Jenna’s Rheumatoid Arthritis story
Tammy’s Rheumatoid Arthritis story
Sherrie’s Rheumatoid Arthritis story
Judi’s Rheumatoid Arthritis story
This is Jenna’s onset of JRA story, in the words of her mom, Amy.
Our journey with RA started in July of 2008. Our youngest of three, Jenna (aka, Bean), was four and a half years old. She “appeared” to be a normal, happy, healthy, even active little girl. Then one morning my husband asked me, “Why are Jenna’s knees square?” I thought he was crazy and pretty much told him so. Later that day while at the beach with the kids and my Mother, my Mother asked the same thing. “Why are Jenna’s knees square?” That’s a question that will reverberate inside my head forever now. I knew then that there must be something to this.
So, I called my little Bean over to me so I could take a look. Then I called the other two over so I could line up three sets of kids knees to compare. OH CRAP. Something for sure isn’t right, but she seemed fine, so I figured it was something I would call the pediatrician about at some point. The next morning all three kids woke up with a ridiculous amount of bug bites, Jenna being the worst case. I think we counted about 80 bites on her little body. So I called the pediatrician to get them in right away. We never did find out what all that was, but while we were there I asked her about Jenna’s knees. She confirmed that they were NOT right. She immediately sent her for an x-ray which confirmed excessive inflammation and fluid on both knees. She said she was going to get us in to see a rheumatologist, she was pretty sure Jenna has “arthritis.” HUH? Uh….okay.
Now, here is where the dates get fuzzy. I believe it was August of 2008 that we first saw the rheumatologist. By the way, I should mention here that Maine is just one of many states that does not have a pediatric rheumatologist. This doctor is an adult rheumatologist. At the time we thought that would be fine. We since have learned that these kids MUST see a PEDIATRIC rheumatologist. The treatment of children versus adults is drastically different. He ran some labs, did his own x-rays, ruled out anything else this could be and confirmed, YES, Jenna has what at that time he called Juvenile Idiopathic Arthritis. At that time her blood work was negative for the Rheumatoid factor. I recall going to school with a girl with arthritis, but, I mean you really think of it as an old person’s disease. She was only four and a half at this time! He said that I needed to get her eyes checked immediately. Really?? Why?! I had no clue that arthritis can attack the eyes! He said that especially because she is a girl and because she tested ANA+ she is highly likely to develop Uveitis.
He began treating her with Naproxen, I believe it was 2x daily. Not only did that not help, but she started getting these ugly, oozy, blistery, painful sores all over her body. No one, even the rheumatologist, could figure them out. He said that people do get rashes from Naproxen but he had never seen the likes of this. He said to stop the med and see what happens. If it’s the Naproxen, the sores will go away immediately, and they did, thank goodness. Since not only did it not work but clearly she is allergic to it we had to change the attack plan. He put her on methotrexate, can’t recall the dose, but rather than do injectable liquid or pill form, we did the liquid taken orally. We later learned that is not the proper way to administer this medicine. After some time, a month or two maybe, this still was not controlling her inflammation. By this point it was not only in her knees but also one ankle, one elbow, as well as a few fingers and toes. We scheduled her to have both knees drained and injected with steroids to jump start her treatment. Although that in itself was a nightmare, it worked. She, for the most part, did great after that. Also, he ran tests on the fluid her withdrew from her knees. She tested positive for the Rheumatoid factor. Her diagnosis was now Juvenile Rheumatoid Arthritis.
Meanwhile we had taken her to our eye doctor. Her first couple of checks showed no inflammation. Okay cool. Didn’t take long though. She went from nothing to full blown, 30-40 cells per eye, within weeks. Turns out the Uveitis would be our hardest fought battle. At this point we needed to start seeing an ophthalmologist rather than just an optician. Again, Maine has one pediatric ophthalmologist. Turns out he’s a monster and after a few horrific visits I refused to go back. We were very fortunate to be seen by Dr. F. at MERSI. We knew at this point that we needed to add another systemic medicine to battle the Uveitis before it could do any damage. Dr. F. wanted to add Remicade or Humira. The rheum doc wanted Enbrel and we knew nothing, yet were caught in the middle. We ultimately went with Enbrel because we were told that it stung less than Humira. It was a BIG mistake, we should have listened to Dr. F. Enbrel cannot effectively treat Uveitis.
