John’s Rheumatoid Arthritis story
Theresa’s Rheumatoid Arthritis story
Dorothy’s Rheumatoid Arthritis story
Emily’s Rheumatoid Arthritis story
This is John’s onset of Rheumatoid Arthritis story, in his own words.
I was a pretty active person, serving as a police officer for 15 years then moving in the Safety and Environmental field after getting my degrees from UH. As a cop I used to do lots of extra jobs and the standing would really get to me – my knees, hands, neck shoulders – everything ached. About a year after I left the force (1995) I was playing basketball with some neighbors and tore my Achilles tendon, the first break and tear in a downward spiral. A year after that, I was really stressed when my wife left us but I kept battling the fatigue and pain.
A friend suggested bike riding. I took that up with a vengeance, dropping some weight and feeling better about life, until I badly strained another tendon in my foot. That took me off the bike for a while and in to see my orthopedic surgeon. During my recovery, he asked me if everything else was OK. I told him about this pain that had been bothering me, off and on for years. It had gotten progressively worse. He asked for a description – I told him it sounded weird, but my joints would ache terribly from my neck, then slowly into my shoulders and slowly over a week or two feel like it was inching its way out of my body finally radiating thru my hands until it would stop a few weeks later. I asked him if he could prescribe something for the pain.
Dr B. looked at me and said no, but he would refer me to another doctor, especially after asking me a few questions about family history and finding that my mother had some mild Rheumatoid Arthritis and my aunt had Lupus. I made the appointment with the rheumatologist who actually saw in a few weeks, even being a new patient. After a series of blood tests, he called me in and gave me the announcement – he was damn sure I had RA. I started with some steroid shots as I was in the middle of a flare up when I saw him, then on the methotrexate. That had little results, so soon I was placed on Humira.
I responded well to Humira, so well in fact that I was back on the bike and did a couple of MS 150’s with just minor pain from time to time. My insurance at the time wasn’t great, but it beat paying $1400 for 2 shots per month. All good things end however – soon my company was sold and I was out of a job and out of insurance. I had 2 shots left, so I spaced them out as far as I could. In February of 2005 I was out of shots. I gradually spiraled into a series of flare ups that would last for weeks on end. By August, I was in pain most of the time, needing help from my boys to even get my shoes tied and get dressed. For a 45 year old man, previously strong and active, this was like the death sentence. The new job had terrible insurance, but it did have some after 6 months, so in August I called a new RA doc (the old one was not on our plan) the soonest I could get in was October. Until that time I would go to the doctor that I used for our company’s worker compensation injuries. He would shoot me up with steroids and hold off the pain to a minimum, but the swelling got worse and worse.
By the time I got in to see Dr. W., I was in very bad shape. During a flare up I described my walk like that of a 90 year old man ready to die. He gave me some shots of Humira that he had on stock. Wow, the first one helped in days. I thought I had found my stride, but this time the second round had no effect and the subsequent rounds were useless. W. told me “That happens.” Luckily I got a new job with better benefits in January. We began on a high dose regimen of prednisone, methotrexate and started Remicade infusions. Dr. W. explained that although the Humira worked pretty quickly, we might not see such response from Remicade, especially since I was in such an immune-wracked status.
Every joint was almost constantly inflamed. My weight jumped 50 pounds in a few months from the heavy doses of steroids. I traveled for business – how I hurt on planes. After about a year I was able to slowly wean myself off the steroids. New problems erupted when my knees proved to eaten away by the RA. My savoir Dr. B. asked if I wanted to be aggressive with treatment. What could I say but yes? Two total knee replacements later, one in February of 2007 and the 2nd in April got me back walking a bit better even if it slowed down my run through airports.
Since those operations I have had a few more. My thyroid was found to be enlarged. It was found when I went to the ER for acute cellulitis. They gave me Levaquin IV to see if it responded. I have never been allergic to anything, but I am to Levaquin. Out I went. A good round of epinephrine, atropine and a crash cart brought me back. The thyroid was discovered while I was recovering. That has been removed.
I began to feel better and finally got back on my bike in September of 2009, but my hands began to go numb, then my arms, mostly on the left side. Another doctor found a problem in my neck requiring fusion surgery and sucking out a bit of herniated disk. I am finally back on the bike hoping for a few more years out of my knees and a bit more luck. God still blesses me every day to keep me alive, give me a grandson and hopefully end my years teaching him the fine art of life.
