The Importance Of Having Confidence In Our Decisions

RA Guy Adventures of RA Guy 41 Comments

Many readers know that, for almost the past year, I have been treating my rheumatoid arthritis without medications. Some people have interpreted this as me saying that I’m not doing anything for my RA, something which could not be further from the truth.

During this past year, I attended physical therapy on a 2x or 3x weekly basis, I successfully incorporated an extended-period of daily pool exercises, and I made great strides on the emotional front, through actions that range from adopting various lifestyle changes, to removing multiple pre-existing stress triggers, and increasing my levels of acceptance of this disease with which I live.

On the previous occasions when I have shared the fact that I am not taking any meds, while most of the responses that I received were generally supportive, I did notice an uptick in critical comments. I was accused of being irresponsible, of being anti-med, of being an advocate for snake-oil “cures,” etc. I also received messages from some people, demanding that I fully explain–publicly–why I would ever even consider following such a route, when it came to my treatment options.

But, as with many other aspects of living with RA, the final answer comes down to determining what it right for *me*, despite all of the suggestions, comments, and feedback that I receive. People who have been reading my blog for a while know me well. I have never considered the words that I write here as directions to others, or suggestions about what they should or should not do. When I write, I am only choosing to share what I have learned and continue to learn about living with this chronic disease. I have never had any qualms about talking about what does and does not work for me, and by doing so I have never made any assumptions that I might be speaking for others. I only speak for myself.

And while I may not have always fully articulated the reasons why I have not taken any medications over the past year, I have always had full confidence in the knowledge that the decisions that I have made in the past and continue to make in the present are the right decisions, for me. And, as with many other aspects of life, there is much to be gained from having confidence in one’s own actions.

Yesterday afternoon, during a 90-minute visit with my rheumatologist, I made the decision that I would once again start taking medications to treat my rheumatoid arthritis. You might think this decision was the result of pressure that I received on his behalf, but this was not at all the case. In fact, I left the office with three plans that my rheumatologist himself proposed, and which he fully supported; Plan A and Plan B involved different types of medicines, and Plan C involved continuing on the med-free path that I am currently on.

My decision to return to meds, even though it was made during this hour and a half conversation that I had with my doctor, was based on my ability to finally understand and communicate many of the different reasons why I stopped taking medicines in the first place. And by being able to so clearly understand why I needed to stop taking meds, I was also able to confidently make the decision to once again take meds.

  • Connecting with my “non-RA” self: I have learned that no matter how much pain I might be in, no matter how much disability I might be experiencing, there is always a part of myself that will remain unaffected by this disease. Yes, there have been many times when it feels like my rheumatoid arthritis has taken over my complete self, but I have learned that–even in these moments of crisis–there is still a part of myself that I can tap into, and grab on to…and that by doing so, I am able to pull some sense of order back into my life. Over the past few years, I have noticed that after being on meds for an extended period of time, I start to lose this “non-RA” piece of myself. While this one part of myself never succumbs to the disease, it does eventually start to be affected by the drugs…and when I start to see this part of myself fade away because of the medications, and when I am no longer able to tap into this “non-RA” self for the support that I need, then I–as a complete person–begin to fall apart. It is at this exact moment when I am able to determine that the drugs are doing more harm than good, and that I need to give my body the break that it is asking for.
  • Failed hope: I know that I go into every treatment plan with a certain sense of hope. After all, I continue to invest all of the necessary time, effort, and money with the idea that these treatments are going to alleviate some of the pain and disability, and help slow the progression of this disease. I know that every individual responds differently to different meds, and that what works now many not necessarily work in the near future or vice versa. But even with all of this awareness, I think that certainly at the conscious level, and probably even more at the sub-conscious level, there is much more hope than I am even aware of attached to each treatment plan. When that point is reached, where it is determined that a certain treatment plan is not working, despite the brave face that I’ve often put on in the past, the emotional effect is absolutely crushing. Yes, I know that there are many different options which can be tried, and I know that if often takes months to even determine if certain drugs are helping, I know this, and much more. My logical side, my mind, knows exactly what to do, and how to handle the situation. My emotional side, on the other hand, is not always as prepared, and often feels like it’s being dragged on for a long and bumpy ride. Like I mentioned in the previous point above, once this emotional side of myself become too fragile, I need to take the necessary measures to increase its strength. For me, in the past this has meant taking a break from drugs, and for the future, this means exploring further the connections that I have between medicines and hope, and how to deal with this shattered faith and this lost hope, after a treatment plan does not work.
  • Financial implications: In an ideal world, all of us would have access to all of the drugs we need, despite our financial situation. Now, when I made the decision a year ago to stop my meds, I can honestly say that the cost of my meds did not factor into my decision, even though many months it practically came down to a decision as to whether we were going to buy my medicines, or have money for food and utilities. (Buying my drugs always won. And yes, for an extended stretch, we did have to deal with multiple utilities frequently being cut…) As I stopped taking drugs, for the reasons explained above, one of the first things I started to notice was that there was actually enough money to pay for what we needed each month…and then, as the months passed, I actually started to realize that there was a little money left over. For the first time in a long time, even though it was still quite thin, we actually had a financial cushion…and my stress levels started to drop. I was no longer continually worrying about how I could pay for my drugs. And as I stopped doing so, I noticed that I had eliminated a huge stress trigger…and as I’ve learned over the past few years, anytime my stress levels goes down my RA gets better, and anytime my stress levels go up my RA gets worse. Like I said, this wasn’t a factor that was considered going into my decision to stop taking drugs, but it was certainly something that I noticed afterwards.

