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.

@nanilynn

Anyone have problems with doctor shrugging off your flare up (current labs CRP 16.2 and SED 54) and unable to reach doctors on a Saturday. I called and spoke to rheumatology office would only connect me to cover if an emergency. I called and spoke to cover for my pcp and stated I had stiff hands and shoulder with pain and told him my rheumatologist had given me prednisone in the past for an flare up and he put thru a prescription. The rheumatologist responded on Monday and said all my labs were fine (other ones also which were fine) and wait for appointment in February. My pcp had a kitten that I had asked for prednisone (which could have been denied) and I should only discuss with rheumatologist.
P.S. I responded to both emails explaining the situation to no avail. It appears no one is talking to me.

Should I have waited until Monday in the hope that someone would talk to me about this problem? Gone to the ER and pissed off my insurance company? Shot myself?

My doctors and hospitals are highly rated (in Chicagoland).

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What is important to us is not important to them. I am surprised to hear that Chicago doctors ignored you. I wouldn’t worry about pissing off your insurance company. They’re there because you pay them. Medical care is very different in sunny Florida. I think the doctors are here to play golf. I am in the south east, and there are more elderly here. We have more emergencies and less care. Worry not about your behavior just to get taken care of as soon as you can.

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@marilynredder2367

What is important to us is not important to them. I am surprised to hear that Chicago doctors ignored you. I wouldn’t worry about pissing off your insurance company. They’re there because you pay them. Medical care is very different in sunny Florida. I think the doctors are here to play golf. I am in the south east, and there are more elderly here. We have more emergencies and less care. Worry not about your behavior just to get taken care of as soon as you can.

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Thanks. I do have some responsive doctors. I’m simply tired of support staff that thinks their job is to protect the doctor from his/her patients, medical staff that is unresponsive, not returning calls requesting assistance, etc.
My friend, a nurse, keeps saying it’s the system. Then we need to change the system.

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I was diagnosed with RA in 2016 after an emergency surgery of a colon perforation and went into septic shock. I also have Osteoarthritis in my knees, hips, and spine. I have been on 8 different meds, including Methotrexate, Orencia, Leflunomide, Humira, Enbrel, Xeljanz, Rinvoq, and Plaquenil. They all have tremendous side effects for me, but the one that seems to work is Plaquenil. My CRP and SED rates are still pretty high. I am now going away from Pharmaceuticals (they never seem to cure,
just treat symptoms) and looking into natural ways to reduce inflammation and go into remission and seek a cure like: fasting, Mediterranean diet, absolutely no sugar, acupuncture treatments, meditation and spiritual healing.

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I will go Thursday this week for my Bone Density Scan so I will find out then I guess how much problems I have.

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Greetings All. I am getting Rituxan infusions every 6 months and I'm wondering if any of you get your infusions at a private clinic? Getting it at the hospital infusion center through my health insurance costs $23k. I pay out my maximum deductible of $7k but that on top of my monthly premiums means that my healthcare costs are over $1000 a month. I'm trying to see if I can order the Rituxan online (seems to be about $800) and have the infusion done at a private clinic (seems to be about $4000). Is this a crazy idea? I'm at the beginnings of researching it in advance of my next infusion in 5 months. I'd be interested in any info you have to share.

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@grammym2021

I was diagnosed with RA in 2016 after an emergency surgery of a colon perforation and went into septic shock. I also have Osteoarthritis in my knees, hips, and spine. I have been on 8 different meds, including Methotrexate, Orencia, Leflunomide, Humira, Enbrel, Xeljanz, Rinvoq, and Plaquenil. They all have tremendous side effects for me, but the one that seems to work is Plaquenil. My CRP and SED rates are still pretty high. I am now going away from Pharmaceuticals (they never seem to cure,
just treat symptoms) and looking into natural ways to reduce inflammation and go into remission and seek a cure like: fasting, Mediterranean diet, absolutely no sugar, acupuncture treatments, meditation and spiritual healing.

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I too am trying the diet route. So hard! But worth it. Thanks for the motivation.

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@astanko

Greetings All. I am getting Rituxan infusions every 6 months and I'm wondering if any of you get your infusions at a private clinic? Getting it at the hospital infusion center through my health insurance costs $23k. I pay out my maximum deductible of $7k but that on top of my monthly premiums means that my healthcare costs are over $1000 a month. I'm trying to see if I can order the Rituxan online (seems to be about $800) and have the infusion done at a private clinic (seems to be about $4000). Is this a crazy idea? I'm at the beginnings of researching it in advance of my next infusion in 5 months. I'd be interested in any info you have to share.

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I have RA...was diagnosed after a bout of Bronchitis at the age of 40. There was not much on the market for me then and thus far it remains the same. However, everyone has different results, we are NOT all the same. Have open discussions with your RA doctor, not with others who have RA or arthritis it will drive you crazy. Ask the doctor for the link to the Pharmical company, they will help you with costs or offer you other avenues to assist you in your position.

I hope this helps you.

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@grammym2021

I was diagnosed with RA in 2016 after an emergency surgery of a colon perforation and went into septic shock. I also have Osteoarthritis in my knees, hips, and spine. I have been on 8 different meds, including Methotrexate, Orencia, Leflunomide, Humira, Enbrel, Xeljanz, Rinvoq, and Plaquenil. They all have tremendous side effects for me, but the one that seems to work is Plaquenil. My CRP and SED rates are still pretty high. I am now going away from Pharmaceuticals (they never seem to cure,
just treat symptoms) and looking into natural ways to reduce inflammation and go into remission and seek a cure like: fasting, Mediterranean diet, absolutely no sugar, acupuncture treatments, meditation and spiritual healing.

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I also have TA and so relate to what you now want to explore. I also have been on numerous biologics and the stop working and i then have to default to another option. Currently on Remicade every 8 weeks and methotrexate which began losing hair. Additionally on Gabelentim and tramadol for pain but also take a muscle relaxant for back spasms. Hopefully i can explore the no sugar route. I don’t eat meat and do eat primarily mediterranean . Would love an accountability partner.

Blessings and Health,
G

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Methotrexate affects the kidneys when your kidneys are already not functioning well.

Also are you on plaquenil or the generic hydroxycloroquine? The hydroxycloroquine gives me side effects and wondering if the plaquenil would give less side effects.

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@rcarter6675

Methotrexate affects the kidneys when your kidneys are already not functioning well.

Also are you on plaquenil or the generic hydroxycloroquine? The hydroxycloroquine gives me side effects and wondering if the plaquenil would give less side effects.

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@rcarter6675 Welcome to Mayo Clinic Connect! I’m glad you found this reputable site to ask your questions. Members are very helpful so I’m sure you will hear from them soon. I’ve listed some other discussions about RA that you may find helpful.
https://connect.mayoclinic.org/discussion/ra-goals/
https://connect.mayoclinic.org/discussion/husband-diagnosed-with-ra/
How long have you had RA?

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