Anti CCP 58. No symptoms.
Hello. I'm 31 with 4 beautiful girls. I recently went through the flu over Xmas 2022 and since has been thrown off. My lit D is 45. Under 50 is deficiency. And my thyroid (hashimotos) was overmedicated.
A full blood test from my Dr. As I've been feeling fatigued. Dry mouth and dry eyes. But has good days... showed my CCP was positive at 58. Norm is up to 20 I believe. Strongly associated with R.A referral to a rheumatologist is needed. However... I have no symptoms of joint pain. Swelling. Or inflamation. I can get up straight away and care for my kids. My doctor looked me in the eyes and said. "You have R.A" but going through all the early symptoms of it starting in the fingers and toes I don't have that. I'm finding myself riddled with anxiety. Only thing I have is left elbow is abit painful because acouple weeks ago my car sliding door was jammed and I tugged it to close it. So I thought.... Two and two together. I can completely wiggle my fingers and toes and hop skip and jump. I've been off my appetite since xmas and lost 3 stone. But doctor said it's anxiety. And being overmedicated on thyroxine. And some aches and pains I did feel in lower back was low vit D symptom. I don't no if I'm in denial or if I'm in very early stages. But I have no idea what is going on. I had a letter through saying in 6 weeks time outpatient appointment with rheumatologist will contact to make appointment. But now I'm scared to wake up checking if I have stiffness. Swollen joints and pain anywhere. I don't no what to except. I just feel thrown off my feet. I think your all amazing and if I am to join your community then I came to terms but I'm just wondering why I don't have symptoms will they come eventually? She'll I start preparing for life ahead?
Hi
. Your concerns and confusion are certainly understandable. I don't know how well your doctor explained the test, but there is a reason they were so definitive. While there it is fairly common for someone with a normal anti-CCP to still potentially have RA, the antibodies "are almost never found in people who don't have the disease:" https://medlineplus.gov/lab-tests/ccp-antibody-test/. Another article notes that "This test is 97% specific for RA if it is present:" https://www.hss.edu/conditions_understanding-rheumatoid-arthritis-lab-tests-results.asp.
That said, it is great that you are asymptomatic (note: you will also see in those articles that anti-CCP is not a measure of disease activity or severity). Early treatment of RA can make a big difference in avoiding progression, damage, and also increase likelihood of remission (see: https://www.everydayhealth.com/rheumatoid-arthritis/treatment/why-early-treatment-for-rheumatoid-arthritis-is-so-important/ and https://www.mayoclinic.org/diseases-conditions/rheumatoid-arthritis/diagnosis-treatment/drc-20353653).
It is great that you are making plans to see a rheumatologist and I thought you might be interested in this article from our contributor Tamara on what to expect from the first appointment: https://rheumatoidarthritis.net/living/what-to-expect-at-your-first-rheumatologist-appointment. In addition, I want to share this article on questions for the doctor: https://rheumatoidarthritis.net/living/questions-for-the-doctor. In particular, I want to call specific attention to the goals for treatment. As a new patient, with no symptoms you have a great opportunity to aim high for controlling your RA. I would tell anyone that a full and happy life is possible (my wife, Kelly Mack, is a contributor here and was diagnosed at age two, over 40 years ago and has a great career, loves to travel ...), but it is even more true in your case. Treatments have come a long way and hope is real. Wishing you the best and please feel free to keep us posted on how things are going and to ask additional questions. Richard (RheumatoidArthritis.net Team)Thank you for your reply. I have read carefully through it a few times and the articles linked.
I will prepare for my rheumatology appointment and keep you updated. Maybe a few weeks before the phone call for the appointment. I hope to remain symptom free I can only hope. It's all just overwhelming as you see horrific stories about R.A knocking one on their feet with attacking the heart. That's my biggest worry. The heart and lungs.
Not just a connective tissue /joints but Internal organs.
My children are my life ams at 11,10,4 and 18 months my anxiety has risen.
Hope to speak to you in a few weeks with an update. Kind regards
Freda
Hello Freda,
I just wanted to chime in as we do share quite a few similarities. I was also dx'd with Hashi's first, then I was diagnosed shortly after my youngest of 3 was born. Mine are now 12,11, and 9 so I can really relate to where you find yourself- the anxiety, questioning, and worry for the future, all of it. While there are good days and bad you have so much already going in your favor. As was already mentioned, early diagnosis and treatment make ALL the difference for sure. But while you wait for your appointment, there are still simple things you can do.
Take a look at your diet. There are many (admittedly delicious) foods that cause inflammation in our bodies such as sugar, gluten, dairy, and processed foods. While some people report no changes after changing their diet, many people (like myself) see great benefit from it. Start slow and give it time so you don't become overwhelmed.
But like so many things in life, it is all about balance. It is hard when you are a mom to make your own health a priority but in the long run, it is worth it. Don't worry, you've got this. Feel free to reach out anytime! -Leanne (Team Member)hello thank you for your comment. My anxiety is bad :'( just feel so emotional and teary all the time.
