I had uveitis the summer of 2004 and awful pain in various joints the summer 2006. Pain would last 1 to 2 days and just disappear. Pain affected both hands, right foot, left knee and both wrists but not at the same time...moved around. RF at that time was 158, no CCP was drawn & no treatment. Recently I was waking up with a little swelling and my feet would hurt for about 10 minutes until i walked around a little. That is not so bad now, but sometimes I have puffed up veins in my hands and my rings are tight. Sometimes I get little jolts of pain in my hands, but they don't last but a few seconds. My RF is currently 69 and CCP > 100. Don't really know what to make of that and the Rheumatologist says it is very strange to have such high labs and very minimal symptoms. Started me on Plaquenil, but after 5 weeks I get a rash on my forearms and lower legs and scalp when I run. I run half marathons so an itchy rash is tough. Some say it is cholinergic urticaria. Happens when I get in a hot car too. He stopped the Plauenil, but after 5 months, I still get the rash. I am a very healthy & active 42 year old female with great labs otherwise. What would you do??? I'm scared I will wake up one day with debilitating RA if left untreated. Should I just wait and see or insist on some kind of treatment to prevent a flare-up. Also, is there anyone out there that has had high labs with minimal symptoms? Thanx, TLC
Q: High RF and CCP labs with no symptoms.........treat or wait and see
It is very common for RA to sort of play hide and seek in the beginning, but perhaps not for as many years as you've been experiencing this. It does sound strange and unfortunately, none of the people who answer questions in this area are doctors, so I'm not sure we're going to be able to be of much use to you. However, given your concern, have you considered getting a second (or third) opinion? Doctors are human, too and sometimes, getting a fresh pair of eyes on a complex issue may help.
I understand your fear and that's why I recommended getting a second opinion. However, I also want to let you know that although it is possible that you may encounter a massive flare of RA (if you indeed have RA) at some point in the future, you have a rheumatologist - whether you stay with the present one or switch to another one - and should that flare happen, you can make an emergency call and get treatment right away. The kind of damage to joints that significantly affect your mobility takes time. If you're in a massive flare, it takes last time than if you have a medium-level activity of RA grumbling at you for say six months, but still. Which means that even if you do wake up one day in a massive flare, it is unlikely that you won't be able to get it suppressed fairly quickly - the biologic drugs like Enbrel and Humira take effect within a month or two and you would be unlikely to have significant damage in that time. Your rheumatologist sounds like a sensible person following that first part and the Hippocratic Oath: "first do no harm". If you can run marathons, the potentially bad effects of medication probably do outweigh whatever benefit you might get given that you have pretty much no symptoms.
Living with that "what if it happens tomorrow" feeling over your head can be terrifying, so make sure you talk to your rheumatologist(s) about your fears so they can hopefully give you some facts and advice that can help you get back out there and focus on your life instead of on the what-if. For your second opinion, you may want to try finding someone who is associated with a teaching hospital, as they sometimes have extra resources for more unusual cases.
Good luck. Let me know how it goes?
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Thank you Lene!! A fresh pair of eyes sounds like a very good idea. Went to my Rheumatologist today. Asked if he had other patients with similar situations and he indicated he did. He believes the risks of Methotrexate outweigh the benefits and I may never experience joint pain. All other labs, including ESR and C-Reactive Protein, are very good. I ran the Marine marathon last weekend. Running is my hobby....sometimes I consider it my therapy. I can't imagine not being able to run with my friends and especially, my family. I feel very lucky and my heart goes out to everyone whom experience so much pain in their lives. Thanks again. I will see about a second opinion just for peace of mind.