Bringing information & encouragement to fight RA
I think you hit it on the head when you mention that a success story sells, which is obtuse when you think about the nightly news and all its bad news stories.
Part of me wonders also how much the public ear turns off to stories where there are few answers.
I see this certainly in people who know me and ask about my disease, but gradually tune out as the story is told and they realise that a) their usual impulse to ‘solve the problem’ won’t work because this disease invades every aspect of life, b) they don’t know how to help and c) call me up to eagerly tell me about some newfangled or obscure wonder cure without understanding just how hurtful that can be.
Talking about RA to some people is a bit like banging on a drum but making no noise: it doesn’t penetrate.
As much as it angers me to not be heard, I do think it comes down to hope. Many people see degenerative disease as being without hope. The good news stories encourage hope that RA can get better, the hope that it can go into remission. The downside of pegging everything on hope is that reality for people with RA is that much harder to bear when everyone around them keeps telling them that “…other people get better, so maybe you will too.”
so well said, Betty. Thank you.
Alot of this problem, in my humble opinion, is that there is no truth in advertising or accountability for truth in advertising. And to me that about sums it up. We see it everywhere and not just in the proliferation of prescription ads that I have no doubt are based on questionable research results but look at our recent bout of political ads. Do I need to say more? It is just a sad result of where our values as a society have gone. Can we sue for truth in advertising? Probably yes but who has the money to fight these large backed corporations or political parties? Advertising is what we see on a day to day basis and thus…what so many people view as the truth. So we with ra are compared to the rosey ra actor on the ads, the “strong” ra patient playing golf, etc. etc. There is one ad where an ra patient has disfigured hands and she is talking to an audience about a prescription (the med fails my brain right now). She is more a real ra patient but I still feel betrayed by that ad and I am not sure why.
that is Martha. She is speaking for Orencia (BMS). That ad does seem to bug people even though she has “deformed” hands. I don’t like what she says because it seems to me she is putting some of the blame on me for the fact that I can’t get better. The whole thing is so contrived & I don’t like being talked down to. Maybe that’s what you sensed?
Well said! Yup, I don’t like being talked “down to” at all. And like you (just 12 years instead of five), the meds haven’t done much for me at all. Wish they could. Wish they were that magic bullet but they haven’t been. And I get down right angry when commercials, magazines and even spokes people make it like if we take this pill, do this shot, etc. it will magically fix it all. Not! This is a life time journey for each of us and each will travel a different path. We may cross paths at some point but we still travel our own journey.
Murph, I always love reading your posts! I have tried every recommended treatment and nothing helps and have been dealing with this disease since my early 20’s and I’m now 37 and it is frustrating to see what the advertisers put out just to sell a product and give those of us who have had no luck with all the others the hope that it may be the magic bullet but also misleading the public about what RA really is. I’m with you that even the ads that include people with deformities bother me. 30 second ads that are intended to sell products cannot fully portray our daily battle! I’m glad that I found this blog and can have an outlet to read and post with people who understand because they’re in the battle as well! So, thanks!
MY HEART hurts. Iam of the 20 percent of people who meds do not work for. Not RA meds Not pain meds. seeing those comercials with an elderly lady doing gardening or bowling with SEVERE RA makes me puke. I seriously doubt anyone one of them knws what severe RA is all about. and they are in charge of portrying it ONLINE or ON TV! in such a way that makes us all look like a bunch of sissys. Breaks my heart
It’s actually at least 34% of us who treatment doesn’t work for – and that is much worse if you “happen” to be in the 20% who have unrelenting RA. Not to make you more sad Shannon – but I’m right there with you. We need to speak up & be represented so that there will even be an EFFORT to help find a treatment for those of us who are stuck. So, thanks for speaking up! For the sake of our kids too – I know one of yours is already affected & my sadness is for the many others who will be before we find an answer.
Shannon and Kelly, I am in the 34% of patients in which treatment hasn’t worked as well as the 20% of those that RA is unrelenting, 24/7 and I am so grateful to have found this blog because it helps to relate to those who deal with this disease everyday all day. It helps me not to feel so alone and blame myself for doing something wrong or having not tried aggressively enough.
This is actually an optimistic post as bad as it sound bad at first.
I too have been suffering from unrelenting RA, I really am surprised I made it through this last winter (weather very much affects me, as well as stress). For the past 6 weeks I’ve been fighting a bad infection (flu & sinus) and willed myself to have an enjoyable Mother’s Day. Things were moving in a good direction–then another Spring snow storm came in and down I went. The storm is moving out tonight, but the thing that has me hopeful is, I was accepted to receive Humira through the patient assistance program today. I have no income and no insurance, so this is a huge opportunity for me. I guess what I’m saying is that hope is better than nothing, and when you have nothing you grab all you can. I have a calendar where we write a positive message everyday (some days it’s nearly impossible to find something, but it helps to read it now and then). Anyway, I hope everyone finds their strenght in what’s important to them.
I am happy to hear you got the assistance program Sue. Thanks for sharing your good news. What a wonderful wish for us each to find strength in what’s important ♥
I just read your post, a year after the original posting. Just wondering if Humira helped? Hopefully it was the magic bullet you needed!!
rawarrior Kelly – good, honest article.
One of your best posts, Kelly!
I first noticed a discrepancy between how things ” should” be and how things are after first being diagnosed. I read a whole pile of books on RA and they all said the same thing; “you will have a team working with you on your RA, a rheumatologist,a general practitioner, a physical therapist, an orthapedic surgeon, a pain management person”. PFFFFFTTTTT! After 7 years I still have not found a general practitioner that knows anything about RA. I can’t have a physical therapist because my inflammation hasn’t been under control. There is no team. I have a rheumatologist. I laugh at the commercials for biologics, people are bending, squatting,walking, riding bikes, things I can’t do. Why don’t they show someone walking with a cane?
YES!! to all of this.
