My journey started about 3 ½ years ago; I was feeling just fine for most of my young adulthood and during my time in the military, I had reached my first deployment. I deployed to the Middle East for a short period of time before I returned home. After my return, I had some time off to spend with my family that I had dearly missed. While deployed, I worked 6 days a week, 12 plus hours a day and of course after I returned home, I had gone into somewhat of a sedentary state while being out of work temporarily. I started to notice some aches and pains and it was unusual for me to feel this way. I did speak to my primary care physician about it and he suggested that since I just got home from a labor intensive deployment, I was just having muscle fatigue and needed to do some physical therapy and it should relieve my issues. He ordered six months of physical therapy to help relieve my aches and pains. I told him I thought it was something more than just the usual aches but he insisted that I try this out before we consider other measures. I complied as I was told and started a twice weekly physical therapy routine in the clinic.
While sometimes I felt some relief, the pain still continued and even appeared to get worse as time grew on. I wasn’t feeling improvement and at this point, it was becoming a huge setback because it was holding me back from completing my physical fitness tests successfully. Finally, he listened and gave me a referral to an orthopedic specialist off base. I was hopeful to get some answers and ultimately relief. The first orthopedic doctor I had the pleasure of working with didn’t turn out to be such a pleasure at all. He was close to retirement and didn’t take me seriously and I felt like he just disregarded my problems and dismissed me without a proper diagnosis. I had an MRI done on my hips and shoulders and he didn’t even as much look at the MRI images, he just said he only needed the report. I might agree this to be truthful but I still feel like he dismissed me without even trying to create a plan for the future. He issued me some flector patches, which were also of no help, and sent me on my way.
Frustrated with his practices, I asked my doctor for a second opinion. But doctor knows best and his thoughts are to now send me to a rheumatologist for evaluation. I didn’t restrain from his opinion as I may have usually done so because I feel like I know my body better and that I needed a new orthopedic doctor, one who would listen and help. I wasn’t even sure what a rheumatologist did exactly and he tells me that I need to be evaluated for Rheumatoid Arthritis; like most, I figured I was too young at age 25 to have any arthritic condition. I’m sitting in the rheumatologist’s office waiting on my blood test results; while in the office, I see a pamphlet for Fibromyalgia and began to read it. I figured I already knew his answer, I don’t have arthritis but Fibromyalgia had a lot of symptoms that I also had and thought it wouldn’t hurt to ask. He comes in to read the results, tells me I don’t have RA and I ask his opinion about Fibromyalgia and he says that I’m too ‘young’ to even get that. He tells me that I need to see a neurologist perhaps and he was releasing me back to my primary care physician.
Almost a year has passed now that I started having my first symptoms and finally after consulting yet again with my primary care physician, I was in the hands of a new orthopedic specialist. I went to my first appointment and was thrilled that I had a new doctor that had actually listened to me and was just as equally eager to help. I had asked around for advice from coworkers and they all pointed me in the right direction. This new doctor had done more in one appointment then my last orthopedic doctor did for me over a two month period. He gave me X-rays, ordered more blood work, wrote me a profile prescription to restrict me from work activities, and even prescribed me a pain medicine to help manage my pain.
Although my hips were bothering me the most, we started with working on my shoulders. When I rotated my arm forward and back, both of my shoulders would pop and crack during the entire rotation. May 2011, I had my first surgery on my right shoulder. All the popping and cracking is now gone! He told me that I had a large bone spur, torn cartilage and severe tendonitis in my right shoulder.
Nowadays, they make you schedule another appointment if it deals with another part of your body so after my right shoulder was taken care of, I focused on my right hip. Doc said he thought I had bursitis in my hips and that he could perform a bursectomy to remove the bursae sac from my hip which would ultimately relieve my pain. Before we got to the cutting table, he injected me with cortisone steroid shots in my hips to also help but unfortunately they were ineffective for me. I also seemed to have an allergic reaction to the Cortisone steroid shot because it gave me tunnel vision almost immediately but thankfully I had no other symptoms. September 2011, I had my first surgery on my right hip; after the surgery, he tells me that I had severe bursitis in my hip and I quote, ‘it was really bad in there.’ He suggests that he isn’t sure exactly why I have such severe inflammation in my pelvic area but I certainly have a lot.
