Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
I've been wanting to ask this for a while now on this forum. For those of you who have been through a long term remission or are within remission presently, what does this mean to you? How do you feel as compared to when you PRIOR to even having RA & after you were first dx'd?
I'm just trying to gauge myself & my supposed "remission" compared to others to see if I'm way off or if this is "as good as it gets"? I've been off meds since 12/2015, my Rheumy states he feels from all indicators, physical examination, x-rays & my stiffness, pain & inflammation levels, I am within a remission. The dx came after being on the lowest methotrexate dosage for over a year (2.5mg) & not exhibiting much physical issues. Although I trust my Rheumy I'm seriously thinking about getting a 2nd opinion just to be completely sure & ease my own mind.
Well, it's been almost a year since being off & I am experiencing slighthly more pain than back in 12/2015. It comes & goes but pain level is rarely above a 2 out of 10, stiffness maybe a 1 or 2 for no more than a minute & no swelling or inflammation. Let's just put it this way, by the time I'm out of the shower getting ready for work, I'm good to go.
However lately & I'm not sure if it's due to overexhertion at the gym but I'm feeling a little more tenderness around the clavicle, right wrist & ankles.
I don't know. I guess I'm a little too "literal" of a person but in my mind "REMISSION" means complete absense of all ailments. Basically you're back to where you were before even knowing what RA is/was? Pre RA!? NO???
What do you all think?
1. Drug-controlled remission [where you are still taking DMARDS or other meds to control pain and inflammation] and where there are no symptoms/evidence of the disease [other than old radiological evidence].
2. [Standard] remission, where you are completely off all drugs and where there are no symptoms/evidence of the disease [other than old radiological evidence] after several months without the drugs.
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I just edited slightly so that it was clear that old evidence on x-rays does not go away.....because the damage is irreversible.
I guess that's where the confusion comes in because from what I read many doctors consider you in remission when you exhibit a a lessor of certain symptoms. So lets say you could have pain but if there's no swelling, inflammation, no damage from x-ray results & the pain level is minimal & you can go about your day normally without any meds or with minimal OTC meds then you're considered in remission.
See, isn't that confusing??
[Theoretically] there is no pain if there's no inflammation.
Remission: Disappearance of the signs and symptoms of cancer or other disease. A remission can be temporary or permanent.
But then....
https://www.cancer.gov/publications/dictionaries/cancer-terms?cdrid=45867
remission listen (reh-MIH-shun)
A decrease in or disappearance of signs and symptoms of cancer. In partial remission, some, but not all, signs and symptoms of cancer have disappeared. In complete remission, all signs and symptoms of cancer have disappeared, although cancer still may be in the body.
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So who knows?????
It's frustrating! I wouldn't say my day is "consumed" by it but much of my day is about taking stock of how I feel, how I look, what my hands look like. As if it changes from day to day? LOL!
Part of me is grateful I'm not on any meds but another part of me is worried, "What if my Rheumy misdiagnosed the severity & the damage is anyway right NOW".
LOL! That's hilariou I WAAAS using his voice while reading! LOL!
Anyway, I check back to DS because it's just a ritual now. But I haven't taken any DMARDS since 12/2015. I take an Aleve maybe once every other week but typically it's for my lower back where I have a slight buldgin disc. I'm not even on a visiting schedule to see my Rheumy any longer. He said, "Make an appointment when you feel it's necessary now".
So you see remission or have felt remission the way I "view" what the word really means. Basically you feel the way you do like years prior to even having the symptoms of RA!?
That's what I WANT but it seems like many Rheumatologists are sending their patients back home with a "You're good enough, you're not that bad so you're in remission" type dx?? I don't believe my doctor is that careless he's very well regarded & I do like him a lot but last time I saw him he kind of gave me the look like, "Why do you keep making appointments, you're doing fine"?? I guess I have to convey to him what I'm looking for in REMISSION & let him advise me what the real world result is or may be, even though after talking to many of you I pretty much know.
Yeah like you I'm not in much pain, I'd say scale of 1-10, 10 being worst I'm at very worst a 3. No swelling at all but I'm experiencing a little more stiffness in the morning like this morning my jaw felt a little like I chewed a pack of Bazooka Joe bubble gum a little too long! LOL!
this made my day. ditto.
if I am NOT aware of what my restricted limitations are doing to my present reality and having to make accommodations thereof....yeah that's it - I'm not scoffing meds and worrying about the pharmaceutical regimen AND my function is not impaired to where I am making trade off's otherwise known as bargaining with my recalcitrant body.
am I supposed to be thinking about the good ole days?
the truth is oceans I don't have my former function back after years of biologics. Oh wait a minute, I am not in a wheelchair. and I can now lift my pink 1 pound weights instead of the 50 pounds metal ones downstairs.
I don't think about remission cause it bums me out. I think about self sustaining with what I have left, of me :) (said with a smile, honest) - and I recognize I have a few positive break throughs mostly when I do not have infections (which for myself are frequent) and can stay on the crap. I have lulls. I don't have remissions. lulls are better than nothing, so I am grateful. we had a lot of folks on the old list that were debilitated at a higher degree than I am so I always see the silver lining, always.
depot
My new rheumatologist seemed to be happy my knees weren't swollen and hot. Even though a lot of other joints were bad, and continuing deformities in my hands. I let him know that was not good enough. Now I am on 2 DMARDs, a biologic, prednisone and of course, painkillers.
The painkillers are for all the new damage - which is still hurting. I am feeling a lot better, but some days still very stiff upon walking. I guess I just have to realize that this may be as good as "remission" gets. By the way as I continually say, the only remission I have ever had with RA is med induced.
I am very well controlled with my meds, but my Dr will still want to see me every 3 months. Although I went today & he said come back in 4. Labs were all good, not much swelling, & meds working well. I don't think I've gone longer than 6 months without seeing him.
I mirror what you think about RA at times. I too look at Cancer remission & when they say remission the cancer is essentially "gone". RA is in us IMO from birth. There are just factors that "turn the switch on", whether it be environmental, nutritional, even psychological events & "stressors" can flip the switch on a lot of diseases.
I was well under control while on MTX lowest dosage 2.5mg, no swelling, no inflammation, no redness & pain maybe once in a blue moon in my left index large knuckle, that would last a few hours & then be gone.
Off the meds I notice more joints with minor pain & it moves around a lot. Just today I started with that familiar knuckle I just mentioned & it was gone by the time I got to work but it was my big toe left foot, then that was gone & it was my right elbow. By the end of the day I was all good & went to the gym! LOL!