When I was in the process of being diagnosed with RA, I received some helpful pamphlets from the Arthritis Research Campaign – a British charity. I remember clearly noticing the 20% of people diagnosed with RA who get no relief from treatment, the small percentage who get remission (I can’t remember now what the percentage was), and the middle group who get varying amounts of improvements, have good days and bad days, and have to adapt their lifestyle to some extent. I am in the middle group: Doing most of what needs to be done, and giving up some things that would be fun if I could still do them; living with a usually manageable pain level on methotrexate and hydroxycholoroquine sulphate and not overdoing; planning to move to a house with no stairs; and being thankful I can get out of bed, which I couldn’t do in the aggressive flare that prompted diagnosis. I haven’t lived in the U.S. for a number of years, but I would say that our culture, more than many others, values appearance over substance, and positive image over truth. Thanks for keeping the reality in view.
I am so sick of feeling shame over my R.A. I find myself apologizing on a daily bases to the people around me for the way my R.A “disrupts” their life. When I try to explain R.A to people the response I get most the time and the response I hate the most is, “Oh, I have that”. It makes me want to scream “No you don’t, if you did you wouldn’t be dismissing me like its no big deal.” In the past few months I have been come a hermit and the main reason for it is so I don’t have to explain myself to people and be treated like I am overreacting. How can I educate people on R.A when common knowledge on the disease is so limited and inaccurate? Your blogs give me hope that some day people will truly understand what R.A is, at this point a little hope goes a long way.
We will accomplish this Heidi. Your encouragement goes a long way with me too.
Heidi, I completely relate with your post as I rarely leave my house either, but also with trying to explain and educate others about what this really is, and the truth is that no one will get it unless they live it like we do. Don’t allow yourself to get down because there are those of us here that understand as we are coping everyday as well. How can others not understand how RA “disrupts” OUR lives? wow
Thanks for posting this, Kelly.
When I’m paying attention to what how media portrays RA, I notice that it usually goes one of two ways: either it is a “doomsday” scenario, with Big Pharma as the one and only savior, or it’s a quasi-inspirational “turn that smile upside down and beat RA” message. While I find both of these endlessly irritating, I think that clearly each message has its motive. Plain and simple—Big Pharmaceutical Companies want us to keep throwing our money after the magic bullet only they can provide. Never mind the risks, side effects, or study outcomes, if you take our drugs, you too can play the piano, run on the beach, and garden like our beautiful spokesmodel. Billions of dollars are made on our backs each year, and Big Pharma now has one of the most powerful and influential corporate lobbies in the world. It’s all about image and the big sales pitch—why do you think that all the drug commercials now feature the creepy voiceover that says “ask your doctor about ______”? The second message I hear about RA in the media is the “buck up, little pilgrim” thing. In western culture, we are very uncomfortable with suffering. It makes people squirm. We can’t just sit with it, make friends with it, or accept it. We dare not speak out loud about our pain/suffering for fear of being perceived as rude, whiny, or difficult. And in America, everything has to have a quick, clean cure, preferably available via eBay or drive-thru. I think it’s a human trait to want to alleviate the suffering of others, so it’s only natural that my friends and family want to convey some message of inspiration and hope to me about my RA. I think they mean well but honestly sometimes I’d simply like to know I’m being heard and accepted for where I am NOW—don’t fix me, don’t offer cures to me, don’t try to make me feel better. Just hear me and acknowledge me. That’s all. Sometimes being in pain or suffering with med side effects makes me feel panicky. It’s helpful to have some skills to soothe myself when that happens. There are a great many unknowns in my illness. I want to know it’s okay for me to feel scared, broken, negative, or irritable sometimes. It’s part of my process. That’s why it’s important that we keep speaking our truth. I’m sure there are a few stories of triumph over RA, but I am not one of them so far. And for those of us with a less than ideal prognosis, it’s important that we’re allowed to tell our side of the story too.
Excellent comments Jackie. Thanks.
If one more person tells me they can cure RA I just might scream. Those commercials are really sending a skewed message.
Great post Kelly
Oops I meant if one more person tells me they have already cured RA I will scream. Those commercials make it sound like the biologicals are a cure all. Not so much, they help but a cure err no.
Thanks for sharing your thoughts on this, Kelly. I have also wondered why the media will only talk about celebrities that have RA or arthritis and don’t want to hear about what real people experience. As someone who does marketing I can understand why you want to put your best stories forward but it is a shame that paid advertising is the main education Americans get about these diseases.
Agree. In addition though I have the same gripe with the Rheumies. Very first visit with the Rheumy I’m sent home with the idea that I’m going to get my life back. I am now on my 5th Rheumy and not a single one has been upfront with the real facts that 1)not everyone responds to treatment 2)of those that respond a significant portion are still significantly impaired.
good point, Tanya. my rheum doc told me I’d get better & do all the things I did before. I kept asking about when & why it was taking so long & why I kept getting worse. Five yrs later (and several docs like you) I’m not able to do much and no med has made any difference. This story is not the one that’s told and our experiences make me wonder if the docs know. So many people tell me the same thing that you did.
they ned to portray it the RA really is, not a minor inconvenience
Keep on preaching Kelly! I propose we REAL RA patients do some commercials showing the real RA. Kind of like the truth in smoking commercials. It’s time the public sees the side of RA with which we deal on a daily basis. No more cute models playing volleyball on the beach. How about showing one of us just trying to open a jar of spaghetti sauce.
I agree. I made a couple but that is just the start! http://rawarrior.com/ra-is-not-arthritis-psa-on-rheumatoid-arthritis/ I’d love to hear everyone’s ideas!
I think that part of the problem is the name “Rheumatoid Arthritis”. It makes people think of regular arthritis..take some Tylenol, motrin, aleve, Enbrel,Humira or orencia and you will be cured. The Orencia “oh yes i can” claim irritates me to no end,
The name of the diease needs to be changed. Kelly, I believe you had posted something about this earlier.
I would name it “systemic autoimmune Rheumatoid disease” This name speaks to the fact that more than one bodily system is involved and removes the “arthritis” word that minimizes the severity of the disease. Today, the system bothering me the most are my joints. My knuckles on my left hand feel like they are going to explode. I also have other systems affected by my Rheumatoid disease: My lungs, eyes, I have Sjogren’s. I catch every germ out here due to the side effects of my medications. I am being treated for depression. Thursday and Friday I will be undergoing cardiac testing to find out why my heart is racing and my blood pressure is bouncing up and down like a yo-yo. The stress makes my joints hurt. It’s a vicious cycle. I would be happy if I could maintain my RA status as it is now, but that will not happen. It’s more than Arthritis.It is a life altering disease.
