CC's RP Story

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In 2010 I was diagnosed with Tumid Lupus (skin lupus) and was being treated with Plaquenil. In late June 2016 I went to the Dermatologist and we discussed decreasing my Plaquenil dosage.  In early July 2016 I decreased my Plaquenil dosage from 200mg twice daily to 200mg daily.  I was doing fine on that dosage meaning that my tumid lupus was still under control. Looking back, I began having what I know now to be the beginning manifestations of RP.  In mid-August 2016, I had what I thought was pink eye, eventually affecting both eyes.  I was prescribed antibiotic eye drops, but I really think it resolved on its own.  I had a unilateral inflamed tragus (the part of the ear where the cartilage is just at the front of the ear).  I applied warm compresses and it too resolved after several days of babying it.  I had a runny nose for 2 days – just constant clear thin drainage – it never developed into the crud, but left me with a naggy cough and a couple of other symptoms like making me have to take a breath/cough before I could finish a sentence and a need to cough upon deep exhalation. I had never had those symptoms before when recovering from a respiratory ailment and they persisted for weeks. 

 

The first week of August 2016 I went to my Internist for a 3 month follow-up visit.  I had had varying degrees of proteinuria for a little over a year.  She had tried to treat it adding another med for hypertension and 3 months later increased the dosage.  Both times my proteinuria improved, but was persistent.  I was then referred to a Nephrologist.  She ordered a kidney biopsy that indicated that I had C3 Glomerulonephritis and recommended further labs to determine etiology.  After obtaining those results, I was then referred to a Hematologist/Oncologist (heme onc) for what was described as “a pre-malignant myeloma type thing.”  More labs, x-rays, a PET Scan confirm that I have Monoclonal Gammopathy of Renal Significance or some refer to it as “Smouldering Myeloma.”   Eventhough my PET scan was clear, it was treated as if I have myeloma because I have renal involvement.

 

In preparing for immunosuppression, I was referred to an Infectious Disease (ID) doctor because I had a positive TB skin test back in 1990 and was never treated.  A T Spot TB test confirmed that I had latent TB and treatment was initiated. 

 

While waiting for the appointment with the heme onc in October 2016 after all the testing results were and it was time to discuss treatment (chemo), I came home on a Friday with an inflamed left ear.  I thought back and thought it might be related to the inflamed tragus I had a few weeks earlier.  By Saturday morning it was so much worse.  I had some Cipro, so did a little googling and decided to start it.  Well, by Saturday evening the right ear was affected too.  I thought it strange that it would be an infection type thing in both ears, but had started Cipro and had started warm compresses as I had with the tragus inflammation.  I have done hours of research on each of my diagnosis as they were presented to me, so by Sunday night I was googling away about my red, swollen, painful ears.  By the time of my appointment with the heme/onc on Tuesday afternoon, I was sure it was RP.  I told the heme onc that I didn’t want to do his diagnosing for him, but I had RP.  He looked at my ears, asked a few questions and excused himself to go look it up.  But what triggered it?  It was originally thought that it might have been triggered by the meds I had started for Latent TB. The first thing we did was stop those until we could figure it out.  By Wednesday my ears were really flaring and I took off work for a couple of days.  I called the heme/onc and explained my concern that I could feel it deeper in my ears and of the possibility of it resulting in hearing loss.  By now I also had slight intermittent hoarseness and slight sore throat. He was already working on a Rheumatology consult for me, so they got together and prescribed Prednisone 20mg daily.  I ended up with the Rheumy appt on Monday.  By this time, I had researched more, and somewhere in my reading saw that some were treated with Plaquenil and I decided that the reduction of the dosage of my Plaquenil was probably the reason for the flare.  I had an ID appt on Tuesday, she agreed and I restarted my TB meds and Plaquenil at 200mg twice a day.  I have continued on the Prednisone and have increased to as much as 50mg and tapered down to 20mg.  Any less and I have increased symptoms.

 

My main symptoms include: 

 

·       Constant red, watery eyes

 

·       Intermittent red ears

 

·       Constant feeling of something being in my throat

 

·       Intermittent hoarseness

 

·       Intermittent slight sore throat

 

I was on chemo for my myeloma from October 2016 to June 2017.  The meds included Dexamethasone, Velcade, Cytoxan, and Revlimid.  On August 2, 2017 I had a stem cell transplant.  I am now at Day +9.  I am hoping and praying that when fully engrafted that the stem cell transplant will also take care of my RP.  Only time will tell.