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?

Hello @jk1, I would like to add my welcome to Connect along with @susandenise and other members. You mentioned dedicated RA websites. The Arthritis Foundation website has some really good information on treatments as well as healthy living for people with RA. Here's a link to their website in case you haven't seen it.

10 Things to Know About Rheumatoid Arthritis: https://www.arthritis.org/diseases/more-about/10-things-to-know-about-ra

Are you able to share any tips on how you manage RA?

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@johnbishop

Hello @jk1, I would like to add my welcome to Connect along with @susandenise and other members. You mentioned dedicated RA websites. The Arthritis Foundation website has some really good information on treatments as well as healthy living for people with RA. Here's a link to their website in case you haven't seen it.

10 Things to Know About Rheumatoid Arthritis: https://www.arthritis.org/diseases/more-about/10-things-to-know-about-ra

Are you able to share any tips on how you manage RA?

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Thank you!

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I know exactly what it is to live with Rheumatoid Arthritis. I have had it since 2006, officially. I had symptoms since 2001. My life is so complicated, and nothing like I dreamed for myself and my family. My disease has progressed to a very bad place. My hands have nodules on the knuckles with swelling and pain. I have been on biological medications throughout these years, however, I react to these medications which make life very painful. I stopped taking my last medication (Orencia) because I got mouth sores, I am still getting RA nodules in my hands, memory and concentration issues. I am having trouble holding down a job, but not sick enough to qualify for disability. I am afraid of where this disease is going to go!

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@juliem2020

I know exactly what it is to live with Rheumatoid Arthritis. I have had it since 2006, officially. I had symptoms since 2001. My life is so complicated, and nothing like I dreamed for myself and my family. My disease has progressed to a very bad place. My hands have nodules on the knuckles with swelling and pain. I have been on biological medications throughout these years, however, I react to these medications which make life very painful. I stopped taking my last medication (Orencia) because I got mouth sores, I am still getting RA nodules in my hands, memory and concentration issues. I am having trouble holding down a job, but not sick enough to qualify for disability. I am afraid of where this disease is going to go!

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Yes, I feel exactly like you do. It’s a hard thing.

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@juliem2020

I know exactly what it is to live with Rheumatoid Arthritis. I have had it since 2006, officially. I had symptoms since 2001. My life is so complicated, and nothing like I dreamed for myself and my family. My disease has progressed to a very bad place. My hands have nodules on the knuckles with swelling and pain. I have been on biological medications throughout these years, however, I react to these medications which make life very painful. I stopped taking my last medication (Orencia) because I got mouth sores, I am still getting RA nodules in my hands, memory and concentration issues. I am having trouble holding down a job, but not sick enough to qualify for disability. I am afraid of where this disease is going to go!

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I do feel for you because I have seen the suffering this disease can cause and your very real fear as to what’s in store for you is an impossible question to answer because we all react differently over time.
I too have nodules on my fingers etc but don’t take any medication for various reasons plus my problem appears to be individual soi do not know who to speak to.
I hope a miracle occurs for you so just keep hoping
@jk1

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@susandenise

Hi, my name is Susan. Thanks for having me in the group. I have RA so badly I have severe mobility issues, cannot hold a pen correctly anymore, severe fatigue and incredible never ending pain … I feel like my joints and bones are being stabbed at all the time. I don’t sleep most nights from the pain. My RA doc has told me to increase my exercise. I’m a farmer. I possibly cannot do anymore “ exercises “ my pain and fatigue are awful.

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What medications are you taking?

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@susandenise

Hi, my name is Susan. Thanks for having me in the group. I have RA so badly I have severe mobility issues, cannot hold a pen correctly anymore, severe fatigue and incredible never ending pain … I feel like my joints and bones are being stabbed at all the time. I don’t sleep most nights from the pain. My RA doc has told me to increase my exercise. I’m a farmer. I possibly cannot do anymore “ exercises “ my pain and fatigue are awful.

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Ask your doctor to try Lunesta 2 mg at bedtime for fatigue. It has helped me!

