Information & encouragement to fight RA
In 1967, Methotrexate had not yet been approved for RA treatment! I think the authors of this article were smoking somthing! Did they think that disability and disfigurement were treatable with Steriods?!
I am one of those early treatment success stories but that was with two DMARDs!
And the comment about personality types–idiots.
Yea, nothing gets past you, Jamilla. I’ll get on that one in a couple of days…
WTF…I was diagnosed in 1973..can’t believe you found this. I still get no answers from my parents about how I was diagnosed…they “don’t remember” even though they’re healthy in their 60’s. Would have at least liked to know about great org’s like Arthritis Foundation. Making up for lost time now. Denial is rampant in my family. I cannot count on any of them for support. I am happy with my new family of friends and my husband for the understanding I need so badly.
Wondering whether the rampant denial you mention & the huge PR problem for RA has anything to do with these type articles which are still what we read everywhere.
Early diagnosis eh? A drain? Crippled? Deformed? WHAT?? It took me two years to “convince” my family doctor that I suspected RA, the symptoms were real and it wasn’t all in my head! Once the Rheumy sent him a letter saying it was more than the severe OA and was indeed RA as well, my family doctor’s comment was, “Oh well, at least I was half right.”
A drain on society..crippled and deformed..what era are we in again??
Catherine, it explains in the last section that it was 43 years ago – still no excuse for the way we are viewed. Unforutunately, it does sound just like it was written today. That is the reason that I posted it. Incredible, huh?
I went to the doctors declaring my pain for years, and due to the size of my body i was declared fat and complaining.. Surely if i lost weight my body would be happier, yes i get this. but no one ever went further.. Explaining my shoulder pain and clicking as tendonitis, my hands as carpule tunnel, my knees as some fat problem, my ankles as a fat problem, even my toes as a fat problem. My back also a fat problem and my large breastssevere sciatica, also fatness..It was always washed away as me being too fat.. Im here to say that the dmards do not work for me yet. ive been on them a year plus..im confined to my house often my bed. ive noted my worsening hands shaping and swelling my fingers are deciding to turn places i dont think they need to… but had i been Dx’ed properly and not just being heavy they might have been able to change my outcome a bit..
Am i bitter?? HECK YES IAM!!! I knew it was wrong to the point i would try and try and go to diff docs all the time to get results and the outcome was always the same.. a simple blood test could have prevented. a what 35 dollar blood test. I think if any pain like ive wrote about be totaly checked by a doctor even if the patient is fat to rule out should be done.. early then sure it would probly catch alot of issues up front..
just my view here
Dear Shannon, :heart:
It may not have been your weight entirely – it could be that you are a woman – or it could be the “invisibility” of RA – or the ignorance of the medical profession about this disease… Would you believe that I (and many others) had very similar experiences over a period of almost 3 decades as a thin woman? I still shake my head over the number of times I’ve been told that this pain / weakness is nothing or in my mind. It is outrageous that a dr will blame a patient because he/she does not have an answer. But it must be human nature because it’s very common.
I’m not sure whether that makes you feel any better. Do you have a dr you can trust now? I wish it were not so hard.
So, if I understand this correctly, the Sarasota Journal is blaming us, in part, for the bad economy?
If I would have even remotely thought that I had RA earlier, I would have found a rheumatologist. I was going to my family doctor and he didn’t think it was RA. And besides,correct me if I’m wrong, most rheumatologists won’t take a new patient without a referral from a GP.
Terry, not sure if I fooled you or not. Did you see at the end of the post it says it was 43 years ago? They are still saying the same?? What exactly has changed? I was so bewildered last night w/ this, I just put my head down & gave up. Had to finish it in the a.m. 😯
I was confused when I read the excerpt, because it reads like this was a recently published article, but when I clicked on the PDF, the year is 1967. It explains the non-PC language I guess, but it is depressing that so little has changed in 40 years.
Sorry to confuse you, May. I did explain that it was 43 years old at the end of my post. That’s what made it so bewildering to me.
Early Aggressive treatment? I went to the Doctor from the first day that my entire body was inflammed and unable to move……was told it was “possibly” a reaction to the flu shot. Which I had a month earlier!!?? Sent to one spealist after another…..over a year later and much crippling agonizing later was told, you have all the symptoms of classic Sudden Onset Rheumatoid Arthritis! A year and a half of early aggressive treatment missed! Maybe we all should print this article out and hand deliver it to our Rheumatologist on our next appointment.
