Why say a patient #FAILS treatment when RA treatments fail patients?
RA patients are brave and optimistic, as I’ve said. I’ve never been around such a hopeful, resilient crowd. We continually adjust because the disease is progressive and persistent. And we repeatedly hope for the best because there is always one more treatment or therapy to try.
Rolling with the punches gracefully becomes sport for us. We spare others our constant pain by not mentioning it very often. And that sometimes backfires because people assume we are only in pain when we say so.
Is it the patient’s responsibility to MAKE treatments work?
When we try new treatments, we may feel a responsibility to be confident and we are. Optimistic, that is. As patients, we feel a responsibility to help make treatments work.
Does anyone believe treatments work mainly on the basis of faith? If that’s right, why can’t we save a pile of money and put our belief in some cheap aspirin?
We try our best, but the outcome is not our fault.
Expecting the best
I certainly expected to get better with Humira. And I was sure that doubling the dose to weekly would make a difference. And then… I was fully convinced that Orencia must be a stronger cure for RA – after all, you get it with an IV. At a cancer center.
And again with the Actemra since it was the newest thing, which makes it the best, right? I really did sit on the edge of my seat waiting to jump up so I could hold a tennis racquet or run around the block. Which I did try to do a few times by the way, but that’s a story for another day.
Did I fail?
And more to the point, does everyone with RA fail who does not have a strong response to treatment? Only about 20% of patients get a result that is considered 70 improved. Not normal, just “improved.” Not a majority, just 20%.
Yet the rest of us “fail”?
In the immortal words of my 15 year old, “Dude. Really?”
No, we don’t fail at all.
If RA flares and remits, then we rejoice in the good days. Others continue to hope for a remission even if we’ve never had one. We hope in research. In the FDA. In better access to therapies.
Failures? Hardly. We stick together, break new ground, and create the first non-profit specifically to fight for the needs of Rheumatoid patients.
It’s what we do. It’s how we know that Rheumatoid Disease is something we have, not something that has us. We do not allow an illness to define us, even if it prevents us from running on the beach – for the moment anyway.
Recommended reading
- It All Comes Out in the Wash: Comparing Different Treatments & Approaches
- Are Biosimilars Justice in Competition for Biologics Like Enbrel?
- Perception, Reputation, & Information: How Do We Decide about Dangerous Drugs?
- Aspirin and Rheumatoid Arthritis
Does anyone know where I can find a stem cell research trial program offering treatment for Rheumatoid Arthritis volunteers?
Thanks, Kelly. It is all a little bit easier to deal with RAD knowing there is this support. Today just reading your blog helps to feel like “I can do this. There are people who know what this feels like. They are pushing themselves through every day. I can too.” Thank you and all of the #rheums out there.
Thank you for keeping me sane! Sometimes I feel like I’m the only one (according to my “ex” rheumy) that doesn’t respond well to biologics. Reading your posts helps me keep positive and able to keep fighting the battle.
I do NOT get why we hear that so much. Why do they imply that to patients so often? It is just odd. (And well, dishonest.. but still – STRANGE.)
Yes, Rhonda! Keep postive – you’re not alone! And together we help each other & we’ll see progress too.
Patricia, Northwestern University has a stem cell research project for RA. If you are seropositive ( positive RF) you are able to harvest your own stem cells. If you are seronegative you have to have a sibling match for stem cells. It’s pretty heavy duty treatment, but if I were seropositive I would do it. I don’t want to risk rejection of the stem cells since I can’t use my own.
Thank you, Kelly. I am currently “failing” Enbrel (after an initial positive response) and grieving for the me-that-almost-was. Reading this helped me!
Hi,
I too am currently “failing” Enbrel because after two years it started to mimic the symptoms of Multiple Sclerosis. After the MRI and seeing several neurologist they finally determined that it was not actual MS but what they called Enbrel MS. I have all the symptoms (slurred speech, loss of balance, visual disturbances, burning in my hands and feet and brain fog) but gratefully no lesions in my brain or spinal cord. They have assured me that without the Enbrel the symptoms will “resolve” and I will return to my previous state of health. It has been a frightening experience but I am already starting to feel better after being off Enbrel for 2 months. The next question is which treatment to try next.
