To Medicate Or Not To Medicate, That Is The Question

RA Guy Adventures of RA Guy 28 Comments

Rarely am I ever reluctant to discuss any topic related to rheumatoid arthritis here on my blog, but today’s post is the exception. It’s not that I am ashamed of what I am going to write about, it’s just that even though the words that I write here are often very personal in nature, I feel that decisions that I make on how/how not to medicate my illness are some of the most private issues in my life.

I have never hidden the fact that I believe in a complete, holistic approach to treating my rheumatoid arthritis, and that I have never limited myself to just taking pills. (See 00:00:10 remaining in my 60-Second Guide To RA.) That said, I believe that many of the medicines that I take to control my disease are both very helpful and very harmful to my body.

In only the past couple of years, I have shared stories of hair loss (I’m currently going into my third round), elevated liver enzymes (scary!), stomach problems (the superhero with “abs of tissue paper” was how I stated it so eloquently, I believe), and so on. I haven’t even talked much about my methrotrextate-year-from-hell (somehow my doctor at the time convinced me that having the worst headache for 48 hours after each dose and 24/7 diarrhea was a “normal” response to the medication), which took place before I even started this blog.

Even with all of these horrible side effects, though, I readily admit that many times these medicines have been the only things that have kept me moving. Shot upon shot upon shot, and pill after pill after pill, for months on end. There were periods where without these medicines, I would have been completely immobile from my jaw all the way down to my pinky toe.

But every now and then, my body reaches a point where I just know that the solution (temporarily, at least, as is often the case with talking about RA) is to not keep medicating myself as much. So I take a vacation from my pills. Now, I know this goes against all of the scientific information that we receive, but ultimately, for me at least, my decision to take these breaks comes from one thought: I, and only I, really know what’s going on with my body. I am the only person who knows what is helping and what is not helping. And in order to really feel well, I have to tap into these feelings and act with confidence.

And the results, normally (this is not the first time this has happened) are usually quite startling. I show a major improvement that lasts for anywhere from a couple of months to a little less than a year. Am I in remission, some might ask? I don’t think so, as symptoms of my illness continue to be present each and every day. Sometimes they’re not even less severe; I just seem to accept them, live with them, and incorporate them into my life much more easily.

So as a disclaimer, I want to clearly state that I am not advising anyone else on how he or she should or should not use medicines. (I often receive emails and comments asking about certain medicines, and when I respond I clearly state that each person reacts differently to each medicine that is out there. Yes, methrotrexate a few years back did more harm than good to my body, but I know many, many people who have responded well to it.)

My previous rheumatologist did not support my decision to stop taking my medicines for certain periods of time, which is one of (many) reasons why we no longer have a doctor-patient relationship. My current rheumatologist was originally reluctant when I raised the topic about a month and a half ago (right about the time I started tapering off ALL my meds), but in the end he recommended that if I make such a decision, that I incorporate other activities such as aquatic exercise into my treatment plan.

Ultimately, the decision on how and how not to medicate my illness is one that only I can make, with the advice and support of numerous health professionals who are in my life. I know that my current plan of not medicating will not last forever, but at this moment, this is what is working for me.

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

Comments 28

  1. Dottie

    I will support any decision you take…it is your body…and you know much more than anybody else…AQUI ESTARE SIEMPRE!!!

  2. Lene

    oh, absolutely! I call it “going into detox” and it starts when I begin to feel… Well, it’s hard to explain. My body tells it’s had enough, I stop taking the meds and drink lots of water. With my DMARDs (currently Humira), I tend to take very small maintenance doses that keep me going for a while, but not enough of the medication that I start feeling toxic. In terms of painkillers, I usually go off them entirely until my body tells me that it needs them again. That can be anywhere from a week to a month or more. I think it’s essential to stay enough in tune with your body that you can tell when it’s had enough of the chemicals and then listen to it. It equally important to monitor when your body starts telling you it needs the drugs again.

    Like you, I’m not saying that this will work for everyone. Actually, quite sure it won’t. But for me it does. good luck with your detox!

  3. Bernadine

    I agree completely. I have stopped certain meds due to negative side affects. The one thing we have learned is that I have developed an intolerance to all NSAID meds. He also supports my desire to try alternatives to treating pain since I do not want to be on narcotics if I can help it. Now that they suspect I have fibro on top of RA, I have a new challenge of finding the right kind of treatment, especially when it involves medications. He tried me on Cymbalta and I learned that I do not tolerate anti-depressants either, which is the primary type of drugs they use to treat fibro. While I don’t enjoy pain, I would rather deal with pain and have a clear mind then to feel dopey and only have partial relief. I couldn’t function to work or drive my car as long as I was on that medicine, not to mention it made me lose sleep and cause me to feel paranoid as well.