I did a regimen of physical therapy after both surgeries and while the exercises were supposed to help relieve my pain, I was still hurting in the same exact areas in which I just had surgery. I’d go as far as to say the pain was the same if not even a little worse. I’m a side sleeper and it was miserably painful to get rest at night because I couldn’t sleep on one side of my body. I constantly tossed and turned, shifted my body weight, laid awake for hours at night because I was uncomfortable and in pain. I was taking prescription sleeping pills and muscle relaxers just to get a full night’s rest these days however, I’d still wake up stiff and in moderate pain most mornings.
I’m starting to feel hopeless, that whatever the doctor’s thought was wrong with me is not the answer I’m looking for. Yet, I undergo another surgery on my left shoulder in January 2012 and continue on with the physical therapy process. My left shoulder also had severe tendonitis as well as a small rotator cuff tear. My job is at times strenuous on my body so it’s not unlikely that some of these shoulder issues may have been caused by my work but my hips were the biggest mystery of all. After my third surgery over a 9 month period, I find myself still complaining to my doctor about pain in my hips and shoulders. I was taking Percocet for a short period and Vicodin post-surgery for quite a while to help manage my pain. The medicine certainly helped ease my pain but the problem was that it upset my stomach at times, making me nauseous to the point of vomiting so I usually only took it just before bed to help rid the pain so I can sleep. I wouldn’t dare take it throughout the day while at work because I would be very sleepy and incapable of being at all efficient to do my job. I also want to note that the constant consumption of pain pills that have Codeine in it would make me severely constipated and I had to also take prescription laxatives just to maintain a regular bowel movement. With all my issues brought to light and little changes being made, my orthopedic doctor had heard enough and refused to perform anymore surgery on me until I was reevaluated by another doctor. You can imagine my frustration and desperation at this point. Back to the drawing board I had to go; spoke to my primary care physician yet again and he says he thinks the next best option would be to see a neurologist even though I told him the orthopedic doctor said I needed to see another rheumatologist again. What do I have to lose at this point? I figured what the heck, why not. So, I see a great neurologist who performed lots of tests on me such as a brain and thoracic/ lumbar spine MRI, an electromyography (EMG) and nerve conduction study (NCS) and blood work as usual. Thrilled about finding out the results, I just knew that we were going to get some answers this time. But would you know it, my tests came back nearly flawless. I had a few spots in question on my brain that might be an indicator of multiple sclerosis but nothing serious enough to have major concern. The doctor said to come back in one year for another evaluation should I chose to do so.
While I’m thankful nothing was seriously wrong with me, it was almost a feeling of disappointment that I still didn’t have any concrete answers to my never ending battle. I’m still not giving up hope, so back to my doctor I went. We are getting to the point of last resort here; I saw in the network directory that there was a new rheumatologist listed in the town I lived in. I asked my doctor if I could take a shot at seeing her for my second opinion rheumatologic evaluation. This was it, if this person didn’t give me any results, I couldn’t get another opinion from another doctor. My insurance only allows me to see two different doctors of the same practice, the second one being the second opinion that I’m authorized but it doesn’t go any further than that.
I made my first appointment and was more than eager to get evaluated this time around. I gave the clinic most of my medical history from all the other doctors I had seen prior to my first visit. I filled out lots of paperwork pertaining to my history which also had a long list of things to complete. I’m told by the receptionist over the phone that this is standard practice and that the doctor would carefully evaluate my records to help determine what route to take when working with any new patient. This certainly gave me a new sense of hope, maybe I had found a doctor that took this seriously and would actually listen to me this time around.
