Early RA. What to expect.
I’m new here and hoping for some advice.
About 6 years ago I had a skin-related autoimmune issue. During testing, my RA factor came back very high (145). They advised me to see a rheumatologist, but since I didn’t have joint symptoms at the time (aside from long-standing knee arthritis), I didn’t follow up.
Fast forward to now—I've had pain in both thumbs for over 6 months. Over the past month it has worsened, and now my index fingers and both wrists hurt as well. An orthopedic doctor said its arthritis and suggested I see a rheumatologist. My hand X-rays were clear. I repeated my blood work and my RA factor is now 177, but Anti-CCP is negative.
I have an appointment with a rheumatologist on Tuesday to start looking into this. Does this pattern sound like rheumatoid arthritis? What should I expect from here? I’m surprised at how quickly symptoms have progressed in just 6 months, and honestly I’m feeling defeated. I’ve always been very active, and with two of my kids still being babies I’m worried about what the future might look like.
Any advice or tips would be appreciated.
Hello and welcome,
!
I am going to try not to overwhelm you with too much information, but my heart always goes out to our newly diagnosed members. Almost every member of this community remembers those days of being new to RA. It can be overwhelming and scary and hard to wrap your head around. And I want to say that however you are feeling, that's okay. If you are angry or numb or confused or anything in between; that's okay. Your feelings are your feelings and letting them come and processing them is a healthy way to weather this challenging time.
Ok. On to the next part. I can't tell you how your physical symptoms will progress and, frankly, nobody can. But, I can say that finding the right treatment may help your symptoms become much more manageable. And, many of the medications used to treat RA are really working at treating the inflammation and the overactivated immune response, so, even if the meds don't seem too helpful at first, they could very well be slowing joint damage you can't see or feel yet. I wanted to share one of many articles by out health leaders with tips for the newly diagnosed -- https://rheumatoidarthritis.net/living/support-new-diagnosis. There are many more than this and this one I shared is part one of a series of articles for the newly diagnosed.
And, also, we have a few moms among our health leaders and they write about being a parent with RA from time to time. I am going to link to their profiles so you can find their articles as you have the time. Janeil Whitworth -- https://rheumatoidarthritis.net/author/janeil-whitworth and Mariah Leach -- https://rheumatoidarthritis.net/author/mariah write about marriage and mothering with a chronic condition quite a bit.
Again, I don't want to inundate you with information and I bet you will get some great feedback from other community members. But, I will say this. You can do this. You take the time to breathe a little and maybe do a little research (though, tread lightly with Dr. Google 😉 ) and take the tips you might get from others with RA and use the ones that resonate with you.
And don't hesitate to reach out if you have more questions or just need some support. We're happy to help in any way we can and you don't have to walk this road alone.
Best, Erin, Team Member.Hi
. First I want to note that those with a positive anti-CCP are extremely likely to have RA, it is possible to have RA when it is negative. Multiple things can lead to elevated rheumatoid factor, but a level as high as you noted is indicative of something happening. All of that is a long-winded way of saying that it is good that you are finally seeing a rheumatologist.
On top of the excellent information from Erin, I want to note that, if you are diagnosed, early and aggressive treatment has been found to be best at avoiding long-term damage (see here for example: https://academic.oup.com/rheumatology/article/64/3/1052/7638805). The good news is there are now plenty of treatments available and it is definitely possible to achieve control. Please feel free to keep us posted on how you are doing and to ask questions. This community is here for you. Best, Richard (Team Member)
