Rheumatoid Disease and Arthritis Awareness Day – My Experience

February 2 is Rheumatoid Disease (Arthritis) Awareness Day. For those who do not know, I have lived with this disease for the last 12 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.

imageThere 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/

This is a reblog/update from a previous post.

 

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6 comments

  1. There are a lot of misconceptions about RA, thank you for writing a great explanation. I’m very glad your “cocktail” is working for you. Sending wine happy manatees for continued management! Hugs.

  2. Thank you for this it’s important for people to know all they can about RA and autoimmune disease in general. All of the AI diseases have so much in common. I have sarcoidosis, multisystem involvement, rare, incurable, no real treatment just management of symptoms but you’ve described my on going battle so well, thank you again. It helps just to know we’re not the only ones. 😉

  3. Some of the hush-hush typing I am doing now is with Rheumatology and I find it very interesting. The doctor is doing ultrasounds on hands and he goes through each thing with the patient, explaining what they are looking at/for. Glad the combo of meds is working for you.

  4. I really appreciate this post as I have a sister-in-law who deals with this disease. And I never understood what she is dealing with until I read your post. I agree that the name should be changed.

    I’m sorry you have this disease, but am thankful for your current “doing well” status and your ability to remain positive.

What are YOUR thoughts?