Mellie’s Rheumatoid Arthritis story
Susan R.’s Rheumatoid Arthritis story
Tish’s Rheumatoid Arthritis story
This is Mellie’s onset of Rheumatoid disease story, in her own words.
Hello! My name is Melissa and I was diagnosed with RA back in 1985 when I was only 20 months old. (JRA) I was a year almost a year and a half old and still not walking, I didn’t want to be held and I often ran a fever. I also had swollen knees and ankles. After seeing my family doctor, he told my parents that I was just a lazy baby and that I would walk when I was ready. As time went on, my symptoms kept on and were not getting any better. My fever continued as did my mood and temper as a young child. I was eventually taken to a bigger hospital where they began running several tests and it finally came back that I had RA. I was told as a child that I would be in a wheelchair by the time I was 12. Little did they know I was stronger than that.
I began traveling an hour and a half to see a rheumatologist right away at a children’s hospital and went through a handful of medications from prednisone, to methotrexate to Celebrex. I tried IV treatments until I began Enbrel when it first came out. While the Enbrel was working, it was also weakening my immune system, which was just something else to deal with on top of the RA. I had my ankle fused when I was in junior high to deal with the damage that had already taken place as well as to ease a lot of pain. I did endless hours of physical therapy, wore more splints and braces than I can even count. I grew up always wondering why I was born with the disease, knowing I was different from everyone else but did the best I could.
When I turned 18, it was time to find an adult rheumatologist to keep up my treatment. A few years later, while working on my feet part time, I began having problems with my knee. Shortly after that, I had surgery to correct the shifting and damage of my kneecap. Thankfully, that struck me to get healthy and fit and lose a significant amount of weight.
Now at 27, I am proud to say I’m still trucking along, walking on my own and dealing with the disease as best as I can. I try to remain as independent as I can, doing things on my own, working, etc. I go through good days and bad but don’t plan on giving up anytime soon even though there are days where I’d love to throw in the towel. The disease pretty much affects all of my joints but some more then others, depending on the day- mostly my ankles, knees, elbows, fingers. I’ve bounced from different medications (currently on Cimzia) trying to find something to work a hundred percent but I’ve realized those are hard to come by. I’ve learned to live through the pain whether it’s using ice or a heating pad or just telling myself it will eventually go away. It certainly weighs heavy on my shoulders some days but I try to stay as active as I can to keep my body moving as best as possible!
This is Susan R.’s onset of Rheumatoid disease story, in her own words.
Dear Kelly…I have waited awhile to share my onset story, as my doctors were trying to figure out what was “up” with my RA, but I have finally decided that my RA would be constantly evolving and changing for the rest of my life anyway, so I figured it was time to share my story.
My RA began suddenly with what I thought was a virus in my early forties. At the time I had two school age children and led a very active life. I was your classic PTA mom, scout leader, and even was working part time as a dental hygienist. I developed a high fever one morning combined with horrible joint pain. I lay in bed and literally could not move. It lasted for several days and finally the fever broke and life returned to normal. Little did I know that my life would change forever.
I bean noticing that upon rising in the morning, I would be in a great deal of pain. I would be stiff, sore, and my hands, wrists and feet would ache terribly. I just passed it off as a consequence of turning forty. My symptoms seemed to worsen and I headed off to my family physician, who sent me finally to my first rheumatologist. At my first visit and exam areas of joint swelling were noticed and pointed out to me and I remember thinking how strange that was and struggled to think just how I could of injured myself. Then after the exam, he said well you could have Fibromyalgia but it could be Rheumatoid Arthritis, but I really don’t think so because your labs are normal, so I will prescribe pool therapy but you really don’t need those strong medicines many are dangerous, so I was only told to take ibuprofen. I thought he was wonderful; I liked to swim so it was all fine with me, the swimming did nothing but the warm water felt wonderful. The ibuprofen did nothing for the pain. As a dental hygienist, it became impossible to hold an instrument let alone treat patients and I lost my ability to work.
In time however, the pain, swelling and stiffness subsided over the course of several months and I thought, whatever “it” was, was gone for good, but I still could not treat patients as a dental hygienist, instruments would drop right out of my hand, it just hurt too much. In 1997 we moved out of state to Maine and our initiation to a Maine winter was quite a shock, even though we have always been New Englanders. During the big ice storm of 1998, I fell and broke my leg and took 1/3rd of the cartilage out of my right knee and needed surgery. After the surgery my RA symptoms came back full force and I referred again to a rheumatologist. This time however I got a diagnosis of RA. The rheumatologist however was very upbeat and prescribed Plaquenil and said to me that my “type” of RA would just probably go away. (Little did I know back then!) I did take the Plaquenil and I did go into what he called remission. I remember leaving the office thinking, if this is remission, then maybe my symptoms are really just due to old age.
Years went by, flaring up with symptoms from time to time and not really taking them seriously because after all my labs are normal. Then in 2010 I had a gall bladder surgery and my RA became very severe. I became basically disabled. There was not a joint in my body that didn’t hurt. My feet were and still are so painful I can barely walk. I was sent to another rheumatologist who barely examined me and put me back on Plaquenil, but this time Plaquenil did not have any effect on my RA. As my RA worsened, it took me being barely able to walk before being put on methotrexate, which only kept me at a very low level of functioning. My rheumatologist refused to prescribe steroids because he did not think I was bad enough, after all my labs were not that bad. I remember thinking, well how bad do I have to get until you treat me with something that works!