Pingback: New Drugs, New Doctor, New Blues | Tanya Martin
Kelly, the titles of each of your blog entries say so much. If doctors just read your titles, perhaps they’d wake up and get the idea that there are RA
issues/problems/treatments that aren’t even discussed, let alone resolved, in med school…..very sad!
Great post Kelly! It is our optimism & hope that keeps us going.
When one of us falls victim to the anxiety, the fear & depression,
We work hard to “boost” the endurance of the other. While we do
have responsibility to work with our meds & Dr’s, we also understand
that our meds are not a cure, but merely a fix of the symptoms
not a fix of the problem.
We are a stronger voice together than we will be individually and
your website is a gathering place of knowledge for all that ails us.
Let’s make our journey strong together & keep planning that
tennis game!
Well said, Heather.
My Report Card:
Methotrexate F
Plaquenil F
Humira F
Enbrel F
Orencia F
Rituxan F
Actemra I two infusions so far no change yet!
Solumedrol I 1000mg pulses now done monthly until????
Prednisone A in high doses non-stop for 5 years.
I did not fail these therapies these therapies failed me. And that is why we need the RPF. It is so we can find a cure for this destructive diseases. I thank God every day for the people here and Kelly for helping me cope with what has been a very trying time in my life. It is through these people that I have made some great friends, hopefully for life. And together we will fight and make differences in each others lives.
Well done, David. Point well made.
This terminology might be my biggest pet peeve of all. As David says above, from where we stand the treatments failed, not the patients. How dare you tell a dying cancer patient that he/she has failed chemotherapy? It’s patronizing, demeaning, demoralizing, and just plain wrong, another way of blaming the victim. When that blame comes from your doctor rather than an unthinking or unkind friend or relative, it is even crueler. Fact is, the medical and pharmaceutical industries have failed to find good reliable treatments for any of the autoimmune diseases. We’re all hoping to see some successes from them soon.
At my last appointment, I was told “you are not an anti-TNF responder.”
I know it’s just doctor-speak, but I have to admit that it did sting a little.
I can’t tell if I’ve passed or failed Enbrele. The doctor seems to think it helps…my husband is afraid for me not to try to stay on it. I struggle daily but I know it could be worse. The medicine (I am disabled & covered by Medicare now) costs a fortune. Sometimes I think a nice trip would be better 🙂 It seems that there are few benchmarks with this disease & that everyone is kind of shooting in the dark. Wish we all knew more 🙂
Hi, Rowena. I agree. We need more help from science. We’ll get there, but it’s hard now. I hear you.
So the reverse of this is also true. After Kim began to respond slightly to some of her dmards and her biologics, her rheumatologist tapered her off of the prednisone. When she successfully tapered off of half the prednisone she had been on, her rheumatologist said to her, “Way to go! Glad to see you get off of some of the prednisone!” He was all excited, and we were happy as well, but it had nothing to do with Kim doing anything to “get off” the prednisone. She just responded enough to her other dozen or so medications to be able to remove that one.
Such a great point, but sticky to talk about.
We also often see media shower enormous praise on patients who respond to treatments – as if anyone can help whether they respond to a medication or not – see todays post https://www.rawarrior.com/side-effects-and-genes-more-evidence-for-listening-to-patients/
These issues are genetic, not based upon attitude.
Exactly! I read your latest post and then commented here as my comment fit better here. Why continue to use terms that make it seem as if the success or failure of a patient’s treatment rests on them? None of us took this disease on voluntarily yet the terminology used to describe the effectiveness or ineffectiveness of treatment make it seems like it’s all about the patient making some sort of choice or decision. We have enough stress to deal with without feeling like our health is contingent on some internal willpower. Both posts are excellent Kelly. Thanks again!
I wish I could make plans for tomorrow and feel confident I would feel good enough to actually follow through. I hate the uncertainty of tomorrow.
Susan – your statement is brillant! Been searching for such words to explain myself to others for years – twenty-seven of them – waiting each morning for the curtain of daily life to rise as I begin to act over the pain. Encore tomorrow.
