Your Rheumatoid Arthritis Onset Stories, page 23

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Dana’s Rheumatoid Arthritis story
Mallory’s Rheumatoid Arthritis story
Jean’s Rheumatoid Arthritis story

This is Dana’s onset of Rheumatoid Arthritis story, in her own words.

It was a sunny spring day in 2004. I was 19 years old, and a happy, healthy college student at Cedarville University in Ohio. Or so I thought. It was almost the end of the semester when I noticed that a finger on my left hand was sore – almost as though I had somehow jammed it. I didn’t recall doing anything to it, but who knows – I was fairly active. I ignored this symptom for a while, until I realized that it had been a few weeks and it had still not gone away or gotten any better. I decided to make an appointment to see my doctor to see what she recommended. Nothing much was accomplished at my first doctor visit. She simply referred me to a hand specialist. By this point, I believe college was done for the semester, and I had moved back to Michigan. I spent the summer living with my dad and babysitting my cousins, while taking courses at the local community college and preparing for a more permanent move to West Michigan. At some point early in the summer, I had my appointment with the hand specialist. Based on my symptoms, he believed that I had tendinitis. He prescribed some Naproxen, told me to take it for a few weeks, and then he’d see me back.

A funny thing happened in the coming days. Not only was the medicine not helping my finger, but the pain had switched hands! It was now a different finger on my right hand that hurt. Whoa, that was weird. Was I going crazy? It was originally my left hand that hurt, wasn’t it? Surely I hadn’t inadvertently, without realizing it, injured another, different finger? I knew something was up. I didn’t have tendinitis. When I reported back to the hand specialist what had happened, he immediately referred me to a rheumatologist. I had several appointments with the rheumatologist, during which he examined me and took blood tests. Meanwhile, I was shocked one day to realize while babysitting that my feet were hurting me.  It couldn’t be that the same thing causing pain in my hands could also cause pain in my feet – could it?

My blood tests revealed a positive Rheumatoid factor and the presence of antinuclear antibodies (ANA) – and probably several other things that I didn’t pay attention to – and the rheumatologist eventually diagnosed me with Rheumatoid Arthritis. He explained that this differed from osteoarthritis (though, at the time, I didn’t fully understand that difference), and told my mom and I that this was something that needed to be treated aggressively so that we could try to prevent the disease from doing any permanent damage to my body.

I think I was in shock.  I always HATED being sick. I know nobody likes it, but just the thought of being sick when I was a kid made me sad, frustrated and depressed. I didn’t like anything that limited me from playing and being active. Now I had a disease that was not going to go away, and was getting worse. I broke down one day after babysitting and just cried. I didn’t want to let this disease slowly destroy my body and take away my life.

Fortunately, my doctor did prescribe methotrexate for me and had me start on it immediately, in addition to the Naproxen. By this time, summer was almost over, and I was off to start a new life at a new college in a new town, with (hopefully) a new job. I moved two hours away, and continued to commute back to my rheumatologist’s office every few weeks until we could get my treatment figured out.

At first, the methotrexate didn’t seem to be helping.  The pain continued to spread.  It sometimes kept me awake at night. I began to walk with a limp. I tried hard not to, and not to let anybody see that I was in pain, and even tried to tell myself that it wasn’t that bad. I worked one job for a couple months, without any problems, and school was going fine – except for the buildings that had stairs leading up to them-I had to walk stairs slowly, using the railing and putting both feet on each stair. Of course, it didn’t make matters easier that I lived in a 3rd story apartment!

Towards the end of the year, I was about to start a new job that required some clerical duties when I suddenly realized that I wasn’t sure if I was going to be able to hold a pen in my hand. My fingers had gotten to the point where they were swollen and didn’t bend quite right – or at all. At that point, I was truly scared.

I had one more appointment at the rheumatologist, and he decided to up my dose of methotrexate. I wasn’t convinced that it was doing anything – until that point. Once the drugs were in my system for a while and the proper dosage was determined, I started to see major improvements very quickly. I no longer walked with a limp. I could hold a pen and write without problems. I wasn’t being awakened in the middle of the night with the deep sharp pain in my bones. I still hand some symptoms: I had a lot of morning stiffness; I had one finger that still wouldn’t bend right; my wrists were very weak and oftentimes sore. Some of these would come and go, and some continued to possibly get a little worse. But, I was happy.  I could live my life normally, with minimal problems.

