Newly diagnosed --anyone know their ccp antibody number?
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mommyfor2 posted:
So I was officially diagnosed with rheumatoid arthritis last week. I think doctors need sensitivety training. My doctor mentioned it at the end the of the appointment as a"oh and by the way you also have rheumatoid arthritis ". She couldn't understand why I was crying or why I wouldn't want more children.

My RF is only 21 and my current ESR is only 4 so if that what was used to diagnose me I'd think I had a mild case and aggressive treatment wasn't that necessary.. However, I paid for a special new test called the CCP antibody test which is highly actuate and I'm told also predicts the severity of the disease.

For ccp 20 is positive, 60 is highly positive and my number is 250. I'm told I have an extremely aggressive form of rheumatoid arthritis . I'm terrified. I caught it early, I feel pretty good now (feet and knees ache at the end of the day and my hands don't hurt but their tender I guess I'd say...could totally be paranoia) but I'm so worried that because my CCP is so high I have no hope. I just need to prepare myself. I hate the unknown.

Can anyone tell me their number and how they are doing? Also, if you don't know I'd suggest finding out since my RF and antibody are completely different. It might change the way you treat it.
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An_246765 responded:
Hi Mommyfor2,

I'm sorry to hear about your diagnosis. Like you I have a very high anti-CCP, mine came back >250 with a RF of 74. My ESR was only 11 which is considered normal. I have a very mild case of RA right now and I went into remission fairly quickly (6months after diagnosis) and I'm only on Plaquenil. What my doctor told me was that it use to be believed that the anti-CCP correlated with the severity of disease but they're finding now that it doesn't correlate as much as they use to think it did. It's true that in general patients with positive RF and anti-CCP are at a higher risk for more aggressive disease than patients without these antibodies but I don't think it's a death sentence. I would think you probably still need treatment for the RA, since you are having symptoms, but maybe just not with the most aggressive drugs like the biologics? I don't know, you'd have to ask you doctor what they recommend.

I hope you find a doctor with a better beside manner! You need someone whose on your side through this. I'm glad you're doing well at the moment. Don't let the numbers get you down, they aren't the end all be all!
 
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mommyfor2 replied to An_246765's response:
Thank you SOOO much for your response

How long have you had the disease?

My ESR was 24 at the highest but now it's 4. I feel ok but I'm paranoid and I have horrible anxiety. My most obvious symptom right now is that my feet and knees have a dull ache at the end of the day. Sometimes I have a hard time standing while making dinner (I refuse pain meds at this point because I want them to work when I need them).

I have panic attacks during the day and nightmares at night (mostly about things happening to my children). I hope over time I'm able to cope better. I'm the type of person who likes to plan but it's difficult when you don't know if you are going to wake up in pain or not or if in a few years you will be disabled or not.

I'm trying to get referred to another doctor. It will probably be a long wait.
 
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An_246765 replied to mommyfor2's response:
I've had RA for right at 2 years now (diagnosed March 2011). You're not alone in your fears. I really struggled with that, especially the first 6 months. Here are a few things I've learned:

1. You have just as much of a chance to be hit by a bus tomorrow as the next person, lol. Meaning, nobody knows what tomorrow holds. I get really scared when I think about what life is going to look like in 10 years so I focus on what I can do today. That was a really big deal when I first got diagnosed. I actually wrote down all of the positive things I could think of that day so I could see the things I could still do and then tried to focus on those. As time went on and my RA got better and better controlled I was able to do more.

2. Take the pain meds if you need them. If you wait until the pain is unbearable chances are they pain meds won't work well and that just creates even more of a problem. I know what you mean about not wanting to take them now but I think pain free days really help with the anxiety as well. I have some days where my pain isn't all that bad but I'm on my feet all day at work and if my knees are a little sore I really notice it and I can't stop thinking about it and then I get anxious and overwhelmed. When I take the Aleve most if not all of my pain goes away and I can forget that I was having pain and my anxiety goes away.

