My Decision To Not Use Medicines Right Now Is All About Personal Responsibility

DancersYears ago, the chronic eczema in my legs flared up. By this point, I knew the routine: schedule an appointment with my dermatologist, stop taking warm/hot baths, and start slathering the thick prescription eczema cream on my legs twice a day. This time around, however, the doctor threw in one more thing–a one month prescription of anti-allergy pills. Within 30 seconds of taking the first capsule, I immediately broke out in huge hives. This was the first time I had ever had such a pronounced allergic reaction to a  medication, and it was a very unpleasant–and scary–experience. I called the doctor, to let him that I was allergic to the pills and could not continue to take them as he had prescribed. “You can’t be allergic to these pills!” he almost shouted, “…they are anti-allergy pills! Continue taking the pills, and we will discuss during your follow-up visit.”

By the time I hung up the phone, I knew that there would be no follow-up visit.

Many of my readers know that at the moment, I am not using medicines to treat my rheumatoid arthritis. The reasons are numerous; the most important one being that I’ve cycled through all of the DMARDS (and various combinations thereof) multiple times, and they are no longer effective. In fact, I’ve reached a point where they actually seem to make things worse. All of the recent headlines about the effectiveness of triple DMARD therapy make me shudder…I can barely handle one, much less two, and now the general consensus that seems to be forming is that I’m supposed to take three?! Why not try some of the many newer biological treatments, you might be asking. Well, the reality is that for many people, including myself, such medicines are not affordable. (My entire extended stay in New York City earlier this year was all about–as an unemployed and uninsured U.S. citizen–trying to gain access to such meds, but we now know how horribly off the rails that adventure went. As I mentioned in a Facebook post earlier this week, even my financial assistance application that I submitted to Pfizer was denied for–get this–not providing proof of valid income!)

Despite all of the above (and despite the fact that every member of my health care team agrees that *not* using pharmaceutical medicines is the right choice for me right now), I continue to receive a slew of message that all have the same theme: how can I be so irresponsible? Some people seem almost frightened of my story, and tell me that I should stop talking about my current non-use of meds because I am encouraging other to be irresponsible, too. Others go so far as to almost cast a curse on me: any joint damage and disease progression that I experience in the future will be totally my fault, and that when I reach that point they will be sure to remind me that I am the only person to blame. (Just lovely, don’t you think?) And then there is the icing on the cake: could I please not be so anti-med? (I mean, come on, do these people even read what I write?!)

The truth is, I am not anti-med. I know that many people who live with rheumatoid arthritis are helped by such medications. (Heck, some of them helped me greatly in the past.) But I also know that for many people, these same medicines provide only temporary (to no) relief. I also know–firsthand–that for some people, these same medicines and their serious side effects can actually have a negative effect on a person’s health. We are all individuals and we are all different; where we end up on this spectrum of possible reactions to different medications is as unique as every other aspect of our personal selves.

Rarely a day goes by that I don’t see some blow-up on one social media site or another, over the “right way” of treating RA versus the “wrong way” of treating RA…and this saddens me. It saddens me because I think, it this really the best use of our time and energy? Don’t we all have the same goal, which is to find what works best for each one of us? Are we not all aware that what works for one person will often be completely different from what works for another person?

I receive messages all the time from people who tell me that they would *never* use the same treatment options that I use, but that they are happy that what I am doing is working for me…and I love love love these messages, because they remind me that, indeed, we are all in this together. They remind me that what is less important is for all of us to follow the same path, and that what is more important is for all of us to encourage and support one another on our beautiful and very different, hopeful and optimistic journeys.

Maureen, a reader of this blog, said it best with these words that she wrote earlier this year:

RA Guy writes a blog which is rare; instead of simply complaining, he provides an outlet for his emotions (and, therefore, his audience’s emotions).  Instead of rallying for/against treatment methods, he outlines his own experience.  Instead of silently bemoaning the way RA affects life, he provides a thoughtful and sometimes amusing perspective.  Instead of whining, he provides an intellectual approach to the challenges presented by a degenerative disease.  Instead of simply disengaging from the processes of treatment which have not helped him, he consistently (and publicly) searches for new alternatives.

