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.

athenalee | @athenalee | Oct 30, 2021
In reply to @jba "I am a newbie. Diagnosed with RA and Sjögrens December of 2020. Bottom line, I have..." + (show)
@jba

I am a newbie. Diagnosed with RA and Sjögrens December of 2020. Bottom line, I have isolated during Covid since then. I have not left home except for doctors visits, pharmacy and have met outdoors, masked and distanced with 2 friends once each. The bottom line question is: how to decide when and where it is safe to go out in public? My rheumatologist says "go, enjoy life." I replied that I have to decide what my comfort level is. She said "yes, definitely". I am fearful of contracting anything when immunosuppressed. How do others determine their comfort level and how do they manage it? A P.S. : I am totally vaccinated and received my booster (3rd shot) of Moderna in August this year.

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Hello @jba! I was diagnosed with Primary Biliary Cholangitis and stage 3 liver disease in the summer of 2019. When Covid hit in February 2020 I went into strict lockdown, worked at home, and did little socializing. The only problem was I was getting sicker, but couldn’t get in to see my liver doctor! By early summer the hospitals were opening up more, I was fortunate to be placed on the transplant wait list, and was blessed with a new liver in August 2020. It was definitely a nerve wracking experience being in the hospital during a pandemic.

I also have Sjogren’s and Raynaud’s Syndromes, and am immunosuppressed due to my transplant meds. I remain vigilant with masking at all times indoors. I will go to outside seating restaurants, but not inside. I’ve gone to a couple mask/vaccine proof required indoor concerts. Before the colder weather hit I went regularly to our farmers market and other outdoor events, always masked.

I live in a relatively high vaccinated area, but we have a lot of tourists and are host to many weddings, etc. so have seen our previously very low Covid rates increase this fall. I’m having to return to an office setting for work, so I am concerned. Fortunately for now anyway masks are required as it’s a public building.

I do feel, for me anyway, it is important to socialize. But it’s also important to remain vigilant and respect one’s own comfort level. Only you can decide this, based upon your health, vaccination status, being vigilant, and the trust in others to be vaccinated and careful as well.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 30, 2021
In reply to @joannemm30809 "I was diagnosed several years ago with having what the doctor said was arthritis in my..." + (show)
@joannemm30809

I was diagnosed several years ago with having what the doctor said was arthritis in my knees and my feet and my fingers and an MRI shows degenerative arthritis in my neck. What is the difference between regular arthritis and rheumatoid arthritis?

What other symptoms can rheumatoid arthritis bring on? I've had some crazy symptoms over the last 2 years and I mean it's a multitude of wide range of symptoms that are debilitating but the doctors have done every test known to mankind and everything comes back normal so I was wondering if maybe my arthritis which they classify as an auto immune system disease could actually be giving me some of these other symptoms I have

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Joanne, Osteoarthritis, the most common form of arthritis, involves the wearing away of the cartilage that caps the bones in your joints. Rheumatoid arthritis is a disease in which the immune system attacks the joints, beginning with the lining of joints.

This article explains in more detail.
- Is It Rheumatoid Arthritis? The Differences Between RA and OA https://www.healthline.com/health/rheumatoid-arthritis/ra-vs-oa

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marye2 | @marye2 | Oct 31, 2021
In reply to @loke "I was Diagnosed with DJD, DDD, Fibromyalgia and SJOGRENS syndrome Which I was informed is a..." + (show)
@loke

I was Diagnosed with DJD, DDD, Fibromyalgia and SJOGRENS syndrome Which I was informed is a form of RA , hopefully I was Informed correctly. I have a Support group for Chronic Pain and would love anything I can recieve do you do this? My name is Loke and I live in Muskegon, Michigan

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I have many of these symptoms as part of Mixed Connective Tissue Disease, which is a subset of Lupus. I also have lower back degeneration. For the fibro piece, non-processed, anti-inflammatory diet, movement and stretches as well as a daily walk help loosen muscles and improve strength. Sjogrens affects eyes and mouth, mainly, but staying hydrated is really important; Systane eye drops, PM ointment for eyes and biotene/xylital/ACT mouthwash/brushing and water pik to keep mouth healthy. There are FB groups for MCTD, Fibromyalgia, etc. that might help. For both, movement and diet are really important to manage pain.

