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.

naomisantiago06 | @naomisantiago06 | Nov 11, 2019
In reply to @boomerexpert "Biologics work for only 35-50% of those w/RA...I've tried 5, none worked; Methotrexate doesn't work for..." + (show)
@boomerexpert

Biologics work for only 35-50% of those w/RA...I've tried 5, none worked; Methotrexate doesn't work for me; Plaquenil made me ill (oooh that rhymed!); get relied from only steroids or Naproxyn. The notion of becoming "normal" with these drugs is PR, not reality for many - and at a cost of some nasty side-effects. So, don't despair. Keep searching for what will work for you with the understanding that we have a serious, degenerative disease that can at best be mitigated with today's science, not eliminated.

Jump to this post

Hello, I’m currently taking Methotrexate and Plaquenil, I’ve been on these two for the past two years. I was diagnosed with Breast cancer 2 1/2 years ago and the new traditional treatment was not available for me, I also take Opiates that no longer works so I’m currently looking for a all natural remedies to help with the pain and hopefully get my life back.

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Nov 11, 2019
In reply to @naomisantiago06 "Hello, I’m currently taking Methotrexate and Plaquenil, I’ve been on these two for the past two..." + (show)
@naomisantiago06

Hello, I’m currently taking Methotrexate and Plaquenil, I’ve been on these two for the past two years. I was diagnosed with Breast cancer 2 1/2 years ago and the new traditional treatment was not available for me, I also take Opiates that no longer works so I’m currently looking for a all natural remedies to help with the pain and hopefully get my life back.

Jump to this post

Hello @naomisantiago06, I would like to add my welcome to Connect along with @boomerexpert and other members. I have arthritis but not RA although my mother had it and I can remember all of the pain she had in her hands. I've read about some natural treatments but don't really know if they work or not. I'm guessing they might work for some. Here are some links that might be helpful:

Medical News Today - Natural remedies for rheumatoid arthritis
-- https://www.medicalnewstoday.com/articles/315492.php

Arthritis Foundation - 9 Supplements for Arthritis
-- https://www.arthritis.org/living-with-arthritis/treatments/natural/supplements-herbs/9-supplements-arthritis.php

Have you found any natural treatments that help a little?

REPLY
naomisantiago06 | @naomisantiago06 | Nov 11, 2019
In reply to @emt1954 "Hello! I have had RA for around 15-20 years. Tried to get by with just Celebrex..." + (show)
@emt1954

Hello! I have had RA for around 15-20 years. Tried to get by with just Celebrex and then Meloxicam. Finally, didn't work and went to a rheumatologist last year, Started me on Methotrexate, got elevated liver enzymes, next was Enbrel, allergic to it (hives). Tried Orencia infusions and seemed to go well until my leg swelled up. So, In August, switched to Actemra infusions and 2 months in, that quit working and now had my first injection of Cimzia a week ago. So far, so good. But I am still on a prednisone taper from the last big flare up. All these drugs have targeted the TNF inhibitors, IL6 and other inflammatory markers. Not sure what else is out there to try? Getting frustrated at not being able to be "normal". Am I the only one feeling this way?

Jump to this post

Hello my name is Naomi and no you’re not the only one, I’ve had RA for two years and my enzymes in the beginning was 1500 and had to be placed on steroids taper for 3 weeks before being started on methotrexate and Plaquenil , I have been fighting to get my lift back for two years now. I’m currently looking for a all natural remedies that can help because taking the medicine with all the side affects is terrible.

REPLY
1 reply
kozlo52 | @kozlo52 | Nov 12, 2019
In reply to @naomisantiago06 "Hello my name is Naomi and no you’re not the only one, I’ve had RA for..." + (show)
@naomisantiago06

Hello my name is Naomi and no you’re not the only one, I’ve had RA for two years and my enzymes in the beginning was 1500 and had to be placed on steroids taper for 3 weeks before being started on methotrexate and Plaquenil , I have been fighting to get my lift back for two years now. I’m currently looking for a all natural remedies that can help because taking the medicine with all the side affects is terrible.

Jump to this post

my experience with methotrexate (1940's chemotherapy drug) was i had to get off it after a few weeks because it drove my liver enzymes extremely high.be very careful with plaquenil because you will need eye exams frequently. my experience with plaquenil was it made me sick after 3 days. note you may not experience these same symptoms as i did. i don't know of any remedies to help control the RA. What is your sed rste (0-20) is normal- this is a measure of inflamation and pain. also what was your rheumatoid factor? this is all from the bloodwork. alll the biologic modifiers for RA can have very bad side effects. did your doctor prescribe any NSAIDS? i was on mobic (generic version) for many years and it really helped with pain. but all nsaids can affect the kidneys. ... god bless and good luck....kozlo52

REPLY
kozlo52 | @kozlo52 | Nov 12, 2019
In reply to @naomisantiago06 "Hello my name is Naomi and I’m new to the Mayo Clinic RA chat, I joined..." + (show)
@naomisantiago06

Hello my name is Naomi and I’m new to the Mayo Clinic RA chat, I joined because I was looking for natural remedies to help me with my on going Battle with pain, I have RA in my lower back ,the joints of my hands , and shoulders , however The RA in my back has caused severe nerve pain in my legs and feet. I’m currently on pain medications that does not work any longer, so I’m trying to help myself by looking for all natural remedies. I was hoping I would see maybe a post from someone who was having a better experience than I am currently.

