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My Decision to Be on Meds

Those of us with rheumatoid arthritis are no strangers to unsolicited advice. RA is a disease that most people either aren’t aware of or are misinformed about. While most coworkers, acquaintances, and strangers are unfamiliar with the specifics of the condition, even our close friends and loved ones may not fully understand the ramifications of living with RA. Regardless of whether they know that RA is a lifelong, degenerative, autoimmune condition, the people we encounter from day to day may gather from our wrist splint, our limp, or our own admission that we are in pain. Pain isn’t just unpleasant for the person experiencing it; it’s also uncomfortable for the people witnessing it. Out of a sincere intention to be helpful, many people offer advice on how to deal with RA. They may share information about an article they just read or something that cured the RA of a friend-of-a-friend of theirs. Most of the time when I’m on the receiving end of unsolicited advice, I try to remind myself that the person is trying to be helpful, and if I can summon up the energy (which isn’t always easy to do when dealing with the pain and fatigue of RA) I try to educate the person about how the disease operates and why quick fixes don’t work. Yet, the piece of unsolicited advice that really gets to me is the suggestion that I should stop taking my medications.


As rheumatoid arthritis is an autoimmune condition, many of the drugs used to treat RA suppress the immune system. That’s scary for our loved ones to hear. But guess what? It’s far scarier for us to live it than it is to hear about it. Every time I’m relegated to bed with a cold, flu, or infection that “shouldn’t be this bad,” I think about the medications that I’m on and what they’re doing to my immune system.

In addition, many RA drugs also come with side effects that range from unpleasant to requiring monitoring from a doctor. For instance, my eyes have to be monitored by an ophthalmologist due to the small risk of vision loss associated with Plaquenil, and I have to have my liver function monitored because of the Arava I take. Indeed, it’s difficult to take a pill or get hooked up to an IV without thinking of the potential negative impacts these treatments that I’m taking in hopes of improving my health might have on my body. When people suggest that I go off of my meds, they don’t have anything to tell me that I haven’t already considered a hundred times or more. The fact is, RA treatment can be scary, but living with untreated RA can be scarier.

First off, rheumatoid arthritis is an extremely painful condition. There are times during flare-ups of the disease that the pain is too intense to accomplish anything, sometimes making even sleep impossible. That can happen while on medications that decrease disease activity. Untreated RA can mean that one experiences more days of extreme pain than days of tolerable discomfort. During flares, I am usually prescribed a corticosteroid such as prednisone. This drug is an immunosuppressant and carries other risks and side effects. I worry about those aspects of the medication, but I take it because it causes my inflammation and pain levels to rapidly decrease. I don’t love the potential risks in the future, but I’m trying to survive my present.

Second, RA is a degenerative disease. When it goes untreated, the risk of bone erosion and joint deterioration, as well as deformity, increases. In turn this makes the need for surgery more likely, which is expensive, painful, and causes temporary cessation of work, family care, and other responsibilities. In addition, joint damage leads to loss of mobility, which can make it impossible for one to take part in favorite activities or even errands and chores. This speaks to quality of life issues. I have been diagnosed with RA for 15 years, yet I am able to be fairly active and have not yet had to have an RA-related surgery. I attribute at least part of this success to my treatment plan. With RA medications, there is the risk of various health problems, but long-term damage from meds occurs in a small percentage of cases. In contrast, joint damage is very common with untreated RA.

Finally, rheumatoid arthritis can be fatal, as it is possible for RA to impact the heart and lungs. While mortality rates with this disease are rare, people with RA are at an increased risk of death compared with the general population, which is usually due to cardiovascular impacts of the disease.[1] Therefore, going off of my medications means increasing the risk of dying from this condition. While the risk may be low, with stakes that high it’s hard to dismiss.

I would love a cure for this disease, and would be thrilled to not need any RA medications. However, my reality is that I do have active rheumatoid arthritis, and that I have carefully weighed the pros and cons of my treatment plan. When someone suggests that I abandon my medical regimen, I immediately feel the well-intentioned advice giver has no idea of what I’m contending with. While the suggestion may be given from a place of love, I have never felt comforted by this particular piece of advice. Rather, I feel judged for the difficult, continual decision I’m making between two unpleasant choices: RA meds with a variety of worrisome side effects and unchecked disease activity. While RA treatment is far from perfect, I have deemed that it increases my chances at a longer, happier, and more active life.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

  1. [1] http://www.ncbi.nlm.nih.gov/pubmed/18926169

Comments

  • Larry Sawyer
    11 months ago

    Amen,

  • Tamara Haag moderator author
    11 months ago

    Thanks for being here, Larry! Take Care, Tamara

  • Honeyma1
    11 months ago

    Very well written, Hit it right on the head

  • Tamara Haag moderator author
    11 months ago

    Thanks for sharing your comment, Mary! I’m so glad you found this article worthwhile. All the best, Tamara

  • jamie
    12 months ago

    Thank you for sharing! So hard for my husband to grasp what Im going through, he thinks if i take a prednisone i should be ready to GO like I used to!

