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.

lioness | @lioness | Jul 11, 2020
In reply to @peach414144 "Thank you for understanding. I use the para transit bus that picks me up at the..." + (show)
@peach414144

Thank you for understanding. I use the para transit bus that picks me up at the house and brings me back; for doctors and food shopping. But now food shopping is almost impossible without the use of the hand. I am working on all aspects. It is difficult but I do not give up. Perhaps after this Corona Virus is kept in check the doctors will operate on the hand. But until then I will lose weight but I will not cry. They do not deserve my tears. Shame on them! Stubborn.

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@peach414144 Good for you peach . Keep going as much as you can .

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peach414144 | @peach414144 | Jul 11, 2020
In reply to @funcountess "Peach, You should not lose weight because of your hand. Your grocery store should provide assistance..." + (show)
@funcountess

Peach,
You should not lose weight because of your hand.
Your grocery store should provide assistance with shopping.
In California some supermarkets have their box people go with customers to assist with picking stuff off the shelfs etc.
You can always order groceries, and Rx on line. and deliver to your house.
If you need help, you need it now.
Do not wait for the cov19 to resolve.
Funcountess

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Sorry I cannot drive any m,ore because of gloucoma (Low vision) now. But I persevere. You are kind.

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kozlo52 | @kozlo52 | Jul 12, 2020
In reply to @peach414144 "Will RA inflame and swell your feet and legs so as to keep you in a..." + (show)
@peach414144

Will RA inflame and swell your feet and legs so as to keep you in a wheelchair for two months until it slowly goes away and you can walk again? And as I also have Psoriatic arthritis who knows which one is doing this or is it the both of them together? Going through thus again off and on for three years. But the worst is: I now have carpel, tunnel trigger finger and the arthritis in my right hand so that without the use of this hand I go around in circles in the wheelchair. I am 83 years old and the doctor refuses to give a prescription for an electric wheelchair. The hand surgeons will not operate because of the Corona virus and my age. As the old song goes "Stuck in the middle again!" I need an Ombudsman to represent me but they only want me to go into assisted living. I want my freedom and to continue to live in my home that I have paid for these many years. I clean my house myself and take care of my precious dog and cat very well. Shame on them if they think this is the easy way. "GOING AROUND IN CIRCLES" Any ideas anyone? Please. Peach

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i have had ulner nerve trans position surgery 4 years ago. because the ulner nerve was being affected by spurs inmy right elbow. when the surgery was done the surgeon said i will have permanent numbness in the rightside of my hand and he was right. i wear a mueller brace for stabilizing my right hand for driving , cooking, etc. these can be bought at walmart. ... relative to your need for an electric wheelchair, try your local state representative for help..... also i have been fighting RA for 31 years. i have had 20 operating procedures in 20 years. i am 68 yeas old. pain is a terrible thing to put up with..... also contact your local news station and tell them your problems. a little press may go a long way perhaps in some manufacture to donate a wheelchair to you.... god bless and do your best... kozlo52

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roeglo | @roeglo | Jul 25, 2020

I have RA and OA since I was a kid and now I have it in every part of my body. I can hardly get around. I don’t go out of the house because it’s to painful. I can’t do hardly anything for myself. Mr arthritis takes a jump every few months and that means it gets worse. I am highly resistant to all medications so they don’t work. My doctor has tried dozens.I am now trying prednisone with little effect if any.

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3 replies
Mentor
John, Volunteer Mentor | @johnbishop | Jul 25, 2020
In reply to @roeglo "I have RA and OA since I was a kid and now I have it in..." + (show)
@roeglo

I have RA and OA since I was a kid and now I have it in every part of my body. I can hardly get around. I don’t go out of the house because it’s to painful. I can’t do hardly anything for myself. Mr arthritis takes a jump every few months and that means it gets worse. I am highly resistant to all medications so they don’t work. My doctor has tried dozens.I am now trying prednisone with little effect if any.

