A Little Vitamin D on My RAnniversary

Time for celebration. It’s my 13th RAnniversary!! My disease is a teenager now. However, it’s likely older than that. Like a stray cat, we’re not exactly sure how old my RA was when it officially joined our family and we gave it a name.

Years before diagnosis, there were signs of what was to come. I remember when my hands just "didn’t feel right.” They appeared a bit puffy and were stiff and sluggish. As a pianist, this was troublesome.

Before I ever reported the symptoms to my doctor, I tried over the counter approaches. First, it was Aspercreme to try to take care of the achiness. It didn’t really help. Then I tried Aleve because I was told it would work better than Tylenol or Advil. I didn’t really notice much improvement.

A delayed RA diagnosis

When I finally mentioned the problem with my hands to my primary care doctor in 2004, he ran some common blood tests. The results weren’t very remarkable.

Results from the bloodwork

The ANA (antinuclear antibody) test was negative. The RF (rheumatoid factor) test result was a low 5.3 while anything below 14 was basically interpreted as negative (or normal). My SED rate (erythrocyte sedimentation rate) was only 31 (normal range 0-20). While not very high, this SED rate result was the highest it’s ever been since I began treatment for autoimmune diseases.

Basically, I didn’t get a diagnosis of rheumatoid arthritis at that time because my blood work didn’t scream “RA!!!!!“

Low vitamin D levels

Fast forward to 4.5 years later and 2.5 years after my RA diagnosis, I was experiencing pain and achiness in my arms and joints. My primary care doctor at the time ordered more blood tests. This time it was discovered that my total vitamin D 25-OH level was an abysmal 7.8 ng/mL. That’s really low. I began supplementation with a doctor-recommended dose of vitamin D3 and after a few weeks began to feel noticeably better.

Nowadays, it is my neurologist who is most interested in my vitamin D levels with my rheumatologist running a close second in showing her concern.

Vitamin D deficiency and autoimmune diseases

Studies have implicated vitamin D deficiency as one of many contributing factors in the development of autoimmune diseases such as RA or MS. Vitamin D deficiency has also been found to be associated with disease activity in people with RA.

Taking vitamin D supplements

It took years of high doses of vitamin D supplementation to get my blood serum levels to stay within an acceptable range — acceptable by my specialists, not acceptable as compared to standard “normal” or reference ranges. Only once have my test results come back with too high of a detectible amount of D in my blood such that we made a significant change in my daily vitamin D intake. But the next time we tested (which happens every six months), my levels had dropped too far again.

Routine vitamin D testing

My doctors test my vitamin D levels every six months and we make adjustments as necessary based on laboratory results. Other routine tests include CBC (complete blood count), CMP (comprehensive metabolic panel), SED rate, and an annual tuberculosis test because I’m on Rituxan. A few years ago, my rheumatologist ordered the VECTRA test that measures RA inflammation. It was interesting to see indicators of inflammation that showed up in my VECTRA score that didn’t show up in the other routine tests.

How frequently does your rheumatologist order laboratory tests? What kind of tests are ordered? Is a vitamin D check often included?

Noticing when my vitamin D levels drops

I can share that I do start to notice when my vitamin D levels begin to drop. My muscles hurt a bit more and my bones begin to ache. I haven’t noticed any correlation with RA disease activity, though, but that’s a good thing. I like to think that my ongoing RA therapies are doing their job and keeping RA at bay.

What is your experience?

I invite you to share your experience. Do you have a favorite way to get your daily dose of vitamin D? Hint: Common ways to get vitamin D include exposure to sunshine, food, and supplements. I look forward to your responses.

Today, I'm taking a walk around the neighborhood to combine a bit of exercise with catching some vitamin-inducing rays on this clear blue sky day.

Stay well!

Lisa

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