OOPS – should have said “raise” the curtain so I could “rise” and act over the pain!
You hit the nail on the head…I was wondering if I’d feel better tomorrow to help with wedding craft night. Feel better!
I was sitting on my bed today feeling sorry for myself. I was taken off Enbrel because I had seven respiratory infections since Thanksgiving. Every time I’d get better and start back on Enbrel I’d get sick again.My Dr. is trying to get Orencia to help pay the co-pay so I can try it. I was wondering if I was going to be part of the percentage that will not be able to have a RA med that can help? I’ve gone through so many that either didn’t work, made me sick, or gave me a reaction. I try to always have hope because as the Bible says”hope deferred makes the heart sick”
Oh, Sarah, I understand the frustration in getting help with some of these drugs. I say that I’m going to divorce my husband so I can go on Medicaid to get a biologic ~ just kidding, but it is tempting! I and my rheumy have been trying to get help with a biologic for years with no luck. We make too much for help but not enough to pay the co-pay for my insurance. It makes me angry to know there may be a drug that MIGHT help but is unreachable. That’s my biggest frustration. I’ve not had much luck with the inexpensive oral meds and because RD is my 2nd autoimmune disease there are other issues I must consider with any med. I have learned to live with T1DM for over 50 years and will learn to live with RD too! I wish you luck with your struggles.
I’ve decided to stop all treatments and go into pain management mode. I’m trying to convinvce myself I haven’t given up. Maybe not forever. I just can’t do it anymore. The meds I can afford make me too sick and the ones I can’t afford, I’m scared to death of anyway. I’m sure I’m the one that would end up with lymphoma. I haven’t failed anything. The meds didn’t work for me it’s that simple. SO, I walk like John Wayne, or Red Fox when I get up. I’ll have to find the humor in it all I guess. It’s not funny when your kids don’t want to talk to you because you let them down again about a pomise I made about going out. Great, now i’ve made myself cry. Off to the bathroom to collect myself. Another day in the life of RA.
Don’t ever give up, ever! Pray for your kids that they will understand. It took a little while but mine do, and they are 17 and 13. My Dad is the only one that still doesn’t get it sometimes. God Bless You.
Check out the picture on the front page of this website. Somebody tell me what drugs they are taking! I’d like some cuz they are smiling…..as if RA really isn’t a big deal. Geez!
http://www.rheumatoidarthritis.com/ra/lifeguide/default.htm?c=MIACRAF511P1169&cid=act_we_F009000_P001045&utm_source=Facebook&utm_medium=FB7
My Rhematologist is a classic in this regard – refusing to “give up” and classify me as permanently disabled because he can’t predict what future treatments might work for me as if either has any control over it. My GP and cardiologist had no hesitation in adding RAD to my list of woes.
I have been dxd for about 12 months but with hindsight have been battling “flares” for about 15 years. Gee, I even hate that word – it implies there are times I’m not suffering when it really means there have been times when I can’t stand it and sought help, all the rest of the time I accepted the drs version that it was just me.
To all you women out there, I admire you. As one of those rare blokes with RAD, having to cope with what society expects women to do (kids, family an all that stuff) feeling the way I do every day must add immeasurably to the burden. My wife of nearly 30 years has been my rock these past 8 months since I had to give up work and just lie around for days on end. As for planning more than a few hours ahead, the inability to do that was why I had to give up my business.
Thank you Laura. My kids are 19,15,13,and 10. It’s the youngest and only girl that has a hard time over it. I try to be patient with her but there has been a couple of times I’ve raised my voice to her saying “Do you really think I want to be like this? I can’t help it, I didn’t ask for this”! Then I go into the bathroom and cry. I can’t expect her fo have the kind of empathy this disease requires, she’s only 10, hell most adults don’t either. Anyway, your next post made me laugh. When you find out what the drugs are let me know! xoxox
@Bomber that’a really nice of you to say that about the pressures of being a woman with this disease. I feel the same way for men who are the bread winners of their families. It must be just as awful. Thank goodness for terrific spouses eh? THose vows really do mean it when they said for richer for poorer and sickness and in health. I’m lucky too with a husband who is patient and taking on so much more now that I can’t work. He still loves me. I know it and I can feel it besides all he does for us. We’re lucky in other ways Bomber aren’t we?
