Posted by: Catherine Lugg | February 2, 2012

Towards a new normal

For the past year, I have been increasingly inconsistent in maintaining this blog. Part of this has had to do with my insanely busy professional life. But, I have also felt increasingly cruddy. There was nothing too alarming that was happening for most of this time. I just felt tired, achy, blown out. Some mornings, I’d wake up feeling very hung-over–but I don’t drink. And some mornings I would have a difficult time staying awake as I drove in to teach my 9:30 AM class (Spring 2011).

Many 40-somethings have these rough spots and the cause can be as simple as old-fashioned exhaustion.

Except, starting in August of 2011, I started having very new-fashioned joint flares. I would wake up WIDE awake sometimes at 4 AM, sometimes at 2 AM, because some evil gremlin had replaced all of the synovial fluid in my hands and feet with gasoline and then set everything alight. By late September, I finally realized what the problem was and then dutifully headed off to check-in with the medical establishment.

It’s taken a few months to sort things out, partially because you don’t really want this diagnosis and MDs really don’t want to make this diagnosis: rheumatoid arthritis.

Now, a lot of folks confuse rheumatoid arthritis (RA) with the more common osteoarthritis (OA). OA is the “wear and tear” arthritis–something I’ve had for years. OA is the nagging, PITA [pain in the a**] aches and pains that ebb and flow, even with the weather. But generally, OA can be managed through medicine, diet and exercise. RA, by contrast, is an autoimmune disease where my immune system is on major over-drive.* In fact, my immune system is currently so “over-amped” that it is trying to eat my joints, and if it continues unabated, will eventually feast upon my organs as well (heart, lungs, eyes and kidneys).

The typical symptoms of RA are fatigue, brain fog, and joint flares. The most bothersome for me is the joint flare. As a kid, I stood too close to a wire electric floor heater a few times, which gave me a really creepy burning sensation. During a joint flare, I have this same cooking/burning sensation, but it’s on the inside of the affected joints (wrists, fingers, elbow, feet, ankles and knees), followed by waves of nausea and feeling very “hung over” once the heat subsides. The affected joints are left aching and stiff. It is quite debilitating and it is nothing like anything else I’ve ever experienced. (If you’re really interested in the biological mechanisms, please see this).

RA is treatable, but not curable (unlike many forms of cancer, but like AIDS). It also tends to run in families: My mom’s mom had RA, her sister had it, and their mother probably died from it–at the grand old age of 45. Endless numbers cousins have it as well. To be quite blunt, unabated, RA is lethal. In the bad old days (before the late 1980s), patients were given gold injections, massive amounts of prednisone, and stinky Darvon for the pain (the FDA banned Darvon in 2010). This is the treatment protocol that my Grandmother Pearson endured. And unlike many people, she actually tolerated the gold injections. The Prednisone doses were too high, and her vertebrae eventually collapsed, but this also can happen with untreated RA.

Yet even in the bad old days of incredibly toxic treatments, treatment did have its advantages. My Grandma Pearson lived to be 80 years old and worked as a public school teacher until age 70. By contrast, her sister, who was but a mere year older, died at age 64, probably from RA-related complications (heart disease is a considerable risk). The biggest difference between the two women is one had long-standing health insurance and access to decent health care (Grandma, who taught HS English for 45 years) and one did not (her sister).

Today, with the advent of chemotherapy (yes, but in much lower doses–typically methotrexate), and the biologics (Enbrel is the best known), patients can hope to avoid the massive joint damage that my Grandmother, and her sister, and their mother endured. The goal is to “nuke” RA into remission, and if that can’t be done, the goal becomes to slow down the decline into total disability. And to be honest, a fair number of individuals do have disease that is “resistant” to current treatment. But, for now, I’m going to err on the side of optimism. While I lost on the genetic lottery on this disease, I’m hoping that I respond as well as my grandmother did to what are admittedly toxic medications.**

What it means for this blog is that I will probably a consistently inconsistent presence, posting when I can, but I may have times when I can’t. This is, after all, a new normal.