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Hello @roeglo, Welcome to Connect. It sounds like you have struggled with RA for a long time with not much success. I've been on prednisone twice for polymyalgia rheumatica occurrences and it usually helps right away. Here's some information from the Arthritis Foundation that may be helpful... "Biologics are a special type of disease-modifying antirheumatic drug (DMARD). In most cases, they are prescribed when conventional DMARDs have not worked. These powerful drugs work very well for many people with rheumatoid arthritis, psoriatic arthritis, and other forms of inflammatory arthritis." -- https://www.arthritis.org/drug-guide/biologics/biologics

Has your doctor tried any of the biologic drug treatments?

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1 reply
jeflor | @jeflor | Jul 25, 2020
In reply to @johnbishop "Hello @roeglo, Welcome to Connect. It sounds like you have struggled with RA for a long..." + (show)
@johnbishop

Hello @roeglo, Welcome to Connect. It sounds like you have struggled with RA for a long time with not much success. I've been on prednisone twice for polymyalgia rheumatica occurrences and it usually helps right away. Here's some information from the Arthritis Foundation that may be helpful... "Biologics are a special type of disease-modifying antirheumatic drug (DMARD). In most cases, they are prescribed when conventional DMARDs have not worked. These powerful drugs work very well for many people with rheumatoid arthritis, psoriatic arthritis, and other forms of inflammatory arthritis." -- https://www.arthritis.org/drug-guide/biologics/biologics

Has your doctor tried any of the biologic drug treatments?

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Hi John, I have been on most of the biologic s and they work for a while and then stop. Currently on Xeljanz which is doing fine for now but seems to be getting less effective over time. I still struggle for 2 to 3 hour's every morning and it returns in the evening. I plan to stay with it until it stops working and go from there. Thanks for asking!

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fighter | @fighter | Jul 25, 2020
In reply to @roeglo "I have RA and OA since I was a kid and now I have it in..." + (show)
@roeglo

I have RA and OA since I was a kid and now I have it in every part of my body. I can hardly get around. I don’t go out of the house because it’s to painful. I can’t do hardly anything for myself. Mr arthritis takes a jump every few months and that means it gets worse. I am highly resistant to all medications so they don’t work. My doctor has tried dozens.I am now trying prednisone with little effect if any.

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Have you tried any of the IL 6 inhibitors, i.e., Kineret?

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2 replies
boomerexpert | @boomerexpert | Jul 25, 2020
In reply to @roeglo "I have RA and OA since I was a kid and now I have it in..." + (show)
@roeglo

I have RA and OA since I was a kid and now I have it in every part of my body. I can hardly get around. I don’t go out of the house because it’s to painful. I can’t do hardly anything for myself. Mr arthritis takes a jump every few months and that means it gets worse. I am highly resistant to all medications so they don’t work. My doctor has tried dozens.I am now trying prednisone with little effect if any.

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Juvenile onset RA is the most damaging, with existing meds becoming less and less effective as you age. Perhaps one of the new ones coming out will help...have you any skin lesions that point to Psoriatic vs Rheumatoid arthritis?

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1 reply
roeglo | @roeglo | Jul 26, 2020
In reply to @boomerexpert "Juvenile onset RA is the most damaging, with existing meds becoming less and less effective as..." + (show)
@boomerexpert

Juvenile onset RA is the most damaging, with existing meds becoming less and less effective as you age. Perhaps one of the new ones coming out will help...have you any skin lesions that point to Psoriatic vs Rheumatoid arthritis?

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No leasions. I already tried Otesla when you were supposed to have lessons. They would call and ask how they were doing.
My doctor was trying anything he could think of.
My resistance to meds has always been.

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roeglo | @roeglo | Jul 26, 2020
In reply to @fighter "Have you tried any of the IL 6 inhibitors, i.e., Kineret?" + (show)
@fighter

Have you tried any of the IL 6 inhibitors, i.e., Kineret?

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No, unless they come by another name. What. Are they?

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