5 Rheumatoid Arthritis – RA Flare Facts
RA Flare – fact or fiction?
If you want to laugh out loud, just Google RA Flare. No, not right now. Finish this first. Anyway, the topic of RA flare produces some very silly and contradictory discussions. For example Web MD offers How to Prevent Rheumatoid Arthritis Flares. If only.
So today we approach one of the most misunderstood aspects of rheumatoid disease (RD). Like morning stiffness and fever and some other RD symptoms we’ve examined, the only straight scoop comes from asking people living with RD (PRD). I hope you’ll share your thoughts in the comment box below.
You might also like to read:
- Poll Shows Textbooks Wrong on Rheumatoid Arthritis Morning Stiffness
- Sustained Rheumatoid Arthritis Remission Is Rare
5 simple facts on RA Flare
1) Flares are not a universal pattern by any means. Disease patterns can be unique. Many people with rheumatoid disease (PRD) do not experience a flaring and remitting disease pattern, but constant disease activity.
2) Flares are only relative to usual disease activity. If usual disease activity is mild, then moderate disease activity would be considered an RA flare. If usual disease activity is severe, then flare would be very severe.
3) Injury or activity can create or exacerbate flare. If inflammation is present, then any insult or extreme activity is likely to make it worse in the same way it would with an injured joint.
4) Flares are not limited to joints. Rheumatoid disease activity is not limited to joints, so the concept of RA flare should not be either.
5) We do not know the cause of RA flare. But PRD are not to blame. The expression of rheumatoid disease patterns may be a function of subtypes of the disease.
Normal between RA flares?
Most medical articles sound like rheumatoid disease activity is quiet most of the time with occasional active periods called flares. They actually seem to imply that “between flares,” people with rheumatoid disease (PRD) live a normal life. For example, the American College of Rheumatology (ACR) RA page: “It is important to be physically active most of the time, but to sometimes scale back activities when the disease flares.”
U.K.’s NHS says “treatment enables many people with rheumatoid arthritis to have periods of months or even years between flares.” I’ve never heard of PRD having years between flares – that would be called remission, which is limited to about 6% in the real world.
Questions about the common notion of RA flare
However, the U.S. National Institutes of Health Handout on Rheumatoid Arthritis has a more sensible position: “For many people, periods of relatively mild disease activity are punctuated by flares, or times of heightened disease activity. In others, symptoms are constant.” (Never mind that the next paragraph perpetuates the hand disease myth.)
That is a fairly accurate description of mild RA and I was glad to read it on the NIH site. It reminds me of my experience for over 20 years before I was ever diagnosed with RA. That mild type of RA seems to be mostly undiagnosable, except for in very early RA clinical trials.
The U.S. Centers for Disease Control and Prevention differentiates between a polycyclic (flaring and remitting) course of RD and a progressive course that “continues to increase in severity and does not go away.” Up To Date also recognizes the fact of individual disease courses in RD: “Rheumatoid arthritis often has a variable course: it can go into remission, follow a fluctuating course, or worsen steadily.”
Seeing the NIH, CDC, and UpToDate acknowledge that RA flare is not universal is reassuring since most ACR members I’ve met insist that all rheumatoid disease is polycyclic (flaring and remitting). I have always believed other patients (and myself) even though I wished constant worsening disease wasn’t possible.
How many PRD get time between flares? Let’s get to the bottom of it. Please share your experiences.
AS A PATIENT OR CAREGIVER, WHAT IS YOUR EXPERIENCE WITH RA FLARE?
How often does RA flare in your experience? Choose one & answer in the comment box below.
1) Constant disease activity, the 24/7 kind of RA
2) Good and bad days, but never back to normal pre-RA
3) Normal most of the time with only occasional flares
Recommended reading
- Remaining Pain with Rheumatoid Arthritis Treatment
- Rheumatoid Arthritis (RA) Treat to Target
- 15 Early Symptoms of Rheumatoid Arthritis
CLINICAL TRIAL OPPORTUNITY
Do you have RA / RD? Are you interested in learning about a study for a new investigational medication? Click here to learn more.