We knew at this point that we had to do something for Bean. Running here there and everywhere from state to state to get her treatment was NOT working. I mean we really liked the rheumatologist that she was seeing, but after finding and communicating with other JA moms, we realized there was more that could be done. Simply put, she needed a pediatric rheumatologist, Maine doesn’t have one, so where are we going? We went in and talked to her rheumatologist about it. He said if we were interested in North Carolina, he knew a fellow at Duke Children’s Hospital and he would get in touch with him and see if they could get her in. YES, we were interested! That was likely the hardest thing we ever had to do. To uproot our family, including leaving behind one child, leaving everyone and everything we had ever known, to move to a new place where we know no one. But I tell you what, it was also the BEST thing we EVER did. It has been a very bumpy road but the care that Bean gets is 100% worth it.
It has become my mission to raise awareness of the fact that YES, kids DO get arthritis, YES, it affects way more than “just” the joints, it affects eyes and organs too, YES, arthritis can potentially be lethal. When Bean was first diagnosed I had so many people saying, “REALLY?? She has ARTHRITIS??” with this scrunched up face as if I was crazy. YES, people she has arthritis! Kids get it too!! I want to shout it from the rooftops. We also still get a lot of this, “But she looks fine.” What are people expecting to see? Hideous deformities? I also want to raise awareness of the fact that for the 300,000 kids that suffer daily form this dreaded disease there are only 200 certified pediatric rheumatologists. I want parents to know that your child deserves to be seen by nothing less than a trained and qualified pediatric rheumatologist. Mostly, ultimately, I would like a cure. I would like for no more children to suffer.
Follow Amy’s blog to hear more about Jenna Bean.
This is Tammy’s onset of Rheumatoid Arthritis story, in her own words.
I was born in 1967 and had frequent cases of strep throat. In 1974 I was diagnosed with Scarlet Fever. The pediatrician gave me a shot of penicillin. I had a severe allergic reaction. Meanwhile, my joints were inflamed and hot and I was confined to the bed for a long time. I believe that by this time I now had rheumatic fever as it runs in my family, but that is a self diagnosis and was never confirmed. I couldn’t even roll over. My mom had to do it for me. After seeing many doctors and spending about 3 months in 3 different hospitals, the doctors decided on JRA as a diagnosis. I was eventually treated with erythromycin and aspirin. No permanent joint damage that time. Then when I was in 9th grade, it began. We had gone on a trip to Florida as a family. I got a sunburn, a wicked sore throat, and what appeared to be sun poisoning, because I had a rash all over and my skin was outrageously sensitive. Once back at school, I accidentally slammed a finger in my locker. It was swollen and sore for a few days. Then another finger that had not been injured became swollen and sore…and so on. The next symptom, my feet felt EXACTLY like I was walking on sharp stones, and the fatigue began. Horrendous fatigue. People in the school would stop me and ask if I was okay. The rest is a bit of a blur.
I spent the last two weeks of 9th grade in the hospital having every test available run to get a diagnosis. I tried to start the 10th grade, but could only go for about a month, and was home schooled that year. The first doctor put me on prednisone. Then my parents, upon doing research, decided to take me to a controversial doctor, Thomas MacPherson Brown. He helped me get off prednisone. I then was on tetracycline and meclomen and gold, an older treatment-I don’t even know if they use that anymore, and darvocet and I was finally able to resume life to some degree. There were side effects from meds and one particularly nasty ulcer episode from taking Voltaren, but overall somehow I managed to feel like things were okay. Under the care of Dr. Brown and with the help of my faith, family and friends, I was able to lead a fairly normal life, except extreme pain became my new normal.
After graduation from high school, I began to volunteer full time in a Bible ministry, and work part time to support myself. This gave me a sense of purpose that has helped carry me through all this. At 20, I qualified for Social Security and Medicaid. Then in February of 1989 at 21, I started to have severe pain in my left hip. At first I just limped through it, then it began to audibly grind when I walked. Then it would lock. Finally, I went to a surgeon about it. I needed a hip replacement. Actually, I needed two. The left one hurt so badly, I just wasn’t noticing the right one was badly damaged too. So I was scheduled for two hip surgeries that year: one in May, and one in September. Then there was severe depression to deal with in between the two. In November, I moved in with friends so that I could do my ministry work in a more isolated area where extra help was needed. While there, I had two more joint surgeries. I eventually moved back home to go to school, and then got married in 1993. Since then I have had four more hip revisions and two knee replacements. I also had a shoulder replacement because I tripped on a rug while helping a family member move, and fell into a wall. I had broken my shoulder but didn’t realize it was broken for 9 months. I just thought the arthritis was really active in that joint. Talk about a pain threshold! I wasn’t even taking narcotics at the time (I was drinking more though… I wonder why – insert sarcasm font here.)
