Courses of Rheumatoid Arthritis
Are there distinct courses of Rheumatoid Arthritis for RA patients?
We talk so often of what we have in common. Let’s think about our differences for a moment. One of my very first blog posts was about the four courses of Rheumatoid Arthritis. It’s like a fact of life with RA: we are not all the same. But, how are we different? Can we be put into groups?
When I was newly diagnosed with Rheumatoid Arthritis, I didn’t know anyone else with the disease. My joints had no one to compare themselves with, so they went rogue. At least my doctors thought so.
Poking around the internet, I found people like myself – well, their joints were like mine anyway. You know how good it feels to find you aren’t alone. However, I also noticed patients whose RA was not like mine. Maybe they had nodules on their hands. Maybe they could still swing a tennis racquet.
I looked up my observations in some books and articles, and the consensus was three or four different courses of Rheumatoid Arthritis. Since then I’ve sometimes wondered whether there might be even more than four courses. Courses of Rheumatoid Arthritis are not actually determined by some objective evaluation anyway. They are estimated by observing symptoms over time. Just a few examples.
- There are RA patients whose damage occurs slowly and RA patients whose damage is immediate.
- There are RA patients with obvious swelling without extreme disability; there are RA patients with less conspicuous swelling who are disabled swiftly.
- There are RA patients who have brutal damage in one joint at a time, requiring surgeries; there are other RA patients who suffer gradual erosions all over the body.
- There are RA patients with lots of extra-articular symptoms; there are RA patients with few.
- There are RA patients whose symptoms flare and remit; there are RA patients who improve for years at a time; there are RA patients who are always in full flare.
Isn’t it funny to compare courses of Rheumatoid Arthritis?
I’m sorry, but that list reminds me of “This little piggy went to market, this little piggy stayed home…” At least with that, there are five piggies. Maybe it’s that pulling sensation in my twisting toes that keeps distracting me.
No one knows why some Rheumatoid Arthritis patients have joints smart enough to read the textbooks. I’ve not found many. Wouldn’t it be wonderful if we had RA cheery enough to read the RA article in Woman’s Day?
Have you ever found another RA’er who is just like you? Do you sometimes feel like explaining your RA so others will know? Do you feel anyone understands what your RA is like?
Coming soon: Let’s get a closer look at what the research is showing about the courses of Rheumatoid Arthritis.
Recommended reading:
- The Four Courses of Rheumatoid Arthritis, part 1
- 3 Reasons to Stop Saying “Complications of Rheumatoid Arthritis”
- Being Blessed While Having Rheumatoid Arthritis
- American College of Rheumatology Redefines Rheumatoid Arthritis
- What is Remission of Rheumatoid Arthritis? Part 1
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Very well said. I don’t know if there if there is any 2 of us going through the same pain at the same time, of course I assume there are many of us!! At the same time the article is so very true, maybe what one RAer felt last week, another RAer is feeling this week. Who really knows what triggered the pain, heat, swelling and stiffness. Was it a multitude of things? Was it one stressor? Are we all stressed by the same things in life? Is food something that triggers it for one person, but not the other? Is it the weather for some, but not others? Why is it some people become more affected than others? What about the course it takes in each individual, why is it so different? Things that make you go HMMMMMMMMMMM.
Kelly you are doing a fantastic job!!! The amount of research you do, the effort you put into RA. You are truely an inspiration to us all. Thank-you!
It’s amazing that your graphic matches the course of my RA from age 17 to 56. I now live in the tower of terror. Meds don’t work as expected. Most no better than the 1000’s of aspirin and gold shots I took in the ’70’s. Stuck on steroids ++. Knowing how much I need surgery and don’t know how I’d survive the fatigue and healing up. Not knowing if I’d heal up, given the state of my osteoporosis.
No, I’ve never met anyone like me and I was always open that I had RA on and off the job. The closet I’ve come is my Mayo Doc saying he has one other patient that is close to me in progression. Think about how many patients they see there and he’s been working close to 25 years.