Laurie, very well said! And I like your title of this horrific, life-altering (taking, stealing fill in the blank) disease!
I wonder what could actually be done to force the medical community to rename RA. (Global petition..?) Because a name change seriously needs to happen.
I like the name you came up with Laurie, it paints a more accurate picture. But maybe we should take out the Rheumatoid part, then the acronym would really describe this disease Systemic Autoimmune Disease (SAD).
The thing is, Rheumatologists seem to buy into the whole popular picture of RA, which makes things sooooo much harder. I had a dramatic escalation of pain about 7-8 weeks ago after a brief (2-3 months) lessening of pain levels. I have been consistently told by my Rheum and my GP that I seem to suffer from an inordinate amount of pain that they don’t usually see in RA. I posit that they are either not listening to their patients or that patients are struggling in silence (or going to other doctors to get pain relief). I had a nuclear bone scan a few weeks ago. The report shows degenerative change in my shoulders and in the joints between clavicle/shoulder and clavivcle/sternum. This is despite my Rheum insisting that there has been no inflammation in my shoulders multiple times on examination AND the fact that she initially insisted that severe bursitis in both shoulders wasn’t related to my RA (she later admitted that it likely was related). Other than that degenerative change, the report says there is no other increased uptake in joints. They did not provide the images with the report so I have no way of knowing if this is correct. In light of this and the fact that my Rheum can detect little inflammation on examination she feels my arthritis is inactive. She does believe I am in pain but she has decided that I now have fibromyalgia. I am open to the idea that this is the case but I can’t reconcile the joint pain I am having with a diagnosis of purely FM and no current arthritis activity. My pain pattern is not purely that of the typical FM pattern. I do have pain in the points that are suggested by FM info sites (particularly new elbow pain that I’ve never had before) but there are other areas that I am convinced are active arthritis. I feel trapped and am so worried that more degenerative change is taking place while all this is happening. Fingers crossed that it all turns out to be FM and that as I up the Lyrica my pain levels decrease dramatically!
I can’t express enough how valuable it is to have someone getting this information out into the public domain, it seems we all feel the same about our RA so why don’t the Drs know or accept the reality?
Ali, I posted a reply to you #27, I meant to reply under your post, whoops!
Ali, I replied to your post. Not sure why it didn’t come up here. My post is #34. Have a good day!
That Prevention magazine article on “remission like Debbie’s” was supposed to be a joke…right? It was so NOT real … such a miracle cure to go from so debilitated and damaged that she’d be wheelchair bound quickly, to cured….all by her own willpower & attitude. Very funny.
And I’m not impressed with the Schwab article either. She had a pretty good 6 month remission while she was on NO MEDS and only a placebo … she felt wonderful?? So she obviously had no existing damage and very little pain, swelling, fatigue, etc. so maybe it was all in her head!
They’re both digustingly unreal.
Kelly, your last comment about not being afraid to speak up about what kind of RA we have, really hit home for me. I’m not afraid to speak up…you know that lol. But the problem I have, is that when I do speak about my RA on my FB page, I get comments about “needing to have a positive attitude”. I’ve gotten that message from 3 different people, one of which has had RA since her teen years and is 50 now. Apparently she is in remission now, and attributes a great deal of that to her “positive attitude”. I am getting so sick of that phrase!!! Granted, I AM a half-empty kinda girl, but I don’t sit around saying negative things! One of my friends (a warrior) commented on one of these comments, that “you are a realist. Being a realist does not mean you are negative”. I SO appreciated her POV. I just feel like I am constantly being barraged by people accusing me of being negative. One part of me is saying “um, yes, I live with horrible pain (that you cannot imagine) every minute of every day. I have not made friends with this pain, nor do I consider it a happy thing…so how would YOU NOT BE NEGATIVE???”. idk I’m just frustrated. Thanks for writing this and keep up the good work.
It’s frustrating to hear that kind of comment where you go for support. Ouch.
You should say or not say whatever you need and when it’s right for you. Not feel pressured either direction. RA is evil and it doesn’t need to have a bow tied around it to look pretty. It’s not pretty. Real support can’t come if no one knows how you are hurting. I’m guilty of hiding it too.
The issue might be more about getting the right people around you and listening to them more while letting the negative voices take a back seat in your mind. (That’s right I called the people who want you to hush “negative” – they sure are to you.) We can ignore them as much as possible.
The world doesn’t know because we are so secretive about this pain specifically because we don’t want to appear negative or crazy. That was even true of the Hollywood insider Christine Schwab during the 7 yrs she had RA – she was secretive about it. Every story on a famous person w/ RA has that element. We can’t break this cycle & get backing for a cure if we can’t speak up when and how we feel comfortable.
So true Kelly. That’s what I keep telling myself…”If I don’t speak up, I’m guilty of perpetuating the falsehoods surrounding RA”. Thank you. It is very difficult when the comments come from those I love. *sigh*. Usually I don’t let THEIR negativity (you are absolutely correct about this) affect me, but sometimes…I just get so tired. I guess that’s when I need to push harder. You are the bomb
I have to add that I, too, was told by my rheumy when dx’d that the meds would “turn my life around”. I expressed my concern that my paternal grandmother had been in a wheel chair. I was informed that I would never be in a wheelchair. I’m not, yet, but on days like today, I wish I had one. It takes every ounce of energy I have to get up from my recliner and go refill my water cup, or go to the bathroom. I am exhausted and my limbs feel leaden. I’ve tried enbrel, humira, plaquenil, sulfasalazine, methotrexate…I think that’s all. I am on a daily regimen of 5 mg of prednisone, and pain meds right now. I was put on MTX injections, but another medical problem keeps flaring when the MTX builds up and my immune system is weakened. I don’t know what I’m going to do! I feel helpless, hopeless, and yes, today? I feel negative LOL.
you have plenty to feel negative about today. If you were lying saying it was fun, then I’d think you were nuts.
Thank you first of all, for your amazing website and also, for educating the public about this horrible disease. When you say you have RA, people immediately equate it with Arthritis. Yes, it is a form of Arthritis but, much more then your everyday aches and pains.