So I don’t know exactly when, but over the next week or so I will once again start taking yet-to-be-determined medications in hopes of controlling the inflammation in my joints. (First, I have to have some different lab tests done, probably at the beginning of next week.) Yes, I’m already beginning to wonder how all of this might be paid for, but in the end, things will work out, as they have always done in the past. (And if they cut my cable or telephone line, so be it!)

I will never regret my decision to not take drugs over the past year. Doing so has helped me learn so much (only part of which is highlighted above), and has allowed me to strengthen a part of myself that I know will continue to carry me far into the future. And chances are that I will more than likely take another one of these extended breaks in the future…but I’ll cross that bridge once I get there.

I know that these decisions that I have made in the past, and continue to make in the present, are the right decision for me. They may not make sense for everyone, but the only thing that matters is that they make sense for me. To know that even my rheumatologist, in addition to my friends and family, understands as much, means a lot to me.

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

Comments 41

  1. Tina Tarbox

    I wish you the best as you embrace your new treatment(s). I have gone through periods where I have foregone medications with the full support of my rheumatologist (who sounds much like yours.) There are so many factors that go into what treatment plans we embark upon and whether they are “worth” it or not. And of course our bodies are ever-changing.

  2. Kim

    I found this blog very useful in a situation that I’am going through right now.
    I am getting nerve blocks monthly in my lower back and neck for pain.
    I am on meds for my heart and my Doctor dosen’t want me to start taking narcotics until I have to.
    You put it in words that I understood.
    I loose the part of me that makes me who I am so I choose to follow my Doc’s suggestion of waiting for more intense treatments.

    Tks 🙂

  3. Wren

    Guy, I absolutely understand your reasons for stopping (and now starting again) RA medications, particularly the emotional aspect. After my rheuma diagnosis, I took many different NSAIDs and couple of different DMARDs but had absolutely no relief from the painful and debilitating symptoms. Only narcotic painkillers helped, but they also had a frightening physical and mental price. After about six years I decided, mostly out of hopelessness and disgust, to stop taking ANY medications for my RA. For several more years I continued to have symptoms, but they slowly diminished until, to my total delight, they were gone. My RA had gone into spontaneous, drug-free remission.

    As I’ve written about in my blog, I remained in remission for about six years, experiencing only a very few episodes of pain during that time. I was grateful, but I never attempted to fool myself into hoping that the remission would last forever. Instead, I tried to simply make the most of it while it lasted, and I DID–I hiked, camped, fished, climbed mountains, worked hard in my garden and worked equally as hard as a journalist. It was wonderful to live a normal, active life again.

