Lupus Hiatus

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Lupus Hiatus

So, I took a bit of a break from posting (and well a lot of other activities), because I was having health issues related to lupus.  I have had issues and flares on and off for years, since I was diagnosed and actually before my diagnosis.  It was to the point that I had to go on another medication to try and manage the lupus better.  Prior to the recent flares I had been on two medications consistently, prednisone and plaquenil (or the now famous hydroxychloroquine).  My doctor suggested a few different medications one being Imuran (Azathioprine).  I hated this medication because it made me so nauseous to the point that I was missing work and had to have my husband come and collect me a few times from my job.  I dealt with it for a few months.  When it was time to increase the dosage I couldn't handle it.  It was making me sicker that the lupus.


The next medication we tried was benlysta (belimumab), which I take as a weekly shot.  It has improved most of my issues, especially the most troublesome ones, such as pleuritic chest pain.  It is definitely not fun giving yourself a shot, but I find it manageable.  When I initially took the medication I did feel nauseous, but it was not nearly as bad as the other medication made me feel.  There was also a huge difference in my pain and energy levels.  I could lay down comfortably without having any chest pains and I didn't feel lethargic, like passing out after a long day of work.  This was a HUGE improvement.  It felt like this was going to be the drug that put my lupus monster back in the closet.  I would soon find out that I had a little bit longer to go to get out of this flare cycle.


I was doing fairly well and I would say on the mend until my energy level really plummeted.  I felt crazy and loopy all the time.  It was difficult to think straight or function as a working mom of two little ones.  Anyone who has lupus or other chronic illness that affects energy knows the extreme exhaustion that takes hold.  Its not like the tired that most people feel daily at the end of a busy day.  This is tired to the bones.  It is exhaustion in your soul and impossible to shake without some dietary or medical intervention.  I also was experiencing horrible break outs all over my face.  I stayed home for over a week because of the huge painful bumps on my face.  They would not heal and each day more would pop up.  I was miserable and depressed for a long time.  Nothing I did worked.  I had to go to a dermatologist who gave me some topical antibiotic that eased the problem slightly.  Lastly, my hair was thinning at an alarming rate.  I've always had thin hair (it runs in the family), but this was extreme and worrisome.  I needed to find some answers and solutions fast!

So it was back to my rheumatologist's office.  I explained all my issues and after some blood work we discovered that I was extremely anemic.  After two iron infusions and taking prescribed iron pills for months I was finally on the mend.  Now I feel great and getting back to being happy, healthy and energetic.  I don't know how much of my issues with skin had to do with the iron deficiency, but I know my thinning hair and exhaustion are clear symptoms of anemia.  I wish I had picked up on the signs sooner, but I assumed my exhaustion and acne was from a lupus flare or my new medication.  It just goes to show you how important it is to go to the doctor and get blood work done on a regular basis if you are someone who suffers from an autoimmune disease.  You need to always be intune to your body and listen when it tells you something is wrong.

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