Another thing people don’t realize about RA is, it has different degrees of severity~ mild, moderate or severe. I know because I have been diagnosis by Mayo Clinic to have severe RA. Please let them know how painful this disease is and also how it can affect other organs. My husband has seen me suffer and has said, they should not put this in the arthritis family. Because my hands aren’t deformed, people tend to assume that you really are better off then you are. I have had two foot surgeries because of the deformity of my feet caused by RA. My doctor told me my feet look like mice chewed the bones up. My small toe was completely shattered. Most people with Rheumatoid arthritis, have probably been told a time or two- wow you look to good to be sick. Well, if we all walked around like how we felt most of the time we would look awful. Remission, that is a different story for everyone. I have been in remission but, believe me it doesn’t last that long before it rears it’s ugly head once again. Thank you, Thank you Kelly for getting the message out on this disease! Finally, someone is educating the vast population about the effects of RA.
It makes me very angry when I see all these ads with everything coming up rose’s! I have lived with RA and Lupus what they call Overlap for 13 years and ever day is a struggle. It is fighting the depression everyday not imposing your pain on others. That’s what we live with! The struggle everyday and it does not get better!
Kelly, Bless You! Bless You! Bless You!
Day after day after day, I sit here with a passionate heart as an autoimmune disease advocate-activist feeling as though…”because it’s not just a day; it doesn’t get better. It would help if others understood that there are no good days, physically speaking.”
You see, I fit within that 34% who have very advanced RA and I’m one who is treatment resistant, so it’s not going to get any better, unless…
It’s not going to get any better until our researchers discover new and improved treatments that work for those of us who are treatment resistant and who haven’t responded to any treatment availalbe, to date. The pain that I live with 24/7/365 and that I would imagine all who are treatment resistant and have reached such an advanced level of RA that has caused damage to all or most of our major and minor joints, including our spines, leaves me wondering whether researchers will find a treatment that will work for me or whether it won’t come until it’s too late and I am completely bedridden or I’ve contracted an associated disease that may very well take my life?
Some may read this and say, he’s feeling sorry for himself. Well, you’re wrong if you decide that this is what my words are all about. They are not. This isn’t some drama/trauma story of someone sitting around feeling sorry for himself. This is my life. This is what I live with every day. And yet, I get up every morning, grab hold of my walker and fight to stand on my own two feet to begin my day as an autoimmune disease advocate-activist. I work anywhere from 8 to 12 hours per day. Why? First and foremost because I love what I do and secondly, God has led me to this ministry for the past decade, plus. And, thridly, because it helps to distract me from the intractable pain that is relentless day in and day out.
You see, if takes me 2-3 times longer to get up, then get cleaned up, dressed and ready to even begin to start my day’s work than when I was healthy. The pain is so great, especially, in the mornings that it takes 3-4 hours of my day to even begin my day’s work. I live with intractable pain as thus far, no pain combo has worked for me. I either become so drugged that I can’t take care of myself and I live alone, so that isn’t acceptable, plus I can’t think clear enough to advocate for these devastating, debilitation and yes, sometimes life-threatening and life-taking diseases. Or, the pain meds, simply, don’t work. I feel no pain relief, whatsoever. So, each day I live with extreme to excruciating pain while I fight determined to not only survive but thrive in life, because for us, surviving isn’t enough. We are all thriver’s, yet we need treatments that are going to give us the opporunity to allow us to remain active and productive.
I share this with you because I am one voice of many thousands that fits within that 34 percentile of people with RA who have never known a remission or even a partial remission. And, on top of the RA that is taking control of my entire body, I am also diagnosed with Systemic Lupus w/ MS features, CNS Lupus, Discoid Lupus and Sjogrens.
These diseases have taken a lot from my life. It’s been one loss after another after another, yet I have to say that I’ve also been blessed, bountifully, in oh so many ways that I wouldn’t otherwise have known, without these horrible diseases.
Kelly, thanks for not forgetting about us… that (minimally) 34% of people that don’t respond to treatment. Yet, we will never-ever give up. Hope is everywhere, my friends as researchers around the world are working diligently, as long as they have the funding to do so, on our behalf to find the answers that we so badly need and deserve. So, please… I ask you, never-ever give up. We are One United Voice and we may lose a battle, here and there, but we will win the war!
Thank you so much for allowing me this opportunity to share with you and Kelly, God Bless You!
**Side note– tomorrow, I go for my 2nd Rituxin treatment. Let us pray that a miracle occurs and I’m blessed with a positive response. This is my last option that is, currently, available to me and I cannot afford any more damage to my body. Your prayers are welcome.
Onward and Upward!!!**
Anthony, I am curious as to what your bloodwork has shown the doctors to help with diagnosis because I have always been negative rheumatoid factor, but tested positive for lupus and I also fit in the 34% that no treatment works for me. I have noticed on some of the other posts that it seems that most of the people who have negative RF (seronegative?) seem to really be the worst (possibly b/c what we have is such a hybrid of different autoimmune diseases?) sufferers, but from what I have read the seronegative are believed in the medical community to be more mild??!!? I hope that the Rituxan helps send you into remission, I know we never give up the hope even though it gets very frustrating to try with no positive results.
I’m curious about bloodwork too? I was diagnosed with mono and several viral diseases before I ended up in the ER where they tested the RF and it was at 25 (over twice the high end). What does that mean?
Thank God, I thought it was just me feeling this way! I’m SO sick of feeling like this and trying to pretend that it’s not as bad as it is just so everyone else can feel more comfortable around me. I’ve become a complete recluse and except for all of you I have yet to find anyone who remotely “gets it”.
Thank you all for being an honest voice in the dark of this awful disease. We really do need to come out of behind our cloaks of pain and tell it like it is.
Kelly, you’re doing a remarkable job of it! Bravo!
Kelly, Bless you again for helping see my life in real terms & helping me see I am not crazy or alone! I’m so excited to read everything you write daily. You help me find the words to say to my friends & family when I am at a loss. I have written some ideas down so I can remember them to say. I’ve been told to hire a personal trainer, to go to bed earlier, to eat certain foods, to stretch more, swim, diet & loose weight, take vitamins & fish oil, all to get rid of RA. Also been given articles from magazines & newspapers to read to get cured. I am beyond slow & have let everyone know not to call before noon. People think I’m lazy & sometimes laugh. It take a lot to keep my chin up, but I do! Thanks for your help!