This is Theresa’s onset of Rheumatoid Arthritis story, in her own words.
My name is Theresa. During the fall of 2009, I began having strange pain in my shoulder. The arm would be sore and I would have to hold it up to write on the board. See, I am a high school teacher. The shoulder would be very painful for a day or two and then it was gone. As the new year settled in, my feet started to hurt and I had pain and discomfort everywhere, but I ignored it for as long as I could.
However, as my student trip to NYC approached, I knew something had to give so I went to the doc’s in late February 2010. They did some blood tests and gave me a dose of prednisone to take. I considered prednisone my miracle because everything stopped hurting the day after I took the first dose. Then, the phone call came that my Rheumatoid factor was slightly elevated, and they were referring me to a Rheumatologist. It’s never been higher than 77. My first appointment lasted about 45 minutes and consisted of a physical exam and more blood work. He was fairly confident it was Rheumatoid Arthritis, but I was not since the prednisone was making me feel better.
I am now off prednisone but taking sulfasalazine twice a day. I feel better but not great. It seems my story is a better one than many I have read here and in other places. I’m exhausted and find that I am taking naps more frequently, but I will take the fatigue if it means the pain stays away. Initially, the sulfasalazine made me sick, and I had to split my morning dose to prevent horrendous nausea at lunch time. It took several weeks, but eventually, I was able to get off the prednisone and just take the sulfasalazine now. We talked about a biologic this past summer but so far I have been able to avoid it and my labs are pretty good right now – sed rate is within normal limits and others are either normal or just above the upper limit. I am thankful for this right now. I am a bit sore when I get up in the morning but it tends to go away before I get out of the shower. So far, there have been no x-rays or MRIs, since my range of motion has been good. On my last visit, I was told I was very flexible and I still have full range of motion in all joints, but a good deal of discomfort in my left hand this week. I have not had visible swelling yet which seems unusual. I did get a nodule on the back of my right heel which is what prompted the initial talk of a biologic, but it has now disappeared.
This diagnosis hit me like a lead balloon as there is no family history of RA and I had been totally healthy and active up until this!! I’ve accepted my diagnosis at this point and am reading all I can and working to stay flexible. A few people know of the diagnosis and I have gotten pretty good at putting on a happy face. I have yet to miss work because of pain or fatigue and I hope that will continue. I have two teenagers at home and they are starting to see that mom can’t do it all and will jump in to help at times. My path seems unusual so far.
This is Dorothy’s onset of Rheumatoid Arthritis story, in her own words.
Here is my story. My name is Dorothy. I was diagnosed 14 years ago this month. While I was pregnant with my last child, I noticed feet and hand swelling. I was pregnant, so it was normal. She was born in May. Two weeks after her birth was when I started with headaches. Non-stop headaches that felt like if I bent over to tie my shoes my head was going to explode! These lasted every day, all day and night. No pain medication would help. I finally went to the doctor about a month into the headaches. He referred me to a neurologist. I was diagnosed with Cluster headaches, put on beta blockers and anti-depressants. The medication left me in such a cloud. I told him I didn’t want the anti-depressants anymore and he told me, and I quote, “You need them and you need to go to bed when you’re tired and wake up when you are not.” Mind you, my daughter was about 3 months old, my son was 7 and I worked full-time. By this time I was giving up on help. It took me an hour to get moving in the morning. My head still hurt and my hands were so very swollen.
My father suggested a rheumatologist. My dad had Rheumatoid Arthritis later in life and thought it would be a good place to start. I went to see one and all I remember is sitting in his office while he spoke to me about the pain and symptoms I had and bursting into tears! I wasn’t crazy! He did some lab work, x-rays, and started me on prednisone and methotrexate. Once the lab work came back positive, I was started on Humira too. I was starting to feel normal again. The headaches finally went away and I could walk again. Then, came the liver problems and cough. I had to stop the methotrexate.