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jba | @jba | Nov 2, 2021
In reply to @athenalee "Hello @jba! I was diagnosed with Primary Biliary Cholangitis and stage 3 liver disease in the..." + (show)
@athenalee

Hello @jba! I was diagnosed with Primary Biliary Cholangitis and stage 3 liver disease in the summer of 2019. When Covid hit in February 2020 I went into strict lockdown, worked at home, and did little socializing. The only problem was I was getting sicker, but couldn’t get in to see my liver doctor! By early summer the hospitals were opening up more, I was fortunate to be placed on the transplant wait list, and was blessed with a new liver in August 2020. It was definitely a nerve wracking experience being in the hospital during a pandemic.

I also have Sjogren’s and Raynaud’s Syndromes, and am immunosuppressed due to my transplant meds. I remain vigilant with masking at all times indoors. I will go to outside seating restaurants, but not inside. I’ve gone to a couple mask/vaccine proof required indoor concerts. Before the colder weather hit I went regularly to our farmers market and other outdoor events, always masked.

I live in a relatively high vaccinated area, but we have a lot of tourists and are host to many weddings, etc. so have seen our previously very low Covid rates increase this fall. I’m having to return to an office setting for work, so I am concerned. Fortunately for now anyway masks are required as it’s a public building.

I do feel, for me anyway, it is important to socialize. But it’s also important to remain vigilant and respect one’s own comfort level. Only you can decide this, based upon your health, vaccination status, being vigilant, and the trust in others to be vaccinated and careful as well.

Jump to this post

Thank you for helpful information about how you deal with Covid and being "out in the world". It is encouraging that you, and others I imagine, have determined how to do this and feel relatively safe. I wish you well with your ongoing health concerns. I appreciate your perseverance and vigilance!

REPLY
tarmansbks | @tarmansbks | Nov 6, 2021
In reply to @guzmanbarb "Hi I was diagnosed in 2015 recently I have been having monthly flair ups I was..." + (show)
@guzmanbarb

Hi I was diagnosed in 2015 recently I have been having monthly flair ups I was put on methotrexate but just stopped it as I can't stand the side effects. I am going to the Mayo Clinic in may

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Doctor keeps encouraging me to try Methotrexate and I keep resisting. I would like some anecdotal reports from users who have taken it with success and those who experienced side effects that precluded it. I can read the side effects but would rather hear first hand accounts. I am continuing on medrol and have been for 10 years and all my blood work that methotrexate could affect is now normal. Thank you. M.E.

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3 replies
ellens | @ellens | Nov 7, 2021
In reply to @tarmansbks "Doctor keeps encouraging me to try Methotrexate and I keep resisting. I would like some anecdotal..." + (show)
@tarmansbks

Doctor keeps encouraging me to try Methotrexate and I keep resisting. I would like some anecdotal reports from users who have taken it with success and those who experienced side effects that precluded it. I can read the side effects but would rather hear first hand accounts. I am continuing on medrol and have been for 10 years and all my blood work that methotrexate could affect is now normal. Thank you. M.E.

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I took methotrexate in the early 2000s and had a remission. When I started having pain again I went back on and gave myself injections. I developed mouth sores and my dentist told me to swish Listerine around in my mouth for a full minute every day. That worked well. Then my rheumatologist died and in my Montana town there was no other rheumatologist. After no DMARDs for 10 years I returned to MN and am now back on methotrexate. I am self-injecting 20 mg once a week with a tiny insulin syringe and so far have had no side effects. One swollen finger is beginning to bend again. I've always been aware of the side effects. Occasionally I feel a bit dizzy after the injection so I do it in the evening when I can sleep it off. I hope this works since the next step would be a biologic.