My last hip surgery (no. 6) was in 2008. I now deal with severe fatigue and all joints are affected. I am on methotrexate, folic acid, Prozac, Lyrica, ibuprofen and Kadian, which is a sustained release morphine product. This has truly been a lifesaver and I wonder that more people who deal with severe RA do not mention that they are on it. When I finally started with it, it was the first time in 20 years I could actually sleep through the night. You can put up with a whole lot as long as you aren’t sleep deprived. I investigated the other biologics last year, but because I am on Medicare the price is too high, and the programs the drug companies offer will not accept you if you have Medicare. At this point I’m not really convinced that they are worth the extra risk for me personally, anyway.
This is Sherrie’s onset of Rheumatoid Arthritis story, in her own words.
For as long as I can remember, I had pain in my wrists. When I was in middle school, we were required during P.E. to do pull-ups, push-ups, sit-ups, etc. I had been telling my mother for years that my wrists hurt and I couldn’t do anything that required pressure on them. My mom was never one to take us to the doctor very often, so I just found ways around doing those exercises. A few years later I was still complaining, so my mom finally made an appointment and I was told I had tendonitis. This was before Advil or any of that, so I was told to take aspirin when they hurt. When I was 27 I had my second daughter and was still dealing with pain in my wrists, but now I had pain in my hands. I remember my older daughter grabbing my hand one day and pulled my middle finger up and I thought I was going to go through the roof – the pain was so bad. I went to my GP and was told it was probably the tendonitis again and she wanted to prescribe something for the pain, but I was still nursing, so all I could use was Ben Gay and ice to help, which did very little.
When I turned 40, I decided to change careers and was in cosmetology school to get my manicuring license. During school I was trying to perform massages during a manicure or pedicure and my shoulders were so achy and painful it was difficult to move them. I put up with that for a few weeks until one night when I was at home and I could literally feel the pain travel from my shoulder down my arm into my wrist and hand. It was more than I could bear, so I made an appointment with my doctor the next morning. I explained the symptoms I had been having, but he had no idea what it was. A few weeks later I woke up with one of my fingers red, hot and swollen. I immediately called the doctor so he could see what was happening. Up to that point, there had been no outward symptoms of anything for him to see and he had only been able to listen to how I had been feeling. Finally, I had something to show him.
He said it was a sausage finger and took an x-ray and said this is most likely osteoarthritis. It’s definitely not Rheumatoid Arthritis, but I want you to see a rheumatologist. It took 4 months to get an appointment with the rheumatologist and by the time I got in to see her, I had severe pain in every single joint in my body. Little did I know what I was in for. She ran blood tests and confirmed that I did indeed have Rheumatoid Arthritis, but said due to my insurance, we had to start with Advil and see how things went. Of course the Advil did very little for the pain and 3 weeks later, I was involved in a fatal car accident and hit by a man who fell asleep behind the wheel. Although my car was totaled, the only injuries I had were neck and back pain, however, the stress from the accident caused a major flare up and I ended up bedridden for 3 months. I could no longer dress myself, brush my teeth, drive my car or take a bath or shower by myself. I had to rely on my daughters and husband to help me with those things and help me from my bed to the couch. I remember at one appointment asking my doctor if I’d ever be able to work again and she said she didn’t know.
At night I was only able to sleep for 20 to 30 minutes at a time and would wake up my family at night because the pain was so bad I was crying in my sleep. I never could have imagined that trying to bend your knees, or turn yourself over at night would cause the intense pain that it did. The pain was excruciating and I had a new understanding about why people who had chronic pain killed themselves. I had several pity parties and was so depressed and couldn’t believe this was the life I was going to have. Finally in September I convinced my doctor to try some different medications. She started me on methotrexate, Diclofenac and Plaquenil. Wow – what a difference!!! I found a job and started working one month later. I was fairly pain free for a few years. I continued to have flare ups and had trouble using my hands, but rarely missed a day at work.
I was doing so well in fact, that I quit my job and opened a salon. With the help of family and friends we did all the work ourselves and it was a thriving business. During this time, my husband lost his job and we had to change insurance companies. I moved from doctor to doctor, trying to find one I trusted, who could manage my pain. I still continued on the same drugs but Arava was added and within a few months, I had lost more than 1/2 of my hair, which was a side effect that I wasn’t told about. So I discontinued using that. In the meantime, I developed nodules on my vocal chords so needless to say, my voice changed and became raspy and on occasion I have no voice at all. It seemed I couldn’t find a rheumatologist who could keep my pain under control and went on for a few years before we were finally able to change insurance companies again and I found a great doctor.