  • Tamara Haag moderator author
    12 months ago

    Hey Jamie, That’s really tough. If there was a medication that made us all “ready to go” then we would all be on it! Unfortunately there is no “magic bullet.” Thanks for sharing your experience. Please feel free to share anytime, as we definitely understand the challenges of RA here. All the best, Tamara

  • MaryB
    12 months ago

    This is an interesting look at a very difficult subject. Having dealt with Crohn’s Disease for more than 40 years, I can appreciate the unwelcome however well meant comments. Now I am trying to put that knowledge into practice with 4 forms of arthritis one being RA.
    Mostly, I believe we need to be respected for our choices, whether we agree or not. We know our bodies better than anyone. Best thing is to realize we are not alone with these things.

  • Tamara Haag moderator author
    12 months ago

    Hi Mary B, Thank you for sharing! I’m sorry to hear you’ve been hit with multiple autoimmune diseases. That is tough. Yes, respect is so important, and sometimes one’s urge to see someone in a better place can lead a person to overlook that they don’t know a person’s situation the way the person living it does. Thank you for sharing your perspective and experience, and I hope you will continue to do so anytime you feel inclined. Wishing you all the best, Tamara

  • 1m2wg9k
    1 year ago

    Very well said (written). I couldn’t agree more with your choice to remain on RA meds. I was officially diagnosed in May of 2000. I am now on Symponi Aria infusions…every eight weeks. It helps so much! I’m also on Methotrexate, Prednisone, Neurontin, Tramadol, Flexeril, and Nabumetone. I was prescribed Buspirone for my nerves and Lexapro for depression. I taught school, mostly first grade, for 35 years. I had to retire to take care of my mother. She was diagnosed with Alzheimer’s Disease…hence the meds for depression and anxiety. My husband and I took care of her, in her home, for over five years. During that time, I lost my husband to cardiovascular disease. Last November, I fell down Mom’s outside steps and broke my right femur in a spiral break. I was told by my surgeon (who had previously performed both of my knee replacements) that a spiral break is extremely rare. I’m special that way. Ha! Mom passed away in late March and I have a lot of decisions to make. Blessings to you!

  • Tamara Haag moderator author
    1 year ago

    Thank you for sharing all of this! I’m so sorry that life has thrown you so many challenges in recent years. That is a lot of grief, burden, and emotional and physical pain. I am glad that your medications are helping with your symptoms. I wish you all the best as you care for your body, your grieving heart, and your mother’s affairs. Please continue to share any time you feel inclined.

    Wishing you all the best,
    Tamara

  • Tich
    1 year ago

    Unwanted advice is something we all need to be aware of. However (in a new article) we might want to give some space to alternative therapies tempered with caution about sensitivity to unwanted advice? I was stuck in a prednisone circle when I searched for alternatives. It happened to me, and my rheumy was out of alternatives.

  • Tamara Haag moderator author
    1 year ago

    Hi Tich,

    Thank you for sharing! It sounds like you might have been able to get out of the prednisone cycle – is that the case? If so, what ended up helping you? While we have yet to find any one treatment (alternative or medical) that works for everyone with RA, there are many people who find that diet and/or alternative therapies have been very helpful, so I always welcome hearing these stories.

    We do have articles regarding supplements/etc. (https://rheumatoidarthritis.net/natural-remedies/) and alternative therapies (https://rheumatoidarthritis.net/alternatives-therapies/) in our “Treatment” section of the website. We also have a page about diet and nutrition (https://rheumatoidarthritis.net/diet-and-nutrition/).

    In addition, we have a number of articles about non-medical treatment that has been helpful for our contributors. For myself, I’ve found several alternative treatments that have helped (https://rheumatoidarthritis.net/living/counting-blessings-healthful-practices/), especially yoga (https://rheumatoidarthritis.net/living/ahhhhhh-yoga-breathing-basics/) and guided imagery (https://rheumatoidarthritis.net/living/a-guide-toward-more-positive-thinking/).

    It’s always helpful to know what people are interested in learning more about, so I’m taking note that more information about alternative therapies is needed. And I do welcome you to share what has worked for you. Thanks so much for sharing your thoughts and interests with us!