“With methods in use right now, early treatment of arthritis can prevent crippling and deformity in most cases…” HUH?? What “methods” were in use in 1967 for crying out loud? Aspirin? I am at a loss for words (which is rare for me)…LOL Yeah, I’m “bewildered”…. what on earth were they thinking? I was told that the new biologics just “slow down” the deformity, NOT stop it. Am I wrong about this?? And nothing could slow it down or stop it back in 1967, could it?? It’s crazy to hear what the “experts” were saying back then… wow. No wonder we have such a battle to be understood…there was/is so much incorrect information out there being reported by those who are supposed to be our advocates…such as the Surgeon General in 1967, and, I believe, some doctors today, who aren’t REALLY listening to their patients. Amazing article. Where do you find this stuff, Kelly? LOL
Diane, I was smiling & saying yes out loud this a.m. when I saw your comments. Those were my exact thoughts. Thank you.
Ha! What a way to wake me up Kelly! My hair was exploding in flames until I saw the publication date at the end. Just think of what a huge $$ drain we are now with biologics etc.
The more things change the more they remain the same.
Wow. Just wow. That’s amazing. I wonder how many people with RA who received “early aggressive treatment” in 1967 are doing super good now? LOL.
I read the stories on here and in your comment section and I am just so thankful that my doctor listened to me and that I got a diagnosis fairly quickly. Maybe it’s because my dad has RA that set in in his late twenties, just like mine did. I don’t know.
I guess I’ll get back to being a drain on society now . . .
I was very fortunate that I caught mine early and my rheumatlogist treated it aggressivly. She is a firm believer in aggressive treatment.
The actual newspaper article is hilarious in a sad, twisted way….I just am not even sure to what therapy they’re even referring to- steroids and aspirin I guess. But I thought by 1967, doctors were well aware of the limitations of long-term steroid therapy.
Yep. Gold? 😛
Erin: LOL at going back to being a drain on society!
Society can kiss my butt, I worked for 30 years for the benefits I get. It was just long enough to provide benefits that don’t begin to cover the needs, because I made about 5% over the limit for most programs. How programs can be based solely on monthly earnings and ignore the need for help with ADLs is beyond me. Find me someone who works for $3.00 per hour and maybe it’s workable.
Ok, sorry, rant off.
Great find, Kelly!
I followed the link and red the original Sarasota Journal article. [Note: I intentionally just spelled that word “red” instead of “read” because I am SEEING RED!!!] I realize this article was published in 1967, so I read it twice. The first time, in the context of 1967. That had me seeing red because of the gross errors, baseless presumptions, false conclusions, prejudicial statements, and even blaming patients for the severity of their illness/disability.
The second time I read the article as if it were written today, which I find even more disturbing, because:
I challenge anyone to find a single statement in this article that is not repeated throughout mainline medical literature and pharmaceutical claims today (either verbatim or conceptually the same, adjusted to today’s “politically correct” language). That is very, very sad, and very, very disturbing.
Some quotes from the article that have me seeing red:
“Most people with rheumatoid arthritis don’t have to be crippled or deformed.” [Great news! Let’s all just decide to not be or become “crippled” or “deformed”! Hey, we don’t have to be!! Or maybe it’s our own fault that we wound up with physical damage from RA because we didn’t take advantage of early treatment.]
After all, according to the article, “the greatest tragedy: chances are that they need not have been crippled AT ALL.” And, IF we get “proper care”, we can remain “useful human beings”. [I am SO glad to learn that!]
People with rheumatoid arthritis are described as “completely dependent on others”, a “drain on the American economy” with “a definite personality pattern”, “a ‘controlled’ personality” who “don’t permit themselves to show anger”, characterized by “dependency and passivity” and “not seeming to care”.
Okay, that’s what has me seeing red. Oh wait, I need to delete this post, since I “don’t permit (myself) to show anger”!!
Now a couple of questions:
Why are we wasting money on new biologics and experimental treatments, not to mention the serious potential side effects, when they had methods in 1967 that could “prevent crippling and deformity in MOST cases”? – or – Will someone else be asking that same question forty years from now about the claims pharmaceutical companies want us to believe today?
My initial response to this article was, “Unbelievable.” But the sad truth is, just like in 1967, a huge portion of today’s medical community and the general public DO believe these things.
Thank you, RA Warrior, for being a voice of truth in the midst of our battle!
