The pain is back.
So, I’m switching to Hurmia. In some minor miracle, insurance has approved all this within two days. I’ve had to wait till today, May 2nd for my first dose … which I got this morning. A nice part of this is that it is a self injectable, can be at room temperature for up to two weeks. It was also completely painless, I didn’t even feel the needle. Will see in two weeks when I need to do it myself, as this time was done with the nurse for as a “training” session. I’ve had some mild relief since, but might take longer for the full effectiveness.
Back in the about March or April of 2010 ( 9 years ago ), I came back from a snowboarding trip. I was still learning and couldn’t make a full run without falling multiple times. I fell asleep on the sofa, and woke up with mild pain in my back … so logically, snowboarding + sofa sleep … sure, a bit of back pain. This continued to escalate through the summer, to finally to a point where (after an ordeal with doctors, referrals and new patient wait times ) finally got to see the great Dr. C. Michael Neuwelt. At his office over at East Bay Rheumatology Medical Group he helped me visualized what was going on and to push me past my anxiety of a new medication and the whole delivery process. He grabbed a prop – some small skeleton of some sort, I forget exactly, and showed me because of the extreme inflation in my back and my neck, if I didn’t do anything, it would cause permanent damage to my spine, fusing vertebrae, which would confine me to a wheel chair. This pretty much removed all my hesitation to having an drug called REMICADE® (infliximab) given intravenous infusion every 6-8 weeks. I told Dr. Neuwelt, that my goal was be able to return to snowboarding for the coming winter. In November 2010, I got Remicade, and after the first 2-3 hour infusion, half my pain was already gone, and indeed, I was snowboarding again for the new season.
In the next 9 years following, I had two flare ups problem. Once I rescheduled my infusion to a 10 week gap … and as a result some pain came back. We adjusted my Remicade from 8 weeks to 7 weeks – and I never delayed an infusions again. Then due to an insurance snafu, which I went 15 weeks before I could get my infusion. ( I wrote down this whole drama sometime ago.) Overall, things have been good, but not prefect. In November 2018, I informed my new rheumatologist that I thought Remicade wasn’t working as well.
Then in the last week of March 2019, as I approached my infusion of Remicade, my pain was coming back. Post my April 4th infusion, I had an unusual rapid onset of arthritis pain. Usually the pain slowly ramps up over weeks. In addition, I also noticed, upon reflection, my depression medication seemly had reduced effectiveness. So, my attention medication (schedule 2) was dropped (for now), and change from one SSRI to another SSRI. (There is too much going on to make a call on this yet.) Another thing to note, back in mid-March, I had a reaction to beer. I drank about 3/4ths of a beer, and my face broke out in a red rash – that felt and looked exactly like a sunburn. This went away after about an hour or two, but was the second time in that number of weeks this happened. So I’ve temporary embarked on some sobriety, while I add additional medical professionals to figure out what’s going on.
All this has resulted in physical pain and mood changes. I will call it “the bitter old man” syndrome. I’m getting volatile, easily provoked, and have a short temper. If you have been unfortunate enough to see of my lashing out on threads of gender identity, artificial sweeteners, something on PG&E bonuses – you’ll get a peak at what I’m talking about. No, I don’t apologize or take back any of it … but my trigger level has been lowered. My usual lack of filter has been replaced with an amplifier. I stand by what I said. However when I’m usually in a better mood, I wouldn’t have taken the time to get into a back and forth, and probably wouldn’t have commented (or even read the original posts).
I’ve had sleeping issues, mostly due to the pain. I got a Prednisone Taper (40mg x 4 days, 30mg for 3 days … ) which helped with getting resultful sleep, but not full night sleeps. This ran out about April 27, then the sleeping issues resurfaced.
So, the last month or so has been interesting. On top of this going, I also started a new job and my parents are coming to visit next week. I’m sure I’m forgetting something epic.