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@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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I used Methotrexate for about a month, several years ago. I was not able to take any of the new biological wonder drugs that are constantly advertised on tv as I have had several cancers. The methotrexate did nothing for my RA, however it damaged my lungs. I now have mild COPD.
Please be careful with this drug, it has many bad side effects.
The RA has ruined my hands/fingers, and is now affecting my toes. Many of my finger joints are fused and can not bend. When this first started, the pain was similar to having knives stuck in my fingers, but that has subsided to a mild pain. I have 3 fingers that are flexible and almost normal. My hands looks terrible, all bent & in winter are purple.

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@fighter

What medications are you taking?

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I have RA and had started methotrexate for a month and just as I was about to start the 2nd bottle the coronavirus came along. I am not terribly affected by the RA right now and when a vaccine is available I'll consult with my rheumatologist about when to restart methotrexate after I get vaccinated. I'll feel a bit less paranoid about having a suppressed immune system then.

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I didn't know about the effects of methotrexate on the lungs. I don't like ANY of the RA drugs and if I weren't concerned about my level of inflammation I wouldn't go near them again. I have had surgeries on both feet and two on my right hand. I can live with the RA as it is, somewhat painful but tolerable.

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ellens, the usual efffect on the body is high liver enzymes. This is an old chemtherapy drug from the 1940's. iwas on it for a few weaks and my liver enzymes (all 3 ) were highly out of spec. i would be interested in the surgeries on both feet and right hand. my feet are always sore on the bottom (feels like gravel when i walk on them. something you may want to consider is CBD oil. it has no THC so you will not get high. it is taken under the tongue and held there for 60 seconds , and then spit out. i usually then swish around in the mouth for 2 times and then do a honey swish to eliminate any taste of CBD. there are days when i will take 10 drops under the tongue and it does help a little ease RA pain. i have been battling RA for 31 years. My side effects from RA meds were bad rashes, stomach pain, torn retinas in both eyes, failed kidneys. Kidneys have been back to normal and after 2 retina operations, 2 cataract operations, my eyes are almost back to normal……kozlo52… god bless and good luck!

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@kozlo52

ellens, the usual efffect on the body is high liver enzymes. This is an old chemtherapy drug from the 1940's. iwas on it for a few weaks and my liver enzymes (all 3 ) were highly out of spec. i would be interested in the surgeries on both feet and right hand. my feet are always sore on the bottom (feels like gravel when i walk on them. something you may want to consider is CBD oil. it has no THC so you will not get high. it is taken under the tongue and held there for 60 seconds , and then spit out. i usually then swish around in the mouth for 2 times and then do a honey swish to eliminate any taste of CBD. there are days when i will take 10 drops under the tongue and it does help a little ease RA pain. i have been battling RA for 31 years. My side effects from RA meds were bad rashes, stomach pain, torn retinas in both eyes, failed kidneys. Kidneys have been back to normal and after 2 retina operations, 2 cataract operations, my eyes are almost back to normal……kozlo52… god bless and good luck!

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I also use CBD tincture under the tongue. I don’t spit it out. I swallow it and within minutes I feel less pain. ( tastes like grassy dirt) I found a better option for me is the 3000 mg. Gummies. It’s like a little snack with pain relief. I smoke with a bubbler to make “ less” harsh on my lungs the CBD industrial grown hemp at any reputable CBD store. I live downstate Ny and we have a CBD clinic in the area. The CBD really helps. My doc recommended smoking marijuana but that’s not me… I don’t want to be high I want relief. My doc also tried to put me on that methodextrate and prednisone, told me I will never get better the RA will eventually kill me as my organs succumb. The chemicals in both those drugs are killers themselves… so I decided I’m staying on the CBD route and let my RA destroy my body little by little. Doc says I have about 10 years if I’m lucky ( just to live) in that time I will lose my motor skills, etc. try the CBD load up on it. Take the highest dosage which is 300 mg. It really does help. Capsules are even stronger.

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