To all of the people who continue to send me messages about how irresponsible I am for choosing my own treatment options, and who continue to predict untold doom and gloom in my future, I ask you kindly: please stop. Rheumatoid Arthritis Guy–the website, the Facebook page, and my personal email inbox–is not the place to attack other people’s personal treatment choices.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

 

 

14 Comments
14 comments
  1. Carla says:

    Love the new look of the site! And I applaud your treatment decision. No, I’m not applauding the non-use of drugs any more than I applaud the use of RA drugs. What I am applauding is the personal journey that you took, the self-analysis, and the difficult decision-making process to decide on a (non) treatment plan. It’s a tough, highly personal assessment that all RA patients make and, as you pointed out, we don’t all choose the same path. Like you, I abhor people who criticize your decision just because you didn’t make the same choices that they support. If they want to use comments on your blog to discuss the benefits of their treatment plan, that’s probably a good thing. But criticizing your choices is not only rude, it’s just plain wrong. Thanks for the thoughtful post.

  2. Christine says:

    I am so happy that I have found you and your site! I too have chosen to go off all of my meds for now. At one point I was on eight different medications. The only difference between then and now is the meds had me so blury headed that I did not know what I was doing, if I was even able to be up and about. I had one allergic reaction after another and other side affects that were so horrible that it might as well have been an allergic reaction. My armpits looked like raw hamburger at one point and the steroids made me so aggressive I did not feel safe around my kids. I lost a nephew to suicide, which the stress caused my dad to have a major stroke and he died a month later. I lost eight other friends and family members within a 10 month period.

    I was walking around in a daze when was able to walk and meds for depression to help me supposedly deal with so much loss made me feel suicidal. I could not walk with out a cane and found a job with the help of my sister, that would have me off my feet all day. Somebody made a mistake and forgot to switch my insurance over to my husbands’ name, so I ended up with no insurance for a year. I could not afford to continue going to my specialist or take all the meds, so I gradually weaned off of them one at a time. I did not realize that repetitive motion of the new job would cause the pain etc. to move to my shoulders and hands. My right hand is now a mess and hard to things that used to be so easy. I was not able to keep that job long enough to get on insurance there, but finally got on my husbands’ insurance policy.

    I still have pain, but I no longer have ulcers from the pain meds. I have days that I rest most of the day just to have energy to get up to the bathroom and hopefully take a shower. I have days that it takes me an hour to shower and, after I rest a while, another two hours to get dressed. Those are my bad days, but I am not bed ridden as I was on bad days with meds. My body just does not react well to chemicals. If I could take a pill and be all better, I would, but it does not work that way for me. I rest all day on the bad days and thank God I have a husband and sons that will help me. I also have a sister that will come help if she is not working and knows I need help. I enjoy the good days and try to make the most of them. I use them to do fun stuff with my kids and finish things that need done. Reality is most of my days are somewhere in between good and bad. I have learned to choose carefully what I will do with my days, according to how I feel when I wake up. I know I can only do so much, so I do what is most important to me first and if I have any energy left it is gravy. I am sure a day will come when I will need to start on meds again, but until that time I have found prayer and meditation, along with eating healthy and resting enough, helps me as much as the pain meds which never worked unless they knocked me out.

    The hardest thing was just learning to accept myself the way I am and that most others never will. You will live with your choices for the rest of your life, so make those choices according to what works best for you. Yes do research, be informed and use all the information you find to make the best choice for you, but don’t let others who don’t have to live your life make those choices for you.