I am I guess technically as close to remission as I can get. Normal disease activity is stiffness and fatigue, and pain in my feet and ankles. I wear out easily and by the end of the week I am a mess.
Flares… which I get the week before my menstruation begins mean walking becomes difficult, my hands begin to lock up and I get large joint involvement. Every period. Lasts until the bleeding stops. Needless to say there is nothing nicer than cramping in agony all over.
My only other recent large flare was stress induced finishing my thesis, which lasted 3 months. And one from experimental drug tapering that did not work (although that would just be the regular unmedicated disease).
Sometimes I get the pain and fatigue in separate rounds.
Oh…and I am a 2.
1 I can’t remember the last time I was not in pain! Inflammation is always present and I just learned that I now have joint damage in my feet and hands. I feel like I’m 90. This disease has altered my life so much….I think I’m living a nightmare!!
Here I am lying in a stupid hospital bed in my daughters house at 3:30 in the morning because I can’t sleep because I’m in so much pain. Due to yet another one of my flare up. I really can’t wait until this period of my life is over. What I really wanted to share is I’ve finally got a them to listen to me and I going to be trying do do things my way for approximately 3-4 months I’ve totally detox my body off of everything and almost of all pain meds. NO MORE OF THERE LIFE KILLING DRUGS!!!!!
I’m 100% trying diet. There is this Dr John Bergman I’m trying what he is saying . I let you know how it works for me. I’m inone of my worst flare ups so we’re starting it this week. Please check him out he also has some videos on YOUTUBE regarding RA.
#1 for me too. I experience pain every day and mornings are the worst. I’m on my third infusion of Remicade and also taking Plaquenil, Methotrexate and methylpred. I would give anything to ever see remission. My rheumy doctor said it will never happen for I have seropositive RA. I’m happy for any of you who achieve remission. Be thankful for good days and think positive on the not so good days.
Lisa,
I will be interested to see how change in diet affects your RA. Keep your chin up and try to stay positive…the right treatment for you, and all of us, is out there. We just have to find it. I hope you success in your treatment you are seeking.
#1 I always have at least a few spots that hurt, lowest pain level is 4, mostly 5 to 6 on pain scale. It is controlled better these days, but if I do any activity it flares up. The fatigue is what kills me, I have to nap every day or the pain gets too much to do anything. I’ve learned to deal with the pain but nothing helps the fatigue.
I have constant pain with my RA, but some days are better than others. One thing that I have discovered is that the level of stress in my life has A LOT to do with the level of pain. If I’ve been under a lot of stress, I may have 2-3 months or more of very bad pain. (It’s been bad for me since before Christmas…)
The weather also plays a big part. When it’s warm and humid or when a weather system is moving in, I would love to just be put into a medically induced coma to get relief from the excruciating pain that the barometric pressure changes cause. Cold weather, even with snow or rain is the best medicine I have found, but unfortunately, in Texas, we haven’t had much of that in the last couple of years.
To some degree, I have a headache 99% of the time. At times, it feels like my head is hot….and I usually have some fever and an achy, “fluey” feeling. My hands and feet hurt so bad that I have a really hard time walking or, say, picking up a glass or a book, or hooking a lead rope on my horse’s halter.
Lately I have more time IN a flare than OUT of one and it’s gotten steadily worse over the last few years. It has drastically changed my life…..
I would say mine is the second choice. I don’t have many days that I am pain free in fact I would say just the opposite. I was diagnosed 17 years ago and have been on methotrexate almost from the start. Plaquenil was added about 10 years ago. About 6 years ago I was put on remicade infusions. I could tell a difference on remicade. Almost 2 years ago I was diagnosed with breast cancer and my methotrexate, remicade and plaquenil were suspended during my cancer treatments. Going back on these medications,especially the remicade, the effectiveness never was the same. I think my chances of ever feeling like my pre-diagnosis strength and pain level isn’t happening.
Im only 2 years in and its been “#1Constant” for the past 10 months, a “good day” is still a bad day!… I’ve been taking Enbrel & MTX for 6+ months now which lessened the frequency of full blown all joint attacks that bring on full tears and prayer (my version of a flare). Exhaustion has been downgraded to constant fatigue and tendonitis has disappeared , BUT joint pain progresses daily. The old, pre- RD me is forever gone.
