Ok so here's my story. I started having pain in my knee in July of 2006. I didn't think much of it because I was a runner and ran at least 6 miles a day besides working out at the gym 2-3 hours a day. I was overdoing it on the exercise. I went to an orthopedic dr. He took x-rays and examined knee. He said my x-rays looked great and that my knee looked better than his (he is about 15 yrs younger than me.) He thought it was a running injury and told me to ice and sent me for PT. The swelling didn't go down...went back to family dr. He sent me to RD. The RD drained my knee and did a bunch of tests. The tests came back saying I had RA. I'm not sure which test determined that. I know it wasnt the RF factor because that was normal. She said it was a test very specific to RA and that it was high. Ok, so she prescribes 15 mg MXT once a week along with 200 mg of plaqenil 200mg twice a day. So it has been 1 and 1/2 years and nothing else has happened. The knee was fine once she drained it. Nothing has swelled or acted up since my diagnosis. Sometimes I feel kinda feverish...like inside my body...I don't have a fever or anything. Other than that I have been fine. I'm starting to question the RA diagnosis. I have no stiffness..no swelling..nothing. I get my blood tested once every two months..always comes back normal. I don't know if this is normal or not. Is this what you call remission? Am I maybe being misdiagnosed? Am I in the honeymoon period of this disease? Can someone please help me out with this? I've asked my RA about retesting me for RA but she says that it wouldnt matter because once you have RA you always have RA. I feel good though. I've never actually felt real bad. Even when my knee was swollen I still exercised two hours a day....
Is the beast just waiting in hiding? I'm so confused! Thanks for any insight you can give me.
Lori
Hi Lori.....this beast of a disease is so confusing and everyone is different so it's so hard to tell. What test is your dr talking about? Is it the sed rate? That measures the inflammation in you so maybe if it's down you are in remission. Some people have mild ra and it comes and goes and some people have it severe and it's been there for a while. You are not the only one confused. RA is confusing. Knock on wood and do what ever you do for good luck that it doesn't come back. I hope it doesn't!
take care
Lori -
Call the records department and ask for your records. They are yours. Get the doctor's notes too. You need to start keeping a journal.
On Plaq and MTX you should be getting blood tests and liver function tests and a baseline on your vision. I think vision is once a year; the others minimum every 3 months. If you've had those tests, get the records.
If you did not get those tests, run, don't walk to the rheumy and DEMAND them ASAP. This could be ugly (but probably isn't). If doc refuses, call patient relations and scream.
I'm betting the test was the CCP. There are others. Anyway, you might be able to ascertain if your disease is controled by the meds with those numbers.
If not...then you can try to wean and see what happens. Warning...if you are wrong...it's a lot harder to bring under control the second time. Be very armed with knowledge before trying to stop the meds. You could be very sorry you did.
Pip
Cindee- thanks for your reply. You are right it is so confusing. Everyone is so different. My RD told me that whatever test she did..I can't remember the name...anyway the number was like 150? and she said that meant it was severe RA. I guess that is why I'm confused.
Pip- Yes I do have blood tests and liver function tests done. At first it was once a month, and now it is once every two months. They always come back normal...whatever that means. You are right, I need to request my records. Is it normal to go into remission that fast when the dr. says you have severe RA? Gggrr I am so confused by this disease. It has consumed my life for 1 and 1/2 years and I am sick of living in fear every damn day!
Lori
I'd bet the farm it's the CCP. They say that one is something like 98% accurate.
No, but if you're this well controlled on the 'first line' drugs - maybe you're not really severe. From your first post...that doesn't sound like severe to me. Not trying to diss your pain, but I was on a walker in 4 months...so...see where I'm coming from. But my CCP was 0. Go figure. I don't think they know exactly what to expect...just most people with a high CCP are supposedly severe. We see here every day that they don't have a lot of hard and fast rules with these diseases. :-(
It's just you'd better be really, really, really sure you don't have RA before you stop meds that are working. There's somebody here...hope they see this...that thought they were maybe not RA...stopped the meds....and it was bad.
Not trying to scare you....just get the papers and do your own research. I'm big into wishful thinking, I do a lot of it myself :-), but I try to avoid ...um....silly?
Pip
Yes Pip I totally understand where you're coming from. I don't plan on stopping the drugs. I'm too "afraid" to stop the drugs. I can honestly say that I have never been in pain... just had the swollen knee...no aches or pains associated with it. This disease sucks...I'm afraid every day wondering if this is gonna be the day when it "really" hits. There is something going on. I can "feel" it inside my body..running through my blood... I guess waiting to HIT me with the big one. I do believe in miracles though and I pray every night.
Lori
Hi Lori
I have a sister-in-law and a cousin who have severe RA damage in their hands & feet, and both have said that they've never had any joint pain. I'm the opposite... my hands and feet look good, except for puffiness around the joints, but I've never been pain free.
It's wonderful to hear you're doing well on the mtx and plaquenil... and having no pain is fantastic! Stay with whatever's working for you!
Wonder if your doctor is the same as mine, LOL. Slightly different situation: My doctor keeps telling me that I have "severe, erosive" RA simply because blood tests show RF (only 18) and anti-CCP (only 10)! And although I have very few symptoms at this opoint and feel fine, and am not yet on medication, last Tuesday she told me that I will someday develop full=blown RA. So why, I wonder, am I still not on RA meds?
Thats why I wonder.... How can they know that "someday" we will have full blown RA when everyone is so different? I hope we can prove them wrong!
Lori
If you can feel it - then you have it. I know exactly what you're talking about. Hell, I look for it to see where I am in my healing.
APer's are big into wishful thinking. I feel great - let's stop the meds! But it comes back, harder to beat down, usually about 2 years after stopping treatment. By then the critters morphed.
From posts here, when people on the regular meds stop them, the symptoms usually return within about 2 weeks, if what I get from the posts is accurate.
Which confirms in my opinion, the different nature of the treatment options.
<wry smile>
Pip