I Resolve to Not Start Another RA Drug This Year – Oops, That Resolution is Already Shot!

Many RA patients receive an excellent response from their RA treatments. But a substantial portion of us, perhaps as many as 30%, struggle to find effective treatments. Roth and Finckh (2009) found that 20-40% of RA patients failed to respond to the popular TNF inhibitors. In one recently published study in China, only 25% of patients achieved remission status (Lu, Li, Zhao, & Li, 2013).1 Such cases are called “refractory” or resistant to treatment. According to Webster’s Medical Dictionary,

“Refractory disease is defined as failure to attain a predefined target, which is now accepted to be remission or, at least, a low disease activity state.” 2

I seem to be such a refractory case and have even been labeled as such by my rheumatologist. I’ve been on 15 different RA medications since being diagnosed in early 2009 (see list below). After two and a half years on Rituxan, its efficacy wore off this summer. That, along with serious infections, was enough for my rheumatologist to recommend switching medications once again. Over the past few years we’ve talked about my running out of choices. One of the last options was the newer oral kinase inhibitor Xeljanz which I started taking last Autumn.

A medical diary kept on my phone demonstrated that migraines began immediately (like the first night) upon taking Xeljanz and continued every day until I stopped. My rheumatologist recommended stopping taking it for a while. The pattern repeated itself immediately when I started taking it again. Migraines got so bad that my neurologist gave me dihydroergotamine (DHE)3 injections in an attempt to halt the pattern. For anyone who’s dealt with chronic migraines, facing untreated RA seems to be a more acceptable, yet damaging choice. Adding insult to injury, stomach pain increased to the point where I was doubled over in pain and was within minutes of running to the emergency room. Given past experiences, my medicine cabinet is always stocked with antacids and proton pump inhibitors like Prilosec for quick use. All these side effects ceased when Xeljanz was stopped. Thus, this medicine made it to “been there, done that” list.

I’m running out of options but don’t want to give up. The last option not yet tried was a biological response modifier called Kineret (Anakinra).4 It is a large protein made via recombinant DNA technology and works by acting on an interleukin 1 (IL-1) pathway involved in inflammatory processes. Kineret is self-injected subcutaneously every day. The possible side effects are typical of many RA drugs and include increased risk of infections and headaches (the bane of my medication life!).

So we’ll see how this 16th RA medication works. If it’s not efficacious or causes intolerable side effects, my rheumatologist indicated that there are some newer medications recently approved for psoriatic arthritis, Ustekimumab and apremilast5, that she might try as an off-label option.

My experience, while maybe not the norm for a large portion of RA patients, is common enough to spur researchers into continuing looking for new treatments and ultimately, a cure. According to Polido-Pereira, Vieira-Sousa, and Fonseca (2011),

“During the last decade we have experienced exciting developments regarding the approval of new treatment options but few patients are reaching sustained remission and refractory patients continue to be a problem. Thus, it is critical to understand how clinicians can decrease the risk of refractoriness by closely monitoring disease activity, using well defined and accepted composite measures, and by early and optimized use of DMARDs, including biologics.” [6]

 

My RA Medications Since Being Diagnosed in January 2009

RA Medication Duration Reason for Stopping
Sulphasalazine oral 1 week Allergic reaction – hives
Methotrexate oral and self-injection 2 years Triggered migraines
Enbrel self-injection 5 months Lack of efficacy
Meloxicam (Mobic) oral 3 weeks Gastritis
Salsalate oral 3 weeks Gastritis
Cimzia self-injection 5 months Lack of efficacy
Humira self-injection 1.5 years Reduced efficacy over time
Orencia infusion 1 year Reduced efficacy over time
Imuran (azathioprine) oral 5 months Gastric pain, nausea
Leflunomide (Arava) oral 5 months Gastric pain, nausea, diarrhea
Actemra (tocilizumab) infusion 5 months Raised cholesterol and triglycerides
Remicade (Infliximab) infusion 6 months Triggered migraines
CellCept (mycophenolate mofetil) oral 6 months Gastric pain, nausea
Rituxan infusion 2.5 years Reduced efficacy over time, recurrent and serious infections
Xeljanz oral 3 months Triggered migraines, Gastric pain

 

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 (16)
  • RA Cellist
    3 years ago

    Weighing in late here … Plaquenil (yes the Malaria med) seems to be picking up the slack for me. Just thought I’d mention it since it’s not on your list? So sorry to see you go through all of this! Keep up the good fight!

  • Andrew Lumpe, PhD moderator author
    3 years ago

    We’ve talked about plaquenil but my doc wants to avoid it since I’ve tried so many other DMARDs without success and it can cause eye issues which I need to avoid since I’ve had RA impact my eyes already. Fight on!

  • Big P
    3 years ago

    Hi Andrew,

    seems like you’ve been fighting RA for a while and you may have already looked into other methods of treating the disease, was wondering if you’ve read Dr. Thomas McPherson Brown and his success in treating patients with long term use of tetracycline(or minocycline)?
    With everything you’ve tried and the almost nil side effects of minocycline it might be worth a shot.

  • Andrew Lumpe, PhD moderator author
    3 years ago

    Hi Big P, I’ve read about antibiotic protocol for RA. You can read an article I wrote about it a while back-
    https://rheumatoidarthritis.net/living/antibiotics-treatment-ra/

  • Sandy
    3 years ago

    I started xyjanez 3 weeks ago and have severe headaches. I didn’t realize it was one of the side effects. I am wondering if I stay on it will the headaches subside or continue. I too have been on many meds and was hopefully optomistic that this would work. Has anyone tried to stay on this med for a time and had the side effects fade?

