Rheumatoid Arthritis Awareness Day – My Experience

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February 2 is Rheumatoid Arthritis Awareness Day. For those who do not know, I have lived with this disease for the last 10 years.  Only those closest to me know the exact struggles I’ve had, but it dawned on me that many may not know what rheumatoid arthritis (RA) is or how it affects people who have it.

There is a movement to change the name to Rheumatoid Disease because it has little to do with arthritis, at least the “creaky joint” kind.  Rheumatoid arthritis is an autoimmune disease, which means the body attacks areas within itself as if it were fighting an infection.  Usually, this is in the synovial areas and connective tissues of the joints and causes intense pain, swelling, redness, and rapid joint deterioration.  Along with this, the body as a whole has the effects of fighting off a sickness, much like having the flu.  It could be compared to someone fighting off double pneumonia without antibiotics, complete with the extreme fatigue, fever, chills, pain, etc.  Only it’s ongoing for days, weeks, or even months at a time.  If it goes uncontrolled, it can cause damage to the lungs, heart, and other organs of the body.

Rheumatoid disease is diagnosed by blood tests that measure inflammation (infection) in the blood stream.  Several tests are run, some of them are the rheumatoid factor, CRP, and sedimentation rate.  One measures if disposition to rheumatoid is in the blood, the others measure the amount of inflammation currently active in the body.  Affected joints also have obvious tell-tale signs in surrounding tissue with inability to move the area, obvious swelling, redness, and warmth to the touch.

There is no cure for RA and doctors are stumped by its causes.  It is linked to genetics, rapid hormonal changes, gut bacteria, and too many other theories to close the gap to a cure.  There are medications that can help stem the disease.  They start with prednisone (steroids to bring down the inflammation levels), antimalarial drugs (Plaquenil), and usually graduate to methotrexate (a chemotherapy), and self-injected biologics (medications that weaken the immune system).  There are other treatments, but these are the ones I have personally experienced.  While the meds can put some of the RA symptoms at bay, they have a myriad of side effects that can cause other systemic problems.  The chemotherapy makes patients feel generally unwell and fatigued, but also can cause kidney and/or liver damage.  The biologics can put a patient at risk for infections and other communicable diseases, making even a trip to the grocery store a form of Russian Roulette with catching something to make them sick.  The biologics can cause lymphoma, leukocytopenia, and other types of blood diseases.  The costs of these medications are quite high.  Sometimes the right medication ‘cocktail’ can make the disease manageable and improve daily function, but the unpredictability in the attacks or ‘flares’ of the disease can compromise that cocktail at any time.

I am currently doing very well with a combination of methotrexate, a self-injected biologic, and steroids as an emergency if I have a flare.  I’m very grateful to be in my current state of health, with the constant knowledge that it could be much worse.  I get tired very easily, but it is important to have a good support system, trying to stay positive, taking time to rest, and eating as healthy as possible.  For me, it’s a determination not to let the diagnosis rule my life—I am taking control.

Please know that I’m not a doctor or an expert and the above was only written from my personal experiences.  You can get more information at http://www.mayoclinic.org/search/search-results?q=rheumatoid%20arthritis

If you are looking for a worthy organization to send donations, please consider the American Academy of Rheumatology at http://www.rheumatology.org/

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29 comments

  1. This may be the most concise and easily understood explanation of RA I’ve read. I was diagnosed with RA about 10 years ago too. Fortunately my disease is progressing slowly. I’m taking NSAIDs and Plaquenil. No biologics quite yet. Good luck with your treatment.

    Liked by 2 people

    1. Thank you, Tara. It’s so hard to make a blanket statement about RA because it is so different for everybody. Just hope it helps my family and friends understand what it’s all about. Wishing you the best for your treatment, too. Please take care. Wishing you many, many good days!

      Liked by 2 people

  2. This was very well written; thanks! I was particularly happy when you pointed out that RA isn’t really the creaky joint arthritis, that it’s an autoimmune disease. I usually saying I’m doing pretty well if all I am is ‘creaky’!

    Liked by 2 people

  3. Great article with information that everyone should know. I was diagnosed almost 5 years ago and I am doing well and I am now on 3rd biologic. My doctor is aggressive with treatment and it seems to be working. Right now though I’m in a bad flare but I’m making it. Like you said, I to am Blessed that my disease isn’t as bad as it could be. Wishing you well.

    Liked by 1 person

  4. I also suffer from an autoimmune disease (Crohn’s) luckily the tablets I’m on keep everything in check, though when/if they stop working biologics is the next step. I know from my own research how scary the side effects from such things can be.

