One Patient's Positive Perspectives

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Hair brushed forward over forehead shows right side hairline regrowth 4 months after correcting cortisol deficiency

It’s back! One purely cosmetic result of a gradual failed six-month long steroid withdrawal was the steady retreat of my hairline. During several months of prednisone withdrawal, hair thinned and dropped out the first half-inch of my hairline in the center of my forehead, and about an inch on both sides.

It is hard to say what was causing my hair loss.  Perhaps just lupus, maybe cortisol deficiency or perhaps a lupus flare caused by cortisol deficiency.

Isn’t this lupus adventure fun?

Hair brushed forward over forehead shows left side hairline regrowth 4 months after correcting cortisol deficiency

Hair brushed forward over forehead shows left side hairline regrowth 4 months after correcting cortisol deficiency

Over those six-months, my daily prednisone dose decreased from 5 to 2.5 daily. I quit the expensive out-of-network rheumatologist I had seen for 20 years, and started with a new in-network doctor last January.  When I saw her the first time, it was a full month after I went back on  higher steroids.

I immediately called my new doctor to set a first appointment, because the need for accountability to her had to be established as quickly as possible.  Within hours and days of resuming higher prednisone dose, I was drastically improving.

While general health and lupus symptoms leveled off quickly under the resumed prednisone dose, by the time I saw my new rheumatologist, I had reduced my daily prednisone to 7 mg, the normal level a body usually makes as natural cortisol.

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Staying under a physician’s care

Not knowing if my decision to resume this higher prednisone level would be supported by my new doctor, it was extremely important to me to quickly place my lupus treatment back under the care of another physician.  While changing doctors and temporarily overriding my previous rheumatologist’s advice was a hard and prayerfully wrought decision, it was not what I really wanted to have to do.  I hold a very strong opinion that we must be medically responsible and accountable, and self-treating is dangerous territory.

In the month between my old and new rheumatologists, I saw my family doctor for accountability and filled him in, and spoke personally with the gastroenterologist who has treated my digestive system and lupus liver involvement.  Before seeing the new rheumatologist, I also checked in with my other doctors who are part of my treatment team.  Each doctor, lab, radiologist and hospital  forwarded my recent records to the new doctor to give her my full medical history before seeing me.

LA Updated Headshot

A little more hair, a little less forehead!

Over these past 4 months, since early January through April, my health has stabilized, my energy has returned and my missing hair framing my face is growing back.  My hairdresser and I marveled last week at my hair regrowth.  About 2 to 3 inches of new “baby fine” hair has re-emerged at the hairline all around my face, bringing it forward again about 1/2 inch in the center of my forehead and about 1 inch on the right and left side.  The slightly rounded “widows peak” in the center has disappeared, and my hairline is now filled out again.

Although talking about steroids and a little hair regrowth is anything but earthshaking or life-altering, it is one small aspect of the impacts of lupus and medications used to treat it.

Would I like to be completely off the prednisone?

A bit more hair and smile...

A bit more hair and smile…

Sure, but removing it entirely just isn’t possible without more careful monitoring and involvement of my new doctor. If and when my new doctor wants to try reducing my prednisone, I will be glad to cooperate.  Being with a doctor who is on my health insurance plan will make follow-up and monitoring more available and accessible during any future attempts of prednisone withdrawal.

Meanwhile, looking in the mirror at the blessing of at a bit more hair and a bit less forehead, makes me smile just a bit more, too.

 

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Comments on: "Lupus and steriod effects: Hair loss, regrowth and accountability changing doses" (10)

  1. Beautiful! Managing doctor relationships is so hard…your reminder about doing is anyway and staying accountable was something I needed to hear.

    Can you talk more about a cortisol deficiency in a future post? I have never heard of it before.

    Thank you!

  2. It is amazing what a little hair regrowth can do for a gal!
    I think I always see it as more than just vanity, it is always a sign to me that I am healthier… which is more reassuring and calming than feeling better about how I look any day!

  3. Great post! Thank you for always being open and honest about both your experiences and your feelings. I was diagnosed with Lupus 15 years ago. It is refreshing to cross paths with someone who is comfortable discussing the challenging reality of this journey. Be blessed.

    • SK, its great to see you jump into the discussion! Accurately viewing our difficulties is always one of the great challenges of this battle we have with our foe, lupus. Thanks! LA

  4. What a great post! Many people do not understand the cost of vanity when living with lupus. Although light hearted, it is deeply felt!

    • LL, thank you! I also find the positive in the loss of vanity is the blessing of gaining a drop more humility. If lupus is the cause of this small bit of character gain, so be it! LA

  5. Thank you for your informative and upbeat post! So happy for you. Losing hair is so very difficult on our self esteem, and seeing it improve is a real boost!

  6. Michaeline Kelley-Boyet said:

    Bravo, on your new hair growth! Lovely picture of you. I was diagnosed with Lupus in 2007; I share your frustrations over this awful disease. I just found your site. I am looking forward to your postings.

    Regards and God Bless. Be well.

    Michaeline

    • MKB, Thank you so much for visiting Lupus Adventures and introducing yourself today! It is so good to connect with other lupus patients and know that we share common challenges and adventures. It was a pleasure to hear from you! LA

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