Monday, February 4, 2019

In the Pred-ni-ZONE

Have you ever been on high doses of prednisone for any length of time?

I hadn't until recently.  Yes, I have been on and off of a maintenance dosage of 5 or 10 milligrams for a few years now.  I knew it helped my joint inflammation tremendously but a therapist had convinced me that even that small dose was making my anxious, so I lowered it to 2.5 mg at times - just enough to take that awful edge off my pain.


About ten days ago I got shot up to 60 mgs per day, and let me tell you that I am now in the ZONE.

Ravenous hunger?  It took about a week to arrive full force.
Weight Gain:  A-weighting its arrival on the battlefield any minute now.
Intense dryness:  About 8 days to traipse all generals through the desert and through sand in the face and eyes and mouth of a person with Sjogren's.  Another day to take that rough stone sand and rub it over the entire skin surface of someone who suffers from painful small fiber neuropathy.
Moon Face:   Waxing at the present time.  Red. Full. Puffy.  There is no Sea of Tranquility here.
Insomnia:  Cannot report on this one.  Even 60 mgs of prednisone does not make a dent in my fatigue.
Muscle Weakness, Shakiness, Fear:  Present and accounted for.
Mood Changes and Anger:  Who ME? (Although someone should tell my husband that I didn't really call that divorce attorney. . . )

All of this because the results of that CT scan that I feared so, were as I feared.  It showed a big jump in interstitial lung disease.  Autoimmune pulmonary fibrosis.  The progress most likely attributed to discontinuing Rituxan infusions when we thought they were not helping my joint pain, when - in all probability - Rituxan was holding back progression of the lung disease.  While awaiting my upcoming appointment at the Johns Hopkins Interstitial Lung Disease Center I have been placed on this ungodly amount of prednisone and Cellcept.  Both immunosuppressant medications - the combination of which strikes fear into my septic-shocked-heart when I think about my experience just two years ago.

Someone please get me out of this ZONE!

Monday, January 7, 2019

Has It Really Been that Long?

Yes, it was ages ago when I last wrote.  Ages.

Six months ago, in fact, because my last post was about my last CT scan of my lungs and here I am scheduled for my six month follow-up later this week.

I somehow survived a hot summer and an autumn which never happened.  I made it through the dreaded holidays, thinking I would be less anxious and fatigued if I never stepped into a store, finished all of my online shopping before thanksgiving, didn't shop for (or prepare) any meal or bake a single cookie.  Perhaps I was just a wee bit less anxious but the fatigue hit me with a bang nonetheless.

I never thought my fatigue could get any worse.

It has.

And my lungs?  I am scared to death about what might show up on that CT scan.

It was decided that I officially failed a year of Rituxan treatments,  I then proceeded to fail one month of subcutaneous methotrexate.  Next, Orencia infusions were declined by my insurance company, and am now waiting for my rheumatologist to tell me which of the TNF inhibitors I can try next - that is, after I get a TB test along with a HepB DNA test.

Did I ever tell you that I test positive for HepB?  Yup.  The world's most straight-laced-church-going-monogamous woman somehow contracted a case of HepB in her past;  hussie that I was.  It's gone, thank God, but I have to prove that once again because a patient can't go on any of these meds if she/he has active HepB.   I'm also cut out of some other meds because I've already experienced a perforation in my large intestine.

Lucky Lizzie, you can call me.

So that appears to be all.  I promise to post more often.

Saturday, August 4, 2018

A Deep Sigh of Relief


Hear that?  From both lungs.

Just in case anyone in the universe was out there waiting for the results of my pulmonologist’s appointment, it couldn’t have gone better.  (Except if there had been no reason to have been there at all. . . )

Long story short, although we are still waiting on the second readout of the CT scan by the Hopkins radiologists, my pulmonologist showed my scan to the colleagues in his office and they all agreed that they did not agree with the first radiologist’s report.


Yes, something like nodules are there.  Yes, there is more scaring at the base of my lungs.  And, yes, it has progressed.

So why am I sighing?

I’m not quite sure, but it was like being at the dentist’s office with her pointing to these little shadows on your X-ray and saying “Well, it could be a cavity, but maybe not.  We’ll just keep an eye on it and decide when you come back in six months.”   That was it.   I suppose we could call it, “watchful waiting.”   I don’t need any treatment now because that collective group of pulmonologists do not think it’s pulmonary fibrosis.  Now exactly how many cases of fibrosis or interstitial lung disease they have collectively seen from Sjögren’s or Scleroderma patients, I’m not exactly sure, but I’m taking it for now and can decide if I need to see a more specialized specialist in six months.

Six months.


That reminds me. . . I need to call my dentist because I am two months overdue for my four-month check up and there is a little shadow on an X-ray we were watching. . .