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Treatment Uncertainty

About this time last year I switched biologics because the old one wasn’t working for me anymore. While the new biologic never helped as much as the previous one, it did reduce my inflammation somewhat for a time. Now my CRP is elevated, along with feeling worse for a few months, and I’m again wondering if it is time to change treatments.

Looking into different options

When I met with my doctor, he gave me some homework to look up two drug options. I like that he does that because I’m the type of nerd that will dive in and swim through information to learn about a drug’s potential, risks, and side effects. Thankfully, my husband also enjoys this kind of research, so we can compare what we find and discuss.
As I’ve written previously, treatment options for rheumatoid arthritis were very limited when I was growing up with the disease. I’m still adjusting to the fact that I have other options—lots of them. In fact my doctor humorously reminded me: “you know, people change treatments, sometimes often.”

What I would tell others

If I were advising someone with new rheumatoid arthritis, I would tell them to be aggressive with treatments and change frequently (while still allowing time for a reasonable test period) until they find something that helps. But my situation is very different because I have lived with RA for more than 38 years and have extensive joint damage.
My expectations for my medications are to minimize further damage from the RA and manage the disease’s symptoms as much as possible. Nothing is going to reverse the damage with which I live. I’m not going to run marathons, but I would like my pain to be as minimal as possible and my fatigue to be kept in check.

Usually summer is my best time of year, but since spring I have been struggling with fatigue. Sometimes it has been so severe I have missed days at work. Other times I can barely keep myself going through a full day. And I have had more joint aches and stiffness along the way. I’d like to think that I don’t have ridiculous expectations of my treatment—that being more comfortable is an impossible dream. But I honestly don’t know if this just may be the new normal to which I need to adjust.
Outside of some brief months, I’ve never had a CRP result near normal range. It has come down sometimes and I have felt better. But nothing has ever lasted. And we honestly can’t tell if I just have systemic inflammation or active RA. I suppose it could also be a combination of both.
While it may seem like a no-brainer to switch medications, since my current one is not working well for me, I worry even more about trying a different drug that works even less well. Sure, I’m not doing great, but I am hanging in there. Another drug could be a mismatch that results in worsening symptoms. And it takes a few months to be sure! My experience is that it typically takes a month for the drug to get working in my system, but truly three months before I know whether or not it is working. I don’t look forward to the painful passage of time and waiting for improvement.
I’m not in a rush to change treatments, so I’m going to try some lifestyle adjustments to see if they help at all. I’m working on eliminating some stressors and adjusting my diet. I’ll keep up with the exercise. And while I do what I can, I’ll also do my homework and some contemplation about whether it is time to make another change.

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

  • kat-elton
    2 years ago

    Hi Kelly! I’m with you, it is really hard to know when to change things up, especially after decades of disease. I think we accommodate to a new “ normal” and think, “ I can handle this.” I often wonder if my bar is too low for the level of disease control I get, but it is really hard to know ultimately. I think the best thing is to feel good about your decision, whatever it is, and if you don’t feel comfortable with the way things are going, to seek expert advice until you can get there. All the best!

  • JJ
    2 years ago

    I sympathize with you myself as I too have had rheumatoid arthritis for 35 years and after 12 years on Orencia IV, And many months I took higher doses than my weight limit allowed ( as directed ) yet it stopped working. I was devastated because this was the only medication that worked and offered no side effects.Now with a very high CRP and RA vasculitis I must change treatments again. Even more complicating is the fact That I live alone with my sweet little dog I must make these decisions myself. The site is invaluable! Thank you for sharing. Joanne

  • Carla Kienast
    2 years ago

    Kelly: Good luck! It’s a scary thing to decide to change treatment plans. There is no certainty that it will be a change for the better. (Then when it is, we wonder why we didn’t make the change sooner …) I think you’re an example for us all: talk to your doctor, consider your options and make the lifestyle changes that you can. Wishing you a successful path!

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