  3. Kay says:

    Thank you, RA Guy, thank you!! I can only imagine the horrible things that have been said to you. I know the attitudes of “the ONLY way to treat RA” on all the “foremost” RA blogs. I’ve read the snide and dismissive remarks to ANYONE that may have chosen the “wrong or ignorant” treatment. I am newly diagnosed with RA. I’ve spent hundreds of hours reading the experiences of others with this horrible disease and I, like you have come to accept that even though we all share a label (RA) the best treatment is different for everyone. If you are able to tolerate the meds and they are not doing nasty things to your body, then good for you! But if you happen to be one of ones that have vision loss, liver damage, crumbling bones, horrible allergic reactions, or cancer caused by RA medication then how DARE anyone question your decision to STOP IT! I too am so saddened by those who choose to judge. We should rejoice if one of us have been helped by meds, we should rejoice if one of us are helped by diet, we should rejoice if one of us are helped by yoga, tai chi, or meditation, because LIKE it or not there ARE those of us being helped by each of these and there is NOT a “right way or a ” wrong way” there is ONLY the “this is MY way” and I’m doing what is RIGHT for me! Just please know that there are those of us who are not closed minded and pious. We rejoice in you and your courage!!!

  4. tina thomas says:

    I love that you are trusting in yourself & your instincts. I am also glad that your Doctor is supporting you in your decision, he/she can monitor any joint damage or loss that might occur. I am struggling back & forth with the issue of biologics & DMD’s, I feel so terrible all the time!

  5. Vicky says:

    I applaud you taking your treatment into your own hands. And the fact that your doctor supports you is fantastic. People may THINK they know what they would do…but until you live it and are faced with the choices, no one really knows for sure. I pray that you find comfort in whatever treatment options you WANT. And as the mother of an 11 year old who was diagnosed 8 years ago, I pray for a cure! Keep your head up! It is your life!

  6. Wren says:

    Sweet RA Guy: Since the first time I ran across your blog, years ago, you have been a near-daily inspiration. Of all the RA blogs I read, it’s to yours I go first, every time, and I always look forward to your posts. This disease affects each of us differently. Because of that, each of us treats IT differently. I’m sorry that you cannot tolerate DMARDs anymore, and that the magic cocktail of three of them just aren’t possible for you. And I’m sorry that the biologics–for now–are out of reach. I’ll continue to hope that situation will change. And in the meantime, I know that you’re doing everything you can, every weapon you can find, to fight the dragon. Please know that you have my total respect. I consider you my friend–and as your friend, I’m sending all the warmth, comfort and care I can your way. Consider yourself hugged, gently but thoroughly.

  7. Jane says:

    Thanks for your post. I think it’s great that you’re deciding how to treat your arthritis. Have those people that are saying you’re being irresponsible ever thought that it might be diet that’s causing our symptoms? They have no idea what we’re going through and if there’s another way to treat it, then we should go for it. I’ve started seeing a naturopath and she thinks that with some diet changes and increasing my supplements it will bring down the inflammation and pain. Keep on doing what you’re doing and don’t listen to the negative comments because those people don’t know what they’re talking about!

  8. natchralli says:

    I intend to read the other comments after making my own. I appreciate your courage to face rheumatoid disease and the side effectors. The Side-effectors are people who are stakeholders in New-med. Pay no attention to the side-effected laying at your feet. Having won the lottery for messy chronic disease-of-the-month years ago, I am dunned by the pharmacist, specialist and TV direct ads on a continual basis. Right after every ad to ‘use,’ is the ad for side-effected-revenge, “have you or a loved one died…?” After a decade of oral steroids I have more side-effects than I ever imagined could pile upon my wasted lap. The specialist blinks at every question, the PA says “how do you know the decade of steroids is to blame…?” I realize that the push to remove chronic pain meds, one over 50 years on the market, is muscle-flexing by New-med. “Take New-med, we are removing your pain relievers, darn it!” How many months until New-med, like teen HPV vaccine becomes mandatory? I give it a maximum 24 more months given universal health coverage, anti-CCP 90% specific, and the war-on-some-drugs.

  9. Debra Thorpe says:

    I’m sorry about all the negativity you receive about med issues. Your site is one of the things that gives me hope and an occasional attitude adjustment. You are truly a superhero to many.

    I hope you find a way to try biologics. They are still a mixed bag (I’m on miracle drug #5 now), but they have kept me employed and more or less functional. My hopes and prayers are with you on your painful journey.

