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Reaching Limits

I was humbled when I was reading the Facebook comments on my article on treatment following reaching remission. In the article, I made the generally accepted comment that RA can’t be cured, to which one very astute reader promptly replied that (paraphrased) that RA can’t be cured yet. Thank you for reminding me about what I also hold true.

I have always believed in medicine and its ability to cure. As a little girl, I watched the amazing medical dramas as television doctors worked their miracles and saved their patients. As I grew older and learned more about the world I also gained a deep appreciation for natural remedies and alternative forms of medicine.

And, of course, my own experience with the medical community has been blessed with talented physicians armed with technology and wonder drugs.

Intellectually I know that there are limits to what medicine can do, but emotionally it comes as a shock to me to learn that I’ve reached the end of what’s clinically available.

On my last visit to my rheumatologist, I mentioned that my Sjogren’s syndrome has been getting worse. Sjogren’s is, like RA, an autoimmune condition and is frequently a comorbidity with RA (meaning that it’s not unusual for people with Sjogren’s to also have RA). In addition to the treatment plan I’m on for my RA (which includes an infused biologic, injected methotrexate, and a NSAID), I take a medication specifically to address the dryness caused by Sjogren’s.

My doctor looked at me and said that rheumatologically speaking, there was nothing else she could do and that we needed to look at treating the symptoms by using readily available products such as artificial tears.

What she was saying to me is that she had nothing else in her doctor’s miracle bag to offer. She couldn’t cure the disease and we were already doing all we could from a medical standpoint to help make it better.

I didn’t say anything but inside my mind, I was screaming. This was not what was supposed to happen. At the end of the episode as the television screen fades to black before cutting to commercial, the patient walks out of the doctor’s office, miraculously cured. That was the ending I had written in my head.

Unfortunately, in my case, life isn’t a television screenplay that can be edited to change the ending. But I’m certainly not at a dead end. There are lots of options open to me to help the symptoms of my Sjogren’s, it just wasn’t what I was expecting.

The bad news is, of course, that right now there are limits in treating RA, Sjogren’s and other autoimmune conditions. They can’t be cured – yet. The really, really great news is that even since my diagnosis eight years ago, there have been new drugs, new research studies and a wealth of knowledge amassed. The first biologic drug was introduced in 1998 – less than 20 years ago and biologic drugs have helped more and more patients achieve remission. Who knows what the next 20 years will bring?

So yes, we have limits and I have reached at least one of them. But we also have hope. And research. And lots of promising things on the horizon.

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.

Comments

  • thegallopinggrandma
    3 years ago

    Thought this might interest you !

    Jul 7, 2016 – A simple electronic implant into the ‘Spock’ nerve could reverse the symptoms of rheumatoid arthritis, clinical trials in the Netherlands have shown. … But it also plays an important role in controlling inflammation which is at the heart of rheumatoid arthritis. … However stimulating …

    Google RA electronic implant. saw an interesting programme on it.

  • Larry Sawyer
    3 years ago

    I forgot, I started this note because of your promotion of the idea that RA folks needed to be involved in new research studies. I am alive today because i became good friends with the GI doc who took out my colon and the internal medicine doc who managed my meds and all three of us drank beer together and played golf when possible. we discussed this strange disease, how to treat it and what to do when the plan went south. so yes, the researchers need to hang out with us so that they can discern the nuances of a tricky opponent as opposed to taking our pulse and feeding us meds. I really believe this

  • Carla Kienast author
    3 years ago

    That’s a great story. Unfortunately, we can’t all play golf with our doctors (although that’s a great idea), so it’s important that we create inroads where patients’ voices are heard and valued in the process.

  • Larry Sawyer
    3 years ago

    Go Carla go, I think i told you that I am 74, been at this since 1979, and reached your decision point in 1986 and than about 11 years ago. and the lovely scientists keep coming up with another twist. for the last two years, i thought i had used up all the magic bullets but this year we went back to Actemra and i am doing better. Sjogren’s is a nuisance. I have found that if i put A&D ointment up both nostrils and on my lips before bed, i sleep better, and it seems to keep my mouth from drying out. go figure. I console my self that at least what i have is interesting from an intellectual point of view. my RA’s are very intelligent. a little sunshine in a deep well. be well my friend
    Larry

  • Carla Kienast author
    3 years ago

    Hi Larry. What a pleasure to hear from you again and I so enjoy your great outlook on RA and life in general. (And thanks for the great tip!) Do take care and please do keep on sharing here. It’s a great community.

  • Larry Sawyer
    3 years ago

    Go Carla go, I think i told you that I am 74, been at this since 1979, and reached your decision point in 1986 and than about 11 years ago. and the lovely scientists keep coming up with another twist. for the last two years, i thought i had used up all the magic bullets but this year we went back to Actemra and i am doing better. Sjogren’s is a nuisance. I have found that if i put A%D ointment up both nostrils and on my lips before bed, i sleep better, and it seems to keep my mouth from drying out. go figure. I console my self that at least what i have is interesting from an intellectual point of view. my RA’s are very intelligent. a little sunshine in a deep well. be well my friend
    Larry

  • Larry Sawyer
    3 years ago

    My ra came as a surprise. In 1978 my ankles started to hurt and the doctor who treated me said, he had no idea what it was, xrays were negative. by 1982 I had ulcerative colitis compounded by this strange “joint pain” So i was treated by a GI doc who took my colon out in 1986. Dr Rick was spooky smart, and gave me research materials about uc to read cause he knew i was interested and a typical type triple A personality who knew that he could beat this thing if he only had enough information. we became good friends and one day over beer he said, “I dont know what you really have but i have never removed a colon or part of an Ileum from a dumb person. for some reason people with Crohn’s or colitis are part of a real smart group”. I have no way to challenge this thesis except to say i have never met someone with my syndrome who is not less than smart. My brother had it, colitis without the joint pain, he has a PhD. my son who does calculus for fun has it. and the folks i meet through my RA doc seem to be more on the ball. curious . i wrote a pamphlet for Crohn’s /Colitis foundation on living without a colon. i had four contributors plus my GI doc and we were all smart. I like the thesis that ra is the consequence of a piece of virus or biologic code which has been clipped into our dna being recognized by our immune system as being foreign and thus should be eliminated. this thesis comes from the MS community where it is supposed that a piece of viral dna code adopted by the human genome has died creating a loss leading to MS. It is really a puzzle and smart folks are working on a cure without really knowing at this point what they are curing. the gods who smiled at my birth are laughing know. be well PS for fun I am rebuilding 1960’s Lionel trains for my grand kids. I am learning to incorporate 12 volt led lights into a 1940’s technology

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