Finally, I am in the presence of my new doctor, a female rheumatologist, who would ultimately change my life and I didn’t even know it yet. She listened to all I had to say, asked me a few questions and she then proceeded to have me lay on my back and rotated my legs around in awkward positions to see if she would get a reaction. To my surprise, a great reaction she very much got; I let out a yell of pain when she directed my right leg in an outward position which caused a sharp pain in my hip. She immediately stopped and went back to type up some notes on her computer. After she finishes, she asked, “Have you ever been evaluated for Ankylosing Spondylitis?” Barely understanding what she had just said, I asked her to repeat herself. I had never even heard of ankylosing spondylitis and was quite curious as to what it actually was. She tells me she wants to perform some blood work, of which would consist of an HLA-B27 diagnostic test also. She prescribed me Indomethacin and said she wanted me to try it and see if I noticed any results. Confused and a bit worried at what had just happened, I went home with my new prescription. I took 25 mg of Indomethacin for the first dose and I kid you not, in about an hour time frame, I immediately noticed results. Forget the blood tests, I had just found a new miracle drug! I was baffled that an NSAID worked better and quicker than narcotic pain pills. I had tried Naproxen, Celebrex, Mobic and other NSAID’s in the past and none of them worked so I hardly even took it seriously when she asked me to try it.
It’s November 2012 at this time and it’s nearly Thanksgiving and the Holidays are fast approaching. We had planned a short trip to the North Georgia Mountain’s and rented a cabin for the Thanksgiving holiday. I had purchased my first ‘orthopedic’ mattress not so long ago and was quite adjusted to sleeping in my soft memory foam bed. I enjoyed taking trips for sure but I did have my concerns being able to sleep because I wasn’t at home in my own bed. Would you believe that for the first time in a very long time I was able to sleep a full night on a spring mattress?! I couldn’t believe it myself; never would I have thought I could fall asleep on and certainly not stay asleep on a spring mattress. It certainly seemed that the Indomethacin was helping quite well indeed.
A few months into taking the Indomethacin, I started noticing some blood pressure issues. A lot of people say that high blood pressure is a ‘silent’ disease because you don’t feel symptoms of it but this was not the case for me. I could most definitely tell when my blood pressure was high; I felt light headed, short of breath and could feel my heart racing sometimes. I was very concerned about this, my blood pressure was so high I recall it even being up to 160/103 and was consistently just as high. I had never seen anyone’s blood pressure break 3 digits on the bottom number. Something wasn’t right and it most definitely needed to be addressed. I saw a local cardiologist about it who took some blood tests, prescribed me some blood pressure medication, and told me my cholesterol was high and I needed to exercise and diet and this would relieve my symptoms. Ok, I could reasonably say what the doctor was telling me was of truth but I know my body and my appetite and/or eating habits had not had any drastic changes and there shouldn’t have been any reason for the high blood pressure to be a result. I was certain it was the Indomethacin I was taking that caused it; don’t know why or how but this was the nasty culprit.
I discussed this with my rheumatologist and my new gastroenterologist also. Immediately I was prescribed Prilosec (Omeprazole) to soothe my stomach which would ultimately help control the high blood pressure. I was a bit perturbed at my rheumatologist for not prescribing it to me in the beginning had she known it might cause the high blood pressure. I should’ve done my own research and hold myself accountable for that but it was all new to me and I was so thrilled at the positive results I was having, it didn’t occur to me that I needed to look into it any further at the time. Apparently Indomethacin is very strong on the stomach and can cause intestinal bleeding and stomach ulcers, it also poses the risk of heart attack and stroke. After starting the Prilosec, the blood pressure was under control and all seemed well again.
I went in for a follow up with my rheumatologist and tell her how great the Indomethacin is working. While she’s excited to hear this, my blood test results aren’t so comforting. My CRP is extremely high at 22.9 and the normal range is less than 1.0 mg/L. Also, I am positive for the HLA-B27 gene which is a great indicator that I’m susceptible for Ankylosing Spondylitis. Previously I had several MRI’s done on my hips but it was from an outward view on the side of my hips and most recently I had an MRI performed on my sacrum which focused on the sacroiliac joints. The results showed the beginning stages of fusion in my SI joints and this was enough information to give me a firm diagnosis once and for all.