    But as I suspected it would, my RA came back. It wasn’t as painful or disabling as it had been in its first incarnation, so for quite a while I was able to mostly ignore it. But it slowly worsened. I’d been reading about new, miraculous medications that helped many people with RA live more normal, active and pain-free lives, so despite my skepticism (and because, frankly, I was fearful of the return of the awful symptoms I’d had in the past), I found a rheumatologist and started taking RA meds again.

    While they haven’t eliminated the symptoms of my RA, I feel confident that they are keeping them from being worse and from disabling me further. I feel confident that they’re slowing the course of the disease in my body. And like you, I continue to have hope that one day, these or new medications will arrest or cure my RA once and for all.

    Will I ever stop taking RA meds again? I might. There are many factors to be considered, including the financial aspect. They’re also a threat to my body in other ways, and that could one day be a factor.

    I’ve always left my options open when it comes to this mysterious and perplexing disease. The way I see it, doing so always leaves me a way to move forward.

    I wish you the best as you pursue health and well-being in spite of your RA, Guy. Sending warm hugs your way, too, as always. 🙂

  4. Connie

    All I can say is good luck with your decision, RA guy. I have spent the last 3 years on all of the meds my rheumy has recommended to find myself now battling a serious infection. No more Humira for me and I must give up Prednisone as well. Our meds are a double edged sword in so many ways. The decision to use them or not is one that is entirely up to you. Other people do not have to walk your walk.

  5. Jennifer

    I was diagnosed almost three years ago…shortly after that I signed up to a bunch of different pages, hoping to learn more as I tread my way through this disease. About a year ago I stopped paying attention to the blogs/sites. I unilaterally lumped them all together and go too depressed with all the daily update people post about feeling bad and being on this or that medication. I didn’t want to be in this group of people who seemed to have given in to this disease. I now see that, that was me in denial and the only way I could cope. I’m coming back now and you/your words are a beacon in the darkness…so much of what I just read is exactly how I’ve felt. I’m currently on meds but have been very much on the fence throughout. Thank you for your words and the hope I feel from you.
    Sincerely, Jennifer

  6. Banana

    Thanks so much for this post. You do such a great job putting words to the complicated mess that decision-making (and sense making?) can be! I absolutely relate to so much of what you said, even as I make my own, different choices. We all have to find our path, remain flexible, and find some peace with this disease.

    Oh and the ‘failed hope’ section made me tear up. Sigh – yes, yes, yes.

  7. Lisa H

    I think we all play that back-and-forth game with ourselves about whether or not we really need the meds or if they really help at all. You put it so well. Thanks for explaining things like this. Reading about the way you think things through and your journey helps me on my journey. Good luck on your new path! 🙂

  8. Caite

    Thank you so much for this post. What I find interesting is that having multiple chronic conditions, people question why I’m taking so many medications. I do hope to eliminate some of them bit by bit, but if it takes this many pills a day to make me feel close at all to who I used to be, I’ll keep doing it. For me taking the medication means stepping closer to my non-fibro/arthritis/asthma/GERD self and gaining the space from my physical problems necessary to have an emotional and social life. I’ve finally just started thanking people for their concern. The ones who push it get told that until their names start showing up at the top of my medical bills they can keep their thoughts to themselves!
    I do understand about the hope though, it was crushing the first time I had a flare after I started the medication. There is always some little part of your brain that takes good days as proof that you’re getting better.

  9. Tracy

    I am right there with on this. I have done it all. No meds, natural rememdies, family remedies, different modern meds and so on. It is a personal choice and you have to find what works for you best and what YOU can live with. 😉

  10. Alanna McCarthy

    I find myself questioning the med decisions every time a new one is thrown at me. I’m on remicade infusions and I haven’t seen much improvement but I have only had one and due for another next week. Ray and I have spoken about this and I feel it is necessary to give it a realistic amount of time to work, but if there is no improvement by the summer, I will definitely be looking into removing the more risky medications that I am currently on. I need to make the choices that I feel are right for my body and these meds are really interrupting my life.

  11. Marcia

    As always, thank you for sharing your RA and life experiences with us. I am grateful for your insights. And best of luck to you at this decision point in your journey!