You will be able to cope better as time goes on. It's very overwhelming at first but things get better! Try to remember that a lot of what you read on the internet may have been sensationalized or is the stand out case that didn't have a good outcome. Most people do very well these days. There are lots of options out there. I hope you're able to find a doctor that works better for you! Take things one day and one step at a time and you'll do well!
 
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princessd replied to An_246765's response:
That was an awesome response. Having just been diagnosed a week ago, I feel I have been getting worse in just one week. My grandmother had RA and all I can remember is that she was bedridden and in severe pain. But now there are some meds to help whereas 25 years ago there was nothing. Still trying to get over the anxiety and awaiting my first visit to my Rheumotologist. Afraid to take meds due to side effects.
 
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princessd replied to princessd's response:
I forgot to ask both An_246765s and Mommyfor2 if either one of you were on any certain meds when you went into remission and when your count went down from a 24 to a 4?
 
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mommyfor2 replied to princessd's response:
No I haven't taken any medicines yet. I have achy joints but not the sharp over wheel ing pain I had in the beginning. I guess I have the type that comes in waves.

I think I'm going to take the meds but I'm going to do my ccp test again now that I stopped breastfeeding to see if it changes the number at all. It's a new test ski don't know if they know yet.

I was getting progressively worse and worse for weeks then I stopped eating any refined sugar (I bread, pasta, yogurt...it's hidden everywhere) and I started to feel better thenextday. I'm not sure if I would have felt better regardless. I was sugar free for about a week now I eat sugar and I'm fine. Odd.
 
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mommyfor2 replied to princessd's response:
Oh and I read some strange roost online about how fish oil causes panini your hands so (burning) so I cut that out the same day I cut out sugar. Who know... rheumatoid arthritis makes us second guess everything
 
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mommyfor2 replied to mommyfor2's response:
So I started my meds last week and thank goodness I on hav any side effects so far. I take mtx and plaquinel (sp). I hope it stays that way. I wish I started the meds sooner honestly. I read so many scary stories online that I almost didn't take them at all. I think I might ask for a third DMARD at my next appointment because I want this disease attacked aggressively. Not sure if my two meds are strong enough for someone with a ccp of 250.
 
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lisac888 replied to mommyfor2's response:
Hi Mommyfor2,

I too was recently diagnosed with RA. My numbers were approximately the same as yours. I too am going thru the anxiety and panic attacks over this diagnosis. Would love to hear what meds u are taking and how you are feeling now. Thanks.
 
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mommyfor2 replied to lisac888's response:
Lisa I know exactly how you are feeling. I had panic attacks and nightmares for a while after I was diagnosed. It's been two years and I'm still on the same medication (mtx and plaquenil) and so far I haven't had any erosions . I was in remission for almost the two years and then I tried to reduce my meds to .6 mtx and I flared up a bit. I increased my mtx injections 1 1/2 months ago and I'm finally starting to feel a lot better.

Since my diagnosis I've had a full and happy life. Try to relax and take each day as it comes. Feel free to private message me. Big hugs.
 
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An_245367 replied to lisac888's response:
I too am still on the same meds, just the Plaquenil, even with my scary numbers, lol. I'm doing great. I've stayed in remission, coming up on 3 years next month! I have small flairs every few months but take Naproxen twice a day for a week or so to get through it and that's it.

I've traveled internationally several times and am actually headed from the US to Australia next week to swim in the Great Barrier Reef and then hop over to New Zealand for several days of cycling and cave climbing. Can't wait!

Hang in there Lisa, be patient and stay as positive as you can. I was home bound at my initial diagnosis that's how hard the RA hit initially. At 5'3 and 120 lbs, when I dropped to 107 almost overnight it was terrifying. I couldn't walk or use my hands, I couldn't work, I couldn't sleep because of the pain but I couldn't stay awake because of the fatigue, it was awful and more than a little panic inducing!

Since my RA has been under control I'm back 100% to the way life was before. I'm a little stiff in the mornings sometimes, I do have pain now and again but it's something I deal with when it comes up and other than that I plan and live my life as if I didn't have it. I hope you get some serious relief soon!