Burnt Out!

The other week I went to my new Rheumatologist. After three tries at the Cleveland Clinic, I have finally found a Rheum whom I love!

He questioned my Lyme Disease diagnosis,` and I have an appointment with an Infectious Disease specialist in a couple of weeks, hopefully to finally know whether I actually have Lyme.

It appears that my joint hypermobililty has gotten worse, especially in my wrists. I have been having to immobilize them by bandaging them, and needing to take pain medication. We took X-rays of my hands and wrists.

One of the greatest things about this doctor was that he didn’t hurt me at all! All of my other Rheums, well the ones who actually cared to examine me, would mash up my joints and cause great pain.

But the best thing about the appointment was that because I was not showing symptoms of Lupus, the doctor thought that the Lupus has “burnt itself out”, which means improvement or remission of disease, and no more symptoms of Lupus in my body! According to the London Lupus Centre, “With the evolution of knowledge that has come about concerning lupus, it is clear that for most patients, a normal and active life is entirely possible. Even in those patients going through a long and seemingly endless flare of disease; improvement or ‘remission’ of disease is likely. The disease does burn itself out.”

The blood work may or may not support the doctor’s theory, but I can’t help feeling like it is true!

Of all of the Lupies I know, I am the first one to hear this “burnt out” term. My friends with Lupus, there is hope for us all! New medicines such as Benlysta and earlier detection is making this possible!

I ask all of you whom are fighting this horrendous disease to please have hope. Perhaps our dreams of a total cure are not as far away as we think!

Have any of you been told that your Lupus has burnt itself out?


Photo credit: Reema Chadha.

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About mamasick

Emily Cullen is a pen-name. I suffer from chronic illnesses and diseases which include Bipolar Disorder, Asthma, Diabetes and Fibromyalgia. I had battled Lupus and Rheumatoid Arthritis but there is no longer evidence of me having these diseases and my Rheumatologist has declared them to be "burnt out" of my system. I am separated from my husband, “Grant”. Our son, “Tyler” was born in September of 2006 and suffers from tics and Obsessive Compulsive Disorder, and is delayed in fine and gross motor skills. In my blog I seek to let sick moms know that they are not the only ones going through this, and to educate people about what can happens when one becomes catastrophically ill. I also strive to break down stereotypes of what a “Welfare Mom” is like. Anything that I have gone through due to being sick, is written on the pages of Mama Sick.
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12 Responses to Burnt Out!

  1. I really like your term, “burnt out”. My doctor is considering keeping me off of IV meds because scleroderma has seemed to run it’s course in my lungs and GI system. Externally, my feet are doing weird things, similar to scleroderma, but no hardening and may lead to a better treatment to help for my feet. Cheers to you! May your Burnt Out continue! And your path to more active life be easier than you thought it would. *raises coffee cup*

  2. mamasick says:

    Karen, what originally happened was that my IV med that I had been on for Lupus had started making me sick so I went off of it. It was hard to get on the next med due to insurance issues, and while waiting I noticed that I didn’t have any symptoms. Hope you are indeed experiencing the same thing!

  3. Maxine Holmes says:

    Yes, at the young age of 67, my pheumatologist called me the other day (10/6/2016), that I’m at the Burnt-out stage of Lupus. Although, I need to go on treatment for protein in the urine/high blood pressure for a short time, which they believe it’s contributed to the Burnt-out Lupus. I have both SLE and Discord Lupus, which I have 16 different symptoms related to SLE. “THERE IS LIGHT AT THE END OF THE TUNNEL”.

    • mamasick says:

      You are the only person I know who has also been told that she was at the burn-out stage of Lupus, Maxine. I guess we are the rare lucky ones!

      • Maxine Holmes says:

        Since our last communication, I had to have a kidney biopsy because of the protein in my urine and I found that the lupus went into my kidneys, although it was at the burn-out stage. Luckily they start me on a cocktail of 200mg plaquenill + 5mg prednisone a couple of weeks before the biopsy and it looks like the lupus will burn-out again with no damage to my kidneys. I guess the lupus wanted one last date (smile).
        So, I guess we are the rare lucky ones!

        You have to stay positive.

        • mamasick says:

          Sorry that the Lupus reared it’s ugly head but glad the medicine worked! Thanks for keeping me posted!

          • Maxine Holmes says:

            After my post on November 17th, I had lab work done to make sure I have not been expose to TB in order to add Cellcept. As stated, I was taking 200mg Plaquenill and 5mg Prednisone with no side effects and feeling really good. My Rheumatologist added 500mg Cellcept which is an immunosuppressant (since lupus is our own autoimmune system attacking our organs), which will enhance the effectiveness of the Plaquenill, so far, no side effects still feeling good.

            Will post again in February after my lab work; to share my progress with treatment.

            Thank you for your support,

  4. Anna says:

    I was told by my rheumatoid doctor today my lupus she thinks has burnt out I’ve had it 12 years , didn’t know it could burn out but all good just waiting on blood results

    • mamasick says:

      There is still not much on the internet about Lupus burnout, Anna. I am thankful that we are one of the lucky few and hope this can happen to all Lupies one day.

  5. Brenda Long says:

    I have been informed today that my lupus has burnt itself out – thank goodness.

    • mamasick says:

      I’m still not hearing a lot about this phenomenon, Brenda, but I am glad you are among the few of us in this hopeful category.

  6. Victoria says:

    I totally believe that and always did. It is when you stoo all medication and just take it 15 min at a time that you realize you re still not dead and are actually getting better. Very slowly but surely. I think it is just obvious that these kind of diseases that only happen between 20 to 40 years old must have a hormonal reason which gets better as you age and still cant believe why the meds and doctors are playing fools about it and screwing so many lives.

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