  • Andrew Lumpe, PhD moderator author
    3 years ago

    Sandy,
    Sorry you’re having the headaches. You should speak to your doctor about any side effects you’re having. I’ve found that sometimes side effects fade as your body gets used to the new med. Hope you get some relief.
    Andrew

  • jerseygirl926
    3 years ago

    I loved your post. Your timing was perfect. My husband and I were sitting in my Rhuemy’s office in November and he simply asked her “Can we ‘not’ try anything new over the holidays?” because he was fed up of seeing me have reactions or fail after a few months. I have Psoriatic Arthritis and Rhuematoid Arthritis in addition to other ailments. The 3rd place winner in my dx contest is Fibromyalgia. Since 2008 I’ve gone thru many of the same drugs you mention. The only luck I had was 6 months of remission on Enbrel. I’ve even tried to return to Enbrel twice a few years later without luck. I really liked learning the new term for failure (medically speaking) from your post because it just sounds better! I will try to follow your progress as I haven’t been offered (yet) your new drug. I am currently on Remicade infusion and we are getting about 50% relief which is why we keep adding things like sulfasalazine (I got very sick – flu like, mouth blisters, and hives the worst). I also have now been diagnosed with chronic hives which I think came from trying so many drugs over the years. There is something to be said for letting nature take its course and I am getting closer to that every month; especially when something fails. Bummer. Best of luck to you on your new med!

  • Andrew Lumpe, PhD moderator author
    3 years ago

    Glad you liked the post. We can commiserate together! 🙂 I’m with you in that there are times when I’ve thought about just not doing anything. But my rheumy keeps having hope and putting out options. Hang in there and hope you find some relief.

  • Nanci Burns
    3 years ago

    Reading about all the problems all of the people on here have had with RA meds makes me even more convinced that I will never take any of those poisons. I’m 55, & the disability determination board looked at my whole life medical history and figured out I’ve had this disease since I was 2 years old, when the disease got activated by my having the Mumps. I mwill live every day the best I can, & I’ll die when it’s my turn. I don’t want to take drugs that make me feel worse, & run the risk of getting some infection that can kill me.

  • Andrew Lumpe, PhD moderator author
    3 years ago

    Nanci, sorry you’ve been fighting RA for so long. 🙁 I encourage you to not give up on, or be afraid of medications. They can be a real life saver when it comes to RA.

  • jan curtice
    3 years ago

    Hi Andrew,
    Are you sure you weren’t reading my medical records? Believe it or not, I actually feel better knowing I’m not the only one that all the meds have failed. I am sorry you’ve had this experience. My PCP and pulmonalogist are pressuring me to switch rheumatologist because they don’t believe he is providing adequate care. I’ve tried to explain to them that it’s not my rheumy with the problem but that the medications that have failed. And oh the wicked migraines, hives, nausea, IBS symptoms, asthma attacks, etc that I’ve dealt with on this journey to seek an effective treatment. My heart goes out to you and my other fellow-frustrated sufferers. Infusions have been ruled out for me. Friday, I started Azathioprine(50 mg). So far, I’ve not see any side effects on the half dose. Hopefully, this will continue when I kick it up to a full dose in a couple of days. All the best. Jan =^^=

  • Andrew Lumpe, PhD moderator author
    3 years ago

    Jan, you’re not alone in this battle of being a refractory case. There are many of us!

  • 2mra
    3 years ago

    Hello Andrew:

    I’m sad and disappointed that Xeljanz didn’t work for you. Gosh, you’ve had a really bad time with the side effects of the medications that you have tried. At least, I do not share that with you.

    I’m resistant to treatments, for sure. Only 6 meds have worked for me in 32+ years. Those are Methotrexate(12 years) Indomethacin(29 years), Gold shots(2.5 years), Imuran(5 years), Vioxx(2.5 years) and Pred(9 years), of course.

    I’ve been putting off using Xeljanz since September but I see my Rheumy this month, so I guess I’m in a corner.

    Thanks for mentioning Kineret. I didn’t try that one, although it’s in the same family as one that I have tried that didn’t work. The other 2 that you mentioned for Psoriatic Arthritis, sound interesting also. Otherwise, there’s nothing left. After trying Methotrexate with Rituxan in 2012, I’m slightly fearful to try any more. I thought that I was dying while on those.

    The very best of luck to you on Kineret and the other 2, if you try them.

  • Andrew Lumpe, PhD moderator author
    3 years ago

    You’ve battling RA a long time! Hope you find something that works.

  • Dave
    3 years ago

    Dr. Lumpe, I am sorry that you have experienced so many side effects from so many different meds. It sure seems like you are running out of options! Hopefully things will change for the better for you. I have been on Humira for about 2-3 months with great results. The results were almost immediate and I am close to being symptom free at this time. However, the last injection caused a reaction at the injection site. it lasted about 3 days and I am waiting on a call-back from my Dr. Hopefully it is not going to be a show-stopper. Good luck on the Kineret.

  • Andrew Lumpe, PhD moderator author
    3 years ago

    Hi Dave, glad that Humira is working well for you. Many get injection site reactions and I hope they stay minimal and you get many years of excellent treatment with it. Andrew

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