I was diagnosed in November (even though I was positive 15 years ago that I had RA). It came and went, so I guess it would come on slightly and then go into remission only to come back with a vengeance in the last 2 years. I was living overseas when it “came” back so wasn’t really sure what was going on because there could have been a lot of other issues (pollution, house, etc)
Last summer when I was supposed to be unpacking or playing with my child, I found myself stuck on the couch unable to move because of the pain. I really didn’t that it was RA, more like Fibromyalgia because my muscles were “burning”. At any rate, my GP ran some tests, found my RA factor very high (more normal for me and quite under some of the numbers I had had) and referred me to a Rheumatologist.
Even though he tried to talk me out of being RA positive, after all the blood work came back he had to agree I have RA even though I don’t have a lot of swelling.
So I am now on Methatrexate and Enbrel. Although I am feeling much better. I am still in pain. Mostly my right wrist which can be so bad I can’t even lift my son. I seriously thought that I was going to be pain free once these drugs were in my system.
I have not consoled myself with the notion that I am much better than I would have been without the meds, but I realize I will probably not ever be pain free. On a positive note, I am much better mentally. I don’t feel like I am walking in a fog anymore and I am excited about getting things accomplished on my to do list. So I can live with a little pain as long as the fog doesn’t come back.
I agree that more people need to realize that the drugs aren’t going to cure you 100 %. And it can be very frustrating reading some of these success stories. I am happy for them that they are pain free, I just wish I was one of them!
Great article and comments. All of it is so true. One of the commercials says ‘Stops the progression of RA’. My greatest fear is that this is good as it is going to get. My pain and deformities at best are here for the rest of my life, and the best I can hope for is that it won’t get worse. Joy, Joy, Joy
Ali, I have been right there with you. You are not alone. First of all, many doctors do seem to buy into to the popular picture set by the pharma companies. They are so quick to diagnose FM if we have pain they can’t see physically or have proof from our blood tests (crp, esr). I went through this with my first rheum doc. My most active joints with RA are my shoulders. They have gotten worse since diagnosis. My right shoulder had very little pain when I was diagnosed, now it is right there along with the left. I have researched and found that swelling/effusion of the shoulder will not show on the outside. So if the doctor does not go by your word, then you are just out of luck! Or you can have an MRI. Did the bone scan show inflammation in your shoulders? I would request copies of your scan to see for yourself. Did you see Kelly’s blog on her bone scans a few months ago? The areas of inflammation were lit up like a Christmas tree. So the bone scan should show the inflammation in your shoulders too.
Back to FM, I knew my pain was not FM, it was the same pain I had from the beginning. It was lessened by methotrexate, but still there. I could not go for a walk through a store. I told him I disagreed with the diagnosis. He was quite angry with me and later I found in my records that he was thinking about firing me as a patient. He went ahead and put me on Enbrel anyway and low and behold my symptoms improved, trashing his FM diagnosis! I could walk a mile, no problem! Unfortunately after 6 months the Enbrel stopped working. I went on to a new rheum doc who is closer to home. He has written a book on FM. I asked him to access me for FM and I was UN-diagnosed! This doc seems to have a different view than a lot of docs. He believes, by his experience, that 50% of patients on mtx and a biologic will NOT have enough remission from RA pain and will need a low dose of prednisone as maintenance. He wants me to be on 5 mg of pred.
I have tried an antidepressant to test the FM theory of CNS pain. It helped my muscle pain in my back that stems from scoliosis, but didn’t help my joint pain at all.
A test that my doctor uses is to try the prednisone. If your pain improves, then you know the pain is from inflammation. If not, it has another source. My pain improved quite well with 10 mg, others it may take a higher dose.
FM is very difficult to diagnose, it takes an astute physician to do this correctly. Unfortunately many doctors do not understand FM as well as they should. It is not something they can diagnose quickly without thorough investigation. If your doc was not thorough, I would question the diagnosis. Maybe your doc is prescribing the the Lyrica to see if it works, then if it does, they saved their precious time from the thorough investigation. If it doesn’t maybe trying the pred test would help.
From a Rosie who knows….RA is not so Rosy! :oP
I need to find that “Miracle” drug that puts me in remission as each day I think I feel a little better my body reminds me that I don’t. I think the medications have halted the damage and my toes remind me otherwise. With summer here and sandals the norm I will be wearing tennis shoes!
Why do they say, “the patient goes into remission when treated properly”? We are most definitely NOT in remission! The RA is being tamed, controlled, maintained. It has NOT gone away. Trust me, if I stop my meds, it will come back with a vengeance! They really need to stop giving the public false hope by using those terms.
I am one of those as well who can’t get it under control the sad thing is it was caught at an early signs. It started in my index finger and I got dianosed at the age of 20. I am currently 25 years old and I am living on disability. My doctor is always amazed when I come back every month and nothing is solved. After reading this and sending the percent of where treatments are failed I don’t feel so bad now. My doctor always make it seem like its only me that hasn’t been helped by treatment. After reading this makes me feel a little bit better even though I know that seems crazy.
So now I am really confused – what is the real rate of remission? 6%? 20? I understand that they are changing the defintion of remission – crazy idea that. I would have thought there would be an easy defination for remission – no disease activity – but it turns out that isn’t what it was and still isn’t what it is! But the newer defination is closer to what we would call no disease activity than the old defintion. So is the 20% using the old defintion – I read it and didn’t think I would call that remission – I might call it reduced disease activity. And where does the 50% come from? How can they make those claims? I am so beginning to think the FDA does not love us. Why is it so hard to get good information?
I like your idea of calling it reduced disease activity. Very few people get “no disease activity’. I could appear normal for my age on a good day if you don’t look at my hands, but I am never without disease activity.
There needs to be a better way of expressing how much these therapies help so that it doesn’t present an unrealistic picture of RA. The language matters. The truth is that RA activity may be reduced not that it will be eliminated.
