Nothing is Worse than Nothing

I watched as the woman hobbled toward the elevator lobby. Even though she was obviously at least a decade younger than me, she was using a cane, limped heavily and didn’t look like she could straighten up. Her hands were swollen and knobby with some of the fingers turning in strange directions. I held the elevator doors for her and when she asked me to push the button for the fourth floor, I knew she was headed to the same rheumatologist I use. (There aren’t a lot of other doctors on that floor that might apply to her.)

She was a talker and we (or rather she) talked all the way up to the fourth floor, down the hallway and as we walked into the doctor’s office. Sure enough, she was scheduled for her infusion, just as I was. Once we both got checked in, she settled into the infusion chair next to mine (still talking).

Even though my infusion only takes 30 minutes, I found out more about her in that short period of time than I know about some of my friends that I’ve known for decades.

Two significant facts came out of that conversation. The first was that she was diagnosed a year after I was, although her disease state was clearly far more advanced than mine. And although RA affects us all differently, the primary difference was due to the second fact I learned: she had decided she didn’t want to be “on all those drugs” when she was diagnosed. Because of her aversion, she really hadn’t pursued any kind of treatment until she was so disabled by RA that she could no longer work.

She looked at me and said, as sincerely as I’ve ever heard anyone say anything, “I wish I knew then what I know now. The worst thing you can do for RA is nothing.”


This sentiment was recently echoed by a prominent rheumatologist who was on the same speakers’ panel I was. During his remarks he stated that he tells his patients that RA is a serious disease and it takes a serious treatment plan to address it.

I read about a lot of fears from patients about the potential side effects of drugs to treat RA and the fact that these treatments are usually used long-term does nothing to calm those fears. But what I think we need to hear more about is the understanding of the results of NOT treating RA. In addition to all the systemic issues RA can cause such as increased cardiovascular risk, the joint damage can be permanent. Like my new friend in the infusion chair, you can’t just ignore treatment then expect it to “fix” everything that’s gone wrong. RA is not like a rash that, if it doesn’t clear up on its own, you can eventually put some cream on it and everything will be as good as new. There are a number of statistics on the subject, but according to the National Institute of Health, within 2 years of disease onset, approximately 20% of patients are work disabled, and almost half are unable to work after 10 years.1

I’m not trying to tell you what treatment plan is right for you. I am on a biologic and methotrexate – two very powerful drugs. And I’m doing well. I like Western medicine because I like all the science behind it. I like being able to look at the data and the outcomes and the side effects that are discovered during testing. I also like being confident that my rheumatologist has experience with these drugs because she prescribes these same drugs for other patients and knows what those outcomes have been. There are other people that follow a more natural approach and many people that combine pharmaceuticals with a healthy lifestyle and anti-inflammatory diet. I respect anything that works and I think treatment plans should be personalized.

But if you have RA – do something to treat it – and do it with a good rheumatologist. Even if you go the all-natural route, you need to have regular blood tests and imaging to see whether or not the disease is responding to whatever treatment you feel is right for you.

To me, about the only thing worse than having RA is having RA and not treating it.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.
View References
  1. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3707489/

Comments

View Comments (11)
  • joeyk
    1 year ago

    Wonderful article and it has given me a lot to think about. What I have been doing, isn’t “nothing” ( primarily Dr. Brown’s Antibiotic therapy and Celebrex) for the last 20 years. While I felt I was functioning fairly well, my hands and feet are no longer a thing of beauty. Those joints are pretty compromised. Perhaps had I used a more aggressive treatment at the beginning I’d have had a different outcome.

    Is it too late to save my knees and larger joints? I don’t know. That’s what brought me to this site, additional joints are starting to rumble. I had two short courses of Prednisone this year, and I am ready to leap tall buildings in a single bound. I know that euphoria is only an illusion. So I am trying to work up the courage to try MTX.

    Like others here, I am anxious about probable side effects and frozen with fear over the possible ones. The rheumatologist made me laugh with his comment, ” People who read mystery novels tend to do better on these meds than the ones who read all the inserts on the prescriptions”. Still, it’s hard for me to even think of swallowing a medication, willingly, when the first sentence warns of ” serious sometimes fatal” consequences in use of this product!

    Nice to know we are not alone in this. As we are all different and respond to meds that way, too, but I appreciate the contributors at this site were not all so hysterical in relating their experience.

    I’m supposed to take my first dose of MTX on Monday, if I am still among the living by the end of the week I’ll send an update. smile

  • Karen
    1 year ago

    Thank you for reminding me of this! I’m currently being “guilted” by a number of well meaning people about “all those drugs.” Mostly I ignore it, but when it comes from your PT and then your chiropractor, and then I get a slightly wonky lab result, I have to admit it starts to prey on my mind. Add that to the next thing on the agenda is methotrexate (which scares me) I admit, I’m rattled. It helps to remember that doing nothing is an equally bad, or worse option.

