Stephanie’s Rheumatoid Arthritis story
Jodi’s Rheumatoid Arthritis story
Andrew’s Rheumatoid Arthritis story
Stephanie’s Rheumatoid Arthritis story, in her own words…
In 1976, I started having symptoms at 2 years old. My hands, legs, back and hips would ache and were very stiff. My paediatrician told my parents that it was just “growing pains” and that it would pass. This continued for 2 years until my parents finally demanded that blood work and X-rays be done as now at age 4, I had gone back to crawling as it was just too painful to stand, let alone walk. After reviewing the results, the paediatrician said I had probable Juvenile Rheumatoid Arthritis. At the time I lived on Prince Edward Island, Canada’s smallest province, and there was not a Rheumatologist that specialized in children on the Island so this diagnosis could not be confirmed, nor could I be treated. My parents were told to keep me as comfortable as possible, give Children’s Aspirin if the pain became too much to bear and to keep be as active as I possibly could stand. They promptly put me into competitive dance and while I was in pain and endured terrible stiffness, I excelled. I was the Provincial Champion in both tap and step dancing and was one of the top 5 Highland dancers in the province.
In 1984, at age 10, my family moved to Ottawa, Ontario, Canada’s capitol. My new paediatrician immediately sent a referral to the Children’s Hospital of Eastern Ontario for both a Rheumatologist. In the meantime I continued my dance classes but they were becoming increasingly difficult. I finally saw a Rheumatologist for the first time in December 1984 and was diagnosed with (Adult-type Juvenile) Rheumatoid Arthritis. The doctors told me and my parents, that I’d go into remission in my early 20’s and that would be it. No more disease. They also said in a way, I was lucky as it meant I’d also never have Osteoarthritis (OA) as an adult.
DMARD’s were not yet approved in Canada for children, so I was put on Tolectin, an anti-inflammatory. I was to stop dancing immediately, and was not to even participate in gym class. I was sent to both physio and occupational therapy, where I was given exercises, treated with various machines to reduce inflammation and fitted for arm and leg splints.
Between January 1985 and September 1985, my medications had been changed many times. I had tried Tolectin, Motrin, Entrophen and a few others I can’t remember. I started going to Aqua-therapy twice a week. I found that very depressing though, as I was the only child in the class. Everyone else were elderly patients in wheelchairs and seeing my possible future was heartbreaking. In the end my parents, felt that the bad out weighed the good and removed me from the classes.
In September 1985, I sprained my left ankle and tore many ligaments. I was put on crutches for 6 weeks. Unfortunately, my RA decided that would be the perfect time to attack that same foot. My foot turned inward and seized. I ended up being on crutches for a year. My Rheumatologist pulled me out of school and I was provided with tutors so I could complete my studies at home. My medications were still being changed often and at one point I was taking 14 different pills a day. I continued with the physio and occupational therapies and hoped that life would take a turn for the better soon.
Throughout my teens, I don’t remember not having a flare-up somewhere even for a day. Some flares were minor, only affecting 1 or two joints, others attacked my entire body with a vengeance. By this time, Indocid, Naprosyn, and Voltaren had been added to my ever growing list of failed medications. I tried gold and cortisone injections when things were really bad. It got to the point where whatever medication took the edge off that particular flare would be the one I would take. I started losing my voice often, but no one connected it to my RA. I was given antibiotics each time and eventually it came back.
When I was 16, some DMARD’s were finally approved for children. I was put on Sulfasalazine however, I was allergic to it and had to stop it almost immediately. Methotrexate was in early trials for children here, and was being prescribed to older teens with some success. But as soon both my parents and I had heard that it was a “low-dose of a cancer drug”, we immediately declined. I had gotten myself this far without it and as I was still being told that would go into remission in my early 20’s, felt I could hang on these last few years without it.
Sure enough, when I was 20, I went into remission. The rheumatologist told me at that time, “Ok, you should be fine now. If you have a problem, just come back and see me.” I was fine for a year. A year later, I couldn’t walk for 6 months so I was on crutches again. But it took 12 months to get an app’t with the rheumatologist and by the time I went back, I was fine, so nothing was done. After that, I decided to just treat any issues on my own. I was well equipped after 15 years of physio to take care of small flare ups myself. And really I’d only have a minor flare-up for about a month or two in the winter; usually my feet, knees or hips. The odd time I’d go to my GP if the pain was really bad and they’d tell me, “Oh it’s probably just tendonitis. Take Naprosyn, rest and ice and you will be fine.” So I still thought I was in remission and these odd flare-ups were just old injuries being aggravated.
Then, just after my 30th birthday in 2004, I started having lung issues. I lost my voice permanently and suddenly had severe multiple chemical and scent sensitivities (MCS). As lung disease runs in my family, I was tested for everything lung related and was told I had everything from COPD, to acid reflux, to it was just all in my head. This was even though I had small masses in my lungs showing on CT’s. I gave up going to Dr.’s and just lived my life, as debilitating as it was.