Sadly as a “Drain on society” I had difficult time reading this article b/c I still need 1 more surgery on my left eye. I’ve ONLY had 3 so far,1on right, 2 on left, all b/c of my old rheumy’s “AGGRESSIVE” use of prednisone as my cure for RA,100mg. a day for 2yrs. He does not believe in being aggressive and every patient I’ve seen in his office looked like a train wreck! I do have a new Rheumy who is disgusted with my lack of treatment said something about this not being the ’60s! :rotfl:
Hi Alice. Sorry you found one of those guys that is still old school. Did the new guy really say that? Wow.
Glad you can try to laugh about all this. What else can you do, I guess? 😛
Alice: OMG, I am so sorry about your eyes. I’ve seen others comment that they’ve been treated with ridiculously high doses of steroids and I cannot believe it. It’s like the stone age of medicine.
Have you been checked for osteoporosis? If not I’d like to suggest that you make it a priority. Steroids are notorious for leaching out calcium. 8 years of low dose steroids and celiac disease has me at the point where I’ve broken 11 ribs in the last 2 years, most of them from coughing.
At your dose I would have been locked up with steroid psychosis.
Good luck to you. You’re very brave about the eye surgery thing.
I think we have a long road ahead of us. But, I will never ever give up my hopes and dreams of a more informed and in some instances, kinder society. I want the truth to be heard. I pray that someday there will be a better understanding of this disease. We need more of YOU out there kelly. I am willing to do whatever I can to help!
One day at a time is my mantra right now, Char. We will make a difference eventually because we are right.
Like I told one person recently who would not accept what I cannot do, “I cannot change this reality because you want me to. I can’t even change it as I want to.” They will have to eventually accept it. :-))
What a FABULOUS retort! Do you mind if I borrow it?
I’d be honored to be quoted as what I said.
Thinking your name sounds very Irish this month Patty.
Kelly-Yes! He did say that with nurses and myself LOL without a care! :rose:
Nanc-I have been checked and do have osteoporosis despite my taking HUGE amounts of calcium attempting to prevent the disease. I have so many things wrong with me that one more is just that one more! :rain: I sure hope thigs get better for you! I’ll be praying for you :heart: God’s Blessings!
Oh Alice, I’m so with you on the “one more thing”. I’ve moved past the being surprised at new things too. For some of us RA just seems to be the jump off point into the medical unknown.
I’m still working on getting my sense of humor about it back, it was my lifesaver.
I’ll be sending positive thoughts today. As soon as I get enough coffee in me to wake up :-))
Nanc-It doesn’t help to be anything but positive! :musicnote: I found that if I let myself get stressed and depressed, and I do at times who can stop the blues in our situations :rain:, I am in more pain b/c I’m keeping positivity out. I went to pre-register for my neck surgery yesterday,my ex took me he’s such a great help,and as the nurse was copying my list of “drugs” she just kept looking up at me until I finally LOL and told her that all train wrecks become there own pharmacy in time and she LOL with me! Laughter is so good for all of us I’m feeling ill from being off so many meds before my surgery but I just keep finding more to laugh about. Maybe I need to cut back on the :coffee: God’s Blessings!
I’ve recently been diagnoses with RA and this post terrifies me. I’ve pinned my hopes on what I’ve read about RA — that prompt, aggressive treatment with a DMARC would mitigate joint damage. Am I deluding myself?
Donna – I won’t attempt to answer for Kelly. However, in my case my problems are 39 years old. As I said in another post, don’t be scared, it may never be your path to walk.
Be informed, but don’t let an old RA’er like me scare you, my case is somewhat out of the norm. Dmards just came way to late for me. Mainly I take them to try and save my knees. Wierdly, they were not much affected after the first 8 years, with little lasting damage. I know just how lucky I am for that. Tho my feet and ankles kinda made up for it.
There are 4 siblings in my family, 3 RA and 1 psoriatic. The most recently diagnosed sister (age 62) is doing great with just methotrexate.
The next post (today’s) might help with that a little. There are no guarantees and it’s only been a decade with Biologics, but studies are showing slower damage & disease progression when used early with methotrexate. Not a cure & not 100% effective or on every patient, but as it shows in today’s post, it’s better than a placebo by about double. (21 v. 44)
Nanc is probably right – her poor response and mine may be due to long waits before treatment. Please do not give up – I’m not.
Once again the idiocy that comes out simply because they have no answer. I am back to the feeling of wishing we could ‘give this ugly illness to these people for just a couple of days’. Maybe THEN they would understand that we REALLY do NOT want to this.
I am so very sorry to have put such a drain on the economy. I really need an attitude adjustment I guess. (Sarcasm font in BOLD)
I can’t even print the words that come out of my mouth when I read this and then to find how long ago it was written but then to realize the attitude has NOT CHANGED.
