When Nothing Works
In August of this year, my doctor finally convinced my insurance company that the traditional TNF blockers like Simponi, Enbrel, and Humira weren't working for me. She prescribed Orencia. It is a once-a-month infusion, and finally - FINALLY - something is working! Is it a perfect cure? No. But I have been able to wean off steroids - I took my last 2.5 mg dose last week. It is taking my body some time to get adjusted to not having that Prednisone boost, but this morning, I woke up with a bit more energy and a bit less stiffness. However, I have been through a year-long odyssey of unabated pain, swelling, and joint deterioration. I started writing about it in July of this year, but it was too depressing to continue, so I let it go. During that year of extreme fatigue and pain, I almost believed that I would never get better; that the dark hollow I found myself inhabiting was the extent of my life. Thankfully, it was not - but I know that there are more valleys and hollows ahead. That's the truth of autoimmune diseases, and all chronic conditions. Those of us who suffer with them do not have the luxury of assuming support, comfort, and that the medications we are prescribed will improve our health. Below is a short segment of the past year's journey with this hateful disease:
Everyone with a chronic autoimmune disease faces this question at some point: What do I do when nothing works? I take my medication as directed, I eat healthfully, I get lots of sleep (sometimes more sleep time than awake time). I exercise as I am able. But right now, none of that matters, because nothing works.
In October of 2017, I came down with pneumonia. I was out of work for a week - and if I'd had the sick time built up, I'd have been out longer. It took six weeks to clear the cough and infection, and during that time, I could not take my Humira injection. Though I started using the medication again as soon as possible, it just no longer worked to treat my condition. At one time, Humira was an excellent treatment for me, so I held on to hope that it would start helping again, once I got back through the load time. However, by February, it was obvious that Humira just wasn't doing it anymore. I talked to my rheumatologist about it, and she said we would give it three more months (ugh - I'd already given it three months with zero relief) and then we would make a change, possibly out of the TNF class of medication and into the next level of biologics.
In March, I had another bout of pneumonia. It took about three weeks to be diagnosed properly, and by the time that happened, I was acutely ill. I missed more work, ran completely out of sick days, and was off medication for another six weeks. When my next appointment came around, the rheumatologist agreed it was time to switch to Orencia. Orencia (abatacept) works differently from TNF blockers, which are the only biologic medications I have used. The doctor was optimistic that a change into a new class of medication would make a real difference for me. However, my insurance company decided they knew better, and required that before I could step up to the next class of meds, I had to try one more TNF agonist; Simponi Aria.
Well. I have a friend who takes Simponi Aria, which is the infusion form of Simponi (golimumab), and her experience was very good, so I wasn't entirely against trying it out for myself. Simponi Aria is delivered via a 30 minute infusion at the rheumatologist's office. It is extremely expensive - $11,000 per treatment - but once the loading phase is over, the treatments only happen once every eight weeks. I started Simponi Aria in April of this year. Now it's July, I've had my third treatment, and guess what: It isn't working.
So what do you do when nothing works? I have no idea what you do, but I take steroids. I hate steroids, but since October of '17, they've been the difference between functionality and complete disability. They make me irritable, they make my stomach hurt, and depending on whether I am able to be more active while on them, they make me gain weight, especially around my face and stomach. Just what I need - more weight for my bad knees and hips to drag around, more baggage for my self-esteem, which is already stunted enough, thank you.
Years ago, I worked hard to lose 130 pounds - it was a life-changing step for me. I felt so healthy, so vital - all that work and effort has been stymied by this damn disease, which makes it impossible to get vigorous exercise. The pain and weakness in my hands, wrists, elbows, and shoulders make it very hard to put in the effort to cook healthfully, and too often I end up eating something processed, with too little fiber and too much salt and sugar. I have not regained all the weight I lost, but I have regained about half of it, and I feel smothered and dragged down by every extra pound.
This is the reality of autoimmune disease. People make assumptions about this kind of illness - "oh, it's just arthritis, my grandma has that" or "you're too young to have that, it's an old-folks disease" or "try eating gluten-free" "take tumeric" "use hemp oil". Look folks, I get that you're trying to help, but do you really think that I haven't tried everything I can think of to get better? I've lived with this for five years now. If it's out there, I've tried it. If there was an easy cure for this f*cking disease, I'd be well by now.
Everyone with a chronic autoimmune disease faces this question at some point: What do I do when nothing works? I take my medication as directed, I eat healthfully, I get lots of sleep (sometimes more sleep time than awake time). I exercise as I am able. But right now, none of that matters, because nothing works.
In October of 2017, I came down with pneumonia. I was out of work for a week - and if I'd had the sick time built up, I'd have been out longer. It took six weeks to clear the cough and infection, and during that time, I could not take my Humira injection. Though I started using the medication again as soon as possible, it just no longer worked to treat my condition. At one time, Humira was an excellent treatment for me, so I held on to hope that it would start helping again, once I got back through the load time. However, by February, it was obvious that Humira just wasn't doing it anymore. I talked to my rheumatologist about it, and she said we would give it three more months (ugh - I'd already given it three months with zero relief) and then we would make a change, possibly out of the TNF class of medication and into the next level of biologics.
In March, I had another bout of pneumonia. It took about three weeks to be diagnosed properly, and by the time that happened, I was acutely ill. I missed more work, ran completely out of sick days, and was off medication for another six weeks. When my next appointment came around, the rheumatologist agreed it was time to switch to Orencia. Orencia (abatacept) works differently from TNF blockers, which are the only biologic medications I have used. The doctor was optimistic that a change into a new class of medication would make a real difference for me. However, my insurance company decided they knew better, and required that before I could step up to the next class of meds, I had to try one more TNF agonist; Simponi Aria.
Well. I have a friend who takes Simponi Aria, which is the infusion form of Simponi (golimumab), and her experience was very good, so I wasn't entirely against trying it out for myself. Simponi Aria is delivered via a 30 minute infusion at the rheumatologist's office. It is extremely expensive - $11,000 per treatment - but once the loading phase is over, the treatments only happen once every eight weeks. I started Simponi Aria in April of this year. Now it's July, I've had my third treatment, and guess what: It isn't working.
So what do you do when nothing works? I have no idea what you do, but I take steroids. I hate steroids, but since October of '17, they've been the difference between functionality and complete disability. They make me irritable, they make my stomach hurt, and depending on whether I am able to be more active while on them, they make me gain weight, especially around my face and stomach. Just what I need - more weight for my bad knees and hips to drag around, more baggage for my self-esteem, which is already stunted enough, thank you.
Years ago, I worked hard to lose 130 pounds - it was a life-changing step for me. I felt so healthy, so vital - all that work and effort has been stymied by this damn disease, which makes it impossible to get vigorous exercise. The pain and weakness in my hands, wrists, elbows, and shoulders make it very hard to put in the effort to cook healthfully, and too often I end up eating something processed, with too little fiber and too much salt and sugar. I have not regained all the weight I lost, but I have regained about half of it, and I feel smothered and dragged down by every extra pound.
This is the reality of autoimmune disease. People make assumptions about this kind of illness - "oh, it's just arthritis, my grandma has that" or "you're too young to have that, it's an old-folks disease" or "try eating gluten-free" "take tumeric" "use hemp oil". Look folks, I get that you're trying to help, but do you really think that I haven't tried everything I can think of to get better? I've lived with this for five years now. If it's out there, I've tried it. If there was an easy cure for this f*cking disease, I'd be well by now.
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