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2 replies
tarmansbks | @tarmansbks | Nov 7, 2021
In reply to @ellens "I took methotrexate in the early 2000s and had a remission. When I started having pain..." + (show)
@ellens

I took methotrexate in the early 2000s and had a remission. When I started having pain again I went back on and gave myself injections. I developed mouth sores and my dentist told me to swish Listerine around in my mouth for a full minute every day. That worked well. Then my rheumatologist died and in my Montana town there was no other rheumatologist. After no DMARDs for 10 years I returned to MN and am now back on methotrexate. I am self-injecting 20 mg once a week with a tiny insulin syringe and so far have had no side effects. One swollen finger is beginning to bend again. I've always been aware of the side effects. Occasionally I feel a bit dizzy after the injection so I do it in the evening when I can sleep it off. I hope this works since the next step would be a biologic.

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Thank you for responding. Didn't realize it is administered by injection. I am too uninformed and need to get up to speed. I was sorry when Arthritis Today ceased publication. It kept me in touch. I get the Cleveland clinic arthritis newsletter but I miss the magazine.

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1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Nov 8, 2021
In reply to @tarmansbks "Doctor keeps encouraging me to try Methotrexate and I keep resisting. I would like some anecdotal..." + (show)
@tarmansbks

Doctor keeps encouraging me to try Methotrexate and I keep resisting. I would like some anecdotal reports from users who have taken it with success and those who experienced side effects that precluded it. I can read the side effects but would rather hear first hand accounts. I am continuing on medrol and have been for 10 years and all my blood work that methotrexate could affect is now normal. Thank you. M.E.

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@tarmansbks Are you seeing a rheumatologist? There are so many new drugs on the market for RA. Medrol is a form of steroid so be sure to check on the side effects of that, too. Just about all drugs have side effects, but not every one experiences them. 3 1/2 years ago when i was put on high doses of steroids for a brain inflammation, I didn’t think twice. Side effects were dealt with except osteoporosis (which i now receive care for) and cataracts (will have surgery in December). BUT, I’m still here and my brain is better!
See the best doctor you can see and ask questions!

REPLY
1 reply
ellens | @ellens | Nov 8, 2021
In reply to @ellens "I took methotrexate in the early 2000s and had a remission. When I started having pain..." + (show)
@ellens

I took methotrexate in the early 2000s and had a remission. When I started having pain again I went back on and gave myself injections. I developed mouth sores and my dentist told me to swish Listerine around in my mouth for a full minute every day. That worked well. Then my rheumatologist died and in my Montana town there was no other rheumatologist. After no DMARDs for 10 years I returned to MN and am now back on methotrexate. I am self-injecting 20 mg once a week with a tiny insulin syringe and so far have had no side effects. One swollen finger is beginning to bend again. I've always been aware of the side effects. Occasionally I feel a bit dizzy after the injection so I do it in the evening when I can sleep it off. I hope this works since the next step would be a biologic.

Jump to this post

Something I left out--no alcohol is allowed on methotrexate since it can be hard on the liver. A daily folic acid helps and is highly recommended. Liver tests are evaluated regularly.

REPLY
tarmansbks | @tarmansbks | Nov 8, 2021
In reply to @becsbuddy "@tarmansbks Are you seeing a rheumatologist? There are so many new drugs on the market for..." + (show)
@becsbuddy

@tarmansbks Are you seeing a rheumatologist? There are so many new drugs on the market for RA. Medrol is a form of steroid so be sure to check on the side effects of that, too. Just about all drugs have side effects, but not every one experiences them. 3 1/2 years ago when i was put on high doses of steroids for a brain inflammation, I didn’t think twice. Side effects were dealt with except osteoporosis (which i now receive care for) and cataracts (will have surgery in December). BUT, I’m still here and my brain is better!
See the best doctor you can see and ask questions!

Jump to this post

Yes, I do see a rheumatologist and have had the same one since 2012. Prior to that I had really bad experiences and am very happy with my current provider. I know medrol does have side effects but I guess in time you either forget about them or live with them and not in fear of them. My eyes are good for my years and no signs of cataracts or glaucoma and I am regularly checked. I know the osteoporosis risk and right now I am ok on that point. Thank you for sharing your experience. I see methotrexate is also available in pill form if I understand correctly what I read.

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