Since then, I have been on so many different “cocktails” of drugs. Flare-ups come and go and I have weakness in my upper leg muscle. Pain is something that I have come to live with and the swelling is now “normal” for me. My “fat hands” used to bother me so much. One day I was at the mall and decided I was going to buy myself something to take my mind off it. I bought myself a diamond ring. I call it my “fat finger ring” and look at it instead of my “fat fingers.” I also started making goals for myself. My first goal was set when my daughter started Kindergarten. I swore I would be her softball coach once she reached 4th grade. I coached her softball for four years. My next goal was to play softball again myself. I did that two years ago. I fell on my face once when my leg muscle gave out, but dusted myself off and made it through the season. Last year was bowling. I am currently on a league and bowl every other Friday. I do have some friends who will back me up if I have a flare-up, but so far I haven’t used them.
One of the oddest moments for me was about 3 years ago. I have a lot of friends that I cherish in my life. Five of us were at lunch together, something we do monthly, and one girl noticed I was looking tired. I told her I had a “treatment” this week and wasn’t feeling 100% yet. She asked me what I get for treatments and I told her Rituxan, a form of chemo. All the other girls at the table stopped talking amongst themselves, jaws dropped and looked at me like I was “crazy.” They never knew what I got for treatments. It’s funny now when I look back at that day, but at that moment I think that is when I realized I had a disease. I was sick. All the trips to the doctor, all the pokes and probes and all the nausea and fatigue…I never thought of myself as sick. It took five looks from my closest friends to trigger something inside me.
Fourteen years later, a divorce, going back to school, graduating, a new job, losing my father to cancer and all the other stresses of normal life have taught me so much. Living with RA sucks, but it isn’t going to get me down. If I have to get up an hour or two earlier then most to sit in my chair and wait for my pain meds to kick in….so be it. I am not going to sit here and be scared or let RA ruin the one life I have. I am probably the most stubborn person you will come across, just like my Dad. He was told he wouldn’t walk past the age of 50 and proved them wrong. I am going to fight it with aggressive drugs, fight through the pain and live every “good day” to the fullest. I am not crazy…I have RA.
This is Emily’s (2) onset of Rheumatoid Arthritis story, in her own words.
It all began last October. I was a 22 year old LPN doing private duty nursing. I was at home sitting “Indian style” on the floor in my bedroom. When I got up off the floor, my left knee popped and I almost immediately felt like my knee was out of place and terrible, TERRIBLE pain. The company I was doing private duty nursing for only offers part-time positions, so they do not offer health insurance. So there I was with a hurt knee and no health insurance. It hurt so badly I went to my PCP. They took x-rays. No break, and told me I sprained it.
The pain was so terrible that I called around to see if I could get medical attention with no insurance from someone, anyone. Finally an orthopedic doctor agreed to see me. I went to this doctor and he told me that from looking at me, I had torn my meniscus in my left knee. He gave me a heavy duty sports brace and set me up for an MRI ($1,000 with no insurance). I had the MRI and the orthopedic doctor told me he did not see anything wrong and just told me to wear my brace. I wore the brace for a few months and around Christmas time something strange started happening. My right knee had started doing the exact same thing. I applied for an office job so that I could get health insurance, plus I could not perform my nursing duties due to my knees.
I started a new job in January of this year but my health insurance did not kick in until May 1st. By the time I was able to go to a rheumatologist both of my knees were so swollen and hurt so bad I could not put pants on and just lay on the couch as much as possible. My elbows had started aching as well, first my left, then my right. Then my neck started bothering me. I went to a rheumatologist and from symptoms and family history told me I have Rheumatoid Arthritis. He started me on methotrexate and prednisone. I tried the methotrexate for 12 weeks and it made me feel so sick. I kept telling the doctor I couldn’t handle the medicine and he kept telling me “just take a few more prednisone” when I told him I could not sleep at night from all the pain. I decided to dump that doctor because of all this.
I am now going to a pain clinic where I am prescribed Celebrex and Flexeril and I can call if I have a flare up and they will call me in a steroid pack. The Celebrex works so well compared to the methotrexate. I feel like I am starting to be in control more than I have been. It has been very hard to sit at a desk all day when I want to be out doing nursing. It is hard to try to make other people understand what I am going through. It has been a very rough year. Since October of 2009 to right now, both of my knees and elbows, my neck, and my wrists and fingers are all involved. From one knee to several joints in just one year scares me and makes me sad.