Worry, Wonder and RA Disease ...My RA Story
January 3rd, 2018
Rheumatoid Arthritis is a chronic disease, but its symptoms can be managed.
RA disease is a chronic, inflammatory disease that occurs when your immune system mistakenly starts attacking healthy joints. Causing symptoms that may include pain, swelling, stiffness and loss of physical function. And, general physical symptoms such as fatigue and muscle pain.
February of 2016
The pain I’d been experiencing in my hands, wrists, and left shoulder, started to happen more frequently. I kept attributing it to the amount of time I had to spend in company car, trying to develop an unknown brand in 4 ½ state sales territory. Was not uncommon for me to spend 8+ hours a day, in and out of my car, seeing accounts/prospects. The pain persisted, at times hours after I’d been out of the car.
Saturday, March 12th
I’d been in Grand Rapids, MI for a store event. I drove home (about 5 hours) after the event and was back in Indy by 6:30pm. Had pain issues going on. Couldn’t lift my left hand above my own shoulder, without having excruciating pain.
March 13th, 2016 …the night my hands blew up.
Sunday daytime, I took it really easy, hoping the pain I was having would go away prior to the gig that night. For the most part, I felt okay to go ahead and play that night.
I’ve been a drummer and singer my entire life. I received my 1st real kit when I was five years old. Have been blessed and had the pleasure to perform and entertain with and for a lot of very cool people. Blues music has always been my passion. I didn’t have a band at this time. But, I would get calls from time to time, for sub work. My phone didn’t ring as frequently …as I was gone a lot covering 4 ½ States for my sales job. This particular gig was on a Sunday night, so I made it work for my schedule. Was a tribute blues jam for Leroy Lefty Bates (a blues musician and mentor to many area players; he had lived in Indianapolis for many years). I was part of the house band that evening, at my all-time favorite place to play music....The Slippery Noodle Inn, downtown Indianapolis. Some good friends and I, warmed up the crowd and opened the show. We ended up playing an hour and twenty minutes first set.
Here’s a short clip from that night. I’m on drums and singing, behind the guitar player. Can see me briefly at the end of the video.
My hands during and towards the end of the set were getting worse by the song. By the time we took a break …both hands were claws, holding my sticks. I gingerly dropped the sticks onto my snare drum and sat there on stage staring at my hands, trying to understand what the hell was happening. My hands were stuck, like I was still holding sticks. Couldn’t get them to flatten out and open completely.
Fortunately, I had one drummer come out that night. This was an open stage, where musicians sign up, then get called up and jam with the house band, etc. This friend took over and played the few sets, the rest of that evening’s jam (God bless you Gonzo D.).
Friends helped me tear down my drum kit after the show and load up my car. That was Sunday night, March 13th, 2016. The swelling in my hands didn’t go down until Wednesday.
The next week, I was back out on the road, for some store weekend event. When I returned home Saturday evening, I again had the pain in my left shoulder. Also, in my hands and wrists. This time …I also had the pain in my left ankle. Weird. My wife insisted I go to see a doctor at this point.
To pause for a moment and try and relate the type of pain RA disease gave to me (it is different for everybody) I really am not sure how to describe it. At times, it can feel like somebody took a large, heavily weighted, sledge hammer and has SMASHED the sh*t out of my joints. Be it my ankle/s, shoulder/s, wrists, individual finger joints...sometimes combinations of several areas. It’s not a throbbing pain. When it shows up, it is just there, until it finally passes. The pain will move throughout my body. You want to stay as still as possible, thinking that will help the pain to diminish and go away. IT DOESN’T help to stay still. The pain remains. I also will get muscle spasms in my legs and sometimes in my forearms.
After a visit with an orthopedic doctor, I was still being told this was from a rotator cuff injury. I had let him know the amount of driving I’d been doing. He attributed the pain in my left shoulder to the way I was sitting in the car. I had been resting my left arm along the car door window ledge. This put pressure onto my shoulder, causing irritation and pain. Suggested I quit doing that when I drive. I stopped.
He had taken a couple x-rays of my hands. The doctor said he didn’t see joint damage in the x-rays. But, to rule it out (arthritis), he wanted to do a blood test. I got a call a few days later when the lab-work had come back. Turned out, I DO have rheumatoid arthritis disease.
This was now June of 2016. Finally, diagnosed the problem.
So …great! So how do I go about getting better?
Not so fast.