Without launching into another whole story – I tried some alternative therapies for a while, which didn’t help and may have hurt. A few years after my initial symptoms began, I finally started seeing a rheumatologist in the town I was living. I had a bad flare up in my knees, and it was just a few short weeks before my wedding. I was scared I wouldn’t be able to stand up during my wedding ceremony.  But, my new doctor was very kind and seemed to know just what to do. He put me on a tapering dose of prednisone to knock out the flare (which it did). Not wanting to test a new drug right before my wedding, we held off a bit, and then I started on Enbrel in I think September of 2007. I had been feeling pretty good, and eventually weaned myself off of the methotrexate (for family planning reasons). Since the beginning of 2008, I have been solely on Enbrel — taking Naproxen as needed (I realized it does help a bit for taking the edge off of certain types of pain or inflammation). Enbrel has worked great – even better than the methotrexate. There are days where I am almost symptom-free, and my “bad” days are not anything near my truly bad days: usually just minor swelling and low levels of pain. What’s better is that I haven’t even had any side effects from my medicine – that huge, scary list of things that could potentially go wrong has not yet become a problem for me. I can only hope and pray that my RA continues to be this well managed.

I am so grateful for my doctors who were able to quickly diagnose me and believed in treating the disease aggressively from the onset.  I am grateful for the drugs that exist that enable me to still do the things I love to do, which RA has taken away from so many – cooking, gardening, hiking, skiing, etc. And I am grateful for RA Warrior – for all of the research that Kelly has done (I have learned SO much), and for the support and stories of others. I hope to have a long life ahead of me, and sometimes it scares me when I think what my RA could progress to in that time – but knowing that there are others who understand my struggles and to see how others have managed has been such a huge blessing!

You can hear more from Dana on her blog, Water’s Edge.

This is Mallory’s onset of Juvenile Arthritis story, in her own words.

Here is my story: It was winter 1989, I was only 3.5 years old… My mom took my sister and I down to Texas to visit family. One morning I woke up and my left knee was so swollen I couldn’t move it at all. My mom thought I had maybe gotten bit by a foreign bug, I was crying so badly, my mom had to carry me to the local walk-in clinic. The doctor there told my mom I had something called JRA. My mom thought I couldn’t possibly have that; it’s an “old person’s disease,” so she decided to take us home to our local doctor for a second opinion.

We got home and the doctor said I did not have JRA, and put me in a cast!! I was in the cast for 6 weeks or so. When the cast came off, I cried for 3 days straight and couldn’t walk or move my leg. My leg was literally locked in the bent position. A friend told my mom to take me to Children’s Hospital in Boston. There I met with the best doctor ever, and he diagnosed me with JRA, along with uveitis in my left eye. I had to go through months and months and months of physical therapy, because I couldn’t walk, or move my leg still. Once I gained some movement, I had to use walker for a while, before I learned how to walk all over again. I was laughed at by other children when I was in public with the walker, and was turned down by lots of preschools.  It was a long road, but I always stayed strong.

After starting treatment, I started having severe stomach issues and started internally bleeding, GI bleeding.  I found out it was from Advil (ibuprofen /NSAIDs), so I had to stop those immediately. This made finding medicines very difficult, and even more so as time went on.

By the time I was 8 years old, the JRA had spread to all of my joints, all over my body. I was also diagnosed with glaucoma and a cataract in the left eye. It made everyday tasks hard to do, but again, I stayed strong. Over the years, I’ve had at least 5 glaucoma surgeries for my eye, because the glaucoma and uveitis medicines counteract each other, making things very difficult.

When I was 12, and got my first period I had severe cramps and sickness that kept me out of school. I was diagnosed with dysmenorrhea and put on oral contraceptives.  I still have severe cramping to this day, even after switching my pills many different times. Also around middle school age, I was diagnosed with asthma and fibromyalgia.

Over the years I have tried many different medicines; Remicade, Enbrel, methotrexate, gold injections, Humira, Rituxan, prednisone, and Arava… to name a few. I’ve had weird reactions with some, whereas some didn’t work at all. Remicade I stopped breathing, Enbrel worked for my joints okay, but did nothing for the uveitis. With methotrexate, I had lung toxicity; gold injections didn’t work; Rituxan dropped my white blood cell count dangerously low; with Arava, my liver.

From 2000 – 2002, I was actually in the study for the medicine Enbrel and was able to travel to the National Institutes of Health (NIH) in Maryland.  That was a great experience! Except for being on a plane on 9/11/2001, but that’s another story.