Leslie, the 50 number comes from a recent effort to try proper therapy – what would be considered OPTIMAL in these ways: early and aggressive to see how well RA can be brought under control. However, as youre realizing the researcher could use various standards for remission. When you look at any study, you want to get at certain details – WhO were the patients? Did the average age or BMI seem practical? What about them was different from you and me? Was the patient group that was chosen one that looks more likely to respond to treatment? How did the control group seem to compare? And what about their therapy was different from yours and mine? THEN, we also have to find out what standards they use to measure success? How did they define remission for example? What I’d want to know is: DO THE PATIENTS AGREE THAT THEY WERE IN REMISSION? I don’t think its the FDA because I thought most of this work was done in the Netherlands. But I have plenty of Beef w/ the FDA about how the patients are chose for the clinical trials too…
You ask a good question. There is no “real” rate of remission. It’s all how you define it. But the new definition is at least more reasonable.
I hope this helps some.
“… Why do commercials show RA that looks pretty mild, but say “moderate to severe RA”? …”
Well it’s hard to depict pain, but I think the bigger question is why even have tv drug commercials at all?
The US and New Zealand are the only countries that allow direct-to-consumer advertising.
It’s reported that some drug companies spend more money on marketing than on research and development.
How can new and better drugs be developed, or prices ever lowered for existing expensive RA drugs (Enbrel was FDA approved in 1998) — if millions of dollars is spent on advertising each year?
It’s not like we can buy biologics over-the-counter – we need a MD to write a prescription and hopefully have health insurance that covers them.
I don’t see much value in tv ads for prescription drugs, not only do they convey an inaccurate image of RA and RA drugs, but are an additional expense that drives up health care costs.
Sara Nash wrote an article “In the Kitchen with Seamus Mullen” over on RACentral.com that gives a more balanced picture of the role of diet and positive thought in fighting RA. Mullen went on a biologic and saw improvement and credits positive thinking for fighting off depression and preparing and eating good food for also feeling good but eventually needed more help to contiue in his career and added prednisone. He struggles with continued symptoms and fatigue. Seems more real than the Prevention article.
Thanks Leslie. There are also several pages here on RA and Diet. They can be found by clicking on the Tags list.
Thanks Kelly, I’ve read most of your pages I think – you’ve got probably one of the most informative and helpful blogs that I’ve seen. Accurate good information and thoughtful insight – open dialogue and no sugar coating. I check in every day to see what’s new and who’s saying what. I look forward to what you have to post next – it’s always worth the read.
I can’t tell you how much I appreciate what you do here for all of us!
Thank you Leslie. Your honest thoughtful insight is also appreciated. thanks for taking time to comment.
Ali, 2 months ago we could have written the identical posts. I was very frustrated. I have as well had my docs down play my pain. Rheumy does not believe in pain management long term except with the use of prednisone and GP does not like to use prednisone and has told me that the RA society has said “RA patients have to learn to live with the pain” My question to him was do “they” have RA. He admitted no. I also have been diagnosed with FM and prescribe Lyrica. I have to admit that it works wonderfully for the FM, however it does not take away the fact that we have RA and joint pain. I am being treated for aggresive/severe RA with MTX,Plaquenil,Humira, and at one point Arava. Do not give up or into the docs, you know your body and I for sure know the difference between my OA,RA, and FM as I am sure you do. I do luckily have the scientific data and test to back me up. I have tears,rotor cuff,tendonitis,and bursitis, in both shoulders. Knees have tears, erosions, littlw cartilage and baker cysts, and thickening of synovial. Wrists have carpal tunnel, tendonitis,bursitis. Rheumy has admitted that RA can cause these problems. Do get all of your tests and reports, as many times my docs have even forgot what I do have and have argued with me even to the point that certain joints are just fine, until I have brought up a MRI taken on a certain date and then they have gone back and read it and then said “oh yah that is bad”. Gosh they have even forgot that they ordered tests altogether. I have asked the question as well if a patient came in with just one of these conditions would you not say that they are painful? All of my docs have answered yes. So I have asked “then tell me with ALL of them why shouldn’t I be having this amount of pain”. They usually stop arguing with me at that point.
I have no idea why the docs like to down play our diseases and conditions and PAIN but they do, even though on the other hand they will admit that RA is painful.
My suggestion is to try the Lyrica and if you do have FM, enjoy the relief of getting rid of at least some of your pain, but stay on task to have your RA treated and stand by your truth and don’t let them underplay your pain. You are not alone or crazy and there is 8500 other warriors who will agree with you. The difference is they have RA and your doc probably doesn’t. I trust the voice of a patient more.
I was also told at last appointment that RA was inactive although both elbows and knees had swelling and one shoulder????? I did see his letter though and he did document it. So although he did argue with me in his office, he admits it in his findings???
They confuse me too! Just stay strong and if you also don’t feel that you are being treated find another doc who will. Thankfully mine does treat my RA aggressively. Get your test and reports and be your own advocate!
This post could not have come at a better time for me. I was diagnosed over a year ago and so far none of the treatments have cured my pain. I am currently on Orencia and my hands in feet are better but my jaw and back not so much. I have been to countless doctors and always feel like I am fighting a losing battle on getting the help I need. I have recently realized then I am just going to have to live with some of this pain and move on. At least I am not alone!!!
I am one of those patients that have not responded well to the meds….I have been diagnosed for about 6 yrs..and have been through the ladder of meds,I have OA,RA,Sjogrens, and now Fibromyalgia.
I have been prescribed, plaquenil, prednisone, methotrexate, celexbrex, hydrocodone, Remicade infusions, Orencia infusions, and now Cymbalta for the Fibro……Restatsis for the dry eyes and biotene products for the dry mouth.
RA, with all its devastating aspects of the disease, leaves one wondering, when will people understand?
It is not a disease that has a cure! So many around us think that if we have a “good day” that we are cured, we are not!
The Drug companies don’t help by portraying RA patients as someone that can leap into wellness after we take their expensive medication, it simply does not happen, if it did we would not be here posting our concerns.
The doctors are another issue, yes they treat our RA, but do they really understand all the facets of RA?….I say NO, they do not understand, they prescribe, and sometimes make us feel that the drug should have worked, as I can see my doctor’s perplexed expression because he may have had “A” patient that responded to a certain med. Well, if I am taking the med and given it some time to work, and it doesn’t because I am still constantly flaring, then what is next?….I am currently on Orencia infusions, still along with the methotrexate, that I have taken from the beginning.