Good Luck to Everyone!
I am seropositive & I have pain, swelling & fatigue 24/7. I also have periods like now where I flare. Then I only sleep 4 hours a night & my pain meds barely help.
I would say I am #1. Diagnosed when I was sero-negative in 2004. Years later the RF antibody finally showed up in my bloodwork. Have tried Enbrel, Humira, Plaquenil with Methotrexate, but due to a severe case of MRSA in 2010 where I became septic, doctors decided it was best not to put me back on any of those drugs. I am now on a daily injection called Kineret and oral medication called Sulfasalazine. It is keeping my RA at bay for the most part, but I don’t sleep, and feel lousy most of the time. I have to be careful not to overdue anything strenuous or it makes my joints flare up. Stress of any kind will throw me into a flare as well. My family doesn’t really understand why I feel like I do, they think I look just fine. They even recommended I see a therapist. My husband is very understanding, however. My girls and their families don’t come over or call anymore. It makes me very sad.
My good days are so rare, that I’m scared to trust it. I have pain everyday, it’s just in a different area of my body. The first time my shoulder froze, I didn’t know what to do, I tried heat and cold, nothing worked, it stopped on it’s own. The pain from my back goes down my right leg, the left leg is not as bad, it’s the toes on that foot, they’re numb and the foot always feels as though it’s on fire, but if you feel it you can’t tell. I have nodules under my left foot, I no longer walk barefoot. I’m nauseated most of the time, and I’ve been getting an itchy feeling everywhere, thank God that doesn’t last long. I don’t know where I’m going on this RA journey, but I wish I had never got on board. Thank for the RA Warriors, I have learned so much about this disease that I didn’t know, and thank you to everyone who shares their journey with us, God bless you all.
No 2
I consider myself to have relatively mild seronegative RA but I never feel the way I used to, as even if there is no pain the fatigue can be crippling. I have good and bad days, never periods of complete freedom from it and sometimes flares which are really painful and depressing.
1) Constant disease activity, the 24/7 kind of RA. To OFTEN
2) Good and bad days, but never back to normal pre-RA. YEP
3) Normal most of the time with only occasional flares. A MYTH
Saw a musical a few years ago about a family with a Bi-Polar Mother. “Next to Normal”. That is just about right. My Mind is fine–Especially once I knew what was happening to me. BUT i have “Bi-Polar” health and stamina. I used to try and be cautious on good days so as not to “trigger” flare. Forget it. On Next to Normal days, pull out the stops and attack something you have wanted to do for a while. (like serious grocery shopping or yard work or deep cleaning or a trip to forest preserves.)
Never sure which is worse, blocking out the background noise of hurting or trying to “Suck it Buttercup” from constant fatigue.
I’m a 1.
Whenever I hear about “flare-ups,” I think to myself “How can I miss you when you never go away!”
How can I have a flare UP when it never goes DOWN!
I think of my disease like the tide. Waves will always crash on the shore, but when there’s a storm or something, the waves are much bigger and the crash is much more violent.
I am always in pain, but many times a week it feels angrier, harder, more force.
so well described Valerie – thank you.
1 before treatment and now 2.
thanks Holli. My theory is that is the most common – that is what the treatment response is for most.
I have been diagnosed with RA since 2008 with the major symptoms starting in 2007. At that time it was referred to as inflammatory arthritis. Never a clear picture of RA, no elevation of RF or CCP but extremely elevated CRP, sed rate etc. I have been on methotrexate then added Humira and finally completed removed from mtr in 2013 with a change to Arava. Over that time the RA reached a point where I was considered in remission. Labs normalized. I have flared once. But I am not the person I was before this all began. There is still stiffness and pain but I am often told my issues are osteoarthritis, which I also have. I tend to believe it is a combination of both not clearly one or the other. I recently had surgery on my left thumb with joint fusion, removal of trapezium and harvest of two tendons to stabilize the thumb. I asked my surgeon if she saw signs of the RA during the surgery and she said there was significant synovitis. Now I am going through new testing a Vectra DA which now has gone from 40-49 shows high disease activity. I am also scheduled for ultrasounds of my ankles and wrists. All this before and possible changes may be made. With all this I am grateful for my career as an RN for 42 years, I have needed that experience to help me manage my life now. I can’t imagine how exasperating it is for regular people to deal with this disease. Because the only clear thing about this disease is that there is nothing that is clear. While new drugs have been developed that allows some people to have better outcomes, no life is returned to pre RA. The commercials for all these drugs are so misleading, not only to people who have RA but also everyone else who know nothing of the disease. They make it appear that you take a pill or a shot and you are back to normal, which is so not the case.