In 2008, I started getting really sick – I had sinus infections that lasted months, double ear infections for almost 5 months straight, both need a few courses of antibiotics of all different kinds to get rid of the infection. Then in 2009, I got double pneumonia that lasted just over 6 months, and halfway through that, I got the swine flu (H1N1) on top of it. Something was up, I finally had to realize it was time to stop working (I had been working since I was 15), because I was just getting worse & worse. I saw an immune specialist and he diagnosed me with an IgA-deficiency and an anti-A-antibody. My body has absolutely NO A-antibodies (the ones that fight off infections in the ears, nose, throat and lungs), and my body built up an antibody against them. I can never receive them or my body will go into anaphylactic shock.  I now have to give myself a sort of IV once a week called Hizentra that has other antibodies in it, along with an antibiotic once a week.

A few months ago, my rheum doctor sent me for a bone marrow test and I found out I have osteopenia in my neck and right hip.  My hip is two points away from osteoporosis. Also, for the past few months I have had severe digestive issues.  I saw a GI specialist and am scheduled for a colonoscopy because she believes I now have Crohn’s disease.

Currently I am on Humira once a week, methotrexate 25mg injection once a week, and prednisone 5mg daily for the JRA. You’re probably wondering why I am taking methotrexate when I said I had a bad reaction to it, right? Well since it’s been well over 10 years when I last took it, and my doctor and I have really run out of options, I accepted to give it a go. I took the pills for 6 months with no reactions, and now switched to injection. My body has gone through so many changes since then, so it was worth a try. I also take an inhaler, Hizentra, Azithromycian, Lecourcovin, Pred-Forte, Alphagan, vitamins, calcium, oral contraceptive… umm I feel like I’m forgetting something!

My doctor plans on taking me off the prednisone, once the methotrexate has had time to get into my system. I’ve only had a couple doses of it, so here’s hoping it will help. If this doesn’t work, we will have to start fresh and find something new that I can be able to take. I always seem to have new things pop up, especially as of late. I try to remain strong, with a smile on my face. I miss working, but just can’t go back right now. I was approved for disability, which helps pay the bills and medicines. I still wake up every day with stiff joints, and have a hard time moving around, and performing everyday tasks…but with this disease, the one thing I have learned is that patience is key. I still have hope I’ll feel close to normal someday.

My Rheum had told me most of my life, that since it was JRA there would be a possibility of growing out of it. If so, I would know by the time I was 18. Eighteen came and went, and I never grew out of it, nor did I ever go into a remission of any kind.

You can hear more from Mallory on her blog Maybe It’s Mallory.

This is Jean’s onset of Rheumatoid Arthritis story, in her own words.

I’m not 58 years old. I have been selling health insurance for over 13 years. What I knew of RA was that the medications were expensive and my group of employees was probably going to get a rate up from the standard rates because of the cost and amount of prescriptions someone was taking. Little did I know…

My parathyroid had been making too much calcium for years and the endocrinologist would constantly be checking me out along with my diabetes that I inherited from my mother’s side of the family. In checking my parathyroid again last summer, they found a small cancerous tumor in my thyroid and in August 2010 I had surgery to remove the thyroid. No radiation necessary; easy surgery. Except my right ankle hurt for many days and a trip to the ER found nothing. Soon after that subsided, the balls of my feet hurt.

I would talk to the endocrinologist and he knew it wasn’t from the diabetes as it was under control and it didn’t follow neuropathy symptoms.  So we thought, maybe I needed the calcium I was no longer making and he gave me a prescription for calcium, but nothing changed.

As months progressed, my feet became swollen and much more sore and my hands hurt a bit. I just did not feel good. I went to my primary doctor in December, and they did blood work letting me know a week later that I had Rheumatoid Arthritis and it took over a month to get an appointment for a rheumatologist. On Christmas day last year, it all hit me and I hurt in my jaw where I once had TMJ, my shoulders, upper arms (we think radiating from shoulders), elbows, wrists, hands (especially right) and left ankle. Though my knees were spared from the inflammation, my muscles in my thighs were killing me.  I went from my bed to the recliner in the family room and basically could not even pull up the covers on the bed because everything hurt so bad. I still can’t even pick up my jeans or slacks without a lot of discomfort.

Because of being diabetic, no prednisone for me.  I’ve had methotrexate shots and now Enbrel too.  My first Enbrel shot was a dream come true, but has since then not quite as good.  My right hand and both shoulders are the worst and I have to watch how much I do.  I find no rhyme or reason to my pain but it’s funny that once you’re practically crippled from a flare, when you still hurt, you know it’s an improvement.  That’s a bit sad.  The rheumatologist says Enbrel can take up to 6 months to really work – I’m looking forward to September!

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