Hope and Trepidation: Starting A New RA Med

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I feel both hope and trepidation as I start the new JAK inhibitor, Xeljanz (pronounced zel-jans). This isn’t the first time I’ve felt this way. I’ve always been a bit uneasy starting other treatments for RA from the DMARD (disease modifying anti-rheumatic agent) to the  biological agents. Many of these drugs are chemotherapy or chemotherapy-like with terrible side effects that make you think twice before taking the medication. The trepidation felt in taking such a dangerous medication is held in check by the hope that maybe this is the drug that will work to stop the pain, control the inflammation, and slow down the joint destruction.

I know I’m not alone. Many of you have started a new RA medication and have cringed when you read  the words “life threatening” to describe some of the side effects associated with the medication. Some of these side effects are caused by lowering the immunity of your body to fight infections that would otherwise be harmless. Sometimes the life threatening side effects can be cancer brought on by use of the medication, such as lymphoma. What the general public does not know is that we gladly take these medications because we want to be better. We want some semblance of our old lives back and if there is a slim chance the medication can do that for us we will forgo the side effects. Where I think most rheumatoid patients get in trouble, is that they have false expectations of the medications. I know that I did in the beginning. As I’ve stressed in previous blog entries, you must get the pain under control before deciding if the drug is working or not. In some cases you may not know if a drug for RA is therapeutic until you’ve been taking it for 3-6 months and then the only improvement is in your lab work, especially for someone like me who is sero-negative. The only measure that any biological agent or DMARD has had an impact on my disease process is by measurement of the CRP and ESR on labs…. not by the way I felt because pain screamed louder than any other symptom.

Xeljanz will be added to the long list of medications I’ve taken during the last four years since I was diagnosed. This medication is unique in that it is the first of its kind that works on the JAK pathway and it is only recommended for those with moderate to severe RA. My rheumatologist had me sign an informed consent before prescribing this medication. I have a new rheumatologist and this is the first time I had to go over a consent form before being allowed to try a medication. For those of you who may not know, an informed consent is a legally binding, medical form that most sign before surgery that states that you understand clearly the risk of the procedure. The informed consent for Xeljanz was four pages long with most of the type face in bold print so that I clearly understood the “life-threatening” side effects of taking this drug. Just getting a common viral infection that is carried in the public could kill me while taking this drug. Several malignancies have been observed in patients with Xeljanz with the worse being lymphoma. The consent says in part, “In seven controlled rheumatoid arthritis clinical studies, 11 solid cancers and one lymphoma were diagnosed in 3328 patients receiving Xeljanz with or without a DMARD, compared to 0 solid cancers and 0 lymphomas in 809 patients in the placebo with or without DMARD group during the first 12 months of exposure. Lymphomas and solid cancers have also been observed in the long-term extension studies in rheumatoid arthritis patients treated with Xeljanz.” Still the hope that is drug will be the one to give me my life back prevails and I am willing to take that risk. That should speak volumes to the casual observer of this disease from the side of wellness and should wipe away any doubt to the seriousness of the disease and the degree of suffering one experiences; that I would risk my life for hope. It’s not “just arthritis” it’s my life.

Xeljanz is designed to work deep inside the cell on the Janus-associated kinase (JAK) inhibitors. This differs from other treatments like biologics and DMARD agents because these agents work from the outside of the cell where Xeljanz works inside the cell. Deep inside the cell, Xeljanz works to disrupt cytokines along the JAK pathway that are involved in the inflammation of RA. In a study of 3000 patients, 59% of those who received Xeljanz alone responded to the medication which is very hopeful! Some patients began to benefit within two weeks of treatment.

Xeljanz is administered in pill form, twice a day. For the first two days, the medication did upset my stomach. I have gastric reflux. I did experience some extra tiredness, but nothing else. It’s too soon to tell just a few days into the treatment if Xeljanz will work for me. Because of the dangers associated with Xeljanz I will need to have labs drawn every 3 weeks to make sure that my white blood cells, neutrophils, hemoglobin, lipids, and liver enzymes stay within a normal range. If at any time the Xeljanz causes unacceptable ranges in my lab work I will be taken off the medication.  Since this medication is so new, there could be untold effects of long-term use that the researchers are not even aware. Again, those of us with RA do not take these drugs lightly. Much thought and consideration of all the outcomes is weighed heavily.

I am a Christian and I place my hope in Christ. I’m praying that he will use Xeljanz and the team of doctors I have working on my case to halt this progressive disease and to give me back some quality of my life.  This is my last chance to try a medication that is not administered intravenously. Should Xeljanz be a failed medication for me we will move on to the IV drugs. If you believe in God and the power of prayer, would you support me in prayer that this time? Your support in prayer would be most appreciated.

If you would like to learn more about Xeljanz, you can visit their webpage at http://www.xeljanz.com. If you are being prescribed Xeljanz and have insurance, please take advantage of the co-pay card at their website which will take care of your co-pay amount for this drug up to $8000 per year. If you are not on Xeljanz but some other biological agent or DMARD and are struggling financially to pay for these medications, please check the drug webpages. Most of the pharmaceutical companies that make these very expensive drugs do have some sort of co-pay plan or a program for the uninsured.

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2 responses »

  1. Good and Gracious God, please help Mischelle on her journey to better health. Please help her medical team to find the right medication for my friend, and if at all possible, may it be Xeljanz. We thank you, and we praise you, dear Lord. Amen.

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