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?

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

@kmacky

Can you share anything about side effects and/or the effectiveness of Humira?
I am weaning myself off prednisone and have discontinued methotrexate two weeks ago because of unbearable side effects.

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Humira worked GREAT for me! I was on it for a couple of years before it lost effectiveness for me. I don't remember there being any significant side effects.

There are lots of good, new medications. At this point, though, there's still a lot of trial and error needed to find the ones that work best for you.

One dose of methotrexate gave me "the runs" for a month! But it does work for some people.

Good luck with it!

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@annewoodmayo

Humira worked GREAT for me! I was on it for a couple of years before it lost effectiveness for me. I don't remember there being any significant side effects.

There are lots of good, new medications. At this point, though, there's still a lot of trial and error needed to find the ones that work best for you.

One dose of methotrexate gave me "the runs" for a month! But it does work for some people.

Good luck with it!

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Thanks so much for your input! I just added Humira to today’s research list👍❤️

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@susandenise

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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Hello
Steroids are only used for Flare-ups bc, the pain is unbearable. after taking the Steroids for 2 days, your pain and inflammation should he no more. You had RA for 10 yrs, you should be on injections WITH pills by now. No cure the whole idea is to SLOW THE DISEASE DOWN. Without meds & injections it will progress so fast. Not on real medication ur hands/feet will be deformed...u will b dependent on someone for probably 8 to 10 yrs. Not on real meds still you will catch Auommia , bronchitis ....You will probably die from the Auommia. It's not common for organs to shut down one after another...IT DOESN'T HAPPEN. IT TAKES ALOT 4 THAT TO HAPPEN. It really only damages your eyes. Ur doc is a quake and u seemed to not even care about getting better. Do ur research and will see he's a wrong and doesn't care for his patients.
Good Luck

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@tarmansbks

Doctor keeps encouraging me to try Methotrexate and I keep resisting. I would like some anecdotal reports from users who have taken it with success and those who experienced side effects that precluded it. I can read the side effects but would rather hear first hand accounts. I am continuing on medrol and have been for 10 years and all my blood work that methotrexate could affect is now normal. Thank you. M.E.

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I have been on Mextroate for 7 yrs now, works great for me , Every dtug out there has side effects and they have 2 list them to cover their butts. The side effects are taken from group studies. So if 1 person out of 2000
says my hair is turning yellow they have 2 list it. Mextroate only effects liver. I take folic acid everyday to help the liver. My docs runs bloodwork every 6 months. If need be he will adjust qty.
I use Orencia. I can feel a big difference and it's a better one. Haven't felt good with RA in a long time. But it's trial and error. I tried Humina I kept getting bronchitis. TAKE CARE

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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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@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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Thanks for sharing! I will definitely research Rituxan and talk to my doctor. I love your photograph! 👍

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@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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Welcome @yanie1020. What a lovely photo of you. I hope you'll add it to your profile.

How long have you been taking Rituxan?

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@colleenyoung

Welcome @yanie1020. What a lovely photo of you. I hope you'll add it to your profile.

How long have you been taking Rituxan?

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Thank you! I’ve been taking Rituxan for about 9 years.

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Hello., 👋
I am new here and very glad to have found this forum! I was diagnosed with Seropositive RA in 2018. I was also told I could potentially have Sarcoid due to the issue with my skin. However this has not been validated. My Rheumatologist has insisted that I must be on stronger medication but I have not been able to tolerate any of the biologics. I have tried many different medications & biologics including Humira, Orencia,and Renvoq. I had severe skin reactions with all of them. Unbearable severe itching and severe burning on both arms and shoulders which was so bad I had to have ice on me constantly or sit in a bath of cold water! It was No Way to live and still affects my quality of life drastically, so I had to stop each Biologic. The itch has been ongoing ever since. I also tried Methotrexate ( which I felt well on, with no itch) and Leflunomide, but I had to stop taking them due to elevated liver enzymes. The only one I can still take is Plaquenil. The question has arisen that perhaps after having 4 full Moderna Covid vaccines, it has messed up my immune system even more! Prior to being diagnosed with RA I had a Lobectomy and Thorocotomy, due to multiple grandulomas throughout my upper lung lobe. My Rheumatologist and Dermotologist have both said I need to go stay at the Mayo Clinic where all of the specialties, Rheumatology, Pulmonology and Dermatology can work together to figure out what is going on with my immune system and find some type of medication that will treat my RA and skin conditions. The problem is I feel so horrible at the moment I don’t even know how to start that whole process. The Dr.s have said I don’t need a referral??? I’d be happy at this moment if they could stop this unbearable itch so I can at least get a decent night of sleep. Has anyone bee treated simultaneously by different specialists at Mayo and how do you go about getting appointments with them all at once? I could definitely use guidance! Thank you in advance!

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