I finally needed up in the ER because of difficulty walking and a merciful physicians assistant gave me a steroid shot and a steroid taper and for a while at least, My RA became tolerable. I remember my primary care physician being very angry with the ER for putting me on those dangerous steroids and my rheumatologist was just as angry. But, it certainly got their attention, and I was finally recommended for biologics.
I have so far failed one TNF inhibitor (Humira) and I am currently on Remicade and I am not doing well at all, we think maybe Actemra is next. I finally was able to see a podiatrist who examined my feet and said he is extremely concerned about stabilizing my feet as the joints are showing the effects of chronic RA inflammation. I have an appointment for orthotics and RX shoes. My wrists are becoming very weak and bursitis in my hips and shoulders cause constant pain. My knees will need to be replaced at a later date. So RA is marching on and I continue the good fight. I wonder how come, as patients we have to fight so hard to get care. I did not include in this onset story the hundreds of inaccurate, rude, and downright disrespectful statements made to me by health professionals regarding my RA. It would take too long to describe the ignorance, which has been shocking to say the least.
I have had many wonderful doctors also during the course of my treatment. My wonderful NEW nurse practitioner who is my new primary care physician. She believes me, refers me to the right doctors now, and is VERY comprehensive in her care. My podiatrist is also marvelous and gives a better exam than my rheumatologist. My current rheumatologist is leaving the country to practice overseas and now I will be under the care of his current rheum nurse practitioner as the hospital looks for a new rheumatologist. God only knows how my care is going to be now. So my story will continue as I keep shuffling along with this thing called life.
This is Tish F.’s onset of Rheumatoid disease story, in her own words.
After reading about a dozen stories, I was struck by the multiple mentions of having an inflammation of the GREAT TOE (which all Dr’s immediately diagnose as GOUT) as one of the first indications of inflammation. In the spring of 1996, I started having weird inflammations of my thumb joints. One hand, then a few days later, the other hand. They would last only a day or so, then go away. I finally visited my Dr about this, and the blood work was normal, so he advised that I write using a Sharpie pen (easier than ball pt pen), and use wrist guards when typing on the computer. Eventually the problematic flares went away, after several months of weekly flares.
Then, in the fall of that year, one evening as I was getting into bed, suddenly my GREAT TOE just ballooned, was red and painful. I knew from my diet that it could not possibly be gout, so I saw the Dr, who pronounced it was gout. I told him that was impossible. In a huff, he took some blood, and then a few minutes later sheepishly returned to say that it was not gout, after all. He referred me to a Rheumatologist, who had me get more blood tests. When those came back, there was nothing obvious, so he said it was just a fluke, nothing to worry about.
Flash forward 10 years, with no further flares of any note. I had spent a full year with chronic digestive issues (later determined to be Giardia, but the lab test had come back negative for parasites). Then suddenly I would have a sore wrist, would last about 18 hours, then go away. A couple days later, a sore elbow. Again, 18 hours later, all OK. Then a sore shoulder. Always just one joint, always lasted about 18 hours, then would go away. My GP referred me back to the Rheumatologist I had seen in 1996. It took 3 months to get in to see him in September 2006. When I described the symptoms (which had continued, jumping from one joint to another, one at a time, flare then subside) he told me I had Palindromic Rheumatoid Arthritis, and gave me an article, which described my symptoms to a T. He ordered blood work, and I returned two weeks later to find out the results. Definitely RA… the levels were relatively low, but the symptoms plus bloodwork were conclusive. He told me to take Motrin 8 to 12 times a day, come back in 3 months and see where we were.
Meanwhile, I hit the internet, got onto a Yahoo RA support forum, and serendipity hit. Found out about a possible link between leaky gut and RA…so treated myself for parasites, and sure enough, that was a definite issue! Also found out about treating RA with antibiotics. Did the research, printed articles. Also paid attention to foods that seemed to trigger flares within an hour of eating…and was able to reduce the intensity and frequency by eliminating many foods. But the flares continued to pop up every few days. In early December, went back to the Rheumatologist, and convinced him to let me try the antibiotics protocol. Have been on that ever since, not without a few hiccups. But overall I have been extremely fortunate to have stopped the progression of the disease. A change in formulation of the generic drug doxycycline that I was taking caused a relapse that over the course of three months reduced me to needing a walker, having to use a pair of pliers to turn the key in my ignition, etc etc. You all know the symptoms when they are bad. The pain is excruciating. I felt joints that I never realized were even there! (My collarbone, for instance!). Finally modified brands, switched back to minocycline, long slow road back to remission. Quite recently I had surgery to remove a kidney stone that was stuck. Took some medication after the surgery that made me horribly ill. When I went back to my RA medications, the flare ups started again. It has been 3 weeks and I have been adjusting my meds, trying to battle this thing back into remission. I am quite concerned because (a) the brand Vibramycin that I was taking is now changed to a dissolvable tablet, and does not seem to work) and (b) the brand of generic minocycline that I was taking is no longer available locally, and the other brands do not seem to work. So I had ordered the BRAND Minocin, used it for several months last year with no problems, but the most recent refill is now a slow release tablet, and THAT does not seem to work the way the original capsule did. Apparently there is something about the inert ingredients that makes a HUGE difference in whether or not an antibiotic will go to the joints…. and into the synovia… So, the battle is on….