My doctor was very concerned about the high levels of inflammation in my body as indicated by my CRP blood test results. She has asked me several times if I would consider trying biologic medications and believes I would be a good candidate and would also greatly benefit from it. I wanted to try other methods first, hoping the medication would stabilize my body. I wasn’t eager to the idea of being injected with needles for the rest of my life and I also knew I am susceptible to cancer and this was a huge concern for me when it came to trying biologics. Not only am I susceptible, I had recently had a LEEP procedure performed on my cervix because I had abnormal cells that were precursors for cancer and it had to be removed. Another thing that deterred my decision is that I’m still an active duty member of the military and my primary care physician had already told me that if I had indeed started biologic treatment, I would most definitely have to undergo a medical board and I would be at risk of being separated from the Air Force. A lot was riding on whether or not I could seemingly get better; while I knew I would ultimately live with this disease for the rest of my life, I didn’t want to give up hope that oral medication would be my saving grace.
While taking the Indomethacin consistently for about 8 months, approximately 100 milligrams a day, I started to notice another set of new symptoms. One morning I woke up, my arms were tingling all over and I figured I had just slept on them wrong and lost circulation. I get moving around working around the house on an early Saturday morning and this tingling feeling hadn’t gone away. Literally hours passed and this sensation had not diminished; even to the point that I couldn’t properly use my hands because my fingers were cramped up a bit. I got a phone call and when I answered it, I had noticed I even sounded almost as if I couldn’t talk correctly and was slurring my words just a bit. I’m trying not to be too concerned with the symptoms but start having ideas of possibly having a stroke or heart attack. By the evening, my spouse returns home from work and the symptoms had gone away. I just kept it to myself and didn’t want to make a big deal of it and figured I had nothing to really worry about. The next morning, the same thing happened once again. For hours, I had this tingling sensation all over my arms and even seemed to migrate up to my neck. I couldn’t use my hands well and my speech was a little slurred because my jaw seemed to be tight and wanted to lock up as I spoke.
I’m still battling a trial and error of medication trying to determine which if any would best suit my needs. At my request, my rheumatologist started me on Sulfasalazine and told me to slowly wean myself off of the Indomethacin. Sulfasalazine is a disease modifying anti-rheumatic drug (DMARD) and this is another method of attempting to control my disease instead of using the more common NSAID to treat it. I tried the Sulfasalazine but to be honest, the pills were big and not gel coated like my other meds and it was hard to swallow so I kind of steered away from it a little bit at first. After the scare from using the Indomethacin long term, I had to suck it up and almost immediately I took myself off the Indomethacin and started the Sulfasalazine again as I had already should have done. I’ve been taking it every day for about 3 weeks now and I still haven’t noticed much results. My doctor says that it can take about a month to get in my system and really work well as its intended. I’ve been in a great deal of discomfort since taking myself off the Indomethacin and starting the Sulfasalazine. The prescribed dosage is to take 1 tablet by mouth every 6 hours which would be four times daily. The 500 mg dose didn’t seem to be of any help so instead of taking 500 mg four times a day, I’ve increased the dosage to 1000 mg twice a day instead. I’ve only started this in the last few days and haven’t really noticed any significant results at this point. I’ll continue to give it a shot and see if anything changes between now and my next follow up but I’ll be honest and say my hopes aren’t very high. I know that Indomethacin is banned in some places because of the risk of heart attack and stroke and although it gave me great pain relief, I had too many varieties of symptoms as a result of taking it so I will have to steer away from it in the meantime.
I’m trying my best to consult with my doctors and do as I’m told to help find the best fit that will work for me over the long haul. It may very well be in my best interest to consider biologic treatment and it’s definitely on the list of things to try but I will stick with other conventional methods first before I seek last resort. I read an article that stated the use of biologic treatment early on in the stages of Ankylosing Spondylitis showed great results in preventing the progression of the disease. I too am in the early stages of progression and I know in my heart that it may very well be my saving grace to have a long and fruitful life as I grow older. I will most definitely consider it after other methods have proven to fail but I’m just not ready to give up my career in the Air Force yet and I know that once I make the choice to ultimately save my life, I will have to give up some things that I can no longer have as a result. It’s bittersweet most definitely but I’ll find my place in this journey and whatever decision I make, I will hold responsibility for and make the best of it along the way.
Georgia, United States of America