About a year ago, the lung issues were worsening and my husband persuaded me to try once again. I went back to a fourth respirologist. This respirologist too said he couldn’t help me. He adjusted my inhalers, and said to avoid all chemicals and scents which is easier said than done. He did however, re-do the CT, but this time a high resolution one, just in case something was missed. When I returned for the test results, he said he had looked up my old hospital file and wanted to know why I never told him or any other respirologist for that matter that I had RA. I said, “Well I had the juvenile version and I went into remission at age 20 and was told I didn’t have it any more. Besides, what does a joint disease have to do with lungs, voice and chemical sensitivities?” He said, “I don’t think you are in remission. You need to see a rheumatologist”. I thought he was crazy (as he never did explain his reasoning). But I went back to my family doctor and requested the rheumatology referral. Coincidently, around the same time, I tore the tendons that run from the elbows to the wrist in both arms so at the same time, I got a referral for physio. The waiting list for the rheumatologist was 12 months. I didn’t really care as I didn’t see what the big issue was. In the mean time I went to physio. I decided to go back to the one I saw for as a kid as I figured she knew me best and could treat the tendon tear a lot faster as a result. She too asked why I hadn’t seen a rheumatologist in 15 years. I asked her why is everyone telling me to go? She said, “Because it explains everything. You need to go ASAP. You can’t keep living like this!”. Well, with a 12 month waiting list there wasn’t much I could do but wait. And during the 12 month wait, I not only lost use of my elbows and wrists, but my shoulders were down to 60 degrees rotation, and both knees and hips were so bad that walking or sitting was difficult.
Finally in January 2009, I got to see the rheumatologist. When I arrived, I had to fill out a questionnaire and found I was circling everything on the list (including voice loss, skin issues, eye issues and chemical issues). But I still figured that this doctor, like all the others before him, would just say I’m fat and there is nothing wrong with me. Much to my surprise, he never mentioned my weight. He explained that once you have RA, you have it forever. That RA also puts you at an increased for OA due to joint damage. He explained that RA not only attacks your joints, but it also attacks your organs, skin, and also can cause chemical sensitivities as the immune system is in overdrive. The arthritis in the name is really a misnomer. But they call it arthritis as, in most cases, the problem is mainly with the joints.
He sent me off for a bunch of blood work and X-rays of pretty much every bone and joint in my body. It took me a full day to get everything done. When I went back for the results a few weeks later, he said, “Well the good news is, this isn’t all in your head. The bad news is you have RA that has been untreated for 15 years and there is a lot of permanent damage. Because of all the damage, you also now have osteoarthritis in your knees and hips”. My blood levels for RF was positive and inflammation levels were extremely high. The X-rays showed damage to just about all my joints. I will end up having both knee and hip replacements within in the next 10 years. The lung masses on that CT 5 years ago, were not benign tumors after all. They were rheumatoid nodules. The voice loss is due to damage to my cricoarytenoid joint, a joint in the larynx (who knew your throat had joints too?!). I was in tears in the office. He said, “Don’t worry, while we can’t reverse the damage done, we can try to limit any future damage some.” I said I wasn’t crying because I was upset. I was crying because finally, after 5 years of being told it was all in my head, and worrying I would die before anyone figured out what was wrong with me; I finally have an answer. Yes, the answer isn’t great but I wasn’t crazy. I really did have something wrong with me.
I was immediately put on 20mg, by injection, of methotrexate. In addition, I was given Tramadol 300mg daily; and Naprelan 1000mg daily. I’ve also had cortisone injections, in both shoulders, knees and hips. I have RA related eye issues requiring that I apply lubricating drops or ointment 5-6 times a day; A also take 5mg of Folic acid daily to help with the MTX side effects.
While I am still in a constant flare-up, I can see that I’m getting better a little more every day. My voice is not back completely but it’s better. I am understandable now. It just sounds like I have a bad cold, instead of sounding like an alien all the time. The chemical sensitivities will never go away, but maybe in time they won’t be as severe. The lung damage is permanent but with the new drugs as well all the previous lung medications, it’s stabilized. And just the fact that I now KNOW, makes a world of difference. I’m sorry that I wasn’t given the correct info when I was a kid as the lung damage and voice loss could have been prevented. But it’s no one’s fault. Research 30 years ago, or even 15 years ago, isn’t what it is today. They just know more now. I am learning more about this disease every day and am amazed at all the new knowledge and treatments there are out there.
I hope that by telling my story, I can save someone else from going though what I have. If nothing else, I hope I have empowered others not to give up. Don’t listen if you are told it’s all in your head. Chances are it’s not.