Turns out, there is no cure for RA disease. Great! There are many medications and combinations of meds, that have been able to help people with RA disease to function.
My Medication Journey
My medication road started with prednisone (steroid, known to help fight inflammation in joints).
Started relatively heavy dose daily, to attack the inflammation. Gradually over the next several months, I was weaned off of the prednisone. While it can be helpful fighting inflammation, prednisone can have many negative side effects. Not something you can stay on long term.
Also started with methotrexate. Methotrexate is actually a chemotherapy drug. Somewhere along the way, somebody discovered that methotrexate also helps people with RA disease. I take 8 2.5 MG pills once a week.
Methotrexate is used to treat certain types of cancer, and also severe psoriasis and RA. Methotrexate belongs to a class of drugs known as antimetabolites. It works by slowing or stopping the growth of cancer cells and suppressing the immune system. Early treatment of RA with more aggressive therapy such as methotrexate, helps to reduce further joint damage and to preserve joint function.
At the start of this RA journey…my awesome wife helped me with researching different supplements that are known to help with inflammation. Started taking several (ginger root, krill oil, tart cherry).
Once the RA doctor had my inflammation better controlled, and additional lab-tests, I was put onto Enbrel. Is a weekly injection I would give myself?
Enbrel, was the first TNF biologic treatment to be FDA approved for moderate to severe RA (1998). Besides RA, it is also used to treat several other auto-immune diseases (plaque psoriasis, psoriatic arthritis, ankylosing spondylitis and juvenile idiopathic arthritis).
As I continued to be weaned off of prednisone, now on methotrexate and Enbrel for the RA disease …my pain started to return. Enbrel wasn’t working for me.
So, additional lab tests, prior to starting me on …Humira. Humira is another biological, injected every other week.
Humira is a TNF blocker, biologic. It also is used to treat several other diseases, besides RA (ankylosing spondylitis, Crohn’s disease, ulcerative colitis, plaque psoriasis, etc.). In adults with moderate to severe RA, Humira can be used alone, or with methotrexate, or with certain other medicines. Humira may prevent further damage to your bones and joints and may help your ability to perform daily activities.
I started on Humira (the 1st time) March of 2017. I had to take myself off of it, just about 2 months into it. I had gotten sick with a cold. One of the “bonuses” of biologicals, is while they may be helping to target the symptoms of the RA disease, they lower your immune system. So, I can’t continue taking it, or I’d risk getting really sick.
Took me a few weeks to kick the cold. Once my cold was gone, I started back up with another cycle of Humira, shot every two weeks (June of 2017). Made it to about 3 months into the cycle, got a cold again. Had to take myself off of Humira. That late summer/early fall cold hung on for several weeks.
Attempted to start a third cycle of Humira Labor Day weekend of 2017. Just after my seventh injection (just over ½ way mark, 3 months) …I got another cold and had to again take myself off of Humira.
I really couldn’t say so far IF I was seeing any benefits from using Humira. From what I had read and been told, I should start to feel results within 3 to 6 months of taking Humira. But, I kept getting sick and would have to stop the cycle.
Very frustrated with this. Starting to think biologicals are not going be a route for helping me with my RA disease.
Until recently, my pain had been for the most part in check.
One of the other symptoms of RA disease is fatigue. Fatigue has been a continual concern. At times, I feel like I have to “budget my energy.” I’d think to myself, so …if I can do this on Saturday, then Sunday afternoon I can’t do …. Really felt like I was prioritizing what I could do, based off of how I’d feel/how much energy I’d have. Then, I’d worry about it leading up to whatever it was, and hope I’d be able to do whatever the planned activity was.
I worry …as my pain seems to be returning on occasion, and the current regimen of meds is not getting me the desired relief. It can be hard not to go to the "dark side." It’s easy to feel sorry for myself at times and think …how long can I keep this up? Will my body continue to tolerate the amount of time I have to spend in a car as a sales man? I can spend three days, four if I’m feeling good on the road, for business. But, it is taking me longer to recover from these trips though.
I have to stop and remind myself, I’m only eighteen months into this journey down the RA disease road. MANY folks have been dealing with this for years. My struggles with RA disease are new to me.
I wonder …when will I find the med regimen/treatment that gets me back to a somewhat normal life.? I worry …my joints and my body will continue to be in pain/deteriorate. I wonder …how long will I be able to function with my body breaking down. I worry, I wonder. I worry …and I wonder. And …I pray.
Do you struggle with insomnia?