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.

Hi. My name is Carmen and I was diagnosed with RA in 2003. It has been a long hard road but I'm ok.

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@along23

Thank you. After 2nd week. Dr. Is doing bloodwork. Then adding to 6 pills for 2 wks then more bloodwork. It's interesting that this is such an old drug. Do you know what the best drug is for RA?

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@along23 Hello and welcome from me, too. As a nurse who’s had lots of experience with people and drugs, I would say that there is no ‘right’ drug. We’re all different and what works for one might not work for others. Just as some get side effects and others don’t. The best thing is to work with your doctor and give the drugs a chance. An example is me: I’ve been taking an antidepressant for 25+ years. It’s an old drug but it works well for me, even though they’ve come out with so many newer ones. Hope you can find an RA drug that works for you! You said doctor is adding 6 pills for two weeks—what are these 6 pills?

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@becsbuddy

@along23 Hello and welcome from me, too. As a nurse who’s had lots of experience with people and drugs, I would say that there is no ‘right’ drug. We’re all different and what works for one might not work for others. Just as some get side effects and others don’t. The best thing is to work with your doctor and give the drugs a chance. An example is me: I’ve been taking an antidepressant for 25+ years. It’s an old drug but it works well for me, even though they’ve come out with so many newer ones. Hope you can find an RA drug that works for you! You said doctor is adding 6 pills for two weeks—what are these 6 pills?

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I agree with you. I feel blessed that after many years of trying "things" now I know what works for me. My health is not 100% but I can deal with it. Also, I know my body and I am able to tell my Doctors and health care providers what works best for me.

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@candrgonzalez

Hi. My name is Carmen and I was diagnosed with RA in 2003. It has been a long hard road but I'm ok.

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what kind of meds are you on now to treat your RA? I have had RA since 1989. thank you.......kozlo52

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@kozlo52

what kind of meds are you on now to treat your RA? I have had RA since 1989. thank you.......kozlo52

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I am on Xeljanz. I was prescribed 5 mg twice a day (but I do take breaks and sometimes I don't take it for a month or two and right now I'm taking it once a day). I do tell my Rheumatologist when I do this. Also a big improvement for me has been to stay away from gluten. I do use moist heat and Voltaren gel for my joint pain.

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@candrgonzalez Hello. Just been wondering how you’re doing with your RA. Is the xeljanz still working to control things? I’m curious, though. I’ve never heard of a medication vacation/stopping the pills for a time and just wondered how it works.Do your symptoms increase? And when you restart the pills, can you get things under control again? Can you explain?

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Hi Becky. Yes, I do take myself off of it and yes the symptoms do return (at about 2 months off the medication) and yes Xeljans does control my symptoms again. It can take from 2 weeks to 6 months for Xeljanz to start working, for me it takes about 4 weeks. My last blood tests (inflammatory markers) were on the "normal range" off the medication for 2 months. This is NOT a recommendation from my Rheumatologists, it is something that I choose to do.

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Hi, I have had RA for 10 years. I was first diagnosed with Hashimoto’s Thyroiditis. One of my rheums stayed I ha e secondary Sjogrens Syndrome. I started plaquenil and within 1 month added methotrexate. I now take 7.5 mg Rasuvo (methotrexate), and just started xeljanz. I have failed Humira & Enbrel. RA Warrior has given me the most accurate information on RA.

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@fighter

Hi, I have had RA for 10 years. I was first diagnosed with Hashimoto’s Thyroiditis. One of my rheums stayed I ha e secondary Sjogrens Syndrome. I started plaquenil and within 1 month added methotrexate. I now take 7.5 mg Rasuvo (methotrexate), and just started xeljanz. I have failed Humira & Enbrel. RA Warrior has given me the most accurate information on RA.

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Hello @fighter -- Welcome to Connect. Thank you for sharing. I was not familiar with RA Warrior so I did a search and found the website with links to some really good information.

RA Warrior Printouts - http://rawarrior.com/printouts/
RA Warrior Blog - http://rawarrior.com/blog/

@fighter are you able to share what helped you the most on RA Warrior?

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@johnbishop

Hello @fighter -- Welcome to Connect. Thank you for sharing. I was not familiar with RA Warrior so I did a search and found the website with links to some really good information.

RA Warrior Printouts - http://rawarrior.com/printouts/
RA Warrior Blog - http://rawarrior.com/blog/

@fighter are you able to share what helped you the most on RA Warrior?

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What helped me the most on RA Warrior--I don't even know where to begin! Doctors don't educate you about the disease. They don't have time. This is the best educational source because it's accurate; it comes from an e-patient herself, Kelly Young. (You can also read about e-patient Dave; different disease.) Patients can get some of the best information from others who are well educated in their disease, i.e,. Kelly Young. Just a little background: Kelly Young advocates for the Rheumatoid community at the professional level (physicians & research). She's even advocating to change the name to Rheumatoid disease as people think it's arthritis, rather than autoimmune disease. So back to your original question. When I was first diagnosed I was scared. I found RA Warrior through reading. I caught my disease early as I was a pharmaceutical rep. When I was diagnosed, I had no symptoms, but the young rheum I had seen was so panicked, I couldn't see him again. I was panicked then, and started to research RA myself. Most information I saw said RA had bilateral symptoms. I wasn't seeing anything. I found RA Warrior in this research. One of the symptoms I read about was something I had had, but never thought to mention to the doctor as it was before I was diagnosed -- raspy voice at times, and when I'd go to church and tried to sing, nothing would come out! I found on RA Warrior that we have a joint located near the voicebox (cricoarytenoid), which when inflamed can produce these symptoms. When I started to have symptoms, they weren't bilateral. So before I digress even further, RA Warrior gave me education about real symptoms from patients that differ from one to another. I even went on a chat where Kelly had a rheumatologist on board answering some questions, which was helpful. I learned about the struggles others were having, which scared me, but prepared me mentally for the symptoms I would start having and the medications I would eventually be prescribed. This helped eliminate the panicked feeling. I don't know if I've truly answered your question, but I find it's been my best resource for accurate information. (If you read about e-patient, Dave, his life was truly saved by interacting with others who had the same disease; he didn't have much or any choices to live. He found out about a chemotherapy that most doctors didn't even offer for kidney cancer. He found an oncologist that would give it to him, and he lived to tell about it!

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