  4. Post
    RA Guy

    Thanks Dottie!

    Lene, detox is exactly what it is…although I have never thought of it as such. Thanks!

    Bernadine, my side-effects were “tolerable” (as tolerable as hair loss and liver damage could be), but I agree, it’s nice to learn which meds we can and cannot tolerate. I wish you the best…

  5. Halo_Jones

    When I was first diagnosed I begged for every and any drug going out of sheer terror and pain. I’m sure they helped, but I couldn’t say for certain as I don’t remember much of those first 6 months at all! I’ve been totally drug free, bar a few painkillers, since Christmas, a total of 4 months. I’m doing really well at the moment and enjoying swimming and Pilates when I can. If things started going pear shaped again (or in the case of my toes; sausage shaped!) I’d start up on whatever was recommended.

    My rheumatologist was initially very annoyed at my stopping of the drugs, but having seen my improvements he’s now more supportive. I’m not anti-drugs at all, but I think if your body is telling you it doesn’t need them then don’t take them just because. It can be a very fraught and polarised topic though; people can either believe that all drugs are poison and your body will heal itself, or that every ill in the world can be “cured” rather than “managed” by a pill. I think most people who live with a chronic disease have learnt to live between those views and do what’s best for them.

    Best of luck for the detox, hope it gives you good results and takes you to a happy place!

  6. Cathy

    Oh boy! I LOVE this post. Although I have only been back on meds for eight months (with terrific results), something inside me knows the day will come again when I will have to take a break from them and let my body have a chance to clean itself out again. Bravo for you! This is very brave but also very smart. I think we have to listen to our bodies and when we do, the right things happen for us. Good luck. As always, I will be sending the biggest healing thoughts I can your way!

  7. Chelsea

    I don’t have a problem with folks who want to try to do that. You do know your own body after all. Having said that though, I’m not one who has ever stopped all my RA meds. I’ve very briefly stopped the prednisone two or three times, many years ago now. I’ve never stopped my DMARDs, except for a couple of brief periods a year or so ago to get over an infection. I never have started a biologic though and to me, that might feel more toxic. I’ve never had bad side effects from mtx. Elevated liver enzymes once that went away with lowering the dose and switching another non RA med to something else.

    I guess I’m saying I’ve never felt I was at a point where I could go without my DMARDs. I’ve somehow always known and felt from my body that my “better” times were strictly due to the meds. The times I did have to stop mtx for infection, or got off pred because we all know why (never stopped both at the same time), I’ve since paid for it with my RA being under less control and progressing more now again than it has in the past. And I’m not even a “severe” RA’er. I guess I’m a slow but steady progressor RA’er.

    So I say, as tempting as it is to stop meds, don’t do it without a lot of consideration beforehand. I think I would try diet detoxification first (and maybe lots of antioxidant supplements/food) before stopping meds unless I was having more severe side effects from the meds. It could be much harder to get your RA under control or in remission again, if ever.

  8. Chelsea

    PS – and I wish my doc would’ve told me that it could be harder to get back under control.

  9. Chelsea

    As Lene said, one might try just tapering DMARDs, biologics or pred slowly down to low “maintenance” doses.

  10. FD

    I know this is not the place for my question, but I am not sure where else to post this. Thanks for understanding!

    What search terms do you all use to find the most relevant RA outlets using social media (Blogs, Facebook, Twitter, etc.)? When I search “Rheumatoid Arthritis,” I often have to review several search pages before finding some great outlets. Is it because the pages don’t start with the word “Rheumatoid?”


  11. Peter

    As we all know, you and only you know your body best. I think you were wise to do it in consultation with your doctor.

