Just would have appreciated my Rheumy talking to me about it if he considered thats where Im at. I never thought to mention it as I am not symptomless! I just about hit the floor when I read in his letter that " she is in excellent remission".
I do not have swelling or morning stiffness but often very achey wrists, fingers and shoulders, bad knees. And Im very grateful thats all I have.
Someone above asked whether I am sero neg or pos....I dont know and when I asked him about it a few months ago he said it was not important. He also does not test RA factor after an initial test for a Dx. So the only reason I have bloodwork done is to monitor liver/kidneys because of meds. Never had an MRI and only initial wrist and knee xrays.
I have learnt something today and thanks all for your input.
Yaaaahhhh, I am in remission!!!!
Well i am glad to here you are feeling better. Hope it last.Thanks for explaining. I like it when someone can come in and explain things especially is easy to understand.
Here's to all of us having remission for the New Year!! :)
Lyn -
I'm not in remission because my labs (stupid RF) is still over 300. The rest is normal again. However I have no pain of any kind, no flares, no 'lurkers', no 'nigglers', no nothing. Last year at Christmas my hips kind of caught (no pain, just a catch KWIM?) in the cold weather occasionally but this year, with a 60 degree drop in temperature from LA to MI (Chicken Lev didn't meet me at the airport) even that little didn't happen. I have stiffness in the AM when I wake up that lasts under a minute. So, by most criteria, I'm doing damn good. As far as pre-RA - I more than feel that way. In many ways I'm doing better - with longer endurance - than before I got hit with this garbage. Now, if I can just get the rest of my pre-RA weight off, I'd be darn close to perfect (health-wise).
Never give up, ever!
Pip
good for you Pip! do you take naproxen anymore?
My idea is to be able to function normally without discomfort or minimal discomfort.
I am in that state and recently tried to return to work.
After the muscle pain died down there was the good old RA starting up again.
It is never far away.
To much physical work or stress and I feel things starting up....
After three days of work I swear I could have fallen asleep while standing if I just closed my eyes.
Having said all that, I regard myself as in remission if I look after myself.
Bodak2008-12-21 18:28:24Yes, because my AP doc is making me. He says I can't stop until I get that RF down. Apparently there's such a thing as subclinical inflammation - ie the stuff that gives you heart disease etc. So, while I'm not feeling swollen apparently I must be because my RF won't come down. (It may have but I haven't seen my blood test results for the last 3 months). So don't tell my doc I've been skipping it because I'm so busy I keep forgetting to take my tram, supps and naproxen.
Frankly, skipping the supps is the bigger problem. I get my RLS back when I skip the magnesium and potassium. And I get killer PMS if I skip the Black Cohosh. Hubby asks if I skip the 'Kobayashi Maru". LOL And God Forbid if I skip the Melatonin - I don't sleep without that. So...not 'cured' yet.
What's Daypro? Is that your anti-inflamm?
Pip
Pip, years ago when this crap started I stopped hurting, felt great after the initial severe onset. Took awhile to get to that point and I stopped MXT and quit going to the doctor.
I still had inflammation and active disease even though I didn't have pain, stiffness or swelling. This is the silent part of the disease when great damage is done and complications start setting in.
I'm a perfect example of what not to do. What did the doctor know? I felt great. Denial is so evil. It leads us into a shortened lifespan due to complications, damage later on in life, and an even longer journey seeking the right combination of drugs.
Even though I'm in clinical remission and doing well at the present, I continue to post because I want the newbies to understand about denial and how it will alter your life in the later years and the RA complications that take place due to denial. I may have been prone to complications due to my age. Maybe the older you are when the disease strikes the harder the disease is on your other organs. I had symptoms from about age 35 but had a sudden onset of severe RA at age 50.
If your RF is high, subclinical inflammation is present and causing damage, if not to bone/joint then to other organs. At least that's how I understand the process. Hopefully, due to AP it has slowed the disease process. I hope your numbers continue to fall and aren't flat lined. Lindy.
Lin -
I'm not worried about my joints right now because I reversed enough to get back to PRA and you can't miss a PRA attack starting. Kind of like a red-hot-icy-frozen-stalagtite running up into the joint, slowly, until the pain and pressure makes you want to die. But you hit the nail on the head - I'm worried about the organs. That subclinical inflammation has been linked over and over to heart disease - which is tops on the death hit parade in my family. Part of me is worried that my lack of endurance is linked to the heart instead of being overweight and a sloth for years prior to onset.
I've met other APer's who'd had stubborn RF numbers and they all got theirs to drop with flagyl - which if I remember correctly is a anti-protozoan? Who knows any more? I do know that most modern AP docs use flagyl routinely and I've been to doctor chats where they all say 'add flagyl' when the APer says 'numbers stuck'. My AP doc, however, is 'old school'. I think he may have studied with Dr. Brown (or thats just rumor - I should ask). I'm going to bring it up with him when I see him next time because I don't have my most recent labs because I was a 'bad patient' and almost an hour late at the last appointment and I kind of got spanked for being so late. Have you ever mis-guessed LA traffic? One accident or problem on the freeway and you can be hours late.
Anyway, I certainly hope you always post on AI - you are one of the nicest people around and don't care how somebody gets to remission, just as long as they do. :-)
Hugs,
Pip
PS - as a point, I'm not in denial and am still taking my real meds (Mino and Zith and probiotics) and won't even think of trying to go med free until I'm in 'real' remission as opposed to 'wishful thinking'. It's just that with my schedule, it's darn hard to get to the other stuff sometimes. And if I do need a anti-inflamm, I won't know about it until 4 - 6 PM.
Pip, Flagyl - bleeh! I don't blame you for listening to your old school doc but if the numbers are stuck and there's a good, strong line of reasoning behind adding it, I might be tempted to try and get the numbers down. Some short term problems with Flagy may be easier to take than the longterm complications of heart disease.
I'm fighting it all the way and so far the bundle branch block is asymptomatic except for the blips on the EKGs. My heart appears normal on the heart cath and all of the other testing. One just never knows.
I know you're not in denial but if you have subclinical inflammation then an anti-inflamm daily dose sounds reasonable. Busy or not TAKE YOUR MEDS. I wish I had had someone scream at me....I might have listened and avoided some of this. I still take anti-inflamm. because of the PsA - it's so persistent. Thanks for the compliment.
Used to travel between S.F. and L.A. on business and I can't begin to tell you how many times I missed my flights due to traffic and/or how many excessive hours I spent in the airport prior to catching my flight!! Lindy
I don't know the reason behind adding in the flagyl. There's not a lot of studies on what we do so many docs are flying blind. One of the docs that espouses it is from Vandy and they're getting a lot of press so I'm hoping for time to do some of the research to see why they're doing it. In my copious spare time.
And, yeah, you're right. Since before Halloween I've been so slammed I can't see straight. There are at least 2 times a week that I am gone when I take the baby to school and then don't get home again until 6-ish. Those tend to be the days I'm so busy I forget to take the meds (and there's the having to stop what you're doing to get the child ready for school; she's 7, listening the first time isn't in her vocabulary yet). So, we race out the door, meds forgotten on the counter until later - usually around 5-ish when I start to feel sluggish.
I think of this kind of like a see-saw. I'm obviously not better enough to have my body take over and do what it's supposed to because if I skip some of the supps I can feel it in a day or two. But I can physically move without stopping which was impossible 2 years ago. I just can't figure out where I'm sitting on that damn see-saw. No longer on the seat but not yet at the top, striding the bar!!!
Hugs,
Pip
PS - Adore you!
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