  12. Kate@Cooking with Arthur

    Good luck with the new meds. I think coming off them was a brave decision and I can understand wanting time to find your non-medicated self or baseline. Once you are on them it is hard to know what impact they are really having, whether they are slowing things or stopping things, and I’m sure being meds free will have given you a better insight into that.

    We are so lucky we don’t have to worry about the financial cost of the drugs in the UK. To get funding for the really expensive ones you have to go through an assessment process but otherwise it is the doctors call. I can’t imagine the extra layer of stress it must add to the whole RA-nightmare. Makes me realise we shouldn’t really whinge so much about the assessments.

  13. Carla

    Thank you for your continued honesty and openness about your journey with RA. It helps so many with the very difficult decisions we face. Good luck with this next phase of battling the disease. You know that you have the love and support of a multitude of people behind you.

  14. Snow

    I hope someday I can get to the point where I want to find my non-medicated self again. I’m fairly recently diagnosed and have found that I’m losing myself to the pain. I’ve been horrible and bitter lately, which isn’t generally my personality. I’m not liking my RA self much these days, so I’m willing to give the drug-induced self a try for a while. I’m seeking balance in all this. Between you, a very kind rheumatologist, and my Buddhist daughter, I have at least found some hope. Thanks.

  15. Kat in AZ

    I was first diagnosed with RA (Ankylosing Spondalitis) when I was 18, by the USAF, during Basic Training as they were getting ready to discharge me (and as RA “Existed Prior to Service”, no medical benefits on that medical discharge)

    2 children and 28 years later, I’ve gone from some “sand in the knees” to not being able to kneel in my garden to thin the weeds, not being able to climb three stairs, not to mention a full flight of stairs. Though, I still can walk a mile if it’s level or only a mild elevation change.

    If I forget my arthritis and go do more than I should, I take a tylenol 3 and a 5mg Flexeril, but I hate the Flexeril, so a single Script for 10 tablets will last a year with leftovers. I dont’ take any boilogic modifiers, and during the winters, I’ll take 2 aleve at night and one in the day if necessary. (I moved to Phoenix 20 years ago to aleviate the worst of the winter pains.)

    So, I’m right there with you in not taking a lot of medications for my arthritis, and just keep pushing through it, stretching exercises, and deep breathing exercises (ribs can fuse with my condition, so keeping them moving/expanding is vital)

    Every person must be proactive with their condition, and remain on top of new research for their condition, then choose what is the route that they want to take in their treatment, and all of those things are individual, because though we may all have RA, mine will behave differently than yours, and one treatment for one person isn’t going to be the optimal treatment for another. DO WHAT WORKS FOR YOU! 🙂

    Peace and Mobility to all!

  16. Suzanne

    Bravo you, RA Guy! I admire your strength and insights and wish you the best of luck with your continued journey. You are so brave to share such personal pieces of yourself with all of us. Thanks for that 🙂

  17. Tanya

    I will never understand why some patients are so judgmental of other patients. It’s sad, inappropriate, and a waste of energy. RA Guy, keep on doin’ what you think you need to be doin’, no matter what.

  18. Lyn Burnstine

    I would never be critical of anyone’s choices of how to deal with pain and disease. I did, however, feel sadness at hearing you were not taking anything to stop the progress of your RA. You see, I have had RA for 55 years, and for decades there were no options available to me. I’ve been on a biologic for 12 years now, mtx longer than that, and the destruction has slowed greatly, but I can never get back what I have lost. My profession was music and I can’t play any one of the 7 instruments I played. I have made wonderful compensations with writing and photography, but still I grieve for the music that was my bliss and my identity.

  19. Lori flores

    March 9,2012

    I have had Ra for over 25 years and have been everywhere you all have been. I have had great insurance and no Insurance. However, for me there never was any question about taking meds. When first diagnosed I had two.small children and a husbund that worked seven days a week. If I was unable to take care of my children then who would. So I went through every combination of drugs that existed at the time. I have never been sorry. When biologics came out I said give it to me. I forsee wheelchairs in my future and without halting, or slowing the degeneration of my joints our two story home would become impossible. So I looked into every avenue possible to help pay for the costs.