Doris, you make so many good points.
I fear that most people with the new classification of “remission” are not – your thumb is proof you were not. In my book I quote experts who say disease activity continues, especially in the seldom measured non-joint aspects.
What actually is occurring in most people is a partial response to treatment and a failure to measure the full range of disease activity or impact.
But just decrease hand swelling and it’s called “remission” now.
I was a #2 since 2012 when I was first diagnosed; but am now #1 for the past 8 months. I was on Humira and it has now stopped working for me. I have an appointment with my rheumatologist in 2 weeks and she wants me to try Xeljanz; I am not sure what to think about this drug and am apprehensive about trying it. I, too, have started the disability application process since I have been unable to work for the past 8 months. I have tried complete diet change in the past and it has helped, however, it is not the sole answer. I recently received my medical cannabis card for pain and am still trying to get correct dosing during the day. Edibles at night are a God send because I am sleeping through the night without pain. My journey continues….
When I was first diagnosed with RD, I read about periods of remission, and fully expected it to happen. By the time I was diagnosed, my disease was in the moderate/severe range. That was over 15 years ago. I have been on almost every treatment, and currently take methotrexate, plaquinel, and Rituxan infusions. Vectra scores in the 70’s before Rituxan, and in the 50’s since. Still wondering what the heck a “flare” is. Every single day is a pain-full day. Some are better than others, but the pain is always with me. I have friends who take a small dose of methotrexate and the RD is controlled. This is one weird disease. No one can understand the pain unless they have experienced it.
you’re so right Pamela, no one can – even someone else with the same diagnosis, but a milder form.
I always thought I’d get better too.
It’s one of the several odd things about RD that the textbooks talk about “flare” like it’s a universal experience when it’s far from it.
In my 19 years of constant moderate-to-severe Rheumatoid Disease activity with severe flares 8-10 times a year. (Only one three week remission in 2007.) My pain could be bone pain or tendon pain and involvement of the neck, shoulders, elbows, wrists, fingers, lower back, knees, ankles, or the bones and fascia of the feet. Every new day brings it’s own new set of challenges, depending on the areas of the body hurting the most that day. Being humble enough to accept help when needed (which seems to be more and more often as the years go by) and to use mobility aids which go from a cane or walking sticks to a transport chair or a wheelchair, really helps a lot.
Since the pain is a constant companion, exercise is a rarity. I get excited if I can do a bit of walking! To read that exercise is recommended is almost laughable for a severe RA patient!! I know my body so well by now that I can usually gauge how much activity is acceptable without putting me in a self induced flare. Sometimes the flares just appear “just because”.
Thank you for sharing these insightful comments, Mary. Experiences of veteran warriors are very helpful.
24/7 not slept properly for over 10 years , Wake up to realise the sort of day I am going to have ,but feel like going to sleep again just woke up move and it starts like somebody sticking pins in a voodoo doll.Move to get up feel like the tin man in the wizard of Oz take my mes
lean to get my pants leg pains and pick my pants up giving like an electric shock in every knuckle and thumb wrists arms and shoulders pulling them on same with socks jumper have a wash best I can while trying to balance on my two knee transplants and painful ankles and feet. Look in the mirror say “woulden’t wish this on anybody” but then think there’s worse than me, let’s try another day, put on a smile ,usually by dinner time I think I will have to lie down on the bed for an hour sometimes a spoonful of morphine needed drop off think nice thoughts an electric shock in my wrist wakes me fifteen minutes exercise, up have something to eat either Potter round the house or the sun’s out a stroll to the local shop which used to take 10 mins now takes me an hour back home still there’s worse than me.I smile as I drop of into sanctity of sleep .where I am now and how I was .I smile as I dream of nice happy times then wake when I get an electric shock in my elbow ah well tomorrow’s another day ,there’s worse off than me ,I smile as i look in the mirror,your not going to beat me without a fight I smile again to prove it has’nt. Funny that it does’nt hurt when I smile, so remember turn that frown upside down, its not going to beat me, there’s worse off than me.
