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What Does ‘Remission’ Mean to Me?

Does remission apply to autoimmune diseases?

The definition of remission is “a temporary or permanent decrease or subsidence of manifestations of a disease”.

No symptoms? No need for meds? It sounds like something I’ll never achieve, a pipe dream, if you will. I am on medications, I have the symptoms and my condition dictates my everyday life.

I can’t be in remission, especially when I think of the textbook definition. It sounds pretty concrete. For example, you have cancer or you don’t and if you don’t have it then you’re in remission, right?

But, I have learned that autoimmune conditions are not text-book because sometimes the hard facts show disease activity while clinical symptoms are low or vice versa. Or, the symptoms don’t truly line up with any one rheumatic disease!

Re-evaluating RA remission

I’ve had to re-evaluate my definition of sick and along with it, remission. It may not mean a total absence of the disease. It might mean I’m managing my condition well enough I don’t think about it all. the. time. Maybe it means I am just on maintenance drugs and the symptoms are on the back-burner and not full frontal all. the. time.

If I was thinking about remission in those terms, maybe I was in it…for a short period of time.

How do I know? I certainly had the symptoms and the medications to prove them. It wasn’t just about management. I am happy to say, my condition has been well-managed for a couple of years now. There was something different about this last year; small things, sure, but they added up to something huge: possible remission!

First, my steroid use. I have been on Prednisone since my diagnosis nine years ago. I’ve taken as high as 20mg during flares and as low as 8 for maintenance. 8 is great, 8 is beautiful but it’s not low enough. I tried, fruitlessly, for years to lower to 7mg but it was like I hit a brick wall. Each time I went down that measly 1mg my body revolted and I ended up in a total chaotic flare.

Things changed last Fall when one day it just clicked. My body tolerated the 7mg. I alternated 7 and 8mg (please always check with your doctor to make sure this is a possible option for you) and nothing happened. I pressed my luck and took 7mg multiple days in a row and I felt the same!

I did it! And, I didn’t have to increase my pain medications to compensate. I was plain old stable on a lower steroid dose.

And, then, there was one thing that really struck me. My fatigue was GONE. G-O-N-E, gone! I wasn’t tired! Fatigue has become my best friend since my RD flared and because of it I slept through my 20s. Life without this constant lethargy was a) unfamiliar and b) very noticeable! I wasn’t napping during the day and I was sleeping okay at night (read: better than usual). I didn’t have mounds of extra energy but I was getting through a day without wanting to curl up in a ball on the floor.

I know it really doesn’t sound like remission since I was still on the Methotrexate and on the pain medication; I still saw my rheumatologist regularly but it didn’t feel like the Rheumatoid Disease was dictating my life. For a spell, I rarely thought about it and for me, that sounds like the closest to “absence” as I’m ever going to get.

What do you think? Did I experience remission or just a good, well-managed period. I want to hear your opinion!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Noelene
    8 months ago

    Enjoy your period of well managed rheumatoid arthritis.

    For me accepting my limitations has been a turning point. I no longer push myself to achieve tasks but just meander along.

    Discomfort from Osteoarthritis is almost constant, but hydrotherapy has been beneficial.

  • Monica Y. Sengupta moderator author
    4 months ago

    Glad to hear hydrotherapy has helped you, @Noelene!!

    I’ll be honest, I still push myself the way I did before the RA. I know it’s not good and I am trying to come to terms with it but I think that is why this period of “remission” was so important to me!!

    Thanks for commenting on my article!~Monica

  • Franki King moderator
    8 months ago

    Noelene,

    I agree. Once I accepted my limitations, I felt I had been freed of my own expectations to be stronger or better.
    I am sorry to hear that your discomfort is constant. Hang in there!

    -Franki (RheumatoidArthritis.net Team)

  • tckrd
    8 months ago

    To me it doesn’t sound like remission but it does sound like well managed. What does your rheumatologist say?

  • AndyS
    8 months ago

    I am now approaching sixty two and was only recently diagnosed with PsA. My symptoms have been fairly mild; one small area of psoriasis on my leg (about the size of my palm) and uncomfortable joint pain (often alternating from my left side to my right). However, the only medication I take for this is amitriptyline, which acts upon the nerves and reduces pain. Recently I had to come off this medication temporarily, and I was quite surprised at the increased pain I suffered. So, in a sense, the medication was masking what was really going on. It is my understanding that RA is a progressive disease and that in the latter stages joints can be completely destroyed.So in answer to your question I can only pose another similar: can there be any truly clinical remission with RA or is it more likely that its progression is slightly delayed?