Thanks for giving us a place of hope. It helps to know that I am not in this terrorizing quagmire alone. Especially since my family thinks because I’m not in a wheelchair I’m not crippled. The only one who knew, my Mom, died Feb. 7. And I have never felt so alone with this disease.
Nanc, I know we can’t know exactly how you feel, but I feel so bad for you about losing your mom and friend. :heart:
I too read the net and find the cute little ra group.. The cute little oh Im stiff for a whole ten mins in the morning people… I scream silently , alone in my caccoon of unhappyness and pain.. That is till I found this blog…Sadly I also believe that the SSI will deny my case as They too read the cute little stories of the stiff for ten min people..Iam head to toe a mess. i hurt with Kadian 8- mg er. plus all my dmards.. my RA too isnt reading the posts.. one day i hope it will and soon. be cute and fashionable..
80 mg… sorry
Shannon, you are too funny. We really enjoyed the laugh. :rotfl:
Thank you, Kelly. She made sure I didn’t end up in a wheelchair at 21, which was my prognosis. It was her attitude that made me go out and work, work, work. And when disablity (the second time around) was finally real and not just a someday thing she took me home again. It was both of us taking care of each other, to the best of our abilities.
My only solace is that I feel she’s still watching over me and telling me to keep going, as well as I can.
I’ve been in all 4 groups (and I suspect more) at one time or another. I used to belong to an arthritis support group and we were all different. I could see myself in some of the other women. I was the most “experienced” RAer ( I was dx at 15 and am now 36)in the group and sometimes I felt like the others expected me to be the expert. I also felt they looked at me as if they were catching a glimpse of their futures. Of course we can never know what the future holds, I remember gold injections back in the 90s and now there are so many more and better treatment options and meds. Today, and I mean this day, my RA is quietly sitting in the background- last week it was demanding attention and I had to chew my pain meds for a chance at relief- who knows what tomorrow will be like and what group I will be in…
Hi Noel, glad you are getting to have a good day. 😎
Thanks Kelly! I’ll take them when I can get them! I want to let you know how excited I am to have found this site! I love the info you post and the opportunity to hear from other people who “get it”! Thanks!!!!
I’m glad to read that there are others whose RA has changes stances over the years. When I was first diagnosed, I’d have one joint “flare” at a time, for the most part, but the flares would move all over my body. One day a hand, the next a knee, etc. Sometimes they were terrible, stunningly painful, disabling flares that would last for two days; other times just annoying but non-disabling pain that would last a week. I never knew what to expect, or when.
Then I went into remission. I remained pain-free for the best part of the 2000s.
Now, my RA is active again. But this time, it’s mainly in my hands — both of them, and at the same time. Some days are worse, pain-wise, than others, but this “flare” is continuous. There is never a time when my hands don’t hurt. In addition, this time I’m also fighting fatigue and fogginess — something that I didn’t have to cope with earlier in my RA experience.
This is a maddeningly individual disease. No wonder it’s so hard to get a solid diagnosis.
“This is a maddeningly individual disease. “ Sums it up, Wren. One more reason it can feel lonely.
I already had OA and Osteoporosis and about 8months ago was told I had RA in my hands as well Thought I knew all about pain but this is awful Just gone onMethotrexate Too soon to tell if its heling but the Cocodamol and Ibubrofen arnt touching it In thenight its twice as bad What sense does that make But thankyou for your comment o it it helps to talk to others Eve typing hurts like mad But im a stubborn woman and refuse to give in to it and can cope if I cansleep but if not im a nightmare How are your nights
While reading the post, I kept trying to figure out which was the mildest course to handle….sadly, theres none! I have had days when I had pain in my every single joint and muscle and it was so severe that used to pass out and I have days when RA shifts its concentration to my wrists only….yes, on those days only my wrists hurt…but those are the days when I can’t even help myself with a glass of water, can’t reply to my friend’s mail or write a post on my blog…..its hard to say which one of those days brings my spirit down more! This whole experience has changed me into a person with complete sympathy even for those who face occassional backaches….Pain of any kind has one common effect, it damages one’s inner strength.
