Holding Out Hope?

At my last check-up with my rheumatologist, I was feeling pretty frustrated. I’d been in more pain than usual the week prior to my appointment, and as a result the week had been far less productive than I’d hoped. Tired and achy, I’d made it through each day feeling discouraged at how little I’d accomplished, and went to sleep in braces and on a muscle relaxer wishing to wake up feeling better in the morning. Yet, each morning I awoke to find the same level of pain and fatigue. By the time of my check-up, I was starting to worry that this could become my “new normal.”

Over the 15 years that I’ve been diagnosed with rheumatoid arthritis, my “normal” has shifted several times. At 37 years old, I am still able to lead a fairly active lifestyle. I don’t exercise as much as I should, but I can usually pick up my three-year old son when he needs soothing, run errands and bring in sacks of groceries, and go for walks with the family. Yet I am hyperaware of all of these activities, and have to perform them with care to ensure I don’t put too much strain on my joints in the process. The carefree days of my youth when I could lift weights, kickbox, and play soccer for hours are gone, and the fear of what my life may look like as I continue to age having a degenerative disease creeps in occasionally.

During the week leading up to my doctor’s appointment, I had been experiencing fearful thoughts more often than I typically do. It’s rare that I worry about whether I’ll need surgeries, but my hip pain had me thinking about whether a hip replacement is in my future. The pain in my bunions had me thinking not about whether I’ll need surgery on my feet, but rather how far away that surgery will be. As a mother of two children who are three and five years old, these are not the thoughts I want to be having.

The day of my appointment, I was feeling a little better than I had in the days prior, but I still thought a dose pack of methylprednisolone might be recommended during the visit. Instead, I was surprised by what my rheumatologist had to say. He noted the significant swelling in my hands, and he did order x-rays to observe how much damage there is in those joints. Yet, rather than the short-term fix of steroids, he suggested adding Plaquenil to my pharmaceutical regimen of Orencia and Arava. My rheumatologist said he felt that my RA was 75% controlled, and that perhaps by adding the Plaquenil we could get to the point of remission.

Remission?!!!

I was in shock. I’d been feeling so frustrated and fearful about my RA, the possibility of remission hadn’t even occurred to me. To be honest, it has been a very long time since I have thought about remission potentially occurring in my future. Shortly after my diagnosis, when I was first put on Enbrel, I hoped that perhaps it would “fix” all my symptoms. It certainly helped, but not enough to push RA out of my daily experience. Nine years later when I got pregnant, I again hoped that I’d be one of the lucky women who go into remission during their pregnancies. However, I was again disappointed. In the past five years, I haven’t considered remission as a possible outcome, in spite of reading the comments of countless people in this online community who say they are in medicinally induced remissions.

Now that my doctor has reminded me of this possibility, I feel at odds. On one hand, I believe in the power of positive thinking, and I have experienced first hand how much stress can exacerbate my symptoms. Believing that I might go into remission seems like a helpful state of mind. Yet, doubt creeps in immediately as soon as I consider the possibility. After 15 years of trying four different biologics, various DMARDS, and all kinds of alternative therapies, I’m still coping with RA on a daily basis. In addition, dealing with the grief of having this disease and the impact it has on my life remains an ongoing process. It feels extremely challenging to work on accepting my reality while simultaneously hoping for a better one. Yet, my rheumatologist’s statement has served as a powerful reminder that it is important to hope. Now I am working on that thin line between allowing myself to hope for remission, while not becoming overly disappointed and frustrated from unrealistic expectations. It’s a difficult balance, and I’m sure it will teeter from time to time as long as I have symptoms of RA.

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.

Comments

View Comments (6)
  • Ivette
    3 years ago

    After reading your article, I had to comment! I’ve only been diagnosed formally for 8 months but the symptoms, pain & inflammation have been around far longer…years.
    I also switched to a new rheum in July when I noticed myself quickly getting worse, not better, with treatment. This new doc prescribed Plaquenil and told me to give it 90 days to see if it would take effect. I had little hope since my symptoms were progressing so rapidly that I’d gone from mild swelling in my toes one day to barely walking with a cane 2 weeks later, despite what my first rheum had given me. I could barely get out of bed, it hurt to simply shower, and my RF results were rising–I was seriously scared at the rapid progression.
    Anyway, in *one month* I was not only off the aids (cane, brace, bandages, constant painkillers), but I felt no stiffness in the mornings, the constant exhaustion was almost totally gone, I was cheerful, and I could easily carry around my 3-year old, something I hadn’t been able to do since spring. I was back to happily doing chores and handling my 5 kids in a way that I hadn’t been able to do in at least 3 years!
    Since then, I’ve had a couple of tiny twinges here and there but they’re NOTHING compared to what I was suffering before. This stuff has worked wonders. No more prednisone for me so far!
    I very sincerely hope that it also works for you. Please keep us updated!

  • Tamara Haag moderator author
    3 years ago

    Hi Ivette, thanks so much for sharing your experience! It’s great to hear that you’ve had such a positive response to the Plaquenil. With five kids to care for, you need treatment that works! I really appreciate you sharing this success story with our community. Wishing you all the best, Tamara

  • Darla
    3 years ago

    Hi Tamara. I enjoy your posts which describe the pain & frustration we all
    experience with our unpredictable RA. I am currently taking Remicade, and
    Prednisone during flares. My doctor added Placquenil last August. Took about
    three months before I noticed less inflammation. Each month I felt better and
    better. Hoping you have full remission.

  • Tamara Haag moderator author
    3 years ago

    Hi Darla, I’m so glad you enjoy my posts. Thank you for sharing your experience with your meds. I’m so glad that your doctor figured out what works for you (and I’m crossing my fingers it will continue to work for me too). I wish you all the best!

  • Patricia
    3 years ago

    Tamara….I noticed you live in Athens GA; my rheumatologist is in Athens. Wonder if you go to the same one. He was treating me with MTX 3 years ago, and told me that he believed I was on the way (90% there) to remission and should add Hydroxycholoquine (Plaquenil)..I did…and yea!! remission!! So far, so good…still in remission and still taking MTX and Hydroxycholoquine.

  • Tamara Haag moderator author
    3 years ago

    Thanks so much for sharing your experience, Patricia. Now you’ve given me more reason to hope! I hope your remission is long lasting.

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