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.

pb50 | @pb50 | Jun 5 12:15pm
In reply to @ferret911 "I see you got a few responses. I agree that a dedicated subgroup would be valuable;..." + (show)
@ferret911

I see you got a few responses. I agree that a dedicated subgroup would be valuable; there are too many varied responses/inputs on the Mayo site, all with different diagnoses. We need a dedicated negative RA subgroup. What are you doing to try to get Nayo to organize this? Clearly you’d need their agreement/help to organize this for us. As it is now, it’s very time consuming to screen the dozens of daily mixed inquiries. Have you tried to get Mayo to organize this? Can I help you?

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Why do we think sero negative RA differs from sero positive in a meaningful way?

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ferret911 | @ferret911 | Jun 5 5:53pm

I’m new to this world, and finding it quite difficult to understand-I was surprised to learn gout is arthritis after watching Apple+’s series Franklin:). Everything’s arthritis! I tried to research the worlds of positive and negative, but I didn’t gain an answer of my question: “So what?” Maybe someone qualified can enlighten us. It seems it might govern a different diagnosis/treatment regimen between the two? Are + and - tested differently, then treated differently? Who knows?

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pippie | @pippie | 2 days ago
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.

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Tina, been living comfortably with RA since 2013 (on sulfasalazine) but this year it's gotten way worse. Looking for tips/products that work.

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pippie | @pippie | 2 days ago
In reply to @kanaazpereira "Hello @gizmanbarb, Welcome to Connect; thank you so much for introducing yourself and joining the group...." + (show)
@kanaazpereira

Hello @gizmanbarb,

Welcome to Connect; thank you so much for introducing yourself and joining the group.

Although for different conditions, we have quite a few members who have used methotrexate; @jerseygirl926, @crhp194, @lisa_sj99, @lorrainechavez, @debcha, @sherw, @emmur16, @sallyann, @luladavis, @rosestea, @julied838, @mswanda, @djfd @amkaloha @taterjoy @lisabeans @zenk @jewel8888 @smgarner1 would you share your experience with this drug?

You may also wish to view these discussions, and tag members there for more insight:
I'm looking for information on Methotrexate for Autoimmune Diseases: http://mayocl.in/2h2kHZY
Is it possible to go off RA drugs by following a plant based diet: http://mayocl.in/2oJgPDN
Side affects from Anastrozole and MCTD leaves my body achey: http://mayocl.in/2p6loo8

@guzmanbarb, what side effects are you experiencing? Has your physician offered other medications to relieve the pain?

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I tried methotrexate but the side effects of headache and diarrhea. I also tried suldasalazate but the has only worked for 4 months. Sulfasalazine gas worked up until this year. I am in need of a new drug and tips etc.

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1 reply
pippie | @pippie | 2 days ago
In reply to @pippie "I tried methotrexate but the side effects of headache and diarrhea. I also tried suldasalazate but..." + (show)
@pippie

I tried methotrexate but the side effects of headache and diarrhea. I also tried suldasalazate but the has only worked for 4 months. Sulfasalazine gas worked up until this year. I am in need of a new drug and tips etc.

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Has anyone had luck with non-prescrption ideas, ointments,.medical Marijuana etc. Nothing I have tried worked as far as a topical.

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deborahyost3 | @deborahyost3 | 1 day ago

Greetings, my name is Deborah. I live in Lincoln Nebraska .
Primary Sjogren's is my diagnosis, but The lab work for both Ari and Lupus both come back borderline. My mom, my aunt, my brother and my sister all had RA and my sister also had lupus. They are all since deceased.

I hope I am able to be in this forum because it may very well be that I have RA undiagnosed already given my family history. Since the diseases are so similar in treatment, my rheumatologist is content to stick with my primary Sjogrens which is systemic Sjogrens, not just the sicca symptoms. It manifests actually very much like RA.
My rheumatologist has me on hydroxychloroquine 400 mg daily. My pain doctor has me on 4.5 mg of LDN daily. Over the counter I use about one Aleve a day for my joint and tendon pain and I take 25 -50 mg of CBD daily. I also use legal THC in micro dose amounts (2-4 mg). I I also micro dose nicotine (not tobacco but pure nicotine) and amanita muscaria mushrooms. Both legal by the way! The who says that nicotine is not addictive until you get to 5 or more milligrams a day. I am microdosing one and a half to 3 mg 6 days a week with a skip day every week and I take a skip week every month so I don't get addicted. So far, with the nicotine. I have no problem on my off days and weeks.

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debbiee | @debbiee | 1 day ago
In reply to @yanie1020 "Hi, I’m new on here. Have had RA for 30 years but am doing well on..." + (show)
@yanie1020

Hi, I’m new on here. Have had RA for 30 years but am doing well on Rituxan infusions every six months. I had the best rheumatologist you could ever have but he retired and I’m now seeing a nurse practitioner because I’m doing so well. If you’ve tried 3 or 4 medications that aren’t working and have good insurance ask your doctor about Rituxan. I even forget I have RA!

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My son was diagnosed with RA when he was 17 years old. Currently, he has been prescribed
Rituxan infusions gives his C-Reactive is 1500. He is 52 years old and has poly-articular RA,
which means it is in every joint. I am concerned about the side effects of Rituxan.
He will begin the first 8 hour infusion @ Mayo in Rochester followed by another 2 week later,
and thereafter, every 6 months. Please share your experience with this biologic regarding
any side effects.
Thank you and stay well,
Debbie

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