(PS: I got really emotional there. sob..sob 😥 Please God, let the life be free of pain from this moment on)
Mine definitely started out with brutal damage to one joint at a time requiring surgeries. These joints are the ones that have caused disability. I’ve had to explain many times why I can’t do something. Now with MTX and Enbrel it’s been up and down, but I always have some joints hurting. I was encouraged recently when only my shoulders were flaring, but now it’s back to more again. I don’t know if anyone is just like me, but it’s nice that we can all relate in some way. I think mine may be different in that I haven’t had too much trouble in my hands and so many think this is a hand disease. My large joints are most affected.
Hi Ronda, the courses are representing the whole course of your disease. I’m not sure I emphasized the original post enough to make that clear. But knowing you, you’ve read it…
I remember a couple of years ago when my hand pain was mild & intermittent. I used to say how glad I was that for me it was not a hand disease. Anyway, it has progressed. This yr is not like last yr which was not like the year before that. Hopefully your treatment was early enough to make this different for you!! :heart:
I did read the original and then again yesterday. I really don’t know which course I fit into. Does “remit” mean no joint pain swelling or stiffness? If it does then RA has never totally remitted. I started having problems in 2007 and was diagnosed in 2009. For now I’ll be happy with not many hand issues,knowing like you that it may creep up eventually. Three of my finger joints were damaged and deformed before diagnosis, but none since. Thanks for your reply since I’m still pretty confused about all this.
Ronda, it’s not your fault you’re confused. There are a variety of opinions out there. Dr.’s vary on how they view “remissions.” I think “remit” means “get a lot better” to most of them, not “gone” (like it does with cancer). I had decades of “hurt for several days” and then be “fine.” Now, 4 yrs of not a moment without tremendous pain/disability/stiffness in many joints at once. Like you said, affected joints are never free of joint pain (stay “tender” it’s called) – not pain free. I do know of people who have had genuine remissions, without pain. HTH.
Thank you so much. I feel that I understand now. My rheumy just confused me, since what he told me to expect was not my reality. I asked him “What should I expect as far as pain relief with the dmards etc. He said “to have no pain” So when I came back and said I still have pain he said “you shouldn’t have any pain because your sed rate is normal, so you must have Fibromyalgia. At my last appt. he asked me how is the Enbrel working for you, did it help the Fibro.? Grrr. It did help my RA and I know it doesn’t do anything to Fibro. I had my records transferred to a new rheumy this week.
I think at one time or another I have fit into 3 of the 4 courses. It’s a bit discouraging having a disease and not even being sure where you fit within your disease parameters.
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I think I am a rollercoaster right now. It’s funny, my RA Nurse Practioner used the same analogy when I was describing how I was doing at my last visit. She said RA is like a roller coaster. I should bring her a copy of this.
Good job once again Kelly!
I’m stiff for 10 minutes in the morning, and I don’t think it’s cute. I have just been diagnosed with “palindromic rheumatism that may have progressed to RA”. I have joint swelling, redness, and pain so bad sometimes I have to have my husband zip my pants, wash my hair, and wipe me after I use the toilet.
I’m scared. This stuff just started last may, when I was misdiagnosed with a rotator cuff injury and sent home with a sling and a bottle of Vicodin. I’m combing the net looking for information and support… and then after finding the article quite interesting, I look in the comments and see… well, something very sad. Not cute.
We’re all in different stages with different courses (as the article thoughtfully points out), and it’s not cute or funny for anyone. People share what they feel safe sharing; for some, it may be the morning stiffness.
There’s always going to be someone better off or worse off. I think the worst thing anyone can do is discourage those seeking help and support by having a contest on who suffers the most, and disparaging those who are in a different place than you are.
Unfortunately, still seeking support. Elsewhere.
Kym: I can appreciate your frustration, your rightfully deserved fear and the helplessness and possible humiliation of not being able to wipe yout your own butt. Why, because I’ve been there and I bet Shannon has too. (Well maybe Shannon and her butt are fine).
For years I had a hard won black sense of humor and a very thick skin about RA. It saved my life. Since I lost that RA has me, I don’t have RA, and there’s a big difference. If you happened to read another thread Kelly did about the RA Today magazine you’d better understand the frustration we all feel at what we’ve lost temporarily or forever. No one was making fun of you. I lurked for months before posting and never once have I seen any competion. All I’ve seen is empathy, we are all sisters (and brothers) in this horrible, life changing ordeal.