How do you manage as a mum?
Can you still do all the things you did pre symptoms? Go for walks with them? Watch them on sports day? Go on holidays with them? Swimming?
I've already gone Keto. I'd do what ever I can
I had images of turning into the best granny one day to my kids. And I'm barely turning into a mum now. Does your kids understand your condition? Do you drove them places still? I just don't want to be bed ridden and them see me on pain. All I see on Facebook amd Internet is pain amd swelling and deformity. Bad side effects on drugs. Heart disease and lung disease. I actually made myself sick with worry the other day xx
Just an update. It's morning of Sunday 5th March. UK time.
Last night my index finger on my right hand was swollen. The other side wasn't. I couldn't bend my finger through the night. Was up with anxiety . This morning. I can bend it better then I did. Igs just abit stiff. Continuing to do exercises to loose it. I thought R.A radiated both sides? Was was red in places. But my hand had red patches on it but just my finger swollen. I think it's definitely happening. My first mini flare. Now to wait till it takes my body and mindset :'(
Hi
. Stress can make symptoms of autoimmune disease worse, so it's possible that the stress and anxiety you are feeling about RA are trigging a flare. It is really important to change that body chemistry, especially while you are unmedicated and waiting for your first appointment. Have you ever tried meditation? Meditation won't change your circumstances, but it can reduce your body's physical reaction to stress and make you feel better overall. Here is a link to a video about guided meditation: https://rheumatoidarthritis.net/video/guided-meditation. As a mom of four kids, I know how hard it can be to find any time for yourself. So you might want to try a meditation app for your phone as well, though you might have to sneak off into the bathroom to get a moments privacy to use it. 😀 RA often radiates on both sides, but not always. If you are concerned about the swelling it your hands worsening overnight again, you might want to try wearing arthritis gloves to bed or any gloves, really. Even without compression, gloves can keep your hands a bit warmer and keep the circulation going. That can reduce swelling. You can also try taking an anti-inflammatory before bed. Keep in mind that most people don't look for support when they are happy and feeling well, so the posts you see here are not always reflective of the RA community as a whole. Lots of people are living in remission or with only mild symptoms of RA. My mother was diagnosed with RA in her 50s or 60s and never needed any medication. It just never progressed much. She lived to age 86 and found daily stretching kept any stiffness at bay. That might be you. Sending the best of all wishes and lots of healthy vibes your way. - Lori (Team Member) Hi
. Just to follow up on what was saying about symmetric symptoms not always being the case, this article notes that individuals may not have symptoms on both sides at the beginning of the disease: https://www.medicalnewstoday.com/articles/326840#types. I also want to note that RA is a systemic disease and can impact any joint and other bodily systems. So, RA can impact both sides of the body, hence the symmetric designation, but that does not mean respective joints on each side will be impacted equally. For example, my wife, Kelly, has always had more issues with her left knee and shoulder than the right side.
Concerning your finger, completely get that this would be troubling, but, as Lori said, there vicious cycle of symptoms, stress, and then more symptoms. Just want to say that the finger issue could have a number of causes, but if it is RA this is still much less than most people experience prior to diagnosis and you absolutely are a great candidate for the benefits of early treatment. Best, Richard (RheumatoidArthritis.net Team)
Was her CCP factors possitive? I heard seropossitive is more aggressive then seronegative and my ANTICCP is 58. Normal in UK is 0-20
I've read nowhere that CCP POSITIVE and someone doesn't have R.A it's likey it is or I'm in early sages or it will progress soon. Its just my children. I want to parent and drive and go to sports day. Clean the house. Not let them see me have bad side effects to medication. Ive already gone keto. No carbs or sugar and drinking water and green tea. Not sure if it will help but I'm trying everything xHi
. It was believed to be the case that seropositive RA was more aggressive, but more recent research has called this into question. This article from the Arthritis Foundation notes that "In the debate about whether seropositive or seronegative patients have more severe disease, study results are mixed. A Dutch study found that people with seronegative disease had significantly more inflammation and disease activity than those with seropositive RA. And an international group of researchers reported a rare but particularly severe and destructive subtype of seronegative disease. Another study, however, reported similar disease activity and progression in both types of RA after two years:" https://www.arthritis.org/diseases/more-about/what-type-of-ra-do-you-have#:~:text=In%20the%20debate%20about%20whether,than%20those%20with%20seropositive%20RA.
I can also tell you that besides my wife, Kelly, I know several other juvenile RA cases and they are all seronegative (seronegative RA is more prominent in juvenile cases) and have quite severe cases. My experience has been that people can be either seronegative or positive and have a severe or mild case. Early treatment to get control of the disease and limit damage before it happens is still the best course I have seen. Best, Richard (RheumatoidArthritis.net Team)
