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High RF but no CCP

A myRAteam Member asked a question 💭
Ellicott City, MD

I'm just full of questions (since I'm newly diagnosed...). I have high CRP (over 16), high sed rate (38), high rheumatoid factor (over 3,000) but normal anti-CCP. My RF was 271 in 2016 and has been steadily rising since that time. Back in 2016, I was told by a rheumatologist that there was nothing wrong. He did a physical exam of my hands and told me to go home (and that I didn't need to follow up with him). Anyway, 3 rheumatologists later, and my RF is over 3,000 and I was diagnosed with… read more

February 26, 2019
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Answer Summary

Members rallied around someone newly diagnosed with RA who had an extremely high rheumatoid factor over 3,000, sharing their own stories of... Read more

Members rallied around someone newly diagnosed with RA who had an extremely high rheumatoid factor over 3,000, sharing their own stories of similarly high RF levels ranging from over 7,000 to numbers that never decreased, and validating the frustration of finding doctors who take symptoms seriously. Several members offered practical guidance, including giving methotrexate 8-10 weeks to work, keeping prednisone on hand for flare-ups with a typical 5-day tapering dose, and exploring CBD for sudden joint pain, while many recounted the unpredictable nature of RA with ankle and foot pain that appears and disappears without warning. A recurring theme was the importance of finding a trustworthy rheumatologist willing to investigate thoroughly, advocating for yourself when dismissed, and finding community support from others who understand the invisible struggles of living with RA.

A myRAteam Member

MartiK: I think it's essential to have a doctor that you can trust and you can feel comfortable with. If a new drug is suggested, and you're not comfortable with it, you need to tell the doctor and have a conversation about what drug you'd want to be on. I have a litany of drugs that made me sick, or I didn't feel comfortable switching to. I talked it out with the rheumy, and then we decided where to go from there.

PeggykAnne: My rheumy gave me a prescription for prednisone for flareups. He wrote it out when he knew I was going to Cali from Conn. I carried it with me and didn't need it on the trip. I always carry prednisone when I travel. I've used it once while traveling and several times at home. I do a 5-day treatment where I take 5 tablets the first day, 4 the next day, 3 on the third day, then 2, and on the 5th day, I take one. The flare is usually just 2-3 days with the prednisone treatment, but you need to wean slowly so you need to do the 5-day treatment. If it's a really bad flare, the doctor may recommend a 7-day treatment.

March 2, 2019
A myRAteam Member

That is how ra hit for me. Woke up in intense pain. Thought I stepped on glass.

March 4, 2019
A myRAteam Member

How long can a flare last Going on a big trip soon and so so sore Worried that it will spoil the holiday

March 2, 2019
A myRAteam Member

It does seem like an uneven step can cause it. Every so often my ankle gets swollen and black and blue. I notice it once in awhile, but can't remember pain that would have caused it. Icing does help a bit.

March 24, 2019
A myRAteam Member

Years ago,I was at the grocery store one day to pick up something for dinner. By the time I got to the checkout, I could barely walk. Somehow I made it out to the car... my knee was huge and I couldn't bend it. I don't know hoe I made it home, but couldn't pull into the driveway... it had just been tarred. I had to text my kids to come out and help me in. I called my rheumy (it was his day off), and he was concerned and had me meet me at his office. After he removed a lot of fluid by syringe, then gave me a prescription for prednisone for a week. Eventually the knee was replaced.

March 23, 2019

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