I have had a really really really bad week and my sense of humor is not up to par, so I will just close my comments now……………….
thanks as always Kelly = I pray that one day SOMEONE SOMEWHERE will not only take us seriously, but will find SOMETHING to help us.
Hi Kelly 😀 This is a test I’m not sure how to do this?
Well it worked. 😎 You can say whatever you want to now. :rotfl:
Nanc, I hope you are being followed by a pulmonologist for Lung Problems possibly related to the medications and/or to Chron’s and RA itself?
Early aggresive treatment…wtf…My pcp sent me to a hand surgeon for what he believed to be two identical gallion cysts on the back of both my wrists in 2005. That surgeon said he thought I had RA, back to my pcp who gave me a referral to a rheumatologist. This man shot steroids into my wrists and the swellings disappeared. 5 years of treatment with nsaids and his belief that it was osteoarthritis, even though multiple bouts with bilateral swelling in hands and feet, and neck. Referrals to hand surgeon for carpal tunnel release. Then about 7 months ago now, he wanted to rethink his diagnosis and maybe it was RA…This was the most passive man I ever met…if he had been aggressive, I don’t think I would be where I am today…a artist with almost zero strength, crippled and swollen hands. I wish I had found this site years ago, maybe I wouldn’t have been so passive and would have addressed this “rheumy” and I would have chucked him to the curb a lot earlier than I did. Thanks Kelly for helping us to make sense of what has been done to us.
Dear Darla, that makes me mad to hear it. I wish we could get that truth on TV right at this moment. I will not give up until we do. & Thanks for the support you give others here too.
Since being diagnosed in November, I now have pulmonary fibrosis in both lungs per my pulmonologist and he believes I’ve had it for years. I had to quit my job of 16 years and am on oxygen 24/7. I’m only on Prednisone 20 mg. Doctor wants to put me on Enbrel. My question is does it really work and are the side effects worth it? I took methotrexate for 4 months and then was taken off because of the lung problems. Now the new pulmonologist and rheumy don’t think so. Who knows… I just want the pain and not being able to breathe to go away.
Sharon, that sounds very hard. I’m sorry you have all that at once.
Sharon, I’m sorry to hear about your situation. Pulmmonary fibrosis associated with RA can progress even when the RA is quiet. The medical thinking for pulmonary fibrosis in those cases is to treat the fibrosis by treating the RA. So it means trying the other RA drugs. Arava, Enbrel, Remicade etc. In some cases they might try cyclosporine or cyclophosamide – which have had some success in individual cases of autoimmune-related pulmonary fibrosis. Almost always prednisone is used also unless there are other contraindications. Almost all of the drugs used for RA have been known in RARE cases to actually cause new lung disease or exacerbate existing fibrosis, but most have also been used to successfully treat pulmonary fibrosis related to RA. There is no good way at this time to predict those rare cases really. You need to have rheumies and pulmonologists familiar with this rare entity or willing to do their homework and work really closely with you. Please visit the Huff-n-Puff forum where you can meet others who are in your shoes.
Useful human beings??!!!! Kelly, I know you posted this a while ago but wow, as I just read it it sure made me mad. What constitutes a useful human being??? Do doctors still feel this way? I know all must not — can’t generalize doctors either. But even if a few feel this way they should resign. My almost 12 year old son has taught me about usefulness in humans. He cannot walk or talk or really do anything on his own. Developmentally he is maybe 3 or 4 months old. To people who don’t know him his life might look useless. BUT, his little life continues to touch so many people, me most of all. God can speak through him in ways He cannot speak through anyone us.
I must say with comments about cripples and drains and especially ‘useful human beings’ I wS much relieved to see it wasn’t a recent publication! I would think there are now far fewer people in the really bad state that most RA patients found themselves in back then. Unfortunately ‘far fewer’ is still a significant number of people!
Early treatment is the problem here in Australia. I dont know what its like in the US but it can take 3 to 6 months(have read the UK can take even longer)just to get the initial first consultation with an RA specialist. Ive been luckily diagnosed early by my doctor but each passing week waiting to see the specialist and another joint is added to my list of pain points. I bet if I said I had cancer I would be in a hospital seeing a specialist within 48hours. This disease is not being taken serious enough by the medical proffession.
I agree. You can read on this site patients frequently saying they wait months.
Took the docs 20 years to get to an RA diagnosis. 20 YEARS I’ve had symptoms. Had 4 vertebrae replaced in my neck. Kept being told OA, DDD and Fibromyalgia. Until the nodules appeared……
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