  12. Lori

    Thanks for the timely post. I’m frustrated with my RA, and maybe part of it is my own fault by thinking that if I found the right meds, the swelling would go down and I would be back to “normal”. I was diagnosed a year ago (my doc categorizing me as “mild”) and I’ve tried 3 different drugs – Plaquenil (which I was allergic to), mtx (which lowered my white cell count), and Arava (high liver enzymes). There is only one more pill that the doc suggests, and then it would be on to injections. My doc tells me that it’s up to me if I want to try different meds, and I’m at a quandry as to how to go about deciding. I’ve done the Pros/Cons list, and my Pro side always has “might” or “could” in the items, whereas my Con side is quite evident. Could it be that because of my allergic/intolerance for the meds I”ve taken so far that my body is telling me not to take anything except my NSAIDs for what achiness/pain I do experience? Comments from you or anyone else who wants to comment would be greatly appreciated.

  13. Stacie

    Hey RA Guy!

    I was diagnosed with JRA when I was 14ish(am now almost 22) and am not on any medication. Mind you, I also haven’t seen a Rheumatologist since I was 16(working on getting into see one soon).

    Anyways, I think you are totally right about listening to your body. Medication might work perfectly well for some people, while for others it might cause more problems than anything. I personally don’t believe putting chemicals into my body is the right path to go, and usually just try to push through the bad days and enjoy the good when I can.

    We should never feel like we HAVE to take medication, it should always be a choice and I’m happy that you have found a rheumatologist who is supportive of your choices. Wishing you all the best!

  14. Deborah

    I know that feeling. I never had med allergies until 2 years into my ra treatments. Then blam!!! Allergies from hell! I became allergic to soooo many different meds it was scary. I really think some of us react so differently to these meds while others can sail on through. Unfortunately I had to detox or stop cold turkey many a time and go without for long stretches. Since having ra for 12 years now I am more of an empowered patient and it seems to me that you are too. We all have choices to make and our doctors should respect our choices. Unfortunately I am also in the process of trying to find a new rhuemie as my last one told me, ” There is no point in me being your doctor unless I can write you prescriptions.” I have two prescriptions already but he was referring to the more powerful DMRADS. I have tried alot of them and the few I have not, I do not feel comfortable trying at this point in my life. Sooooo…the hunt begins for a new doctor.

  15. Christina

    Here’s to listening to one’s intuition! That’s what this is all about. RA Guy, I applaud your decision to listen to your body and your “gut” feeling when making medical decisions. Clearly, you’ve got all the “data” you need, and dr’s advice, etc. Sometimes the time comes when it is important to listen only to one’s deepest self.

    When I had another autoimmune disease a few years ago, I chose an unconventional treatment (surgery) over radiation. The dr’s were skeptical but allowed it. During the surgery they found cancer (which they’d previously tested for and assured me I didn’t have). If I hadn’t chosen the unconventional treatment, they would not have found the cancer. The suspicion that I might have that cancer despite their assurances was one of the reasons I chose the surgery. My mother had had the same cancer, and I just had an intuitive feeling…The doctors were really in awe of me afterwards! We all learned something.

    Now that I’m facing a new autoimmune disease, RA, I am trying also to listen to my intuition. It’s not easy. (Just this week I had to agree with my dr to quit MTX because of the severe side effects, despite desperately wanting to stay on it.)

    We have to listen to our deepest selves and our bodies. I wish you the absolute best as you try this new approach. You have certainly had your share of suffering and deserve a real respite, however it comes about.

    Thank you so much for sharing this treatment decision. Your honesty and insight is a great gift to others.

  16. Post
    RA Guy

    I really appreciate all of the thoughtful, considerate stories and viewpoints that readers have shared. I think that this is very helpful not only for myself, but also for many others.

    As Halo_Jones wrote, “It can be a very fraught and polarised topic though; people can either believe that all drugs are poison and your body will heal itself, or that every ill in the world can be “cured” rather than “managed” by a pill. I think most people who live with a chronic disease have learnt to live between those views and do what’s best for them.”

    It is nice to know that we can indeed have a civilized conversation on this topic!

    Here’s to listening to one’s intuition!

