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The “My Meds May Not Be Working Anymore” Panic

The “My Meds May Not Be Working Anymore” Panic

Anyone who suffers from RA is familiar with the way the disease is treated. We go through a trial and error period, sometimes taking years, until we find a medication that works well enough to be worth the effort. Rheumatoid Arthritis isn’t alone in this treatment protocol, but where our illness does differ is that there is no guarantee that the solution we find will last forever. In fact, most times it doesn’t and when you start to sense you may be reaching the end of the road with a certain drug, a very unique type of anxiety starts to set in – the “my meds might not be working anymore” panic.

Finally finding RA medication that worked

Like many others who suffer from RA, it took me a while to find something that gave me relief from my particularly aggressive form of the disease. Now, when I say “a while,” I mean it – somewhere in the ballpark of twenty-five years. That’s a quarter of a century.

My doctor, God bless him, never gave up trying and, after a particularly nasty bout of pneumonia and a two-month stay in the hospital, he recommended the medicine I’m currently on and it worked. It just worked, no strings. It was a minor miracle and I was thrilled to finally be getting some relief. I mean, I knew in the back of my mind that it would probably stop working someday but that was a tomorrow problem.

My medical conditions were under control

Fast forward to a few months ago when I finished up with chemo I was receiving for a lymphoma diagnosis and I was ready to get back to my life. RA under control, no cancer, no side effects, no problems. God, it was a welcoming feeling to reach that finish line. It had been a long hard crawl, but I had made it and came through with flying colors. It was an unequivocal win, and I suppose that should have made me suspicious because nothing with this illness is ever such a clear cut success.

The return of RA symptoms

About a month after the chemo ended I began to wake up with morning stiffness worse than I had in years. I chalked it up to the exercise I was doing to regain some of the muscle mass I lost with cancer. That worked for about a week and, when the stiffness kept getting worse, I thought maybe I was eating or drinking something that was messing with my system.

Trying to figure out why these symptoms returned

So, I revamped my diet and kept track of everything I was putting in my body for the next month or so. Unfortunately, no matter what I tried, I couldn’t seem to discover anything that was causing my symptoms. Then I thought maybe my injections weren’t being absorbed due to years of scar tissue build up in the injection sites. To counteract that possibility I began injecting into a new area, one I had never used before.

Has my RA medication stopped working?

That brings us to today. After a week or two of trying a new injection site, I’m still feeling the same symptoms – symptoms that are unmistakably indicative of an RA flare. Its been almost ten years since I felt like this, and I can tell you one thing – it’s terrifying. I’m not ashamed to admit I’m panicking just a little bit because at this point there can really only be one reason for my deteriorating condition – the medication that has let me live a normal life for a decade is starting to fail.

What will happen if this treatment stops working?

I want to cry every time I stop and think about the consequences of coming to the end of this particular treatment. Life before was awful – I could barely get out of bed some days and even the good days were nothing compared to a good day on meds that worked. I actually got to ride a bicycle last summer! That was something I’d never thought would be possible, and it was liberating. Now, though, as I sit here and write, the demon cousins of anxiety and disappointment are right behind me and I’m digging deep, running, running, running, to make sure they don’t catch me. All my joints are hurting, I’ve got that “low-grade fever ache,” and every time I move I wince in pain.

I hoped that the medication would’ve lasted longer

What makes all of this worse is that it has been so long since I’ve felt this way that I’d finally forgotten that almost all RA meds inevitably stop working. I had begun to believe, at long last, that against all odds my doctor and I had found the right key to my particular RA lock, and that all I had to worry about now was dealing with the damage the disease had already done. It’s as if the illness waited until I had the most hope, the most optimism, the most excitement for the future, and then said “Ok, time to bring the ceiling crashing down.” That’s RA though – it always hits you when it will do the most damage. It waits until you are strongest and then rips your heart out to show it to you before it stomps it into the ground.