Jump to this post

for the nerve pain in the back and thru the legs you might want to consider lower back injections with cortisone. however you will need a lumbar MRI of the lower back to determine were to inject. i have stenosis of the lower back L4-L5 and get cortisone injections every 3 months. it doeshelp control the pain. one medicine that really helped alleviate back nerve was lyrica. it worked extremely well for me for 1 day. after that i developed a whole body itch that took a month to get rid of. i couldn't take it anymore. gabapentin or neurontin may also help, since lyrica is very expensive. i have talked to people who have had lower back surgeries and lot of these surgeries don't work and can make pain even worse. i am doing my best to avoid back surgery..... best of luck.....kozlo52

REPLY
kozlo52 | @kozlo52 | Nov 12, 2019
In reply to @emt1954 "Hello! I have had RA for around 15-20 years. Tried to get by with just Celebrex..." + (show)
@emt1954

Hello! I have had RA for around 15-20 years. Tried to get by with just Celebrex and then Meloxicam. Finally, didn't work and went to a rheumatologist last year, Started me on Methotrexate, got elevated liver enzymes, next was Enbrel, allergic to it (hives). Tried Orencia infusions and seemed to go well until my leg swelled up. So, In August, switched to Actemra infusions and 2 months in, that quit working and now had my first injection of Cimzia a week ago. So far, so good. But I am still on a prednisone taper from the last big flare up. All these drugs have targeted the TNF inhibitors, IL6 and other inflammatory markers. Not sure what else is out there to try? Getting frustrated at not being able to be "normal". Am I the only one feeling this way?

Jump to this post

what is your current sed rate (0-20) is normal? iahve and continue to battle RA for 30 years. i have had 19 operations in 19 years. all these operations were due to RA or opioids, except for one whic was a stomach fundoplication and it doesn't/ heasen't worked for me. you may wast to condider medical marijuana . i have read that a 30: 1 ration of CBD to THC works for RA patients to alleviate pain. however you can't drive with medical marijuana. physically you might feel ok but your response reflexes may not be as sharp. if stopped for a traffic or accident by police and you are tested it is an automatic DUI in the state of PA. ... good luck....kozlo52

REPLY
fannie | @fannie | Nov 17, 2019
In reply to @kanaazpereira "Hello @kozlo52 @blindeyepug @barneythe2nd @nanke99 @vickiekay @tbeckys @iman_im @lisa_sj99 @1825 @callyrae @jewel8888 @boomerexpert, I'd like to..." + (show)
@kanaazpereira

Hello @kozlo52 @blindeyepug @barneythe2nd @nanke99 @vickiekay @tbeckys @iman_im @lisa_sj99 @1825 @callyrae @jewel8888 @boomerexpert,

I'd like to invite you to this new discussion about rheumatoid arthritis, where it will be easier for you to meet other Connect members living with, and talking about RA. Pull up a chair and tell us a bit about yourself.

Jump to this post

Ms. Pereira, I'm not interested in rheumatoid arthritis.
I have issues that does reflex Rheumatoid arthritis.

REPLY
1 reply
Moderator
Lisa Lucier, Moderator | @lisalucier | Nov 17, 2019
In reply to @fannie "Ms. Pereira, I'm not interested in rheumatoid arthritis. I have issues that does reflex Rheumatoid arthritis." + (show)
@fannie

Ms. Pereira, I'm not interested in rheumatoid arthritis.
I have issues that does reflex Rheumatoid arthritis.

Jump to this post

Hello, @fannie, and welcome to Mayo Clinic Connect. You mentioned you are not interested in rheumatoid arthritis. Wondering if you have other health conditions that have brought you here?

REPLY
1 reply
fannie | @fannie | Nov 18, 2019
In reply to @lisalucier "Hello, @fannie, and welcome to Mayo Clinic Connect. You mentioned you are not interested in rheumatoid..." + (show)
@lisalucier

Hello, @fannie, and welcome to Mayo Clinic Connect. You mentioned you are not interested in rheumatoid arthritis. Wondering if you have other health conditions that have brought you here?

Jump to this post

Yes, I have an undiagnosed auto immune disease. Im very fatigue, rash , lip swelling , itching ,dry mouth . I've been to a rheumatologist, but still without answers. I had stents put in my legs last year, im allergic to nickel, which the stents have nickel in them. I'm searching for answers, and would like to know if anyone with stents having could be having the same issues.
Thanks

REPLY
1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Nov 19, 2019
In reply to @fannie "Yes, I have an undiagnosed auto immune disease. Im very fatigue, rash , lip swelling ,..." + (show)
@fannie

Yes, I have an undiagnosed auto immune disease. Im very fatigue, rash , lip swelling , itching ,dry mouth . I've been to a rheumatologist, but still without answers. I had stents put in my legs last year, im allergic to nickel, which the stents have nickel in them. I'm searching for answers, and would like to know if anyone with stents having could be having the same issues.
Thanks

Jump to this post

@fannie Did you have all these symptoms before you had stents put in your legs? Did the doctors or nurses comment on your symptoms? Maybe you could ask your doctor if the stents are causing your problems, especially as you say you are allergic to nickel. Could you make an appointment with your doctor and ask if it’s possible? Let us know

REPLY
2 replies
View MoreView Less
Please sign in or register to post a reply.