  17. candi

    There are so many interesting comments on here, I thought I would add my experience to the mix.
    I also believe in doing what you feel is right medication wise and if I could go without, I would.
    About 3 years ago, with the influence of my ex’s family as well as my own concerns about long term side effects, I went off all my medication and stopped seeing my Rheumatologist. Within 2 weeks I could barely walk, and it wasn’t until 18 months, and a relationship break up later that I went back on meds. I had had reactions to Arava, but what concerned me more was that I was told that I couldn’t conceive a child for 2 years after stopping the medication. Not that I wanted to have children at that time, but I wondered what the drugs were doing to my body if I was unable to bear a child due to remnants of the drugs still in my system.
    I was in a pretty bad way, mentally and physically and would say I was mildly depressed but also in a state of denial and confusion and not sure where to go next.
    I will defend my choices to the ground about medication because I am now on more serious meds (Biologic) because the disease had progressed and I nothing else worked anymore.
    My muscles had atrophied, I was severely deficient in all vitamins due to a 7 day fast and vegan diet I had put myself on under influence of my ex and his family, and I was unable to walk due to excruciating pain in my hips, I had lost about 15 kgs and was a measly 45 kgs.
    I looked like a skeleton and I could only walk about 2cm at a time. Although the meds have negative aspects, I chose life over what was a walking skeleton.
    I agree with Halo_Jones, that I have learned to live between the two opinions that my body will heal itself (except it’s attacking itself) and that meds will help me. I found a rheumy who listened, but more than that I listened to my body. Although I still get pain every day and will need a few joint replacements before I’m 30 (i’m now 24) and more to come after that, the medication works enough to give me some semblance of a life, even if I can’t go out clubbing like all other 24 year old girls or I probably won’t have kids.
    I choose life.

  18. Heide

    I am 56, almost 57 years old. I just went to my RA DR. today. He told me that I am about 2 inches away from a wheel chair. I took Methotrexate and remicade infusions for about 8 years. It slowed it all down. I was walking 2 miles a day and staying so busy. I am allergic to all pain meds so that was never an option. I developed an allergy to the remicade. I tried Orncia and I have never been worse in all 12 years of the RA. I can’t take the Orencia and my Dr. wants to go back to old school and put me on Prednisone and get my eyes checked out and put me on Hydroxychloroquine. I asked him about side effects especially since I had had so many problems. He wouldn’t even say… He handed me pamphlets and told me to decide. I can’t even go get the prescription filled. I am so scared. My knees are swollen and I am getting beaten down very quickly. I don’t know where to turn. I keep thinking that there has to be a healthier way to get this to simmer down for a while. Does anyone have an idea out there? I am at a dead end and need some input from those who understand. Thanks

  19. Kathryn

    Thank you so much for this post — you help me feel so much less alone in disease management, which I agree, is our job to do with our bodies, and frankly, is scary as hell. I tend to manage my RA much the same way as you describe, and I’m grateful for your transparency. I completely believe that the pills and the meds are both what keeps me moving, and what can do significant harm to my body. I try to keep my meds to the lowest dose possible (we’re on these things for life!), and to work with my Rheumatologist so that I can be the one that moderates/decides weekly dose, rather than the docs. This takes some relationship-building, but can work, especially if I do regular blood work on time, and can show that I’m managing to keep the CRP and other inflammation markers pretty darn low. I take enbrel and methotrexate, but I keep them at lowest dose possible and do pull off of both of them entirely for periods when my body and gut intuition seem to be saying to me: enough, for the moment. I have found that acupuncture can work wonders for flares. I take a daily regimen of the anti-inflammatory supplements: fish oil, turmeric, etc. I have found that yoga can *really* help decrease pain and inflammation, and increase mobility, and have found one scientific journal article that now backs that up ;). Surfing does the same for me, interestingly enough. I avoid the foods that I’ve found tend to lead to inflammation for me — and this came through much trial and error, doing the elimination diet, etc. because it seems different for everyone. I also sleep 7-8 hours every single night, and this helps a ton. I think this combination allows me to keep my meds at a relative low dose, and to go off of them for periods of weeks or months, now and then. I’ve got severe RA, and have had the disease for 13 years now. It’s always scary for me, though, when I realize my body doesn’t want the meds for the moment AND when I’m on the meds, both. I want to honor the lowest dose or no dose as my body is signaling, but it requires a lot more intention on my part to do other things to help manage the disease, and I’m afraid that it will come back with a vengeance, and it sometimes does. The larger dynamic that is important to me, though, is that I feel like I’m in charge of managing this disease (rather than it running all over me), that I must build the support around me and therapies that can help, and in the end, I know best what’s right for this body.