Bracing myself for what is next

Here I am now, trying not to let the panic take hold. I keep telling myself that I’ll deal with whatever comes, as I always do, and that if I have to get back on the medication merry-go-round, yet again, so be it. I had almost ten good years – that’s more than many RA patients get in a lifetime. It was a gift and I hope I used it well, but it’s going to be difficult to say goodbye to that relatively care-free life. I just keep stopping to look up and say “God please no.”

I have a doctor’s appointment next week so that is D-day, and when we storm the beaches this time I hope we can pull out an unlikely win just like the real D-day heroes. Anyway, sorry no humor this time… I wasn’t feeling it? Next time, I promise. Talk soon.

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

  • Mary Sophia Hawks moderator
    1 month ago

    Oh Daniel, I am so sorry! Thank you for writing with your whole heart. So many of us feel this way and are afraid to own it.
    I recently went through this myself and I identify with so many of your feelings. To have this happen after completing chemo stinks! I pray that your MD visit went well, and that your medication merry-go-round is a short ride this time. There are so many new medications now.
    May you be blessed as your soldier on!
    Mary Sophia

  • Daniel Malito moderator author
    1 month ago

    @c7mv96 Of course! As difficult as it is to write about it because, in essence, you are making your fears solidified, I feel like I couldn’t be the only one who felt this. Thanks for the support and for reading. Keep on keepin’ on, DPM

  • B.Hughes
    2 months ago

    Daniel
    I’m so sorry to hear this is going on in your life.Yes it’s a never ending roller coaster ride and when it goes down you do have that sick feeling in the pit of your stomach. The anxiety of what is next is too much sometimes. What I have read from your posts though you are a fighter but even fighter’s get knocked down sometimes. We just have to get back up and fight even harder the next round.My prayers are with you friend and I hope the best for you.

  • Daniel Malito moderator author
    1 month ago

    @b-hughes Thanks for the support, and yes, you have to keep getting back up and fighting – I mean, we don’t have much a choice sometimes, do we? Fighting harder is our specialty! Thanks for reading, keep on keepin’ on, DPM

  • CynthiaV
    2 months ago

    Daniel, once more you have given voice to a fear we all know too well. We always seem to live in the shadow of the dread this disease causes but the dread of losing the efficacy of a once “miracle” treatment and to be cast into the great unknown again is particularly devastating. I pray you and your rheumy are able to find your next miracle and your suffering soon abates.

    In my 20+ years of RA and Fibro I have been through every class of meds out there. Some never worked, others worked slightly and yet others were lifesavers. Sadly, we all know that RA will eventually find a way to change the lock so the key won’t work anymore. I too am facing that reality when I visit my rheumy tomorrow. That he maintains his optimism for me is a great comfort to me. He never gives up and won’t allow me to either though it is not always easy. I thank God that new meds are becoming available all the time. We are truly blessed to be living in such a time. Just a 3-4 decades ago there was so little help and hope. Perhaps even now a cure will be found.

    Congratulations on beating cancer. You are already a winner. Don’t give up. I know you won’t. God bless you.

  • Daniel Malito moderator author
    1 month ago

    @cynthiav Yeah, that fear of losing a medication that works I think is certainly universal. I know it was something I always had in the back of my mind and just when I started to forget – bam. I suppose that’s RA in a nutshell, though. Thanks for reading and for the support. Keep on keepin’ on, DP<

  • Dolores
    2 months ago

    Blessings to you, been there done that, knowing meds working today may not be working next week…after a couple of times going thru it these past 30+ years, I know to not let my hopes get too high. I’m thankful for the time meds do work and I still have hope that treatments in the future will help even more or for longer or they even find a cure, if not in my time, at least for those who will be here when I’m gone.
    Don’t lose hope just make your hopes more realistic for your situation and issues!
    And smile it does help the soul and spirit
    Sincerely Dolores

  • Daniel Malito moderator author
    1 month ago

    @dolores It certainly does help to smile and have a positive outlook, although it is hard work at times. We fight off the despair as best we can, though, and we are all pretty good at it. Thanks for the kind words and for reading. Keep on keepin’ on, DPM

  • Paula Jayne White
    2 months ago

    Daniel– You couldn’t be more spot on. I had the WORST time going back to my RA meds following cancer treatment. I went back on a medication that had been working well pre-cancer– and then had an anaphylactic reaction to it. So back to the drawing board we went. (sigh) It’s so frustrating. Keep up the good fight, friend.