  • mimir
    1 year ago

    It was one of MY patients that can me the PUSH to see a specialist. I had been diagnosed with MS decades before and then fibro within the last 10 years so enough was enough. The patient was a RN working with a rheumatologist and my crazy hands concerned her,for myself it was the nodules that would flare up on my corneas. As can be imagined the eye pain was hard to control ( I work in the field) and so finally went to the doctor our practice refers to. #1 I learned more about his pride in his son than I cared too. After a short exam in which he ignored my reason for coming to see him he told me to remove my pants(no nurse in the room ) and finally when I reminded him about the nodules he brings a scope at me at which time I remind him that due to my extreme myopia it is useless,that he laughs off. Nodules need to be stained ,not scoped as they are NOT internal. Done with that fool as is our practice. Also turned him into my insurance carrier and State Medical Board. His attitude towards woman is not to be tolerated. He has not been in America long enough from India to get over himself and He will not be learning on my patients or myself.

  • pchoate@tampabay.rr.com
    1 year ago

    It is such a quandary for me. I have been diagnosed with RA for 6 years, before that, it was some un-named auto-immune ‘sumthin or other’. I’m sero-negative, DON’T have the arthritis piece, more the connective tissue and fascia. I’ve been on all the DMARDS, Remicade, Orencia, and Xeljanz with no measurable difference in how I feel….other than poor from all the co-pays. I’ve taken a year long break from ANY RA treatment, other than living, moving, and eating the best I can. I DO get labs every 3 months and am due next week for more. The past 2 labs my Vectra Score is rising, as is my inflammatory markers, however not remarkably. I made a deal with the Rheumatologist that if the rise in these markers continues, I’ll get back on biologics, Actemera WAS the plan. My concern is always with side effects and whether the treatment causes more issues than the disease. I don’t suffer now, I just deal with fatigue and some stiffness. I’ve been seeing a lot of legal notices lately about Actemera…..more so on this biologic than the others. I’m not a stupid person, I understand the POTENTIAL damage, but I’m 64 yrs old….isn’t it possible I could live out my life withOUT that ever happening? It would be different if I lived with daily pain like so many others….but I don’t ….so, I wrestle with the question daily…..do I do? or do I don’t?

  • joeyk
    1 year ago

    LOL One of my closest friends bluntly told me, ” For Pete’s sake you’re 67 years old! You probably won’t live long enough to develop any side effects!” Just do what you have to do to feel better… now!

  • Carla Kienast author
    1 year ago

    I want to thank everyone for their comments. September is Rheumatoid Disease Awareness month and I think that the importance of being on a treatment plan is one of those things that truly needs more awareness.

  • Lawrence 'rick' Phillips
    1 year ago

    An acquaintance of mine gave me the same jolt of reality a few years back. Her situation was that she lives in a different country and used prednisone almost exclusively. She asked how bad my hands were. I said well they hurt (then far more than now) but overall I get along alright. She, on the other hand, was surprised to hear I was still able to walk. It was then I realized how fortunate I am. I am fortunate indeed.

  • mimir
    1 year ago

    Rick, I too am still walking but falling more often,ended up with a concussion last month. I am finding myself bending over to walk and hate myself for doing so. So now must be very conscience of what I an doing. The deformity in my feet can at least be kept out of sight when I go out,but my hands are loosing me the things that define ME. Can handle loss of most of this but my identity. Did need to stop working after 40 years,

  • Richard Faust moderator
    1 year ago

    Thanks for sharing this Rick. Too many people don’t realize that, as one of our contributors, Michael, puts it: ” RA progression is the enemy: the diabolical maniac that sits unseen, threatening, and disturbing my otherwise tranquil existence. Progression of the disease is the future that must be avoided, a cold war standoff between destruction and peace” https://rheumatoidarthritis.net/living/no-progress-good-news/. It is one of the few areas that no progress is truly good news. Best, Richard (RheumatoidArthritis.net Team)

  • cannonsplash
    1 year ago

    Carla, what a poignant post. Initially after diagnosis I stayednawaynfeom the scary meds. I swore I could lick this myself. A year later I cried at the rheumy’s office because I was in such pain. I’m very happy that I started the scary meds because they have made all the difference with my RA. In my early infusion days I saw a number of patients that had severe disfigurement and that drove me to fight the disease even harder.

    Thanks for this post

  • Richard Faust moderator
    1 year ago

    Glad the article resonated with you cannonsplash. Many people don’t realize that once the damage is done it is done. My wife, Kelly Mack (a contributor here), was diagnosed at a very young age and back then treatments were not what they are today, so she does have significant damage. However, as she writes in this article about the evolution of treatments, current treatments can help make for a better, full life and, as they did for you, bring that pain under control: https://rheumatoidarthritis.net/living/the-evolution-of-ra-treatments/. Wishing you the best, Richard (RheumatoidArthritis.net Team)

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