After reading all the comments I finally feel that I’m not crazy. I have good and bad days (more bad) but nothing close to pre RA normal. I am trying to adjust and find a “new normal”. The pain and fatigue, side effects of the drugs and loneliness make dealing with this disease so difficult. Thanks for sharing!! ❤️
Carlene, you remind me of the beginning of my book where I talk about how I tell people what I wished someone could have told me – you’re not crazy. Thanks for sharing your story.
3 now, mostly, with my “normal”. Currently treated for sinusitis and have a chronic pericardial effusion monitored by echocardiogram quarterly. (Which increases as RD activity increases) Joint pain, mild, and is usually toes, hands, neck.. Had to have Prednisone and antibiotics for sinus issues recently. Hoping my delicate balance to avoid flares returns as the recent time change was very disruptive. Can’t keep the effusion down otherwise, and don’t want to experience cardiac tamponade.
#1 Severe Refractory RA. On MTX, steroids for over 5 years and trying Xeljanz. Last drug, failed everything else. I have a cellular protein deficiency and cannot take opiates or N-SAIDs (Motrin , Celebrex…). So life can be pretty tough. but you all know it is. Lyrica has helped so much and I am so grateful for it.
Thank you for asking.
Good and Bad days, never pre RA.
I am in year 14 of being diagnosed with RD and I genuinely think I can count on my fingers and toes how many days I have really felt well or “normal.” I was granted disability retirement from a federal government job at age 38 because of repeated hospitalizations and constant complications. I 100% associate with #1.
Good and bad days, but rarely pain free and always fatigued. Definitely nowhere near pre-RA. ?
I am recently diagnosed and have not yet had whole days without pain, but short periods of no pain happen and by that I mean an hour or so. The symptoms vary a great deal even in one day. I may have 2 hours of feeling well and suddenly become so fatigued I can barely move. Or tolerable pain that suddenly becomes agonizing. This disease is so unpredictable! I guess I am #2 on a daily basis.
2. Good and bad days but never back to normal
I am a 2-3 I believe.diagnosed in Nov 2017. my Rheumy just upped my Mtx to 8 pills a wknd, as I was having lots of symptoms. Took last Friday, Sunday I had negative “spoons” felt like someone had pulled a plug and let out all of my air. Tired most of the week. Friday again, meds again. First time, I have sores in my mouth, already tired. Hoping it levels back out. I have only had what I consider a flare 2-3 times. But can someone tell me, how long can a flare be? 24 hours, a day, a week? Usually after symptom get better, I realize it was a flare.
Dear Valerie, I don’t think there is a limit. It varies a lot. My last flare has lasted 12.5 years so far — 24/7 every joint and other systems.
Definitely number 1 for me! This is the first article that I’ve come across that recognizes the literature is flawed and misleading when it suggests that RA is “quiet” most of the time. Since being diagnosed ( self diagnosed first) for 4 years now, everything I’ve read has made me question my symptoms and whether or not I was self defeating! As a nurse I have access to various types of literature and have been disappointed by a lot of it for this and many other reasons. Thank you for writing this article.
I’m a #2. It’s hard for me to tell when I’m flaring. I also have fibromyalgia. I’ve had both hips totally replaced. Need my knees replaced, spacers in my shoulders. I’m 50, btw, been battling RA for 15 years. I used a cane for some years, but now I’m totally reliant on a walker for about 6 years. The info that you shared is very helpful. Thank you. To all fighting RA, may you have more pain-free days than painful days.
My Rheumatologist put me on chemo shots. I had to stop because they made me so sick.