    Wishing you all the best,
    Tamara

  • melody123
    3 years ago

    To DEBMAR. When I tried 8 tabs it made me nauseous so then I had to try shots which did not help me any more than 6 tabs. I won’t take more than 6 tabs. I don’t know if everyone is like me but I learned what worked for me. I’m on 4 tabs now with two sulfasalizine enteric coated tablets a day and Orencia infusion weekly. I refuse steroids as there has not been any effect from the shots and I’m not trying the pills.

  • DEBMAR
    3 years ago

    I have had RA only a short time have been on Methotrexate for about 4 months. I think I have responded well to the meds. But just had check up and my Doctor wants to up the meds from 6 a week to 8 a week. I’m not sure I want to do this, because all of the side effects of the drug.
    Any thoughts from anyone? Is it normal to increase Metho from 6 a week and then up to 8 a week?
    Thanks

  • Richard Faust moderator
    3 years ago

    Debmar, Tamara’s advice to have a conversation with your rheumatologist is spot-on. I would add that it may be useful to ask about combination therapies. There may be numerous reasons this is not the course of action at this point (that’s why it is a question for the doc), but worth asking. Here is an article from the editorial team on combinations of conventional and biologic medicines. https://rheumatoidarthritis.net/treatment/combinations-of-conventional-and-biologic-dmards/.

    Best to you and keep us posted. Richard (RheumatoidArthtitis.net Team)

  • Tamara Haag moderator author
    3 years ago

    Thanks for reaching out with your questions! I’m glad that you have found this online community, and hope that it will be helpful as you cope with your recent diagnosis. Here is an article about methotrexate that includes information on typical dosages: https://rheumatoidarthritis.net/treatment/methotrexate/. I recommend having a frank discussion with your rheumatologist about your concerns about side effects. S/he may have additional information for you about the rationale behind the recommendation to increase your dosage. Personally, I never took more than six pills a week, but I also didn’t tolerate the medication well. It may be that since you are tolerating methotrexate that your doctor thinks a higher dosage would have a more profound impact on your symptoms. Again, a frank discussion about the recommendation could provide some additional information that your doctor has not yet explained or shared.

    In addition, you may want to post your questions to our forums, as some readers view those more often than comments on articles: https://rheumatoidarthritis.net/forums/. We are also on Facebook, and our Facebook page is another place to post questions.

    Please continue to reach out any time you have questions, concerns, or experiences you want to share. Living with RA can be challenging, but there are many people who are able to find a treatment plan that works for them and are able to lead very fulfilling lives. Know that we are here for you, and that you don’t have to deal with all of this alone.

    Wishing you all the very best,
    Tamara (Site Moderator)

  • Dave
    3 years ago

    Well said! Thanks. I just wish that those self-styled “experts” understood what you are saying! When that happens to me I TRY to patiently explain, but am not always successful with the “patient” part!

  • Tamara Haag moderator author
    3 years ago

    I agree, it’s challenging! If only being a patient made us patient, RA would make us like buddhas! 🙂

  • llzelm
    3 years ago

    Unfortunately some of the drugs mentioned below have not worked for me such as Arava and Methotrexate. Although I do take Plaquenil and sulfasalazine and 5 mg of prednisone. Has anyone had experience with Enbrel? I have been approved for this drug but have put off the decision to go forward with the treatment. I am concerned that putting it off will cause my arthritis to destroy my joints faster. is this a legitimate concern? I put off taking it when I discovered that gabapentin helped a lot with pain but did not have any side effects that I have noticed.

  • Tamara Haag moderator author
    3 years ago

    Hi Millie, Thanks for sharing! I know what you mean about the very high cost of RA drugs. You may find you can relate to this article: https://rheumatoidarthritis.net/living/the-money-pit/. I hope that your current treatment plan continues to be successful for you! All the best, Tamara (Site Moderator)

  • millie57
    3 years ago

    I have been on enbrel for 8 years. It has been great for me…but if I didn’t have a drug plan with work I won’t be able to taken cause it is very expensive , and I am also on methotrexate , Celebrex .

  • Richard Faust moderator
    3 years ago

    Thanks for the question. Enbrel is one of a group of medications referred to as biologics. While all in the same family, the various biologics all work a little differently, hence why one may work for you and another does not. Also, a biologic may work for a while and then its efficacy diminish, requiring looking into alternatives. Determining whether a biologic is right for you, now or later, or in some combination with conventional meds is certainly a conversation for your rheumatologist. Here is a an article from the editorial team looking at some of the various biologics: https://rheumatoidarthritis.net/treatment/biologics-treatment-options-for-ra/.