    Two knee replacements later I still continue drug therapy. I am proud to say that even thru horrible mouth sores, nausea, vomiting, brusing and other side effects I was able. to raise both my children, volunteer for school activifies, work full time, part time and even two jobs at one time. I know for sure that without the aid of those drugs I would certainly not have been able to do even half of all that.

    Everyone has the right to decide on what course of treatment they will follow, but this disease was and is still bad enough for me to tolerate. I was determined that it did not have a severe effect on my children and I know I succeeded. That was my choice.

  20. fridawrites

    I fully support your decisions and any changes in your decisions. It’s your body, it’s your life, and it’s your right to do what’s right for you. You know your body better than anyone. The medicines are there when you need them and they’ll wait when you don’t. There are times when I use medicines and times when I don’t.

    One of the many things I appreciate about your blog is that you don’t judge what others do who may be at a different stage or in a different situation. The disease is very variable among individuals and even within our own individual illnesses and arthritis just seems to have a mind of its own no matter what course we take sometimes.

    There are a finite number of meds but an infinite number of reactions bodies can have to them. These are serious drugs; some of us have had serious effects from them. They can have tremendous benefit but they aren’t right for everyone at all times.

  21. fridawrites

    Also there’s where I think judgment comes from sometimes. It’s not that people want to be judgmental–it’s a way of reassuring ourselves if we can that we’re doing something right and therefore won’t have adverse outcomes. (It’s the same way with media celebrities; people love to judge them.) I get a lot of comments (and assumptions about what I do or don’t do) about needing to exercise more, needing this med or that, acupuncture, yoga, etc. It’s people’s way of reassuring themselves that it couldn’t happen to them–that they’d do everything right and that I’m not, and that I have infinite time, resources, energy, and money to invest in multiple courses of action at the same time.

    Some of it comes from concern, but you’re intelligent and informed and are taking a reasonable course of action. There’s a lot of fear of others doing things differently sometimes.

  22. Jenn

    I wish you luck. It is a very personal decision. On my blog I wrote a post on how the disease is worse than the drugs and I truly believe that, but it doesn’t change that fact that every individual has a different experience with meds. I had many issues with plaquenil which sounded like some sort of wonder drug from reading other people’s experiences with it. That was very discouraging for me. But for me personally now, the suffering with out the meds is too much. I just maxed out on one and all I can do is keep going hoping something will work for awhile. We are all in different places. I don’t agree that someone should just do nothing, but a conscious decision to not take meds is different than being in denial and refusing to try to help yourself. I hope this time around is better for you and you have good luck and few or hopefully no side effects.

  23. Ann Kreager

    I really appreciate your candor in sharing your stories. We all need to know it’s OK to make our own decisions about our lives. After all, these are our bodies. It has been nine long months of pain and emotional turmoil for me. Finally, last month I was diagnosed with RA. Your website has helped me so much during this trying time. I just knew something was wrong with me and I could relate to many of the things you wrote about. I can’t thank you enough for opening up to a group of people that need each other’s support! You are my hero!

  24. abcsofra

    I have walked that tight rope often. I respect all decisions with any disease that a person makes just so long as they are fully informed. This I know is the case with you. I wish you all the best with your endeavor and yes, I am curious as to what med you have decided on trying. The main thing is, I hope it works for you! You deserve relief and you deserve a pain free life. You give so much to others, I hope the universe gives back now.

  25. Carly

    RA Guy- I, myself, never understood why people chose the non-med route until about 1.5 months ago when I decided that everything I was taking for the RA and Fibro was doing more harm than good. I now completely understand. I only kept one of my medications and that is my infusion of Actemra. My doc applauded my decision, which gave me even more confidence that I was choosing the right path for me. Many of us give suggestions but only when they’re asked for. I’m happy for you in whichever path you choose to take. I hope it works out for you to take meds again. Good luck and please keep us posted.

