Resistance to Rheumatology Treatment: Blog Carnival #3 | Rheumatoid Arthritis Warrior

Resistance to Rheumatology Treatment: Blog Carnival #3

Would anyone oppose rheumatological treatment?

carnival cotton candyA recent column in a California newspaper prompted a response from rheumatology patients and parents of juvenile rheumatology patients. There are 61 comments already on my post Don’t Take Those Meds for RA or Juvenile Arthritis, plus a handful of comments on the original article. Danielle, a mom who writes about Juvenile Arthritis made a fitting rebuttal.

Articles like the one in the Santa Ynez Valley News appear frequently and most patients with rheumatological diseases encounter those who are influenced by them. I wanted to provide an opportunity to not only respond to the article, but also give reasoned explanations of various approaches to treatment of rheumatological diseases.

I was not disappointed. This was a tough assignment, but there are some remarkable writers who just happen to also be patients or caregivers or doctors. Enjoy!

Sensible responses to the culture against rheumatology treatment

Barbara of This Luscious RA writes about why she is “Choosing both medical and integrative approaches.” She tells her story of healthy living which neither prevented Rheumatoid Arthritis nor sent it away. When massage would not treat her disease, she put on “sensible shoes” and chose a new path to use both medications and her dearly-loved “natural-based healing/ health” strategies.

Dr. Lim of BJC Health Connected Care wroteAnkylosing spondylitis: Wonder Drugs Do Exist.” Dr. Lim has seen the benefit of watching patients disabled by AS be able to get well. Knowing the alternative for his patients, Dr. Lim is a realist: “These are powerful drugs, with their own set of problems. The cost is prohibitive, currently more than $20,000 a year. They have a range of potential side effects, some nasty, such as severe infections. And yet, in most cases, the benefit greatly outweighs the risk.” Why take such risks? Because, he sees “Patients respond quickly, sometimes within a week. The improvement is usually marked, and most importantly, patients report a vast improvement in quality of life.”

Kat at Living with RA and Fibromyalgia wrote her “Blog Carnival Response,” sharing her frustration with persistent pain and RA symptoms. She went to her general doctor “because I couldn’t handle the pain any longer… He said that it seemed like Western medicine was not working and that I should try acupuncture.” Kat is open to alternative methods of treating symptoms if they work and “as long as it doesn’t conflict with my current treatment.”

Attitude sounds crucial: “I don’t want anyone to press upon me their thoughts/views as to how I need to be treated or what I need to look into for help. I want the doctors to listen and believe me, not think I’m fabricating things. I want family and friends to be there when I need to talk or need a shoulder to cry on, because 9/10 of the time, that’s what I need from them. Not advice, just someone to listen.”

Carol of My life as a traveling Southern Girl wrote “Positive thinking can’t cure RA.” It’s a simple truth, but it needed to be said! Carol addresses Dr. Lee directly sharing her doubts of his theories about rheumatology that are related to weather, attitude, and liver function. Carol ardently defends Western medical treatment of Rheumatoid Arthritis and JRA. Her bottom line: “Mr. Lee, please don’t urge parents of children with a horrible disease to toss out medications that can keep them from permanent disability and put on a happy face.”

Nessie of the blog Lipstick, perfume and too many pills has “So Much to Say.” “Which medicines to take—and whether to take them—is definitely a pressure I’ve felt as a person with two chronic illnesses: psoriasis and psoriatic arthritis. Sometimes those pressuring me to take fewer pills and injections may have good intentions: take more vitamins, eat fewer nightshade vegetables, exercise more or differently, take XYZ miracle cure.”

Don’t blame the victim: Saying JRA is “usually temporary is setting them up to blame themselves when their child—shockingly—does not get well with massage, good eats and love. Auto-immune arthritis is not the result of my parents’ bad energy or stress; it’s not their fault…” And this comes from a vegetarian who does Yoga:  “This article is taking the nosy, think-they-know-better-than attitude that I’ve experienced from family and friends and people I barely know to the extreme. If massage, affection and herbs were enough to make me feel normal, I wouldn’t be taking multiple potential toxic drugs.”

Lauren of An Unguided Missile posted “Medications.” Lauren has first-hand experience with some who don’t understand. She has yet to tell some family members “that I’ve started a biologic treatment or that I plan to be taking one for the rest of my life or until medical science comes up with a better option.”

She hears: “You shouldn’t be taking anything – those drugs can make you more sick than you are now.” “Don’t take those. You don’t need them.” “I read about this guy with something like what you have – it went away completely when he changed his sleep patterns.” “What are you eating that’s causing this?”

Her advice: “Don’t let anyone bully you into a decision you’re not ready to make. Don’t delay treatment if there’s no reason, but don’t start something if you don’t feel you have all the information either!”

Her conclusion: “Please respect me, my treatment, and my level of functioning.”

Julie, author of An Attitude of Gratitude presents “Traditional Medications, Alternative Therapies and the Pressure in between.”