I hope you have a good rheumatologist available to you. I hope the newest meds work for you. I’m glad you have a husband that empathizes and helps. I sorry you may be lost in a storm of confusion, pain and the whole “why me” situation. Because I bet all of us went through it in some way shape or form. Fight the disease long enough and you may even go through those feelings more than once.
This may really be the right blog for you. Get suggestions from new and old warriors. I care and others do too. Kelly provides a safe haven and very well run site and I can feel the pain screaming in her hands on the days she doesn’t feel up to it.
You cannot judge a whole blog of excellent ideas from one post from a person who is doing the best she can with what she has to work with. Shannon, my RA can’t read for crap either!
If affordable for you go to Amazon or Independent Living and find the toileting aids, zipper pulls, waterless shampoo caps (unless you dye your hair) etc. If that’s not affordable buy a long handled wooden spoon, pad the handle, wrap the tp around and wipe. I have a spoon that will never see the light of day in my kitchen again, because I can’t afford the alternative. You need to try (emphasis on try) to do these things on your own, if only to gain the little bit of control it offers you over your own body and disease.
I hope you come back again. Just maybe we can help.
Thanks Nanc Ihave been trying to get some hand tools Takes me ages to eat a mealnmy hands twist into weird shapes trying to wield a knife and fork and get embarrased having meals out as hav gto hav my food cut up; for me But uv given me some good ideas to help as I cant afford these aids in catalogues Going to try some finger tubigrip on handles of my Knives an Forks I too hav a brilliant Rheaumatologist and theyre finding a special stick for me soIhav more grip as my hips are bad too Can see light at end of tunnel now Thankyou all so much
Nanc, thanks for your post.
You are right, I should not judge the group from one or two posts. I still would really like to know what a “cute little RA group” is – and how someone’s suffering somehow doesn’t count, because they appear to be in better physical shape.
It sounds like you and others have come to the acceptance stage of grief. I’m just coming out of denial and letting go of bargaining. I do feel sorry for myself – I’ve suffered many losses in life, and when I met my husband four years ago, I had lost my dad, my home of 15 years and all my equity through no fault of my own (to an infamous bank over unethical escrow practices) and had to drop out of a doctoral program just as I was starting work on my dissertation. It was high stress – that time in my life was a recapitulation of childhood trauma, and I feel broken from it.
So long story short, we all have our burdens to bear, and our losses to grieve. And I do feel sorry for myself lately, and scared, and now that I finally found my soulmate at the age of 50, and married him last October, I learn that I am going to have to deal with RA for the rest of my life. And so will he. No, GDI, it’s not fair. But then again – without him – I don’t think I’d be here right now, and I can’t imagine my future without him. In this way, I’m very lucky. He’s a really good man – worth waiting 47 years for.
When I responded yesterday I was angry and scared. I read that with lab results like mine, the course of RA is aggressive and damaging. I just had my first Rheum visit this week, and I start on Plaquenil tomorrow. I am anxious to learn about the x-rays, and if there is damage already.
It’s been less than a year since my first flare, in my shoulder. My labs show high white cell count, RF “unequivocal”, anti-CCP positive, ANA high, Sed rate high – all the markers for RA. According to what I was reading before I came here, the labs suggest my prognosis isn’t good. The labs snap me out of denial. I could always count on my physical health – it was my childhood and its internal demons I’ve been fighting. Now this.
So this is a loss for me. And for anyone – even for those of us newly ill and just learning about it. I also read some of these posts and wonder at the strength of the women (and men) who are long-term sufferers and in so much pain. And it scares me, too, to read these stories.
I will definitely check into some of these things you suggest, thank you. Writing helps. I used to keep a journal and may do so again. But it’s good to write in a place where someone else can read it and understand where I am. Thanks again for your reasoned response. There is a lot of good info here, and I’ve bookmarked the site.