  26. Linda Robinson

    RA Guy, I applaud your decision to alter your treatment plan. You’ve been battling some extremely tough days. To be able to look at one’s life objectively and reassess is something most of us find impossible. I was diagnosed at age 44 in 2007 and like so many others who commented here, I ran full speed ahead into RA drugs, landing on the heavy hitters within a year of diagnosis. The literature that emphasized “early and aggressive treatment” was what resonated the most for me. Having 4 kids and a teaching career that provided my health insurance left me with little options but to fight like hell to beat RA down. Big scary drugs they are, but I am in remission. We don’t know the price we’ll pay for these drugs, nor for letting RA’s inflammation run rampant. Not one of us should ever judge another’s decision in how to stay alive. I wish you a new lease on life and pain free days, RA Guy!!

  27. Angie

    You’ve had quite a journey this past year. I’m thankful that you shared it. Do you qualify for any clinical studies?

  28. Leslie

    You are your best advocate. I have a feeling that you won’t give up much if any of what you’ve been doing for the past year. I wouldn’t be surprised if your meds needs wlll be less than before because of the already gained impact. Which could become less than the anticipated drain on the budget. Get a digital antenna if you have to give up cable. Best of luck with your new adventure. Oh yeah, ask your doc if she/he can help you out by supplying samples, especially for proprietary drugs. Better living through chemistry!

  29. Angie

    Thanks for being so candid in your reasons for taking a break from your meds. I have reached that point as well, but I didn’t know how to put it into words. A lot of times, I believe that we and our doctors all forget to take into consideration the emotional impact that this disease has. Though we may not let it run our whole lives, it does affect many aspects of it.

    I have an appointment w/ my rheumy in the am, and I’ve been very worried about how I’ll explain the fact that I haven’t been taking my meds. Hopefully you won’t mind if I make some of your words my own! And hopefully she’ll be more understanding than I give her credit for.

    Oh, by the way, I find it hilarious that you call yourself a superhero! A few years ago, I was relaxing with my husband and 2 teenaged sons & the boys asked us, “if you were a superhero, what would your name be?”. I don’t remember what any of the guys said about themselves, but my boys said I would be “The Arthritic Avenger”, and my husband called me “Captain Fibro”! All affectionately of course!! The names have stuck to this day, and it really helps to lighten the mood, especially when my boys get beat at miniature golf by THE ARTHRITIC AVENGER!!!!

  30. Libby Schou-Kristensen

    I found your letter heart-wrenching as I have been there myself many times. Passivity is our greatest enemy and I commend you for being in tune with your body and mind to the extent where you can make your own decisions and yet at the same time speak freely to your Rheumatologist. I have found that medication is only a PART of the RA experience. Meds attempt to control the disease and the pain but there is much more to YOU than the physical. You are a spirit made in God’s image and you also have a soul (your mind, will & emotions). It is necessary to look at ‘the bigger picture’ as RA affects us spiritually, mentally, emotionally and physically. I am praying that God will use your Rheumatologist to direct you to the right medication FOR YOU. God bless and remember that the One who knows you the best, loves you the most! x Libby

  31. Bev Siddons

    My sister shared this site with me via Facebook. I was pleased to find people with RA who take their health by the horns, fight the good fight, and do what’s best for them. While this is the first time I’ve seen your blog, I applaud you. I, too, went through a period of non-meds. After all, my RA was diagnosed in 2004, Enbrel and Methotrexate got my pain under control almost immediately, so I thought I was out of the woods and quit taking everything. At the time I quit, I substituted traditional Chinese medicine including acupuncture. I was feeling so good, I quit that too! Then this last year, I found myself in the emergency room 4 times and in the hospital for a week. They finally brought in a rheumatologist who diagnosed and treated me for pleurisy. It seems my body was extremely inflamed and it was beginning to attack my organs. In November, I had a Pacemaker implanted. Needless to say, I’m back on meds, but with my doctors’ blessings, the number has been greatly reduced. Now, I have vowed to myself to pay attention to my body, do what I think is right–as you did–and let the nay-sayers do what they want. As so many of you have posted, you’re trying to block the progression of the disease. That is my goal as well. I will continue seeking natural treatments but have also come to believe that RA cannot be cured (yet) and that I need to deal with it the best I can. I just experienced a flare. I think it came to remind me that no matter what I do, God is in control and that there is a reason for everything. So I continue to do lots of research on remedies but not with the same fever-pitch of post-diagnosis days. I wish you the best Mr. RA Guy, as well as the best to all your readers. We are a powerful bunch–the SupRA-heroes!