  • Daniel Malito moderator author
    1 month ago

    @paulajaynewhite Thanks so much for your kind words. Even after 30+ years of RA it is comforting to know that I’m not the only one who experienced this. I’m at the point now where I have to decide to live with it or get stuck on another medication trial and error road. Ugh. You know. Thanks for reading. Keep on keepin’ on, DPM

  • 2mra
    2 months ago

    I’m sorry that you are disappointed and sad AGAIN Daniel. Most of us have been there far too many times also. We are with you. Don’t worry about comedy. Nothing funny about flaring RA.

    I am a bit envious of you(I know, it’s a sin). I’ve never had a med work that long for me. That’s awesome!! The longest mine worked was a little over 5 years and then my youngest brother died and that was that. I suffered the next 12 years straight and cried every time I woke up or had to move my body cuz the pain was excruciating.

    I do wish you much luck finding a new med that will put you in full remission. Maybe you will find it next
    week while having your Rheumy visit.

    As you probably have heard, Abbvie has another RA med, (Upadacitinib) Jak1 selective inhibitor. Not sure if it has been approved yet. I’ll be asking my Rheumy first week of Aug. Or you could ask yours.

    It probably won’t work for me. I was on Xeljanz, another Jak 1, and it worked great for 3 months. Then I was taken to the hospital with Sepsis and they took me off of the Xeljanz.

    Anyways, good luck at your appointment and Best for your future.

  • Daniel Malito moderator author
    2 months ago

    @hwb0w4 I did hear just last week about some of the new meds, but I’m still holding out hope, maybe stupidly, that this is just a hiccup that will pass. It’s at yet another time in my life when I’m the cusp of breaking through with my writing etc, and I’ve been here before. I can’t let it ruin things for me again! 🙂 Thanks for reading, and for the support. Keep on keepin’ on, DPM

  • Carla Kienast
    2 months ago

    Daniel: I looked in the dictionary and there you are under the definition of “patient warrior”. It is indeed scary, but you’ve been there, done that and have the tattoo to prove it. Having a battle plan (with your doctor) will help you marshal your resources for this next phase. Remember — you aren’t alone. You have an army of us behind you!

  • Daniel Malito moderator author
    2 months ago

    @ckienast Carla, thanks so much. You and I go back a while, don’t we? Thanks for the support, you always do know the right thing to say. Keep on keepin’ on yourself, DPM

  • Casmere
    2 months ago

    Daniel, you have every right not to put humor in especially in the commentary. My heart goes out to you with all you have had to face over the many years.RA Lymphoma and the many surgeries plus plus. I pray they find a new medication soon that will work for a long too. Blessings to you.

    Prays and blessing to all
    Casmere

  • Daniel Malito moderator author
    2 months ago

    @casmere Thanks, but I know people expect the humor when they read my posts. It just wasn’t in me this time, it’s a serious issue for me. Thanks for reading, and I hope it’s just a hiccup. Keep on keepin’ on, DPM

  • Lawrence 'rick' Phillips moderator
    2 months ago

    Daniel, I attended the annual meeting of the PBM industry once and i was on a panel discussing RA medications. One of the participants said that with so many options int he RA space, he felt that patients were not giving new medications the benefit of the doubt and that we were to quick to change. I came up for air.

    I reminded the audience of the misery of what happens in our life when the RA medications do not work. but then to say we woudl abandon one that work because we saw some stupid commercial just blew me away. We are married to our medications and we never burn one without over justification.

    I think at least one of the members of the audience got slightly educated.

    Oh who am I kidding he forgot the minute he sat down.

  • Daniel Malito moderator author
    2 months ago

    @lawrphil LOL true, I seem to always run into places like that at conferences. People you think won’t be surprised and are and you’re right, we are married to our meds and want nothing at all to change for fear of invalidating the meds. Let’s hope it’s just a hiccup. Keep on keepin’ on, DPM

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