Stephanie’s blog, where you can even hear her voice on a video webcam.
Post on this blog which discusses Stephanie’s Cricoarytenoid Arthritis.
Jodi’s Rheumatoid Arthritis story, in her own words:
My RA History
One evening after work in the summer of 1997, my left shoulder became achy. By bedtime, it was really painful and difficult to raise. I took two Advil and tried to sleep, but my shoulder burned inside. No matter what position I tried, I couldn’t move away from the pain. Around 1:00AM, I reclined in the La-Z-Boy in the living room so I wouldn’t keep my husband up.
A lady I worked with had recently passed away. The symptoms of her sickness began as sudden, mysterious joint pain. It turned out to be breast cancer that had spread throughout her body. I just knew my sudden, mysterious joint pain was cancer too, and I cried the rest of the night.
I called the general practitioner as soon as they opened and took the first available appointment. The doctor diagnosed bursitis and prescribed a steroid pack plus antibiotics. Both of us were baffled why I had it, since bursitis in the shoulder is typically a sports injury and I hadn’t done anything. The only thing we could guess was that I had lifted my then 20-month-old son incorrectly. At least I was comforted to know it was not cancer.
The bursitis cleared in a few days, but six months later, I awoke with the tops of both hands from the base joints of my middle, ring, and pinky fingers to the wrists puffy, red, and tender to touch. I had begun a new exercise regimen days before and thought maybe I’d hurt my hands somehow.
The inflammation disappeared from my hands after a couple days but appeared across the base joints of my toes on both feet. I remember joking with my coworkers that I must have arthritis. After all, I had just had a birthday and was getting so much older! I had just turned twenty-six.
When the redness and swelling left my feet and returned to my hands, I returned to the doctor. I don’t remember her checking any table of requirements or counting the number of joints affected, but she did take a blood test. Its results were positive for Rheumatoid Arthritis, so I was sent to a rheumatologist.
The rheumatologist retested me, confirming the GP’s diagnosis, and treated me with Plaquenil, Lodine (NSAIDs), and Prednisone. I took Prednisone until I gained about fifteen unwanted pounds and became irritable, then refused to take it anymore. While the other meds were ok, they did not really benefit me. I still had mild flares that caused me to wear elastic supports and braces.
In 2000, a brand new medication became available and I started Enbrel injections. I responded very well to it, eventually being able to discontinue NSAIDs. I took it for two years. When my husband and I decided to have a second child, I stopped taking all meds. My body rebelled. For a month, I detoxed with severe flares. It was the first time I ever had to call in sick to work due to RA.
Gradually, the flares lessened, and I soon became pregnant. Since I was over age thirty, I was screened with many tests. My OB/Gyn performed an early ultrasound. It revealed too little baby and too much amniotic fluid. She suspected Trisomy 18, but didn’t really explain what that was; she just told me it meant the baby was smaller than it should be. At sixteen weeks, the triple screen test confirmed my doctor’s suspicion, and she sent us to a perinatologist. At twenty weeks, I underwent a level two ultrasound and an amniocentesis. That particular doctor was cold and insensitive. He told us straight out that our baby would die. “There is no hope,” he said and suggested termination. We declined his recommendation.
Trisomy 18 is a chromosomal defect in which three instead of two of the number 18 chromosomes are present. In our case, that meant our daughter’s diaphragm was herniated, wedged at an angle across her chest, squeezing all other organs up into one corner and preventing them from developing. Our Rachel Faith was born just after midnight the day before Thanksgiving, 2002. She lived only minutes.
At that time, long-term side effects of Enbrel were unknown. My rheumatologist denied that it could cause Trisomies, but no one really knew. I, of course, blamed Enbrel and my disease. My husband blamed himself. Ultimately, though, no one and no thing were to blame, but this happened “so that the work of God might be displayed in [our lives]” (John 9:3).
My husband and I went on to have two more children, both healthy and vibrant. I remained unmedicated for five years due to pregnancies and nursing babies, experiencing only mild flares that were few and far between. A unique perk of pregnancy is that it sends RA into remission. There’s a hormone connection here that physicians ARE all aware of, but nobody’s researching it! My GP, my rheumatologist, and my OB/Gyn all told me about this phenomenon, yet none of them could tell me why more information is not known.
After weaning my fourth child, the RA returned with a vengeance. Leery of medicinal side effects, I searched for healthy alternatives. I tried non-treatment. I tried homeopathic treatment. I tried cold laser treatment. I tried nutrition treatment. Nothing helped. I found things that made the RA flare, but nothing to make it go away. At one point, I visited “the best rheumatologist in Dallas.” I told him I wanted to be healthy, not just drugged and dismissed. His answer? Inject Enbrel weekly, and take a combination of twelve pills a day including Methotrexate, folic acid supplements to offset Methotrexate’s lethal side effects, prednisone, and NSAIDs. Wow! That makes me healthy how? It must have been the pharmaceutical companies who gave him “the best of” title.