  32. Christina

    “Episodes of shattered faith & lost hope” — that about sums about my journey with RA meds so far. It’s not that they didn’t work somewhat, but I got severe side effects from each. I’m on #5 now. I am having what I call “A Glimmer of Hope” — that’s all I’m allowing myself — because I had 10 days of markedly reduced pain for the first time since getting RA 1 12 years ago.

    But it gets so hard to keep summoning up the hope again. And hope, they’ve discovered, is a key ingredient to physical healing. So I think perhaps, after doing one’s research and applying the rational mind to different options, the best course is to choose the path that gives us the most hope at any particular time.

    I hope it goes well in your return to meds, RA Guy!

    Thanks as always for this post — and for your non-judgmental stance toward the entire spectrum of RA treatments.

  33. Erika Ward

    I just found your blog today and I’m so impressed with you attitude. What an insightful and inspiring post!

    I have psoriatic arthritis and I have always felt the same way – that no one can know better than myself what is right for ME. I am so thrilled to listen to your heart-felt feelings and experiences.

    I am currently on the opposite path as you, just ending a 4-year stint with pharmaceuticals to explore the amazing options available through altenative therapies. It is a joyful journey, and it is what is right for me right now, at this time. But it wasn’t always so, and who knows where the future will lead.

    Thanks so much for your courage, confidence and strength. What a wonderful example you are to others facing chronic illness.

  34. ronnoxs

    Great luck to you!
    I’ve been unmedicated since diagnosis (18 mths) but with little support from consultant or nursing staff. I think I’m getting close to going agreeing to some form of medication but I am dreading the reaction I’ll get.
    Thanks for sharing your experiences as they make me feel less alone with my decisions

  35. jane

    I have had RA for 9 years. Had every biologic on the market. Finally tried actemra two years ago and it actually works for me. However, I now have high blood pressure, high tryglicerides and severe anemia all due to actemra. I am seriously considering just stopping meds. My worry is that I was in tremendous pain before actemra for years and the pain is still not completely controlled. Between a rock and a hard place here. Any advice is welcome. I am so tired of taking this med and having it ruin the rest of me.

  36. Susie O

    Will never feel good about taking any of these drugs…but when I get to the point where I can’t walk or my body won’t move well then I feel it is not as I have a choice. The choice is kind of forced upon me. I Hate RA! I will never stop missing what I had before RA. Mostly I just want to cry. I am a non med. natural type person, having to take some of the most damaging drugs out there. Maybe the secret is in simply taking the drug that makes me functunal and not worrying about tomorrow. That is the answer… I just can’t seem to learn how to do that. I guess it is about letting go.

  37. Carine H

    I feel for you, and I totally understand your choice for the drug free approach; and also to try medication again.. No choice is irresponsible because you followed your heart, and that’s as responsible as it can get!
    I have severe RA but have never taken drugs, which many people don’t understand. I put a lot of effort in diet and alternative approaches and I’m still far from cured. Still for me this feels the best. Meanwhile the alternative therapies have strengthened my being in so many ways. We all have our own paths and we must all respect tand support that of eachother.
    Wish you and all who read this well!

  38. Tina

    Thank you for your blog, I found it today when I most needed it. I have had RA for about 20 years, 8 years of not knowing what was going on with, doctor’s and people thinking I’m crazy because my flares we at least twice a week in both hands, knee and other areas and they would always last at least 3 days with me trying to work. I was finally sent to a Rheumatologist and test positive for RA, they the put me on Nsaid many different ones and they all burned my stomach, so I stop taking them everyday and when I flared I would take them. It has been 12 years, and know I’m faced with taking Methotrexate and not sure what to do, because I don’t want to take this drug because it has so many side effects, so I’m still looking at my options. I am still working full time, walking doing some yard work cleaning my own house and living my life at 51. Hope everything goes well for you and I am so glad I found this blog. Thanks again Tina

  39. Yvonne Carlyle

    I agree with you 100%
    Thinking of doing a drug holiday and see what happens.
    Been on these drugs 3 years.
    They make me sicker than RA

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