally diagnosed my problem I'd best take her advice. 🙂 I hope you find something to help out with the fibro pain - it absolutely is debilitating. That kind of ongoing deep-seated pain is exhausting. xx

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I don’t go one day without pain in my feet.
Im going to try something recommended by someone on Mayo connect, Susan’s CB salve.
I hope this one will work, because I’ve tried a few others with no relief.

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mjq | @mjq | Oct 8, 2023
In reply to @mia447 "I feel for you. The 'you look fine' comments make me want to curl up in..." + (show)
@mia447

I feel for you. The 'you look fine' comments make me want to curl up in a ball for a week! I don't know how you manage without either RA meds or pain meds. I'm forever grateful my rheumatologist normalised taking meds with me right from the start. We talked about side-effects in depth but her advice was if you delay meds to the point that your joints are damaged it can be irreversable - and then the pain is much harder to manage. I figured as she was the one who finally diagnosed my problem I'd best take her advice. 🙂 I hope you find something to help out with the fibro pain - it absolutely is debilitating. That kind of ongoing deep-seated pain is exhausting. xx

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I would like to share my story and the story of a friend. She and I were diagnosed with RA at about the same time eight years ago. I also have osteoarthritis. I take the medicines prescribed by my rheumatologist including Orencia (a biological) and Placquenil. They have worked very, very well. I am active and living and maintaining my own home. Certainly I do have days when the RA is acting up but know that soon, because of my meds, I will be better.
My friend refuses any drug including DMRS or biologicals. She has lots of pain and swelling mainly in her feet and ankles. She is looking at assisted living sites this weeks with hopes to move soon as she is having difficulty even with a walker. She can no longer bath by herself. She imagines she with progress (regress) to a wheel chair soon.

All drugs have side effects But one must choose between life in a wheel chair or life on your feet in your own home. With my examples in mind, I recommend taking the drugs your doctor suggests

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2 replies
onetowatchst | @onetowatchst | Oct 8, 2023
In reply to @becsbuddy "@onetowatchst Oh, you're not using anything for the pain. I understand when you say that you’re..." + (show)
@becsbuddy

@onetowatchst Oh, you're not using anything for the pain. I understand when you say that you’re scared of side effects. All meds today seem to have these awful-sounding side effects, but not everyone suffers from them. The manufacturers are required to list everything even if only 1 person experienced the side effect. That’s partly why the approval process takes so long. I’m not trying to talk you into anything. I know you want to change the look of RA, so they need to see it as not so painful.
There are several discussions, here on Mayo Connect. Have you read them to see what meds others are taking?

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I do read the suggestions of others. It is helpful. I have found a less physically demanding employer --
My former position was really triggering my flares and symptoms pretty regularly. So much so, that the company put me on short term disability with 60% pay. After being referred to an orthopedic physician, for nerve damage assessment, my left arm is technically fine, but declining in response to stimulus.

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onetowatchst | @onetowatchst | Oct 8, 2023

I will be uninsured until I meet the requirements of my new employer. Once I can receive care, I plan on scheduling a rheumatologist appointment

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2 replies
lottief | @lottiest | Oct 8, 2023
In reply to @onetowatchst "I have both of these as well. I don't complain, and often get a response like..." + (show)
@onetowatchst

I have both of these as well. I don't complain, and often get a response like - you look fine. I'm only taking
hydroxaqualine for inflammation. My pain is debilitating, and wakes me up while I'm sleeping. I am scared to get on any RA meds due to side effects, and the pain meds are so stigmatized--I don't want to sound like I'm seeking them out.
Stretching and inversion help to a point, but I am in between insurances coverage. So I have to be strong for 40 days before I can see a physician and ask what alternatives I can start implementing to ease the fibromyalgia pain.

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I have had RA for Abt 40 yrs. I've been on many different meds and lastly been taking humera for 12 years. I have not had many problems other than some sinus infections at times. I'm very active and am so thankful for the meds science comes up with.

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