  10. Deanna says:

    I am newly diagnosed and still trying to get a grip on the idea of medicine to “fix” me as my doctor says. At the same time I was diagnosed my husband and I were ready to try to start a family. We can’t try for a baby and “fix” me too. I am 37 years old so we decided our focus is on starting a family. So I am on Prednisone for now, my OB doctor is ok with it since it is the lesser evils medicine wise. It is keeping me functional and working but not ideal and I am having almost daily headaches and dizzy spells now. Thank you for this site, I don’t have much time to go through it but am enjoying what I have seen. I am interested if anyone has had luck with diet changes. In preparing for a baby and now this I know I need to make some changes.

  11. Annette says:

    I have been diagnosed and I have been relying on green smoothies with turmeric root, organic ACV vinegar with raw honey and green tea. I still have pain but it helps take the edge off. However, during a recent flare up my Dr decided to put me on prednisone which I’m familar with from using for my asthma a few times out of the year. He decided to put me on Cymbalta which my body totaly rejects. I will no longer use that medication, the side effects are terrible. He also will be starting me on Plaquenil in a few weeks, I’m not quite sure if I want to use that either. I feel that it should be up to each person to decide what works best for them. I’m a phlebotomist and I don’t feel comfortable walking around feeling like a zombie on all these medications. I have to stick people for a living and some of the side effects are hazardous to myself and others if you ask me.

  12. Mnoone says:

    I just found your website last week and have read a lot about your struggles and your wonderful humor. I have AS which has similarities with RA. My first doctor concluded I have RA and never introspected my condition futher. I followed her direction diligently but later on, I questioned it. It’s good to question what I was doing to my body especially with so many meds. I later pointed out my one common problem she overlooked. It was where the pain was consistent and recurring…my spine. I never thought a doctor would be so wide opened in disbelief and gave me ‘how could I have missed that’ look. Inspite my suggestion to look at my situation in a different way, she ignored it. “AS and RA are treated the same way, if it is AS,” as her claim. I am so lucky to have another doctor who is so willing to see my condition futher in a different perspective. From there, my xray and test results showed positive AS. My new doctor and I met halfway on what I would like to take but of course, she hesitated in the beginning. I was taking NSAID (relafen) prescription since 2004 and I used it properly and cautiously. It slowed down the disease progession for years. Thanks for all the alternative ways we treat ourselves, including Proper DIET and EXERCISE. I like this liberty we have now. Thanks for the people who kept me in a long leash and trusted my judgement. Life is good as I see it.

    In the past months, my one prescription medication is no longer effective since it has a different effect on me now or something I am not sure about the med. I changed my diet to regular diet for more than a year now. Whatever I have done in the recent past, I know I wanted to do it.
    If a professional doctor can make a mistake, I can too. Likewise, if a professional doctor can make it better, I can too. Either way, this is my body and I want to take care of it.

    I like your blog and it is very inspiring! I just realized, there aren’t as many AS community compared to RA. That is OK since I can easily jump from one to the another anytime. I guess that puts me in the “mixed” category.

  13. Khadija says:

    RA Guy, I LOVED reading this post. I’m so sorry that you are receiving those type of messages, but I totally applaud your ability to speak your truth in spite of it all. We all have to realize that life is about learning from the various experiences along the journey and coming to the right choices and situations for each of us. It may vary by person, but that doesn’t make one individual’s decisions and outcome more valid than the next person.

    The great thing about personal freedoms is that we are FREE to exercise them! It’s funny, because I just wrote a blog post about pushing past the fear of backlash and negative comments when it comes to sharing alternative and holistic ways to manage chronic disease (I’m a 10 year Lupus thriver). Worrying about the types of comments you’ve received- despite my sincerity has cause me to procrastinate up until recently. But I’ve come to the conclusion that I have to speak my truth and share what I know because if it helps just one person, it will all be worth it. You can check out the post here if you like:

    http://thrivewithlupus.com/2013/12/14/fearlessly-fighting-lupus-or-on-speaking-my-truth/#sthash.h6EZ6f9Z.dpbs

    Keep up the good fight!

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