  • Susie Que
    8 months ago

    I’ve never gotten to remission, my RA is not like others, my feet are not affected
    (Knock on wood). But every other joint in my body is. I also have nerve pain episodes that last 3-4 minutes and some days I have between 15 -30 episodes in a day, waking hours. I have them at night also but never track how many.
    Extremely painful so it adds to the RA.
    I would love to have just one day free of all this. Just one!

  • Franki King moderator
    8 months ago

    I’m so sorry to hear this Susie Que! I know what it’s like to feel RA pain in almost every joint and also have an additional non-RA related pain. Know that you’re not alone. Hang in there! -Franki (RheumatoidArthritis.net Team)

  • Sammy67
    8 months ago

    Your piece was just great. It was so meaningful to me. Thank you.

  • Monica Y. Sengupta moderator author
    4 months ago

    Hey @sammy67!

    Thank you so much for your kind words. I really appreciate them. All the best, Monica

  • Franki King moderator
    8 months ago

    Glad to hear this resonated with you, Sammy! Thanks for being in the community with us. – Franki (RheumatoidArthritis.net Team)

  • dkrock
    8 months ago

    Believe that I am in true remission, going to stop IV treatments after next month. It seems too good to be true and I wonder how long this will last. RA is not the primary focus of my life.

  • Knitluv
    8 months ago

    Thank you for this article! I have been struggling to define “normal” (or remission, I guess) since I was diagnosed a few years ago. I don’t think I’ve experienced it yet. My rheumatologist used to say things like “you’ll feel like yourself again,” and “our goal is to get you back to 100%.” He doesn’t say that anymore. But there must be a middle ground, say 80%? 90%? Someplace I can live a reasonably normal life. I think if you weren’t constantly aware of your symptoms, and weren’t fatigued (what’s that like?!) then you could definitely call that remission in this ever-changing, goal-post defying disease. Congratulations!

  • ALW1821
    8 months ago

    I asked my rheumatologist this question, what is remission? and he said it is when you feel fine without any medication.

  • Monica Y. Sengupta moderator author
    4 months ago

    Oh gosh, @ALW1821! If that’s his definitely of remission I am certainly not there yet! (And probably will never be).

    When I spoke to my rheumatologist he said I would never be off the steroid but to get it down as low as possible. Initially, we thought maybe 6 but 8 became the routine.

    Who knows! Thanks for commenting on my article!~Monica

  • GrammieSue
    8 months ago

    Well, here’s my situation. Went to the Rheumy on Mar. 20 for check up, and to discuss other meds options. Have been on methotrexate & plaquinel for about 5-6 yrs. Leuflonamide was added around Dec. I was having liver achiness, and the Rheumy told me to stop all meds, and get an ok from the health insurance for humira injections every other week. He sent me down for a blood work up, and the results came back with liver normal (previous was abnormal), and my inflammation was none for the first time in 5 yrs.! So I waited and called Rheumy’s office and spoke with his assistant. She told me I should start on humira right away, to get it in my system. I said no thanks; I feel like my old self, and want to enjoy it. I am starting to feel more stiff and achey each day, but my diet of cutting down sugar, and eating red grapes has been helping. I don’t know how I got into remission, but I dread the day I have to call back for help ( humira). Rheumy will probably be disgusted with me, but my gut told me to just enjoy the remission ride for as long as I can!

  • Jo J
    8 months ago

    Monica, thank you for your very hopeful post! I am 2 years into treatment without a remission, but have had some overall improvement. For me, I will happily declare Remission when I can be an active participant in my grandkids life, do my yoga, walk a few miles and travel with my hubby without pain meds or steroid bursts. I’m cool with those results even if I’m maintaining a course of DMARDs and biologics.

  • Lawrence 'rick' Phillips moderator
    8 months ago

    My rheumatologist defines remission as me not complaining at two consecutive appointments. I will never let that happen. 🙂

  • Heartsong
    8 months ago

    I always thought of remission as “no symptoms.” I wonder how the rheumatologist would define it. I also wonder about the definition of “flare.”

  • Knitluv
    8 months ago

    Me, too. I seem to be in one long flare…

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