Adjusting the Meds

It’s always a gamble, a guessing-game to get the medications right. I think of it as a delicate balance. Enough of the drugs to reduce the inflammation and rheumatoid arthritis, but not too much to make the side effects impossible to live with.

Recently, I was in a pretty good place with my combination of medications. Feeling like my RA was well-managed and I wasn’t getting sick or having too many side effects. However, my liver enzymes were hovering just over the high edge of acceptable.

Could we bring down my methotrexate to improve my liver function test results while still keeping me in a functional place with my RA? The only way to know would be to try. Bring on the experiment! I am the guinea pig.

Unfortunately, it did not take long for my RA to worsen. After just two weeks I felt much, much worse. I was more achy and stiff. But the worst part was the fatigue. More than usual exhaustion dogged me from the time I awoke to the end of the day. Not only did I feel terrible and could hardly move or get through my day, my bone-deep exhaustion deprived me of energy. I started thinking: you will never feel better.

I went to get my blood test and my fears were confirmed. My CRP test came back the highest in a few years. On the plus side, my liver was happily back to well within normal range. But I immediately knew I could not go on like this. As the weeks dragged by, I felt worse and worse. My low seemed to be getting lower. It was past time to reach out to my doctor.

In our discussions, my doctor pointed out how my liver test results were so much better and that we had not cut my medication by much. However, I argued that it was making a huge difference in how I felt and my functionality. In the end, I decided to return to my previous methotrexate level and see if I began to feel any better. To me, this was the only piece of my treatment that had changed and so going back was the best way to test.

After a couple weeks, I feel like I’m on my way back to my previous ‘normal.’ I’m not fully there, but I’m having less aches overall and feeling much more energetic. It’s truly amazing how much of an energy-zapper RA can be, even after living with it for so many years.

One of the big advantages of feeling better is that I can do more of my exercises, which helps me to stay healthier and stronger. When I am in such pain that basic movements hurt, it makes it very difficult to do my daily stretches.

This little medication experiment also reconfirms how uncontrolled RA damages not only my body but also my mental and emotional health. Sure, it’s easy to understand that an aggressive disease harms the joints. But it also drains the soul. When RA is flaring wildly, I feel bad about feeling bad. I start to think, this is how it is and will always be. But in reality, I may be able to feel better. I don’t have to feel bad forever if I can find the right balance in my medications and treatment. I have to remember to keep fighting.

While I think this experiment was necessary for my long term health as I have to find a combination of drugs that will treat my RA without damaging other organs, I also can say I did not enjoy it. I’m afraid that I won’t fully get back, but I have to give myself time for the medication to work. I’m also reminded that without effective medications I have a very active and pernicious disease. It seems to have only grown meaner with time and I cannot take my eyes off it. Managing my RA involves constant vigilance and listening to the alarm bells in my body.

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 (9)
  • Lori f
    3 years ago

    I recently had to go off all my RA meds for 9 weeks due to a severe infection. My hands are swollen and my sed rate is up. I am just back on 2 meds for a few days and waiting for the insurance to approve a new biologic. I noticed I was tired but did not think about attributing the fatigue to RA. Thank you for this article that made me think.

  • Kelly Mack moderator author
    3 years ago

    Hi Lori, really glad the article was helpful. Hope that you are feeling better soon on the new biologic. Take care! Best, Kelly (RA.net moderator)

  • SofiaRA
    4 years ago

    I was diagnosed with RA three years ago, and have not been in remission yet. I have tried DMARDS, and now am starting my 4th biologic. I have been getting progressively more tired, to where I have to sleep 12-14 hours on the weekends. Kelly, I am glad to hear that with your medications you are not as fatigued when the medications are working for you. It gives me hope. I have had one rheumatologist who told me the fatigue will never improve. My current rheumatologist said it is usually the last symptom to improve which is disheartening. I have been working full-time, but feeling like this I won’t be able to do it much longer if we can’t get the disease process to slow down.

  • Kellie
    4 years ago

    I have just started my third biologic. The time off of meds in between is awful. I personally would continue the meds even if my liver enzymes were bad. The quality of life is almost nothing during a bad flare. I don’t want to live my life in unending pain.

  • Kelly Mack moderator author
    4 years ago

    Thanks Kellie. I lean toward your view. Quality of life is just too low when the meds are not working. Thankfully, I am doing better now, but it has been a tough road sometimes. Best, Kelly

  • jaide winn
    4 years ago

    Kelly, thank you for your article, it definitely hits home for me. I have had to change biologics 3 times because they don’t work or side effects. The whole ordeal of changing medications is very stressful. Also, I am having neck surgery next week, and the surgeon’s office just demanded that I come off my Prednisone along with all my other RA meds, so I started tapering off the Prednisone, well at about a week of decreasing it, I couldn’t get out of bed because the pain was so bad. I called the surgeon’s office and she was less than sympathetic. She finally told me if we got approval from my rheumatologist that it would be ok to stay on it. My rheumatologist was fine with me staying on it and said that I should never have even thought about coming off of it. Yes, I had talked with him about it earlier, but it must have gotten overlooked. But, just having to change it all around for 2-3 weeks is so frustrating. Unless, your live it, you just don’t understand it. And, it is amazing how when the pain gets worse, then the fatigue triples. I worry about the meds damaging my liver and kidneys, but it comes down to “quality of life”. We live in constant pain everyday, but when it reaches a 10 and you can’t get off the couch, then that is NO quality. Good luck and I hope things get better for you.

  • Kelly Mack moderator author
    4 years ago

    Thanks Jaide. Totally agree, sometimes people just don’t understand how important the meds are for managing the RA and having a quality of life. I wish that your surgeon and his office had been more thoughtful about this, but am glad you got the support you needed from your rheumatologist to stay on the prednisone. Best, Kelly

  • Carla Kienast
    4 years ago

    Kelly: Like you, I recently had to stop leflunomide and another drug because of liver enzyme levels being out of normal. Also like you, my latest labs show my liver results are great, but I feel like I’ve been hit by a truck. I also started on a new biologic and it’s probably too soon to be working effectively so I’m not getting any relief there. Let’s hope that both of us find that magic balance.

  • Kelly Mack moderator author
    4 years ago

    Hi Carla–really hope you are feeling better soon. My meds are starting to work better and it has made a huge difference. Thinking of you–Kelly

  • Poll