One Patient's Positive Perspectives

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Develop a good doctor-patient rapport

Developing a good relationship with our doctors is critical to effective management of lupus.  The second appointment with my new rheumatologist went very well, focused on reviewing the battery of lab tests done a few weeks earlier, and communicating a quick update of current symptoms.  My health has continued to stabilize and improve since a failed steroid withdrawal crisis three months ago.

lupus biomarkers

quiet lupus biomarkers

We discussed the surprising news that all my lupus biomarkers had become very quiet.  Because of my very long history of lupus activity, this means my lupus is now under good control.  However, we talked about the present but improved recent recurring mouth and nasal ulcers, arthritis, fatigue and mild cognitive challenges I have had since my last visit.  She also explained her interesting supposition — in the absence of my medical history — if I had been a new patient coming to see her with such good blood tests and quiet lupus biomarkers, she would never have suspected I had lupus!

This quieter lupus is a blessing, attributable in part to important medications: an appropriate daily dose of prednisone, continuation of long-term daily plaquenil (for over fifteen years) and two and a half  years of monthly Benlysta infusions.  My lupus is now under better control than can I remember in a long time. It is hard for me to know how much the decision to stop prednisone withdrawal factored into this, but removing the confusion of steroid insufficiency symptoms from the mix had to have helped.   Now that I am getting adequate prednisone, everything else seems so much better, too.

Quieter lupus...

Quieter lupus…

We still don’t know if I will eventually be able to get off prednisone completely.  Although we discussed the possibility of dropping from 7 mg of prednisone to 6 mg, for now we agreed to wait a little longer to try that.  Frankly, I am a little “gun-shy” to give it a try yet and am being very honest with my doctor about this.  However, I am determined to be a compliant patient, and will coöperate with my doctor if she decided I should try prednisone withdrawal again.  But, I’ll just need to have assurance beforehand that my doctor is accessible and will check any problems as they arise.

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Hiding from the sun…

My doctor explained that she doesn’t usually recommend lupus patients attempt getting off of steroids in the winter, when they tend to have more flares following increased summer sun exposure.  She asked if I get rashes after being out in the sun, and my answer was, “no, because I no longer go out in the sun for more than a minute or two,” adding, “if I would, then I would!

This exchange made me think about how many of us have made radical changes to our lives to accommodate our lupus, in our attempts to keep the upper hand.  There was a point in my life when I would have been horrified by the idea of an illness that prevented enjoying the great outdoors on a sunny day.  Now, I never spend any time in the sun, not at all.  So, now I guess I just take this loss in my stride, while even perhaps being a little thankful that at least I know I must avoid the sun to stay well.

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Triple stress: a perfect storm

My doctor asked a question about recent major stresses in personal or professional life, and we discussed a trio of extremely stressful work situations in my government law office management responsibilities.  While I cannot talk about the confidential issues themselves, I could explain the type of uniquely and intensely stressful situations I’ve handled over the past couple of months.  Describing how these overlapped in their impacts on me mentally, physically and even spiritually, they have truly been what she aptly described as “the perfect storm.”

It has amazed me that I’ve been able to manage these three intensely stressful professional situations, while also working long hours while compelled to search for uncommon wisdom and insight to resolve them. Although there have been a few moments when I thought I would, at no time did I buckle under the weight of these challenging responsibilities.

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He gives more grace
when burdens grow greater

For this, I am grateful, and thank God for hearing my prayers and allowing me to graciously borrow a drop or two of His wisdom in the midst of the churning cauldron of stress.

A couple of take away thoughts at this point in my lupus adventure?   My biomarkers may be quiet, but the ongoing presence of mouth ulcers, arthritis, neuropathy, fatigue and CNS issues still continue to tell me my lupus is there.  It may be quietly lurking in the background for now, but it is still there.  My challenge now is to keep lupus suppressed and less prominent and less disruptive than it was in the not-too-distant past.  This is truly a part of the great and often unpredictable path of our lupus adventure.

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Comments on: "Getting good news of seemingly quiescent lupus" (8)

  1. Lovely hear a more positive post from you and hurray for the Lupus being ‘quiet’- I am in a similar situation in that my rheumy seems to have hit on the right balance of meds. I have succeeded in saying goodbye to the steroids for the time being ( a very very slow process) and at my last appointment we discussed reducing the hydroxychloroquine- the specialist nurse laughed at the consultant over this and said that as things were nicely stable why on earth would I want to try that?! Well I did try it and three weeks later was in a dreadful state so returned to the effective dose and another month later I am getting back to being ‘stable’. It is a fine balance isn’t it?! How do you rationalise the news that your bloods are all ‘normal’ when the presence of other symptoms tell you that the Lupus is ‘alive and well’ and still living in your body? It is a conundrum I fail to get my head round! And you are right about the adjustments one has to make to manage your life. Striving to be ‘symptom free’ is a daily challenge! Here in the UK Benlysta is not freely available (cost is prohibitive) and reserved only for those in danger of imminent death it would seem… so it is interesting to hear your experience of that and the comments from your other readers.
    Be well x

    • ONS, Thank you so much for chiming in on the discussion from “across the pond.” Here in the U.S., we often forget how the rest of the world is so different in areas like healthcare and other types of public systems. I have been following the European conversations about Benlysta with interest, and have seen that the costs have been a major obstacle. Since Benlysta is not a fast-acting “wonder drug” it seems destined to have little demonstrated benefit in near end of life situations.

      From what I am hearing, my experience is similar to others: it is slow on the up-take and takes months before a real difference is really noticed, and its long-term overall moderation of lupus severity is where it makes the most difference. In comparison, I can look back at 30 months of treatment and say, “wow, I feel a great amount better than I did before starting it.” Once lupus gets under better control, the secondary return of general health, strength and a sense of well-being gradually can return. Each time I have achieved a lasting measure of remission, over time I also saw my general health slowly returning, too.

      It was nice to hear from you! LA

  2. You’re attitude and smile are infectious! Blessings to you!

  3. Michaeline said:

    Thank you for sharing your Lupus story so eloquently. I was diagnosed in 2005. I have also been on Benlysts for over two years. It has been a lifesaver for me. I wish you continued good health and freedom from Flares!

    Regards,

    Michaeline

    • M, Thank you so much for taking the time to share your comment and introducing yourself today. It is great to hear that Benlysta has been such a help to you. Nice to hear from you! LA

  4. I am happy your lupus is being quiet… 🙂 hope it continues to do so… I’m also praying that mine will too. hehe…. although i am back to 50mg of pred, i had quite an incident last Feb.

    • FT, Thank you so much for sharing a little piece of your story. Most of us with lupus have a history, many have a present and probably all of us have a future that will continue to include prednisone. 50 mg is pretty heavy-duty stuff, and I hope you get yours calmed down, too. Have a great day! LA

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