Reassurance that you're NOT a hypochondriac.

[treebranches]

Hi, everyone.  For those that don't know or don't remember, I'm treebranches and I have idiopathic small fiber peripheral neuropathy (about ten years in limbo).  I've been on Lyrica for a while now and it's a miracle drug, allowing me to reclaim my life.  

I wanted to pop in to get some input on something else, though, and I know that while some of you might not have any knowledge of it, I know you'll be reassuring and give it to me straight (and, honestly, I doubt the asthma forum people will be any help because none are regulars).  I'm sorry in advance for the length because I know some of you have trouble reading the small text, so I tried to make small paragraphs.

Scenario:

I have severe asthma and I'm dependent on the corticosteroid Advair (a corticosteroid, for those that don't know, is a hormonal steroid that is produced in the adrenal cortex).  I have been ill for the past six weeks with pneumonia, which makes the asthma worse.  I'm dependent on a nebulizer, which is a machine that is used in ERs to deliver rescue medication for when the rescue inhaler fails to...rescue.

Last week I had another x-ray and it was determined that I am now pneumonia-free (finally).  Unfortunately, my breathing has not improved so I was put on the oral steroid Prednisone (in replacement of the Advair because you can't mix and match your steroids like clothes :P).  

Prednisone is tapered off so you don't experience withdrawls, so my medication dosage has been this:  four pills for two days, three pills for two days, two pills for two days and one pill for two days.  Today is day one of one pill.  

The first two days (four pills) were great and I felt like I breathing normally (normal for me, that is) for the first time in weeks, but as I've been tapered off I've gone down hill again.  An unfortunate side effect of the Prednisone is its ability to aggravate my insomnia, so I did not sleep for two days.  I was wandering around my house aimlessly, coughing and slightly out-of-it until I finally passed out for about eighteen hours (so says my boyfriend).  Fun, right?  

This is my problem:  the doctor that prescribed the Prednisone said that if I do not improve I should go to a hospital for IV steroids.  I'm still having trouble breathing, I'm coughing almost constantly and I'm still dependent on my nebulizer every day-or-two.  

Yesterday I went into a coughing fit and ended up coughing mucus out of my lungs (sadly, this is normal) so I went to wash my hands.  When I saw myself in the mirror I realized that I had slight cyanosis (lack of oxygen causing your lips and nailbeds blue and an emergency situation) so I went straight to my nebulizer.  The thing was, I was just coughing and I didn't feel like I was having an attack because I don't have the type of asthma that comes with the cough.  

I have today and tomorrow left to take the Prednisone and I'm not sure how long its half-life is, whether I should wait to finish the course, etc. before seeking an IV steroid.  I did the most logical thing and called my insurance's nurse hot line.  Unfortunately, she was more detrimental than helpful.  

Basically, she said that she couldn't help because I wasn't currently in acute distress.  Then she said I needed to call my doctor because she prescribes the steroid (that's perfectly logical).  She couldn't tell me the half-life of Prednisone so I don't know how long it stays in my body and she wouldn't make any suggestions as far as "how do I know if I need the IV steroid" goes.

I want to call my doctor, but after talking to the nurse I'm just having doubts about myself and my breathing.  That's to say, she made me feel like I was being a baby, a drama queen or a hypochondriac.  I know that a lot of you know how this feels because people don't understand what you go through every day with a neurological condition like MS.  

I guess I just need reassurance that I'm not being silly and that breathing normally -is- a big deal that -needs- to be addressed sooner than later.

Thanks in advance, you're the most supportive group of people I know.

-treebranches

[treebranches]

So this doctor I saw yesterday thinks (and slightly confirmed suspicions) that this is an allergy-related thing with my asthma (which explains the coughing).  I'm on three steroids now, a nose spray, the Prednisone again and my Advair at the higher dosage (500-50 instead of 250-50).  

Yesterday I slept for about fourteen hours and not once did I wake up coughing.  So we'll see how this goes.

Thanks again, Quix, I'm sending you much love through the internets right now.  <3 <3 <3

[Quixotic1]

I want to clarify one point.  This isn't necessarily a situation of steroid dependence.  It could also be that the inflammation is so severe that quite a bit remained after the first heavy dose of steroids and the lower oral dose was not enough to keep it calmed down.

Steroid dependence is a difficult issue and gets confused between adrenal corticosteroid insufficiency due to long-term steroid use and chronic inflammation that requires a higher long-term dose.

If there are questions about that very complex statement, I'll be glad to answer them.

Quix

[treebranches]

Thanks for the reassurance, I knew I could count on you.  :D

Called my doctor's nurse and I'm going in this afternoon to see another, internal medicine doctor.  I'm pretty done with this whole ordeal.

I'll be back on after I get back and let you know how that went.  

<3

[Quixotic1]

Hey, Kiddo, Long time no see!  I'm sorry to hear about your problems after pneumonia.  Unfortunately that's not uncommon.  I did my post-doc training in Immunlogy and Asthma so I have a couple ideas about what is happening.

Basically, I think your steroid taper was too short.  It might have been okay for most people, but you already had some dependence on the inhaled steroid.  And, yes, you need to address this situation with your doctor immediately.  The doc didn't really make a mistake.  Often they don't know the extent of dependence until they see a failure of stopping it or of a fast taper.

Pneumonia can leave a lasting inflammation in the lung tissue for many months after the infection is cured.  Do you have any idea if you had one of the atypical pneumonias like Mycoplasma, Chlamydia, or Pertussis - or even Influenza?  Those are all known for leaving the lungs inflamed and twitchy long after the infection.

So, you're not being silly at all.  One way of addressing your problem is to re-establish the control over the wheezing with another course of steroids oral or IV (your doctor's choice).  Then, taper the oral meds much more slowly - like over three to four weeks, meanwhile using your Advair.

I suggest you call you doc ASAP and tell him that your symptoms returned immediately when you tapered to a lower dose.  Even say something like, "It's as if I was going down on the dose too quickly."  You can even tell him what the doc in the hospital said - unless you are talking to the doc in the hospital.  Also tell him about the coughing episode that left you cyanotic.  (That's exactly what happens to infants with Pertussis).

So....do all of this now and come back and tell us what they are going to do.

HUGS

Quix