What a wonderful and thoughtful reply. Where were you guys when I was first diagnosed? Between you and Kelly there is so much wisdom and compassion. We are all very fortunate indeed to have this site. There is strength in numbers and we need to stick together through this. Thank you for speaking so eloquently for us.
Just reaad all ur comments and feeling a bit ashamed Feeling sorry for myself and yet know there are so many people worse off than me Thanks for helping me feel a little better Im so glad ive found your website got a reason to keep going now look forward to getting to know u better…..
:-)) Marion, looking forward to knowing you too. Please don’t feel bad about feeling sorry for yourself. I feel sorry for anyone who has RA.
RA is different if different patients and it’s different in the same patient at different times. I hope for you it is never worse and always better.
I have experienced each of those with one addition. You know that ride they have at the fair where you get on this giant tin can thing and they strap you to the wall standing up and then it starts spinning. You get spinning so fast you can hardly catch your breath and then the bottom drops out. You want out so bad, feel like you are going to ralph and have absolutely no control over what is happening. This was me from November until about a month ago. Things started spinning out of control and the worst part was how one thing would lead to another making each thing worse….depression,flare,more depression, worse flare,worse depression,agonizing flare all over. All of the progress I’d made over the last 2 years, down the drain. I’m finally off that ride, walking the slow path back up to the top of the hill. I get really angry when people don’t understand but not because I think they are ignorant, it’s because of misperceptions that get passed on by drs and media and pharma company crappy commercials. I know there are probably people that those are truthfully representing but the it isn’t me. So now, I’m back on the roller coaster, but I really wish someone would give me the car, I hate walking! 🙂
Becky, fascinating description. & yes, the media RA… grr.
My mother and I both have RA. She is 60 and has had it 22 years. I am 30 and have had it two years. Our RA is very different. Hers started in her hands, and is a “roller coaster”. Mine started in my hips, last year was a roller coaster, and this year is the “tower of terror”.
I read countless articles saying that RA always starts in the small joints, and still struggle with my RA diagnosis bc of this falsity, even though some days I can barely walk. Because my blood is clean I also doubted my symptoms, after reading so much about RF tests.
Luckily I have a great Rheumatologist who knows that there’s no one pattern to this disease. I often compare my symptoms to my mother’s, and they are never the same.
Being on the tower or terror, I wonder everyday when it will stop, or slow, or lessen like it did last year. Is there something wrong with me that Simponi doesn’t work? That I take so much MTX that I inject it once a week now? Where do I go from here? I take Rx pain meds, but they work less and less as you take them.
I want to have kids, I want to work without pain (I’m a doctor). I am open with my friends about RA, but unless I bring it up they don’t ask. I think we mask the pain we are feeling in order to cope and live our lives, so people then see that and think we must be feeling good that day. There is no feeling good.
It would be easier if we all fit into a neat little diagnosis box, commiseration would certainly be simpler. Perhaps we can rejoice for one another in the places where we get a little break (and we ALL do, just look for it). For instance, right now some of my joints are ok, for my mom, the Humira, MTX, and aspirin gives her respite some days. What is yours?
Thanks so much for your comment Minnie. You have valuable insight with all of those experiences & those countless articles you’ve read.
If you’d like to email me, I’d love to talk with you more about being a doctor with RA. I’ve heard from a few of them, but it’s a rare thing that they comment.
You’re sure right. That neat little box does not exist for RA. In a talk I’m giving next month, I call it the “golf hole.”
Hit it right on the nose.
I’m thinking too that all the different places we are in also has to do with the different drug “cocktail’s” we are on, and what part of the “cocktails” are working. I’m seronegative, but my rheumy is still perplexed at how unremitting my symptoms can be. It scares me to death. I gotta work, I have smaller kids, my husband is sick of me talking about it. I can only do as much as I can and try to plan for a future of, “what?” with this crazy cycle of disease. I know I always have pain unless, I manage it with the different meds I have been given. That right now I’m 60 mg. of prednisone while waiting somehow for Orencia to work, so that I can work. That getting up from the toilet, my ankles want to buckle. My stiffness is at any time because I work shift work and never know when I can sleep, let alone, know when I can get stiff. I just keep trying. I just keep trying to manipulate my life and disease to keep moving for as long as I can. This is a hard and scary disease, with far too little answers. Thank god for the net or I would be spinning in Cherry joint juice universe and made to feel bad for my “fake” out fibro disease (which isn’t real either???). Many take away lessons from all this. Lots to figure out, and in the end, I have my silly body chewing on my supplimental synovium – ridiculus (and freaking scary). Keeping you all in my thoughts!
