Wow. An entire month of not writing. I have been a busy bee. A busy bee with legs and feet so swollen, they couldn’t wear shoes!

So after that last post, I dropped my prednisone again and three days later I noticed my ankles were swelling. I called my rheumatologist again and left a message. I increased my prednisone back to 7.5mg, but still no improvement over the weekend. I decided on Monday I would call again, and if I didn’t get through to my doc, I would leave the message that I was going to emergency the next day. My feet were so swollen that I couldn’t point my toes, I was starting to get pins and needles feeling, which meant nerves were pinching, and shoes did not fit. Not to mention the constant pain that the swelling and inflammation bumps created. Lucky for me, her assistant answered and I got in to see her on the Wednesday.

When I saw her and lifted my dress to show her my legs, her response was, “Can I take a picture of your legs?! I promise not to post it on the internet.” She then went on to agree with my previous diagnosis of erythema nodosum. Then she asked if she could call her resident in, show him my legs, and test him. I agreed, so she did. He came in, took a peak, asked me a few questions and then said the same thing, “Erythema nodosum.” We chatted a bit more and then he said, “This is awesome!” To which I replied, “Yah….no….this is NOT awesome. But I am glad I could bring you some career excitement today.”

Now, to make things even MORE interesting, there is a lung disease that also includes this skin condition – sarcoidosis. Interesting that my friend Trisha came across this in her research and my doc mentioned it right away. She did say that my biopsy would have shown if this is what I have, but to make sure it wasn’t something that developed afterwards, she sent me for a chest x-ray and bloodwork to double check. Nope – not that.

Anyhoo, the plan was to try gout medicine for a few days, as it is a normal treatment for this, keeping my prednisone at 7.5mg because we have been trying so hard to reduce and get me off of it. But if I didn’t see any improvement within a few days, then I was to increase my dose to 20mg. She explained that if I had just come in only with this condition and not been on prednisone already, she would have prescribed 40mg, but again, we are trying so hard to get me off this darn drug. So she admitted she didn’t know if 20mg would even be enough to make an impact. So, away I went with a gout prescription and hope. {She did tell me the pharmacist would try to tell me I had gout, but I was to correct them. This happened, a few times. To the point I just accepted with the pharmacist that I had gout.}

Three days passed with no improvement. I told myself if I woke on Saturday morning and I still had swelling, I would increase to 20mg. Which I did. I had a little cry and then did. Gah! SO FRUSTRATING. February. I was told February. I know that things change, but having that mental goal of February and now we are in May is really sh*tty. But, you know what? By Sunday morning my swelling had gone down significantly. That fast. Prednisone. The miracle drug that cures one thing and makes you horrible in 10 other ways. Anyhoo. Feet are fitting into shoes again. Success.

This was all happening right before our HUGE CCB show on May 14th. It brought back so many memories of my initial days of illness before our show in August that I ended up missing, you know, being in the hospital and all. So besides the physical pain I was constantly in, I was worrying (trying not to worry) that I wouldn’t be able to dance again. If I didn’t have the show, I probably would have given the gout medicine (I don’t have gout) a few more days. But time was against me.

So, the swelling was almost all gone and the bumps remained. But I could handle the bumps and soreness from them. As long as I could dance. Which I did.

The good thing about increasing my dose this time, was instead of staying on the higher dose for 4 weeks at a time, I only needed to try one week! So as I write this, I am already back down to 10mg a day. I will admit I am worried and hypersensitive to my legs again, as this was the dose last time the erythema nodosum started. There is still almost no swelling, but a few new bumps have appeared. My legs now show more of a fading purple mark where they bumps were, instead of being bright red and swollen. I am hopeful that no additional ones will start and in a few more weeks the discolouration will be gone.

I went to see my doc for a follow-up today, but she was running behind, so we had to reschedule for tomorrow as I couldn’t miss Arrnie’s hip-hop performance at school. I don’t expect her to say much, just that it’s good that we are seeing improvement and that we will continue tapering and monitoring.

If you Google erythema nodosum, that was pretty much me. But for your viewing pleasure, I will include pics of my very own legs! (This pic doesn’t due them justice…)

Leg Pic

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