RA patients have heard it all: “I have been told that if I only: quit smoking, lost weight, exercised more, worked less, slept more, ate better, eliminated this food, added that supplement – you name it, I have probably heard it – I would be just fine. Sadly – more often than not – I have heard many of these things on message boards meant for patients with RA.”

Patients have to look after themselves: “I feel that these posts, these articles and these “discussions” are blatantly dangerous if we don’t take action to protect ourselves from both the well intentioned and the “quack” information out there.” She wonders whether ignoring medical treatment for a child with JA could amount to endangerment. I think that’s a good question considering parents of cancer patients have been forced to obtain medical treatment.

Jules’ bottom line for patients: Do your research, consult a doctor, and make your own decision.

Ashley of A Young Wife’s Tale wrote “Natural Treatments vs Medication for Psoriatic Arthritis on her charming blog, where she brings awareness to Psoriatic Arthritis on behalf of her husband, David. He uses a “blend of natural treatments and medication help him live as close to a normal life as possible.” But they have encountered resistance their approach.

Their reasons for using modern rheumatology treatment: “David was on older arthritis medications for over a year before he started taking Humira. He was getting worse. He was frequently bedridden. Yes, TNF inhibitors (also called biologics) are strong medications with scary potential side effects. David chose to take Humira because the benefits out-weighed the risks for him. Humira aims to prevent the progression of his auto-immune disease. He has improved dramatically while taking it.”

Note: Ya’ll, I’m blown away each time by what an impact the posts make, especially when taken together. I hope you can take time to visit each one of these blogs and leave a comment to thank them for their work. These are tough topics, but this is important.

If you’d like to be notified so you can participate in the next carnival, send me an email.

Recommended reading:

Kelly O'Neill Young

Kelly O'Neill (formerly Kelly Young) has worked over 10 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over thirteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

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9 thoughts on “Resistance to Rheumatology Treatment: Blog Carnival #3

  • February 28, 2011 at 5:30 pm
    Permalink

    Kelly,

    Thanks for putting together this vast array of blogs and comments. The more I read about others’ experience with RA the more I realise how different the disease is for each individual and how similar our experiences are!

    If I had a dollar for every ‘wonder drug’ or ‘cure’ for arthritis I’ve heard in the last 12 years I’d be a millionaire!

    My first rheumatologist told me in a letter he wrote to me after my first consult that if I tried to cut out all the foods people told me were the ’cause’ of my RA I’d die of starvation, because there qouldn’t be any food group I could eat! It seems he’d heard it all before too!

    And yet, when I eventually decided to check-out some homeopathic supplements I found something that made a great deal of difference to me. I know it doesn’t work for everyone, so I’m very wary about telling people about it, I don’t want to sound like all those ‘quacks’ out there who think they’ve found the holy grail of RA cures!

    The best advice is, as per one of your quoted comments – Be informed, educate yourself and make your own decision.

    Cheers

    Tracey

    Reply
    • February 28, 2011 at 5:54 pm
      Permalink

      Thank you Tracey. I didn’t realize rheum docs had to hear that much of this too.

      Reply
  • Pingback: Natural Treatments vs Medication for Psoriatic Arthritis « A Young Wife’s Tale

  • March 1, 2011 at 2:16 am
    Permalink

    I love these blog carnivals,fantastic blogs, thank you all so much!
    Now looking for the cotton candy booth…:)

    Reply
  • March 1, 2011 at 4:00 am
    Permalink

    Just wanted to note- apparently there was a problem with my template and it was too dark to read. I don’t know what happened but I changed it so it’s easier on the eyes. Thanks to everyone who stopped by.

    Reply
  • March 14, 2012 at 11:02 am
    Permalink

    I came searching for a balanced discussion on the issue of conventional Rheumatology treatments, but must admit to being somewhat disappointed…the objective of this post/thread seems to be to promote the status quo as far as treatment options go, with little attention given to the substantial risks and dangers associated with many of these drugs.

    Consider the facts – morbidity rates with RA have vastly increased since the development of many of these ‘wonder drugs’. Big Pharma has an enormous influence on the medical community, a fact which should never be underestimated. We, the consumers, need to demand more objectivity from our health care providers when considering the efficacy, safety profile – even overall quality of life – supposedly offered by many of these treatments.

    There is emerging evidence that medical reviews on new drugs are frequently distorted so as to present these in a favourable light and downplay risks and failure rates. Why? Because there are significant perks in cooperating with pharmaceutical companies. (see the documentary ‘Big Bucks Big Pharma’)

    For this reason, we urgently need to take another look at the direction RA research is headed and demand more transparency from pharmaceutical companies and health care providers. Until there are better, safer treatment options out there, we should respect the objections of those of who are reluctant to follow the status quo.

    Reply
  • Pingback: Choosing both medical and integrative approaches « This Luscious RA

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