    I’m glad that you’ve found something that’s helping! I know how draining the constant tiredness and fatigue can be, even though it sounds like something that isn’t too bad. It can be really difficult to explain how crushing it can actually be. I have to say I knew/know very little about Rheumatoid Arthritis, but your post was really clear in explaining it. Hopefully they’ll find better ways of managing it!

    Liked by 1 person

    1. Crohn’s is no picnic, either. I’m glad that the tablets are working. You do understand the hard-to-describe intense fatigue. I’m glad that my article explained RA clearly. Some people close to me don’t understand what it’s all about, so it was basically to educate and make people aware. We’ve all just got to hang in there–mainly because we don’t have a choice. Take care and keep writing. I enjoy your stories a lot!

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  5. Oh dear, never knew it had nothing to do with arthritis as such i.e joint pains etc it is a pity no conclusive cure has been found. Would gardening and such be bad for you as well since you would be in contact with dirt and bacteria in it?

    Liked by 1 person

    1. It can affect the joints, but it’s because the body attacks and breaks down the tissue that support the joints. I’m really not sure why they put the “arthritis” in it, and it’s gradually changing names to rheumatoid disease. The injections make a person more susceptible to lung infections, so there are certain parts of the country that are high risk (the Ohio valley, for instance). Gardening should be fine as long as protective gear is worn. Thank you for following me. I’m looking forward to reading more of your blog in the future, too. Take care! Dawn

      Liked by 1 person

  6. I’m all for changing the name. My mother had RA, and I believe the disease would have received better attention from her GP early on had it been called something other than “arthritis.” That’s the kind of thing that’s too easily dismissed as something that “just happens” when we get old.

    Liked by 2 people

  7. Wow! you have really done such a fantastic job explaining RA. I’d always thought my dermatomyositis was very similar. I have all the problems with lung infections magnified by fibrosis in my lungs. I joined up with the Lung Foundation here and they’ve sent me some interesting info over time. One of the things I read was that walking with a pedometer reduces your risk of lung infections. I would infer from that that walking a certain distance is required and using the pedometer motivates you to go further. I have also taken Olive Leaf Extract to fight chest infections as it’s very high in anti-oxidants. When infections hit, however, I’m on a double dose of high antibiotics and thinking about hospital. We have avoided hospital to date as we thought I could catch something worse in there but apparently as my lungs are compromised, it’s better to err on the side of caution. I have a good friend with Muscular Dystrophy and her mum told me you can live if you can’t walk but you can’t live without your lungs. Wise words. My prednisone is now down to 7.5mg and I’m more tired and not sure if I’m on the edge of a flare. I know the fatigue you talk about well.
    I thought you might be interested in this development in RA treatment. I have been following it for several years and hope that a biomedical treatment might do away with all these harmful drugs: http://www.independent.co.uk/life-style/health-and-families/health-news/hope-for-arthritis-sufferers-after-trial-electrical-implants-leave-some-patients-pain-free-9941001.html
    xx Rowena

    Liked by 1 person

    1. Thank you so much for this information. I’m so sorry you have so many health issues related to your dermatomyositis. It always seems to be a game and cat-and-mouse living around flares. I’ve found that I have to keep positive and know that things could be so much worse. Keep keeping on and hang in there. Take care and wishing you good health.

      Liked by 1 person

      1. Yes, I am very lucky and know things could be a hell of a lot worse, especially as I’ve been through it (though haven’t obviously been through the ultimate worst or I wouldn’t be here anymore.) This year my doctors have pushed hard to get the prednisone down and it felt like I was jumping off a cliff dropping only from 10 to 9. I am down to 7.5 and this is the lowest I’ve been since diagnosis. My doctors are hoping to get me down to 5 now that I’m taking mycophenolate. I’m taking it slow though as my kids have both recently started new schools and need me to be on an even keel. Or, at least not in disaster mode. It;s been great to touch base xx Rowena

        Liked by 1 person

  8. Thank you for providing this short and sweet, yet thorough explanation. I had no idea what RA really was until reading this. This will help me better relate to my aunt who was diagnosed with the same.

    Liked by 1 person

    1. I just moseyed over to your place and took a gander! Nice to see someone with similar interests and the problems that complicate them. I’m on Orencia, methotrexate, and my best friend prednisone at the moment. I say “at the moment” because it is subject to change every 3 months or so. 🙂 But, I’m hanging in there. Pleasure to meet you and can’t wait to read more. Dawn

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