*For about the last three years, I have had this freakish ability to avoid any and all infections. In 2009, my mom was in an isolation ward with a massive Clostridium Difficile infection. After two days of visiting her, I dumped the “moon suit” gear, finding the entire rigmarole far too cumbersome. The nurses nearly had a stroke seeing me “naked,” but I was perfectly fine as I stayed with mom 12-16 hours a day (for two weeks). Nary a burp or twinge from me. Mom recovered and I was never sick. But give how contagious c diff is, I should not have escaped unscathed. Clearly, I have enjoyed a certain degree of immunological impunity. Alas, with the arrival of Prednisone and methotrexate (my current DMARDs or Disease-modifying antirheumatic drugs), those days are over.

**A gentle warning. I have no patience with suggestions that I alter my diet or seek out “alternative treatments” a la Venus Williams or Steve Jobs. I really like science, inadequate as it can be at the present. I am utterly hostile towards “mystical treatments.” To be unkind, it’s expensively packaged Hill Billy medicine. I have no desire to return to the Appalachian ways of my youth. So, I’m FINE with a lifetime of various DMARDS, possible biologics, and NSAIDs. Ingesting possibly inadequate and toxic medicines beats consuming outright snake oil every single day in my book.

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Responses

  1. Good luck as you embark on your “new normal” life. I was also recently diagnosed with RA, so I can relate. Like many RA patients, I have had a lot of difficulty over the past few years finding a competent rheumatologist, but recently found one in NYC. I don’t know if you are satisfied (or will continue to be satisfied) with your current physician(s), but if you ever feel like you need to see a rheumatologist that comes highly recommended by her patients (I’m not the only one singing her praises), please feel free to reach out to me at the email I have supplied with this response and I would be happy to put you in touch with her.

  2. What an excellent, informative post, Catherine! While a diagnosis of RA is never, ever good news, medical science has come a very long way in a relatively short time in treating this disease and making it very much easier to bear. Like your Grandmother, I also took gold injections in the late 80s (along with massive doses of NSAIDs). None of it worked for me; instead I suffered truly awful flares. I coped, somehow, as we ALL do, somehow. Since then medicine has developed so many more effective treatments, so I think it’s okay to hope for a cure in our lifetimes.

    Another thing that’s changed in the 25-ish years since I was diagnosed is the easy access to comprehensive information about RA. This is something that has, literally, changed my life and my approach to living with this disease. I don’t have any friends or family who also has RA, but I’ve made many friends online that share it and offer an incredible, constant dose of moral support and genuine empathy along with encouragement and humor. This has made all the difference, for me.

    I hope your current medication cocktail will soon bring your RA symptoms “under control.” I put that in quotation marks because, as all of us soon discover, our description of “under control” and the rheumatologist’s tend to be rather different. In any case, I wish you comfort, peace and a very large helping of hope.

  3. I have RA, a severe case of it. The meds that I took to control it (Humera and Methotrexate) have led to another new disease called MDS. It was a trying summer, dealing with both of these since the MDS makes you anemic and transfusion dependent and the RA hurts! I’ve been looking for a blog, thank you. I’m getting ready to go into City of Hope for a bone marrow transplant. The doctors have said the BMT can cure both the RA and the MDS. It will be tough, I’m scared, but going for it. Good luck to you and anyone who posts here…… By the way, the last med was using for the RA were Orencia, and after 3 infusions, it really started to work….

  4. This was so perfectly written. I hope you have found your new normal! The Enbrel, Methotrexate combination. I will ride this path along side of you! Good Luck!

  5. […] I have gone from having early stage Rheumatoid Arthritis (RA)  to severe and aggressive RA in a fairly short amount of time. To wit: Over the Christmas holiday, […]

  6. Just a note to say it’s such a pleasure to read your blog. It helps me to feel less alone in my own RA battle…….keep up the good work.


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