  20. Sarah

    For the first time in sixteen years I have just gone a week unmedicated. I was diagnosed with Still’s Disease (JRA) the systemic kind when I was 14 years of age. I have only ever experienced one short remission of two weeks in duration 10 years ago. I made the decision two months ago to taper off my meds (dmards & proton pump inhibitors) with the help of a naturopath. I myself am a third year naturopath. I am using herbal medicine to control my inflammation and stress levels and doing very well so far. I feel the best I have felt in 16 years….lighter, stronger and without a myriad of crippling side effects. I lift weights regularly to maintain and build my strength. Weightlifting keeps me walking. I eat alot of fish, nuts, coconut oil, fresh fruits and salad. Keep grains to an absolute minimum and avoid processed products of any kind. I have reduced my meat intake too. Only time will tell if I can keep this up. The doctors are not supportive, nor are my family, who are concerned for my wellbeing. My friends cannot believe the change in me and nor can I…..a kind of freedom from feeling drained, foggy headed, puffy, nauseous and weak. To each their own, support is nice but the hard part is having the courage to let go of the medications you’ve been told all your life you need to survive!

  21. Kate

    I have already made a decision to go with the RA and wait for better medications that don’t make you even sicker, only make you better. I don’t know how to tell my Rheumatologist that. I think everyone would say “You’re stupid!” when you say the meds are too risky. It would be nice if we could get an email when someone writes after us in a post (I write on so many, I don’t remember which ones, to go there again and check what people have said after me)

  22. Victoria

    Hello Kate, I am not sure if you will receive this but I am only writing in your response to ” It would be nice if we could get an email when someone writes after us in a post” So here you go. I went to my Rheumatologist appointment today and she went over lab results with and a MRI on my hands. Lab results showed no sign of RA but the MRI just shouted it out at her. She suggest I start on Methotrexate to keep RA at bay. I ask about side effects on all the meds oral, injection, and infusion. I like you and perhaps a good majority of folks go on the Internet for support and insight. I talked to my mom and it turns out she has RA in remission and has been this way for 8-9 years. My point of this post was from your last comment about waiting for better medications that will make you feel better not sicker. This also dealing with the side affects of the meds. I just can’t believe how risky they are causing possible liver damage, lung, etc. etc. after much reading. I am new at this disease and just speaking on today’s experience. I hope this help you.

  23. kari

    i am newly diagnosed. i have several other health issues besides RA. i don’t want to do treatment. Any advice? thanks for your time!

  24. Robin oconnell

    I was diagnosed over a year ago . Tried the diet of veggies and protein no or low carb low gluten etc. still had lots of pain. Finally resorted to prednisone and then methotrexate. Finally for the nausea under control with leucovoren ? Spelling? . Got put on plaquinil in February this year. Started having sore throat swollen glands and a fever! Thought I was getting a URI . Then started having shortness of breath irregular heart rate heaviness in my chest. Excessive night sweats. By this time I thought I was having asthma attack from my URI ! After a inhaler use caused me extreme hoarseness and no relief from my ? Asthma attacks I realized they were panic attacks! Really what was going on? My family asked me to go off my methotrexate and plaquinil! So i called my doctor and she agreed . Felt better after about a week or two. No more horrible allergic symptoms! Now I am so stiff and unable to move in the morning and my hands feel like claws thy are so stiff. Started prednisone again , along with Motrin , and yesterday back on low dose methotrexate . never plan on taking plaquinil again! It has way too many horrible side effects.. I am also allergic to latex so that leaves out humira or enbrel as a choice since they come in latex plunger syringe? Wish I had a choice of no latex syringes so I could try them!.. I am actually scared to try any meds due to my sensitivity to the Rx. But I can not be crippled either ! At a loss !

  25. Louise

    Hi every1, I have had RA for4 years It will get better it takes time and trying different meds but u will get there. I have 6 children age from 15 to 6 months work full time, have pain in both my hands, I’m on prednisone , Hyd and meth. Some days I’m in a lot of pain some days I’m fine and there are days when I just want to end it all, not that I would. All this meds do little to help but the real medication are my children I look at them and they make me keep on going. It’s with u for life and u have to learn to live with it or it will take over u 🙁 and we don’t want that to happen so enjoy the time we have even tho we r in pain and good luck to each and everyone of us with RA 🙂

  26. Kassandra Clampett

    Hi Guy! Your story is so motivating, I have been diagnosed in 2014 and been on many drugs and still taking them. My main problem is the 24/7 being in pain, that I sometimes just want to give up. Before all this I was a very hyper-active person and loved going out and having fun. I feel as if I have lost 2 and a half years of my life. Even from taking the anti depressant and sleeping pills I still don’t sleep much which is frustrating. I am so glad to have found your blog because I am ready to give up because I can’t do anything about it.

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