I have been mostly lurking lately but see several people talking about remission and asking if their expectations are too high. So, I thought I would start a thread on what remission is to you.
I have been given the ra dx but am seronegative. I am not 100% convinced this is what I have but we are going with it for lack of better dx at the moment.
My lab work shows no active disease. My CRP is .2 and my lab uses under .8 as normal. My rheumy says I am in remission.
However, my hands are still VERY visibly swollen as are my ankles and feet. I have a hard time typing and brushing my dogs hair and even holding a full glass of water. My knees and hips are sore. Not as sore as they were but enough that I walk a bit funny and have a hard time getting up. My ankles and hands just plain hurt the majority of the time. I am tired a lot although have been sleeping better. I go to bed about 9-10pm and get up at 7:45 am. I do manage to work full time although my job is not physically demanding. I am exhausted by the end of the week.
I find that I can go to the grocery store OR run a few errands but not both in the same day. If I spend an hour or two cleaning my house (at a very slow pace and with many rest breaks) I than need a couple of hour nap.
The rheumy says she doesn't believe my hands and feet hurt from the ra, she says neuropathy but the neurologist says not likely. I am getting an emg today just to make sure.
I am doing humira weekly and I am down to 5 mg of prednisone daily. I usually take 2 vicodin with lunch and two norco (basically extra strength vicodin) at dinner. I have decided to stop my mtx injections. It has only been a week since my last one and I have not noticed any difference one way or the other.
I do not know if something else is causing the pain and swelling in my hands and feet. I can't seem to get a real answer on the cause of this.
I guess if my hands and feet got a bit better, I could manage as I am. Would I like to feel better, absolutely. Is that ever going to happen, I do not know. I would like to feel well enough to start exercising a bit.
I have never had a positive lab result but do have swelling, redness and erosion and thinning in my joints. This is a fickle disease to say the least.
To me, remission means:
Pip
Remission is a word I seldom use. I think remission means to fully stop, and this has never happened to me. What I hope for is to slow the progression down as much as possible and to eleviate the pain and stiffness as much as possible so I can continue on with a somewhat normal life.
For me, this is the most difficult part of RA. Nearly all the meds take so long to work that it is difficult to tell whether they are are having any effect. Its not like having a strep throat and taking Amoxycillin and 24hrs later you feel better. DMARDs are much more subtle. I think a lot of others (who know much more than I) would say that even with the best meds, you can still have some flares that always make you cast a doubt. Best wishes.
I too think remission means no pain,flares or further damage happening. I also think slowing progression is as far as I am getting (and not even sure about that sometimes). I still have pain and swelling, I still have different, new pains cropping up every so often. It's definitely slower, but not stopped.I think Pip said it best. My bloodwork is good and I feel awful. And, I don't get the swelling that you do.
Maybe you should just get a second opinion. It wouldn't hurt. It's not wrong to ask. Your symptoms sound so familar. It's not like you're describing a totally different disease. Some docs are so stubborn. It has to fit withing these constraints or it's not RA. Obviously, RA varies by so many degrees.
So why are you stopping the MTX?
My rheumatologist told me we're not going to use the word "remission" but we're going to talk about getting the RA under control. I don't know if she meant just for me or if she doesn't use remission in conversations at all.
Mich~It certainly doesn't sound liek you are in remission to me; and if you were seronegative to begin with I'm not sure how your doctor is determining you are in remission. Sounds strange. ALso why are you stopping MTX? It's going to be several weeks before you miss it. It takes a while to get out of your system. I wouldn't advise stopping it; especially with all the trouble you are having.
Remission isn't a word my doctor ever uses. Not saying it isn't possible; but he just doesn't throw it around.
Years ago....maybe year three after my dx I stopped taking my meds because I was convinced i was in "Remission" my RD at the time begged me not to do it. She said "You'll be back here in three months in far worse shape and we'll have to start all over again" Well the only thing she was wrong about was I wasn't back in three months I was back in 6 because I was too embarrashed to admit I was wrong. I was in horrible shape by then but I learned a valuable lesson. I guess we all need to prove it to ourselves at one point or another.
Oh Lovie I did the same thing! I was back in 3 months begging for the MTX again and now have had to add Enbrel. I will NEVER do that again.When I was in remission, from about age 13 to about age 18ish - I had:
NO pain
NO swelling
NO Nothing.
I sometimes FORGOT that I had JRA. Dead serious.
But that's just me.
Sounds like your doc and your bloodwork say remission, but your body hasn't gotten the good news! Until, you can do those everyday things and function more normally, I sure wouldn't call it a remission. Maybe it just makes your rheumy feel better, but isn't getting YOU to feel better the whole point? All the best, PatBeing sero negative, remission means a normal CRP, so little pain and swelling, I don't think about RA. I had a 4 year spell like that in my late 30's.
It probably was not a clinical remission but I felt like god smiled at me, personally. 'Twas a heart breaker when it came back.
I started the mtx the last week in October. I have not noticed any improvement at all and at least half of my hair has fallen out despite being on 4 mg of folic acid daily. I already cut 14 inches off and what is left is oh so very thin! I wouldn't care if all my hair fell out if I felt good but I don't see a difference in how I feel one way or the other.There is the possibility of seeing an immunologist or an endrocrinologist (sp). When you had miscarriages, did they happen early on or later in your pregnancy? The reason I'm asking, and I know this is so painful for you, is whether you experienced any relief from your symptoms while you were pregnant.
Michele, honestly, I don't know what you should do. I just know you need help with this.
Maybe we could help her by doing some research on her symptoms.
Have they check out your kidneys? If it's not inflammation then it's seems it has to be some kind of fluid retention. RA and Lupus both can affect the kidneys. It is common with Lupus and rare with RA.
Michele: Have you had your CCP checked? This is often used to diagnose people who are Rh negative.
My rheumy says if I stay like I am for 6 months-- I will be in "remission."