The RA continued to worsen. I’d wake each day with more than one major joint so severely affected I could barely get out of bed. I was in tears almost daily. My feet stayed swollen, knees would give out, wrists would drop, fists couldn’t clench. I didn’t want to be medicated, but I could not live in the state I was in.
One particularly painful day, I attempted to exercise, to show the disease I was in control, to send it a message. I found out I was not in control. But neither was the disease. My joints didn’t allow me to ride my road bike that day. I fell on my bed in tears and moaned to God. He told me, “Wait.”
“Wait for what? A cure? A miracle? And what do I do while waiting for whatever it is I’m waiting for?” I asked the Lord.
His reply was, “Wait.”
God’s message to me that day was to wait on Him throughout my affliction, to trust in Him absolutely, and to allow His will to be done in my life, no matter what discomfort that may bring. I am His vessel, and through me, others may be drawn to Him, IF I allow Him control.
For the first time in a long time, I felt at peace about seeking medical treatment. God has placed wisdom and knowledge in the minds of men and women for the purpose of accomplishing His will, and I realized it was alright to accept their help. I made an appointment with my current rheumatologist, a woman who is compassionate and concerned for my overall well-being. She listens to my desires for my health and works with me. I don’t plan to have more children, so I am not concerned with a repeat of chromosomal defects. However, I do refuse to take certain medications, and I definitely refuse to take a myriad of medications that offset each other. For now, I am back on Enbrel, and for now, it is working pretty well.
I also battle dry eyes and dry mouth, symptoms of secondary Sjogren’s Syndrome. I use Restasis eye drops twice a day in addition to frequent, as-often-as-needed saline drops. For dry mouth, I use Oasis rinse, drink lots of water, and chew sugar-free gum.
Jodi’s website, where you can learn more about her pursuits.
Andrew’s Rheumatoid Arthritis story, in his own words
In May 2004, I started having severe eye pain, redness, and blurred vision. I ended up at an ophthalmologist and within 1 minute he pronounced that both eyes had acute anterior iritis – an inflammation of the iris. After performing some tests and prescribing continuous doses of prednisone steroid drops for the next month, he asked me if I ever had joint problems. I thought that this was odd coming from a physician dedicated to treating eye problems. He stated that iritis is a common symptom in autoimmune disorders. He said that there are blood tests for this but since I had no other symptoms, I could just wait and see what happens. I quickly forgot all about it.
In the fall of 2006, I began to have problems with my Achilles tendons. They were swollen, inflamed, and very painful to the touch. The left tendon was worse than the right. It affected my ability to exercise. After visiting an orthopedic surgeon who specializes in ankles, he suspected that there was tendonitis and/or tearing in the tendon. Upon examination, he stated that the problem was likely congenital because I have long leg bones causing the tendon to stretch. An MRI of the tendon revealed tears in the tendon. Surgery on the left tendon was performed in January 2007. He repaired the torn section and also performed a lengthening of the tendon in order to reduce the tension. I mentioned that the right tendon was also hurting and the doctor indicated that we should just keep an eye on it while the other one healed from the surgery. I was hiking by the summer of 2007 and snow skiing that next winter. However, by that time, my right tendon was bothering me enough so I headed back to the orthopedic surgeon. A MRI revealed tearing and the same surgeries were performed on the right leg in April 2008. I recovered and was back to snow skiing by December 2008. Never the less, my legs never felt the same way as before the surgery.
Putting it all Together
In January of 2009, I began to experience pain in the middle joints of my fingers on both hands. This was accompanied by morning stiffness and a lot of fatigue. I also had chronic hives, usually in the evenings, on my arms and legs. I visited my primary care doctor and told him of my symptoms. After describing my history with the eye problems and Achilles tendon tearing, he began to suspect that I had an autoimmune disease like rheumatoid arthritis (RA). One clue he mentioned was that the symptoms presented symmetrically on both sides of the body…iritis in both eyes, Achilles tendon problems on both sides, etc. He mentioned that fatigue is also a common symptom. He referred me to a rheumatologist – a specialist in arthritis and associated diseases.
After completing a long medical history survey, multiple office visits, numerous blood tests, and hand x-rays, the rheumatologist diagnosed me with rheumatoid arthritis. My blood tests were negative for rheumatoid arthritis factor. Shortly after the diagnosis, joint pain had extended to the base of my fingers, both wrists, both elbows, and my knees. My ankles were always hurting since before the surgeries. My joints popped and cracked when moved. I was stiff most of the day and the fatigue was worsening. I was immediately started on DMARDs and quickly progressed to using biological treatments by April 2009.
Andrew’s RA blog is Living with Rheumatoid Arthritis.