I am still flaring, fatigued, pain, swelling and at this point I don’t want to even tell the doctor, because I already know that Rituxan is next.
I asked my doctor if there was a point in which RA patients are sent to Pain Management Doctors, he let me know that pain management has changed over the years. (I thought it was an holistic approach, so that you don’t take too many meds and try to control the pain)
My doctor explained that most patients are given more meds that keep them medicated, and it is not so much holistic anymore because anesthesiologist are involved. He didn’t completely tell me that I shouldn’t seek pain management, but that I should tread lightly and think it over.
My bottom line is that I think the Drug Companies have tried to advertise that taking there meds will make you spring into action, as if you never had to deal with RA again. So this inaccuracy just adds to the misunderstanding of the disease.
RA, is with me every day and every night, if I am lucky, I might have a few hours of less pain, I have gone through the denial phase, and have now accepted RA, I wish those around us would accept what is a very serious disease with no cure.
I’m one in the third group. I’m on Enbrel and Arava and still have symptoms and pain just about every day. I still take NSAIDs at least every other day. Without the Enbrel my CRP can reach upwards of 35 in less than 4 weeks. My last x-rays showed some improvement in the erosions in my feet (heeling) and my Rheumy said “technically with your CRP under 10 and with evidence that we have stopped the erosion – you are in remission”.
What a bunch of horse pucky… I’m still in pain and I can’t do lots of things… not just from damage but from active inflammation. Just because he can see it on the three days he sees me per year!
I think there is a problem with the “clinical” definition of remission… it does not factor in pain or quality of life. My Rheumy’s definition of remission is not mine by a long shot!
I am resentful of big pharma advertising for RA treatments because they misrepresent with promising pictures and ambiguous & vague language. Creating unrealistic expectations does nothing but set us up to feel like failures. Even referring to a real RA patient who has had phenomenal results is not representative of what most of us can expect. It’s simply not the norm to try a biologic and be able to return to your “old normal” whatever that may be. But that’s the message we keep seeing, and it’s a little insulting in my opinion. I feel like doctors are drinking the drug company Kool-aid, too, Here, take this new treatment and all will be well.” The fact is that there is not enough solid science to explain the variants the spotty results, the good labs/bad symptoms conundrum. Unless/until we see substantial improvements in knowledge and measures of the disease, the only promise we can count on from drug advertisements is that *at least one* patient has had success. Not good enough!
Hi everyone. I am new to this blog and to RA (recently diagnosed with severe RA). I must say that my heart goes out to people who go through this condition. For the people who are not aware what RA is all about, it is probably the most difficult thing to cope with. Not just the commercials are misleading: TV shows too. Last week my dad called me about one which advertised Aloe vera as good for RA. I advised him not to watch TV! Sometimes I feel that they are toying with our condition. I have noticed when doctors talk about RA they seem extremely optimistic. But Of course; they get lots of cash out of it ( I can actually see dollar signs in their eyes). What can I say: most money goes into popular deseases like cancer(which terrifies most people just by bringing it up).Maybe if that was the case with RA we would have had better treatments and drugs. All we are left with is HOPE. Hope is a good breakfast, but a bad supper(Francis Bacon). I am different from other patients: I want the truth, I want to know what I am up against, I want all the facts, so I can make better calculations about my “future”. I am currently on a strong pill cocktail and it is going to take several months until I know if it work on me or not. When this path of hope ends, I will have to begin another…and if I flare again another and another…It’s a viscious cycle I guess. For now, all I know is that I can’t get out of bed without prednisolone.
Giorgia, this is profound, covering several topics. Welcome aboard the blog. I regret that RA found you.
I am one of the many who spent years being shuttled between various specialists by my HMO. (mostly because they -shockingly-did not have a rheumatologist on staff) I was repeatly told I was depressed, referred to mental health or questioned about any marital problems. When they finally got an ‘arthritis doctor”-a very ancient woman whose english was very broken; she asked me to put out my hands, commented that I was not deformed and couldn’t have RA. When I asked, isn’t the point to get treatment early to prevent progressive deformity? She shooed me out and told me I had no idea what I was talking about. Now, years later I have been blessed with 2 different wonderful doctors with generous, understanding staff people. It IS possible, don’t give up the search! Don’t settle for less than the respect and treatment you deserve! Find someone who is willing to answer ALL your questions and talk about all your options. One last humerous thought-these ads on TV for RA meds that show people playing sports, hiking and riding bikes, remind me of an old joke from Jr. high:
A couple of girlfriends wanted to do something fun on a saturday, but neither had enough money for a movie ticket or fair rides. Finally one brightened and said-I know what we can do! Let’s put our money together and buy a box of tampons! Puzzeled, the first girl asks why? Her friend says, Like the commercial, if we get those we can go swimming and hiking and play tennis and…. I think you can get my point. Let’s never lose our sense of humor, somedays its the only thing that’s working right!!!
You wrote, “she asked me to put out my hands, commented that I was not deformed and couldn’t have RA.” I have met several doctors who said that also. Poor training. And poor interpersonal skills.
Thanks for the haha.
Kelly, I think it is all about selling products.Big money for the drug companies. They want it to seem rosy.Yes some people are in remission.But many of us are not.
Hope? Remission? I have had TRAD (This Really Awful Disease) for eleven years and my mom had it also, so when I was finally diagnosed (after a year of doc’s saying it was not RA), I thought I had a good idea of what was coming my way. When I was getting tested for carpal tunnel, the nurse said to me “Oh, I have RA too” as she was energetically running around. I needed help just moving in the correct positions for the test. I asked the nurse how she could work and have so much energy and she told me she was in remission. I was dumbfounded! I didn’t even know RA remission existed and I am still not sure it does. Since being diagnosed, I have had pleurisy,a massive hear attack, a lung abscess(which had to be biopsied), carpal tunnel and trigger finger (in both hands)many crazy skin infections, and the most recent fun was a complicated lobulated baker’s cyst the size of a lemon that burst. In my case, I believe, I have fought RA and RA has won. I have lost the person I used to be (between the pain and the meds) and become the person I never wanted to be. My hope is that others with RA can fight and win! Thank you Kelly for this website. It helps me not feel so alone.