This is fantastic. It explains so much. I was a Tower of Terror at first. Constant pain, no sleep, could barely dress myself and brush my hair. Treatment has helped a great deal – methotrexate, plaquenil, and prednisone. After 7 years I’m at avalanche. Plugging along pretty well some/most of the time with terroristic attacks of misery. Imagine being glad to be an Avalanche…
Oh, boy, where to start? I guess I’ve experienced all of those patterns somewhere in my 55-year journey with RA. And I never even knew any other people with it until very few years ago. I have learned so much from this blog–thank you, Kelly and bless you.I have gone from times when I couldn’t write my name, or hold a coffee cup, or lift or diaper my babies, or pull up the covers in bed, or get up from a couch, and nearly scream when my shoulders cramped in the night……..to blessed periods of time when I could square dance, shovel snow, etc., etc.! One of my good rheumies used to say “Lyn, you’re NOT going to try to figure out WHY, are you?” I can’t see any pattern in my own disease process, so how can there be any consensus among us? Even so, it’s so wonderful to have each other, and to know that we understand each other even with all our different patterns.
What a treasure your wisdom from experience is to the rest of us. I am now *hoping* to one day shovel snow! actually, it’s sledding I miss more! 🙂
Mine emerges as soon as the drugs wear off so guess it is always there. Strange animal it is. Look normal, meds seem to work most of the time. Weather, food, etc… can effect. Had damage in first three months, took too long for doctors to listen to me, to really care, then to get appointments to specialists. Right foot has problems now as a result. Could write a book on this all here.
Have been on injectable methotrexate & biological modifiers for 13 years now. Enbrel, Humira. Am proof the modifiers work. Gosh too expensive though, …. someone is making a profit here & creating jobs in bio-technology. People don’t believe I have R.A. in most of my joints, it’s always there. I have to tell them. Without these drugs I would not be walking or moving much at all by now.
http://www.yurisnight.net. Am off to organizing space activities. A metaphysical Minister heading to Space. Yep, modifiers work. You have to work hard yourself too to stay on top of it all.
Mine is always there, but sometimes is really bad, and others manageable. I work at a camp where no one knows I have RA. I sometimes have to take narcotics or I am completely useless, but no one knows. Still there, I am not the girl with RA, and I love having a place where no one knows, and I can pretend I’m normal. I am used to people telling me to “walk it off” or “suck it up”. When it comes down to it, I may be a great actress, (I really don’t like telling people, so I usually suffer in silence) but I can’t walk it off. I wish I could. Every time someone close to me tells me to get over it, it hurts, and makes me that much more prone to hiding it, partly out of shame. I know I have no reason to be ashamed, but I keep getting, “oh I have arthritis in my knees and I get around”. I have arthritis in every joint, and sometimes it hurts so bad I cry in front of my 6 year old daughter, and again feel ashamed. I should be a better,stronger mother for her. But I can’t, and she understands, but is terrified she will get it too…and more feeling ashamed. I stick myself in the leg, and take meds that make me sick and still cry and feel ashamed, for something that is out of my control and not my fault. I understand that in theory, but in practice… I am scared I will be so disabled by the time my daughter is a teenager I will be useless. I am scared she will get it. I am scared I will not be able to hide it one day. I am scared all the time.
My brother was told he had RA a year ago his RA Factor was 304. I was told I had RA a month ago my RA factor was 324. We both have it every where my hands my feet my wrist my back my shoulders my feet and my neck. They have me on presidone and hydrocodone. Waiting to see the RA specialist. I had previously crused 3 vertabra in my lower back, also had explosives go off in my hands I have been dealing with pain most of my life but this RA sucks. MY everything hurts.