My Biologic Has Failed
Since being diagnosed in 2017, I have tried all of the usual RA/RD treatments. We started with MTX (oral route), then went to triple therapy, then moved my MTX from oral to sub-Q injections every week. I was not getting enough relief, and in January 2018, I was approved for Humira, and I thought to myself, "Finally, I have a real weapon in my tool kit to take this monstrous disease of RA/RD out." If only that were the case...
My journey of multiple biologics
Throughout 2018, I had a series of flares, especially when we were in Minnesota over the Summer and it was so hot and humid. I could not seem to find relief, even in our in-ground pool. I rode my motorcycle about 10 times, and even after that I was struggling afterward with joint stiffness and pain. Add to the fact that I have Fibromyalgia, and everything would hurt almost simultaneously. I never got to enjoy that Summer, and called it my Summer Bummer. I was actually glad to close the pool for the last time because it meant no more hard work to keep it clean.
Feeling a little hopeful
I came out to Denver to interview for a job in October, and then headed up to Fort Collins to visit with my parents since the hiring company was paying for my flight. In the meantime, I worked to get an interview with a company in Fort Collins, and finally found out on Saturday of that weekend that I would have another interview on Monday. I changed my flight, and thought "this is going to be huge because every time I come to Colorado, I feel better.” I was hired by the second company, and moved out to Colorado in November of 2018.
That hopeful feeling didn't last long
I never really got the relief I expected. My RA/RD moved around my body to all kinds of annoying places – my feet, my knees (even though x-rays show no damage whatsoever – they look like perfectly normal knees), my hands became like sausages (beer brats, not those Lil Sizzlers you can buy), and I was generally uncomfortable all the time. I stayed as active as I could, but who can go for a walk when you have peripheral neuropathy that hurts so bad you can't make it half a block without heading home (and wishing you didn’t start out to begin with, because now you have to walk that half a block home).
I even became more active as I started playing guitar for my church, which was always the place I could go and not experience pain. There is something to be said about therapy which takes your mind off your pain and focuses it somewhere else. Music did that for me, and I was never in pain when I was playing – either at rehearsal or on the platform. I figured all of this would help.
But it didn’t. And I was starting to suspect that my Humira was no longer providing any assistance for me at all.
Yet life must go on…
I still had to go to work, though that was becoming increasingly difficult. I have chores around the house, and my loving wife has taken on a lot of that, and I have taken on paying bills, calling contractors, etc. Since I saw my rheumatologist last in early September, I was either working from home or out sick every single day. It was getting to the point I was considering going on short-term disability. I was also prepared to start using an old cane from my mother-in-law, in the hopes I could be more mobile. I was absolutely miserable, and September is much of a blur of pain, self-pity, and anxiety.
A productive conversation with my rheumatologist
So last week, I finally broke down and admitted that I was no better here after the move, after the new job, etc. I made an emergency appointment with my Rheumatologist, and put it all out there: My morning stiffness was lasting over an hour on most days, sometimes up to three hours, I need more steroid injections in my SI/PSII joints, I cannot do what I expected to be able to do. All the x-rays I have had taken have shown nothing truly out of the ordinary, save for bone erosions in my hands and feet, and the obviously peripheral neuropathy. So at least I don’t have any major deformities, but why did I feel crappy every day of the week? We checked everything, including labs, for any kind of clue. No dice.
Making the switch to a new biologic
We finally decided to switch to a new biologic. I start it on Friday. These are infusions instead of at-home shots, so there is less privacy, but there is more opportunity to modify the amount of medicine I receive to ensure I am getting the right dose – one that relieves symptoms, yet does not increase side effects. Since I’ve never had an infusion, or this new biologic, I have no idea what to expect. I do know it will be at my Rheumatologist’s office, and I am generally happy there.
Putting a plan in place for the pain
In the meantime, what could I do for my pain? It was becoming unbearable, and I had nothing in my arsenal to deal with it. I take Meloxicam already, and increasing that has never really done anything. I had Tramadol from a previous doctor, but all that did was keep me awake at night. The clinic I go to does not prescribe narcotics, and I was left to my own devices. They did suggest going to my PCP to see if they could help. So I arranged another appointment that same day.
Turns out Colorado is pretty strict with narcotics. I don’t want to become an addict any more than anyone else, but I was at my wits end. I was given one week’s worth of Vicodin (except I only had two per day, and they last about 4 hours, so I had to decide when it was most important to take them). Apparently only prescribing one week at a time is required in Colorado for first time prescriptions. So I take my meds very carefully, hoping to find the magic time that relieves the most pain and doesn’t leave me in dire straits at night. I go back to see my PCP on Wednesday, hoping he can see the small difference that made in my life. I am not someone who seeks out drugs. But I am beyond my pain threshold.
Feeling hopeful about relief again...
My first infusion is Friday. I am hoping I won’t get bad side effects, but we all know each drug does different things to a person. I get to play guitar this weekend, and am hopeful none of this will interfere with that. I have a second infusion two weeks from Friday. I can only hope that I start to feel relief at some point, but I have yet to see what that really is like. I’ve never been in remission…so what could that be like? Could I juggle flaming chainsaws in my office to motivate m team to get more work done? Or will I be a puddle after the infusion.
I guess this is just another journey I will have to take, with the hopes it doesn’t take 21 months for me to finally say, “Enough!” Better yet… maybe I can feel some relief before Christmas. That would be the best present I could ever receive.
Right now, what RA tips would most be helpful for you?