Thank you for this article. It is nice to see statistics because sometimes it feels like I am the only one who isn’t getting relief. My pet peeve is the stupid commercials for these drugs. My boss actually stated she doesn’t understand why the medications aren’t working because she sees commercials on TV and it seems if you just take (fill in the drug name here) you will be all better. Thanks again for your advocacy of our struggles.
This post was timely for me today. I have gotten to the point that I don’t discuss my Rheumatoid Disease unless it is necessary since most people seem to judge or confuse it with OA. Recently, I had to tell my hair stylist about my problems with my neck because I would always wince when she would lean me over the sink to wash my hair. I got a text from her suggesting some meds that I should try because she has another client that is “a new woman after two months”. Methotrexate was one of her suggestions. I’ve been on it for several years and recently had to stop it because of abnormal liver enzymes. The other med is an NSAID and not a possibility for me because of my Ulcerative Colitis. For a brief moment, I felt like a failure. I wanted to be like her other client that feels better. My hair stylist is a beautiful soul and was only trying to help. I guess my point is that I make my own self feel like a failure when this or that treatment doesn’t work. I am slowly learning to give myself some slack. The support I receive from this community keeps me going. Keep up the good work, Kelly. You are making a big difference in the lives of many people.
becky,
thank you. very often we are so hard on ourselves for the meds and the others who seem to do so much better on those courses we have already tried. thank you for your heartfelt comment. you made me feel so normal. i have had r/a since i was 16. that kills a teen’s life. one is an adult immediately. i am 50 now. i read something recently in a metaphysical book about the fact that harsh internal thoughts (overly critical nature) is at the core of rheumatism. i had to giggle. i understand the point. tension, etcetera will aggravate r/a. however, babies get it and i am sure they aren’t overly critical. there are so many “statements” by well meaning people hoping to help or redirect. my best to you and again, thank you. thank you everyone here.
Good Morning Becky,
I had to reply to this as a similar situation just happened to me. My husband told me that our hair dresser called to tell me that she had to talk to me about someone that had RA ( I was at work when she called our home to inform him). So I went to the salon to see her thinking for some reason that her client was newly diagnosed and I would be able to offer some type of advice, etc. Wrong….she told me that her client (a female peace officer) had both RA and Lupus and was now “cured” and she had some information to ‘help’ me if I would like it. My heart sunk and I politely told her that she must be in remission because there is no cure as yet. No she insisted this woman was cured and I should call her –if I felt it would be helpful. I did not pursue it and felt heartbroken. I know she was trying to be helpful as were the two people who told me about mixing milk with cod liver oil and the other who suggested I try charismatic faith healing. Sigh….now I can kind of chuckle about it but I have come to the conclusion to keep my mouth shut about telling others unless I am prepared to hear about their advice. I am glad I only have one close friend I consider a sister to confide in (who does not have RA) because in my opinion unless someone has direct experience with RA there is no way they can possibly understand it. Hoping you have a good day.
Kristina
I have been on all new biological drugs, and they only work for a while, my doc said nobody has it as bad as me lolo, you know I don’t complain .and try not to be complaining, but people tell you need to exercise more, the more I uae my joints the worst they get my feet are deformed, my hands,wrist, having second surgery to get right hand straigten out,meds help for a while and always hopeful for something to come out that might work, oh by way have had both knees replaced, need new feet so maybe I could walk, run and do things I haven’t done in awhile,cook,bake visit friends and family. but like I said I have lots of faith to go round. no one know what ra feels like til they themselfves have it, you know til 10 years ago I worked 12 hour shifts and I miss working, thank you for reading
My doctor literally said that I “failed numerous treatments” TODAY! I laughed and said “no Dr. G, the treatments failed me.” He chuckled uncomfortably and said, “that’s something we doctors say just meaning you failed to be treated by the med.” ? #whatever
#fail #medicinefail
Good for you Dee for calling him on it. They don’t even realize how it sounds to patients.