I had been having an underlying cough for about four years and come to find out, it was caused by the methotrexate, which should have never been prescribed because I have asthma. So my doctor took me off that, kept me on the Diclofenac and Plaquenil, but also added prednisone, Sulfasalazine and started me on Enbrel. The Enbrel worked great for a few months, but then I started having numbness and tingling in my hands and feet, which my doctor said was a neurologic disorder so I could no longer take that or any other drugs in the same family. This was news I didn’t want to hear and was told I was at the end of the list of medications and the only thing left was Orencia infusions with the hope that would work for me. In order to keep me working and fairly pain free, he increased the prednisone to 20mg a day. I have now been on prednisone for five years, which of course is a double edged sword. It does help me with the pain and inflammation, but I have gained quite a bit of weight and from what I have read, it’s not good to be on it long term. The Orencia has worked fairly well, but even with that, I have developed nodules on my fingers and elbows. Last January I started having severe back pain and it got to the point where I could barely walk. So after x-rays and an MRI, they found a synovial cyst on my spine as well as a herniated disc, degenerative disc disease, and spinal stenosis. I had surgery on my back in June to remove the cyst as well as a laminectomy, which was completely successful thank God!
Living with RA is a definite challenge, but I have found that a positive attitude and trying to stay as stress free as possible helps immensely. I still have pain every day and live with the problems with my voice and dry eyes that sometimes feel like they have sand in them, but compared to how I felt during those months when I was bedridden, I am doing quite well. I can only hope that they continue to develop drugs to deal with the pain and progression of this disease. On a side note, my youngest daughter was diagnosed with fibromyalgia at 15. She has been living with that for 6 years now and I hate knowing that I have passed a disorder along to her. However, we both know what it’s like to live with chronic pain and lean on each other for support, which is very comforting.
This is Judi’s onset of Rheumatoid Arthritis story, in her own words.
When I was seven years old I remember getting very high fevers. I was in and out of the hospital constantly. The doctors didn’t know what was causing the fevers. I also was having great pain in my legs. My mother changed my school so I didn’t have to walk so far. The earliest I can remember being in the hospital is when I had a high fever. The nurses would put me in a bathtub of water and ice! Then they gave me ice cold chocolate milk to drink. They would put me in the bed and surround me with ice packs. I remember moving them constantly. The nurse came back and forth to push them back on me. I would move them again. I also remember having a spinal tap. That was scary! I went back and forth this way for years. Then the doctors told my mother that it was Juvenile Rheumatoid Arthritis (JRA).
They diagnosed me through the process of elimination. The treatment back then in sixties was four aspirin a day. That was all there was to help me then. I don’t remember when I quit hurting, but I did. I went into remission. I was very active in school: gym, Pom-poms, etc. Still looking back it was always with me that I could feel my legs more than others did. I still walked all around the city or rode my bike. You couldn’t keep me down! I went on to high school and afterward moved to Texas. I had odd jobs, but finally I enrolled in The Painters and Paperhangers apprenticeship program. I worked like a man did if not harder. I was the second woman in the Painters Union! Yes I had pain but contributed it to the hard work. Then in 1989, I went to work for a printing company and worked in the shipping department. It was more hard work. Then I started getting painful elbows hands knees. The company sent me to a workmen’s compensation doctor who did surgeries on my elbows and hands.
I had two surgeries on one knee. In 2003 I was sent to the bindery department to work on machines that sent out coupons that were folded brochures. Stuff like that. I was terrible at it! My hands just wouldn’t work! I would cry and cry because I was good at everything. Then the company went out of business. I went to a doctor in Texas and he said I didn’t have Rheumatoid Arthritis. After I moved back home, I went to another doctor and he said I didn’t have Rheumatoid Arthritis. Finally went to a rheumatologist, and of course I did have it! I thought I was crazy or a hypochondriac. I was diagnosed with RA and fibromyalgia. That made all the sense in the world to me then. My legs hurt at the knees and fibro hurt on the muscle. My mother would rub my legs when I was little. Now eight years later and I’m full blown with RA in every joint! I’m disabled and stay at home now. I’m glad I’m not crazy! Thanks to Kelly Young and RA Warrior, I’m a better informed patient. I have a community to talk to and share my pain!