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.

beckydubolsky | @beckydubolsky | May 17, 2023
In reply to @becsbuddy "@beckydubolsky Hi, Becky, I’m Becky, too! Small world. So you don’t take any drugs for your..." + (show)
@becsbuddy

@beckydubolsky Hi, Becky, I’m Becky, too! Small world. So you don’t take any drugs for your RA? But you must have painful joints, especially in a flare. What else do you do besides the AID?

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Sorry for the short reply, but my hands/fingers are greatly impacted from arthritis. How do you manage pain & flare ups?
My rheumatologist has offered meds, however, the side effects are scary. Do you use meds?

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Mentor
Becky, Volunteer Mentor | @becsbuddy | May 17, 2023

@beckydubolsky I know it can be very unnerving to start on new medications, but you really need to if you want your life back. The drug manufacturers are required, by law, to list every possible side effect even if only 1 person experienced it. And some side effects go away as your body adjusts. I have to take medications just to stay alive and the biggest problem I’ve had is keeping track of all of them!
Other members, @kmacky @luki52 and @leale can join us and tell you more about using specific RA meds.
What is your biggest concern about taking the meds?

REPLY
5 replies
luki52 | @luki52 | May 17, 2023
In reply to @becsbuddy "@beckydubolsky I know it can be very unnerving to start on new medications, but you really..." + (show)
@becsbuddy

@beckydubolsky I know it can be very unnerving to start on new medications, but you really need to if you want your life back. The drug manufacturers are required, by law, to list every possible side effect even if only 1 person experienced it. And some side effects go away as your body adjusts. I have to take medications just to stay alive and the biggest problem I’ve had is keeping track of all of them!
Other members, @kmacky @luki52 and @leale can join us and tell you more about using specific RA meds.
What is your biggest concern about taking the meds?

Jump to this post

The medicines they offer today versus 40 years ago are fantastic. The side effects are scary. But, they seldom happen. I don’t look at the side effects until I experience something and then check it out. This prevents a “self fulfilling prophecy “.

REPLY
kmacky | @kmacky | May 17, 2023
In reply to @becsbuddy "@beckydubolsky I know it can be very unnerving to start on new medications, but you really..." + (show)
@becsbuddy

@beckydubolsky I know it can be very unnerving to start on new medications, but you really need to if you want your life back. The drug manufacturers are required, by law, to list every possible side effect even if only 1 person experienced it. And some side effects go away as your body adjusts. I have to take medications just to stay alive and the biggest problem I’ve had is keeping track of all of them!
Other members, @kmacky @luki52 and @leale can join us and tell you more about using specific RA meds.
What is your biggest concern about taking the meds?

Jump to this post

My biggest concern is finding the right ones for me. See my doc tomorrow and hoping he has some good options for me.

REPLY
1 reply
beckydubolsky | @beckydubolsky | May 17, 2023
In reply to @kmacky "My biggest concern is finding the right ones for me. See my doc tomorrow and hoping..." + (show)
@kmacky

My biggest concern is finding the right ones for me. See my doc tomorrow and hoping he has some good options for me.

Jump to this post

I hope your rheumatologist can help you. 😊

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1 reply
beckydubolsky | @beckydubolsky | May 17, 2023
In reply to @becsbuddy "@beckydubolsky I know it can be very unnerving to start on new medications, but you really..." + (show)
@becsbuddy

@beckydubolsky I know it can be very unnerving to start on new medications, but you really need to if you want your life back. The drug manufacturers are required, by law, to list every possible side effect even if only 1 person experienced it. And some side effects go away as your body adjusts. I have to take medications just to stay alive and the biggest problem I’ve had is keeping track of all of them!
Other members, @kmacky @luki52 and @leale can join us and tell you more about using specific RA meds.
What is your biggest concern about taking the meds?

Jump to this post

My goodness. My concerns are that I have had chemo twice (bone marrow cancer & breast), my kidney bloodwork is elevated & high uric levels (gout related). My rheumatologist offered only two options which were hydroxychloroquine & methotrexate. He ruled the hydroxychloroquine out as i have Best’s disease, a rare genetic condition (vitelliform macular dystrophy) & the med could lead to blindness. Are there other options that you are aware of that helps with RA?

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beckydubolsky | @beckydubolsky | May 17, 2023
In reply to @beckydubolsky "I hope your rheumatologist can help you. 😊" + (show)
@beckydubolsky

I hope your rheumatologist can help you. 😊

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Thank you. 😊

REPLY
onetowatchst | @onetowatchst | May 18, 2023
In reply to @onetowatchst "Thank you. I will stay in touch." + (show)
@onetowatchst

Thank you. I will stay in touch.

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I've been started on steroids to aid in the non ending flares...or
what I call MEGA FLARE
*Wearing carpal tunnel braces on nights I don't work. Eating cleaner gluten free vegetarian diet...
No meds for the fibromyalgia at all. Asking for a plan there...it's quite hard to function normally or do basic tasks.

REPLY
kstar077 | @kstar077 | May 18, 2023
In reply to @becsbuddy "@beckydubolsky I know it can be very unnerving to start on new medications, but you really..." + (show)
@becsbuddy

@beckydubolsky I know it can be very unnerving to start on new medications, but you really need to if you want your life back. The drug manufacturers are required, by law, to list every possible side effect even if only 1 person experienced it. And some side effects go away as your body adjusts. I have to take medications just to stay alive and the biggest problem I’ve had is keeping track of all of them!
Other members, @kmacky @luki52 and @leale can join us and tell you more about using specific RA meds.
What is your biggest concern about taking the meds?

Jump to this post

My doc wants me to take embrel. It is over $1700. I can not afford that. What to do?

REPLY
2 replies
kstar077 | @kstar077 | May 18, 2023

What do you do about ringing in ear? My doc said there is no cure and wants me to get hearing aides. I hear ok so far but the ringing makes me crazy. Have you heard of people getting rid of the ringing. My doc says no cure.

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