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Waiting Game

When I finally decided to make the latest treatment switch, my doctor warned me that it could take a while for the new medication to kick in. He asked if I had enough prednisone to supplement if I should start feeling really bad and reminded me not to hesitate to call him if I needed. The last time I changed medications, I was still taking methotrexate. This time, I would be off all the old medications (except a small dose of daily prednisone) and on my new drug. I knew that it would be rough, but I didn’t anticipate how difficult it would be.

The first two weeks were OK. My old medications were still in my body, making their slow escape. While the medications were not as effective as I needed them to be, they did help because I felt a ramping up in my discomfort the longer it had been since my last dose. Week three started to get difficult with increasing aches and stiffness. Then weeks four, five, and six hit me like a ton of bricks.
It felt like trying to walk through molasses, while someone simultaneously squeezed all my joints in a vice. I was in a lot of pain and felt like I couldn’t move. And the fatigue drowned my mind. I had little energy and couldn’t think very well.

Prednisone: a necessary step in treatment change

Using my doctor’s guidance, I increased my prednisone. It didn’t help much at first, but after a couple days the symptoms improved slightly. In retrospect, I should have increased my prednisone more and earlier. It helped me to get through the days, although I wasn’t at peak performance. Unfortunately, I had some bad luck in that when I was feeling the worst we had a huge cold front move in and linger. It felt unrelenting-my rheumatoid arthritis flaring and the cold bearing down on me like one thousand sharp knives. It was a terrible combination.

I had to cancel plans and minimize my activity. I had to save energy for going to work and getting by with the daily necessities. My husband helped to keep me going and listened to my griping about feeling terrible. I kept ticking the days off one by one. Thinking about how the new medicine was building up slowly in my system. That one day I may feel just a little better and that it may build until I felt a little more like myself.

Pain: My constant companion

The pain was always with me, but sometimes it was sharper than others. The fatigue was like an ever-present fog. I woke up with it and had a hard time getting started. Sometimes I wanted to doze in the middle of the day, sitting up, while I was doing something.

I started to worry that the new medication may never work. That I may be stuck in this limbo. How long could I bear it? Was it too late to turn back and shout: “just give me the old drugs back!”
But I needed to play the waiting game. The hope was to feel better, to find a more effective treatment that helped me with my quality of life. I am hoping to do better than just scrape by, day by day.
I started to feel the pain lift after six weeks. My joints became bone again, instead of feeling like sharp shards. I could move without pain. I didn’t feel the constant ache throbbing inside my body like a second heartbeat. The fog started to fade.

Now at two months, I have solid progress and hope. If I can gradually improve, this treatment will be beneficial and I will have won the waiting game.

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

  • bremgartner
    2 years ago

    I am amazed how closely I am tracking to your story. Unfortunately I am in week 4 and just took my first dose of my new med so I have a few weeks at minimum to start feeling better.

  • Kelly Mack moderator author
    2 years ago

    Hope you are feeling better! Regards, Kelly

  • Lawrence 'rick' Phillips moderator
    2 years ago

    I do not know what the switch is to and form but I think I have been on this road before. Oh heck after 7 of these heavy hitter drugs, I have been on most of the roads.

    Really what I want to say is that last year I spoke to a group of PBM employees and my message was that we do not make these medications changes lightly. They looked aghast. I believe they thought we do this without weighing the pros and cons.

    When Is aid my doctor and I talk about changes between 6 and 12 months before I jump they were shocked. Instead I believe they thought we show up one day and get the med the next day. Psst, obviously they do not have RA.

  • Kelly Mack moderator author
    2 years ago

    Rick, I am so surprised that health professionals don’t understand the amount of care and consideration we take in medication changes. That is frustrating! I am glad that you helped to educate them about how much work and thought goes into being a patient. Best, Kelly

  • 2mra
    2 years ago

    Yes, we all dislike these waiting games but we hope for a possible remission or even feeling three quarters way better than we did before.

    I’m happy that you are past the six weeks and feeling somewhat better Kelly. It sure sounded rough. Best wishes for further success in pain and fatigue relief and hopefully, a remission.

  • Kelly Mack moderator author
    2 years ago

    Thanks so much for your encouragement and support! Best, Kelly

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