Dear Robin, if we keep fighting, then it has not won. I’m sorry you’ve suffered so much & I agree with you – I cannot IMAGINE remission since I’ve not had one moment without harsh pain the last 5 yrs. I have no idea sometimes what others experience who run around like that & say that if we’ll just try harder or eat better or exercise more, then we can be okay. As if we would CHOOSE to suffer like this? Of course there must be sub-types of RA; it’s the only explanation for this.
The person you are in your soul can still be something RA cannot steal. There may be very dark days, but you will get through them. You are obviously an amazing survivor already!
I wish I knew more about Baker’s cysts since I have them. I didn’t know they could burst!? What in the world? That must have hurt terribly.
Kelly, Thank you for your encouraging words. I guess I do still have some of my soul left in here somewhere. I also know there are so many others who suffer in different degrees and worse than me. I am always reminded of that when I tell my doc what is going on. He always says “There are people a lot worse off than you are.” I don’t know why that doesn’t make me feel any better, but I do know you could not pay me enough to paint a rosy picture of my RA. A (normal) Baker’s cyst is a sac of synovial fluid behind the knee. The synovial fluid that is supposed to be between your knee joint squishes out and causes this cyst. In my case, since I just attribute all my pain to RA, it turned into an extra large sac filled with many other sacs, making it complicated. I had told my doc four months earlier that my one leg was twice the size of the other and the knee was extra painful but he did not address it until my next appointment when I brought my husband because I couldn’t drive. I was sent for all the test that came back positive and he stuck a huge needle in my knee to drain the fluid and then injected cortisone. He realized it had already ruptured after seeing the ultrasound. He said the fluid he extracted was called ANGRY synovial fluid since it could actually burn your skin if you were to drop it out of the syringe onto your skin. Pretty interesting, really. Not all cyst are that bad, and sometimes they take no action on them, but keep a good eye on yours just in case.
As long as my (mostly good) rheumy could pull more tricks from his bag, he discussed my disease with me. Now, the tricks are no longer working. Stomach is burned up from the NSAIDS and oral DMARDS, two biologics have failed and the steroids make me insane. My rheumy doesn’t want to talk about it much now. There is no where to go. The media doesn’t want to talk about us because it is very discouraging to feel this bad and still know tomorrow will be just like today.
Well put about the bag of tricks. Sometimes they seem to give up when we don’t fit the commercial’s image of responding to treatment. I’m hoping it will get better.
My rheumatologist made a comment to me at my last visit that I found interesting–and disturbing. He said that pharmaceutical companies divide med success rates into 3 categories: 20%, 50%, 70%. A medicine is considered successful if a patient shows only 20% improvement! He feels that ALL RA meds should be 70% (I second that.) I got to thinking about this after the appointment. What if this standard was the same for other chronic illnesses–such as cancer? The public outcry would be incredible. And yet, we’re supposed to be content to live with 20% improvement? This is appalling!
There is a post that I’ve been working on to discuss this Debbi. You’re right: the “success” rates are unacceptable.
I believe that the word “arthritis” is the key. Most people think that arthritis is something that everyone has now and then and you take an aspirin or tylenol and you keep going. We know that this is not so, the name of this disease should be changed. I do not know what name would be appropriate, “immune system disorder syndrome, autoimmune disease, or rheumatoid syndrome” sounds vague, but I do not know what else to address this disease with a name.
Thanks Kelly for this Blog Post…I have yet to find relief. I had two month where I thought Humira was the answer and then it stopped working. Next in line is Remicade. I have suffered from the side effects of the drugs and my family sits back in silence waiting for the “magic pill”…and then maybe our nightmare will be over. Well last night I was screaming out in pain…only of course because no one was home. I think most of us bite our lip and bear it sometimes for the sake of family, as I feel they get sick of hearing about my pain. When I look at the healthy looking happy people on those Biologic Ad’s I want to puke…do they exist? I really don’t know…but for the most of us we are still waiting for the magic pill
thanks, Susan. I do hope your nightmare ends. That is awful the Humira worked for such a short time for you. It’s interesting how you say you thought it worked at first – I thought it helped me a little, but I think it was just my optimism – because RA continued to spread then worsen.
Your comment came up as I was replying to someone on today’s post – I’ll be interested in what you think. I see there is a message on my phone that you sent me something on FB, but I haven’t been to FB yet – I’ll read it asap.
I think the ads like Enbrel simplify the effects of RA. I think most people have no idea of the devastation and havoc it causes so when they see the ads they think it is as simple as taking an aspirin for a headache.
There are a few people who do respond that easily to Enbrel, but it’s certainly is a disservice to make the public think that most of us are that lucky.
I watch the commercials and they are so misleading. If you suffer and live with RA everyday you know that they are not true. I’ve had good days but more bad. Most days I pray to God to die. Not only is the pain unbearable, the depression is just as bad. If it was cancer at least there is an end but this there isn’t. I hate me and everything about me. People look at you as a crazy person because you can’t open a door, bend down, open a bottle, tear open a package. If you don’t have a visible sign of a problem they don’t think there is one.
Ive been debating for at least two months about posting this. I’m a 37 year old male and was diagnosed with ra in 2005, I did nothing about it until 2010 “not smart I know”. When the pain and simptoms got to bad to ignore. I went back to rheumatologist and was put on methotrexate and prednisone for three months and kept getting worse I’m a ups driver and my job was becoming impossible to do. Then I started embrel which helped a little but not enough so on to humira also helped a little. Went back and forth with prednisone “helps a lot but causes other problems”. Well heres the part some people will not like I’m not selling anything I’m not trying to preach to anyone. I fully realize that ra has no cure and everyone is different! But I began a vegan diet on march 5th 2012 and I feel better than words could express. A friend gave my the movie forks over knifes “it sat on my desser for six months until I watched it” I love steak and burgers etc. however you couldn’t pay me enough to go back to eating meat or dairy. I honestly felt my life was only going to get worse until it ended to soon, not anymore . Also to be clear I’ve taken no ra meds since march 5th none. That’s my story good luck to all ra sucks.
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