    Good luck finding the best treatment for you and keep us posted. Richard (RheumatoidArthritis.net Team)

  • Tamara Haag moderator author
    3 years ago

    Thanks for reaching out! I was on Enbrel from 2000-2007. It worked really, really well for me until it stopped working for me after seven years, at which point I moved to another biologic. The decision of which medications to take is very personal. It is true that biologic drugs such as Enbrel can decrease disease activity, slowing the progression and joint damage caused by the disease. However, there are also side effects and expenses associated with these drugs that must be considered as well. For me personally, I have chosen to be on biologic drugs, as they give me the highest quality of life (minimal joint erosion and better-controlled symptoms).

    While biologic drugs can actually stop RA symptoms at the source, gabapentin works by impacting neurotransmitters in the brain. Gabapentin changes the way our brain receives the message that the body is in pain, but it does not actually stop the underlying symptoms (although pain is a very noticeable symptom of RA!). I recommend you have a frank conversation with your rheumatologist and let him/her know why you are hesitant to start Enbrel and ask if your x-rays, etc. indicate any joint damage at this time. If there is currently no joint damage, you could monitor the progression of the disease with your doctor, and the Enbrel will still be there should you decide in the future that you want to try it. Here is some more information about Enbrel, in case you are interested in how this drug works: https://rheumatoidarthritis.net/treatment/enbrel-reviews-how-does-it-work/

    Thanks for reaching out, and please continue to do so any time you have a question, concern, or experience you’d like to share!

  • Tamara Haag moderator author
    1 year ago

    Hey hburks1977,

    Thanks so much for sharing these commendations! It always makes my day to hear that our site brings someone comfort and encouragement. I agree that it helps for RA Warriors to share our battles and victories together!

    Please continue to share any time you feel inclined, as we are so glad to have you as part of our online community. By the way, in case the “1977” in your handle means that you were born in 1977, I’m including a recent article I wrote about being 40 years old and having RA (I was born in December 1977). If that number has a different significance for you, disregard!
    https://rheumatoidarthritis.net/living/this-is-40/

    Wishing you all the best,
    Tamara

  • hburks1977
    1 year ago

    Amazing page and moderators you are spot in with everything i have read, god bless u all and god bless us all that fight to perservere over our disease! We are all Warriors none of us are weak everyone should be so proud that they have been able to endure and make it through the average person has no idea and could not even find them nor tolerate the things that we go through on a day-to-day basis. So happy to be a part of all of this I really feel like there’s hope out there to these questions

  • Eric P
    3 years ago

    Thanks

  • Tamara Haag moderator author
    3 years ago

    Thanks for your comment and for being part of our community!

  • Michelle
    3 years ago

    Once again, you capture this all so well and eloquently! Thank you for your writing!

  • Tamara Haag moderator author
    3 years ago

    Thanks so much for your kind words, and for being part of our community!

  • Str8gal37
    3 years ago

    Great post! Exactly

  • Tamara Haag moderator author
    3 years ago

    I’m glad this resonated with you. Thanks for sharing your comment!

  • Connie Rifenburg
    3 years ago

    Way to state it Tamara! My ire is facing those in the family that are holistic and KNOW that if I just stopped these drugs and cleaned my ‘gut’ “it’s been proven” to cure RA. Eat only organic, juice more, Yoga, and holistic meds through the chiropractor.

    STOP! I want to yell. How many times must we say no? Yes, I know the drugs are just as bad as the disease. Yes, I want to get well. But stop. just stop it. You are only making it more difficult to live with the decisions I make with my dr.

    Thanks for letting me vent. I’ve wanted to yell this more than once. You gave me a reason to do it here. 😉

  • Richard Faust moderator
    3 years ago

    Thank you for your comment Connie. Serving as a place to “vent” is certainly one of the important roles of the the community. It is hard enough for an individual to deal with the medical condition, without the added stress. Normally, here is where I offer up additional reading, but this time I’ll hold off on the advice and simply wish you a great stress -free day 🙂

    Richard (RheumatoidArthritis.net Team)

  • Lisaleena1
    3 years ago

    I’m with you Connie, STOP!
    What’s worse is hearing this from members of our own community.

  • Tamara Haag moderator author
    3 years ago

    Thanks so much for sharing your experiences and feelings, Connie. I think many of us can relate! Good intentions can feel very unhelpful. I’m glad we have this online community where we can hear from some other voices who know what living with RA is like. Thanks for being part of our community!

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