One Patient's Positive Perspectives

Slight glimmer of improvement?

Today is October 4th, and exactly five weeks and five days after my first Benlysta infusion for my lupus.  Even though I have had some thoroughly exhausting activity over the past week, it seems many of the recent mornings are still showing a slight glimmer of improvement.  It may be too soon to tell, and this morning is clearly a great flaring exception, but I have been encouraged a little by awakening with what seems like slightly lighter symptoms followed by a little bit quicker and more complete morning recovery from lupus fog, CNS difficulties, joint stiffness and pain.

However, this morning dawned with an exceptionally acute flare, most likely triggered by last night’s lack of sleep from neuropathy pain.  Deep bone pain is in my fingers and wrists, feet and knees and the long bones of all four extremities.  However, while taking this morning off from work to help fight and turn around the effects of this flare, I am choosing to remember yesterday.

Morning fog clears

Yesterday was one of my most productive work days in weeks.  Morning fog was lighter and lifted a little more completely than normal.  It seemed as the day progressed everything inside me was clicking along like “clock work” and I got great things accomplished on my job.  I am choosing to focus on the recent slightly better mornings, and consider this morning as a mere stubbed toe in the ongoing battle against my lupus!

My prayers are that Benlysta will keep doing its thing and that it will soon make a big difference.

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Comments on: "Lupus and Benlysta after five weeks and five days" (2)

  1. lupusadventurer said:

    Yes, long bone pain! The more severe the flare the more likely this will go beyond just joint pain. Usually this pain is always present in equal amounts on both sides of the body, and similar levels of pain in hands/arms and feet/legs. For me it progresses from joints, to farthest end of my limbs and spreads upward with greater degrees of lupus flare.

    Deeper wider spread bone/limb aching and pain is usually a sign I have a deeper more severe and longer-lasting systemic flare of my lupus.

    This type of deep bone pain can also be a sign of cortisone’s effect on the blood supply to the bone marrow, and should be mentioned to you doctor when it persists. Avascular necrosis, and bone marrow vascular infarcts, as well as other conditions, can also cause this type of pain.

    Keep talking it to your doctor. He needs to hear about it.

  2. Long bone pain? Is that common with lupus? I feel so uneducated about this. I have never seen that mentioned but I have awful pain in my calves and upper arms. I thought it was more bone pain then muscle and the doctor kind of acted like I was nuts. Hope today goes better!

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