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A myRAteam Member asked a question 💭
Cincinnati, OH

I usually don't post to these kind of boards, but I've been reading some of your other symptoms and your histories and I figured this is where I would get an honest answer. I was diagnosed 3 years ago because my primary care doc did some routine blood tests and my RA factor came back high. I felt fine. The only places where I had been dealing with pain were diagnosed as OA by other doctors because they took xrays. But, I went to a rheumatologist because that's what my primary care doc said to… read more

April 29, 2018
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A myRAteam Member

thank you everyone for your replies. I really do appreciate you taking the time to respond. I guess I'll start by giving you more details about how I ended up here. My daughter and I go to the same PCP. My daughter has a lot of problems with sinus infections. Antibiotics didn't seem to help. So, our PCP ordered a test to detect autoimmune diseases. Her test result came back normal for RA, but there was a weird result for something called a nuclear antibody, or something like that. Since this particular antibody is inherited, our PCP thought I should be tested for that as well. The test results for me came back normal for the antibody, but my rheumatoid factor was 240 so she suggested I go see a rheumatologist. The CRP markers were well within normal range (<10). Without doing any x-rays to determine if my joints were hurting from OA or not, the rheumatologist immediately put me on methotrexate which made me very sick. So she switched me to injectable MTX. She said my fingers were swollen, but I never thought they were and they didn't hurt me. I guess I should have done more research on where RA strikes before agreeing to inject myself with MTX, but I would have thought the rheumatologist would explain that to me. At the time, the only places where I had pain were lower back, one shoulder, thumb joints and both feet. I went to a hand surgeon who took x-rays of my hands and showed me that my thumb joints were hurting from OA and I've had one of the joints replaced. I then went to an ortho doctor about my shoulder, and he took an x-ray and showed me that I had bursitis in that shoulder. Again, not RA. I have had several surgeries on my feet and now have OA in my ankle and big toes. Again, not RA. I had spinal fusion surgery on my lower back and the rheumatologist said that RA does not hit the spinal cord. So, not RA. Every time I get an infusion (every 8 weeks) they do blood work. I've traced my C-Reactive Protein markers (CRP) and it has always been well within normal range, even before I started RA treatment. I am going to go to another rheumatologist to get a second opinion. I just think it's important to trust your doctor, and right now I don't. Thanks again for all your suggestions. I really do appreciate them.

May 2, 2018
A myRAteam Member

Wow! Quite the ordeal! Sorry for your pain and suffering. Ankylosing spondylitis could be considered? It is an autoimmune disease in the RA family. Hope you find a doctor that tells you the answers you want to hear. Keep us posted on your journey.

May 3, 2018
A myRAteam Member

I understand how frustrating it can be. I was crawling down the stairs in the morning before I went to my doctor. That was October of 1994. I was diagnosed Feb 23, 1995. We tried many meds including Methotrexate. I was so thankful. When Remicaid came along. Due to multiple events that was stopped and since then I have been through almost every biological that comes out. Though all this many times my Rheumatoid factor has been normal. CRP and ESR come back normal range off and on too. Just be aware that clinical evidence can be more diagnostic at times than any lab tests. They support each other. Good luck

August 5, 2018
A myRAteam Member

@A myRAteam Member. It seems you're going through a lot for the Osteo and I don't blame you for questioning the RA. I still have times of where I don't believe it even though I've had it for 8 years or more. I seem to be okay and then boom something happens and I know I have it. It's those ra flares that trigger me. These medicines are hard and I don't blame you for not wanting to take them but I think your doctors want to ward off any RA damage before it starts. Maybe the test you took was called a HLA B27. The test itself doesn't say you have RA it just says you have the gene that could cause ra or other similar conditions. I tested positive for it and I have a strong family history of rheumatoid especially in the females or like conditions including polymyalgia rheumatica, ra and reiter's syndrome in my brother. Trust your judgment on this but also listen to your doctors. Many people have OA and RA including myself and not everybody has the same level of RA. OA and RA will affect different joints just look at some of the pictures comparing the two. RA could be mild to severe and only affect part of the body. Right now my hands arent swollen but my ankles were very swollen before we kicked it down with @ prednisone. I follow anti-inflammatory diet and take tumeric so that might be the reason for my hands looking better than my feet but I hurt all over. I also have fibromyalgia and when I have a problem it's usually a combination of the RA and fibromyalgia acting up. Take care and I hope you get the answers you seek.

May 4, 2018 (edited)
A myRAteam Member

I have felt the same as you. I had a GP a few years back (reckoned I had polymyalgia) and he put me on prednisone and wouldn't send me to the rheumatologist. He told me they would just give me more toxic medications and that my blood wasn't saying I had anything wrong. Last year I took myself to a rheumatologist, he squeezed my fingers and said they were swollen (I didn't think they were) I had never had problems with my hands. He told me I had rheumatoid arthritis and fibromyalgia, that the fibromyalgia was a result of having untreated arthritis for so long. Then, he tried me on a few meds (sulfasalazine, nortriptyline, lyrica and methotrexate) non of which resulted in good outcomes. Now I am back to prednisone alone and I have got different pain, fingers seem slightly swollen at times and a little achy. I certainly feel confused, have no faith in doctors and have no useful answers.

May 1, 2018

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