Eosinophilic Esophagitis is out of control but my immunologist has a theory

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My allergies are out of control, since tapering down on prednisone.   My hay fever has been horrid.  Asthma isn’t too bad, but I need my reliever, and I feel breathless regularly.  And for the last two nights I have been woken because I cannot breathe, my nasal passages completely blocked.

I have to sit upright, use a steroid nasal spray, and then sleep sitting up for the rest of the night, still feeling like I’m not getting enough air.

Also, despite following my elimination diet strictly, I am unable to swallow anything more solid than thick purees.

Everyone is having trouble with their allergies right now, it is recognised as a very bad allergy season here.  But not everyone has Eosinophilic Esophagitis and wakes up choking on their own saliva because their throat has closed up.

EoE is sometimes cause by environmental allergens, and in that case, its very hard to treat. I am taking daily antihistamines, using antihistamine eye drops because my eyes are swollen shut every morning, plus I am taking oral steroids.

As my Immunologist/Allergist said, I am an unusual case.  (Understatement of the century!)

So because waking up being unable to breathe, and choking on your own saliva are unpleasant experiences, and its due my Eosinphilic Esophagitis worsening due to the prednisone taper I called my Immunologist, hoping to move my appointment with her forward.

She came to the phone and spoke to me.  She’s an amazing doctor. She actually talks to patients on the phone!  She apologised, because she can only get me in one week earlier, because she’s booked solid.  I told her a week is great, it all helps.

She said that she and my rheumatologist had discussed my case, and she has gone through my old records again, and she truly feels that something has been missed in my case.  She has some ideas, and she will discuss her thoughts fully with me at my appointment on the 20th, but she wants me to have a bone marrow biopsy.

Great.

She told me not to worry, the procedure is a bit painful but she is referring me to an excellent hematologist (a new ologist! Yay!).  And she’s sending out a form for some bloodwork, to get done before the appointment.

She also said if the next prednisone drop makes things at all worse, to stop tapering, and to hold at 12.5mg.  The lower the prednisone dose the better, but if the choking continues then to STOP, because the choking can be dangerous (obviously enough I guess).

So she is very interested in getting to the bottom of all this. I told her that my joints are most definitely swelling, and she said she would tell my rheumatologist that.  But that there are other causes for joint pain and swelling and she wanted to rule a few rare, eosinophilic diseases out.

Which is good. But it’s also a little scary. Bone marrow biopsy.  Implies what she’s thinking isn’t anything too good.  But that’s a problem for the week after next. I have other things to deal with in the meantime, so I’ll put it out of my head and not think of all the nasty things that could mean, and not worry.

And in the meantime, I have some solid compression bandages and I think I can get my runners on my feet. So I’m going to ride a recumbent bike for a while, and burn off some excess stress. And that will make me feel better.

4 COMMENTS

  1. I sort of like the idea of collecting ologists. They all need someone to talk to, if we collect them, maybe they will talk about us (to each other). Now getting them to talk about us to each other, sounds like a remarkable idea.

  2. Ooh just had an idea for a game-Hospital Bingo collect a stamp from all the departments and Bingo. I didn’t say it was a fun game and pretty sure no one will be lining to play.Probably not a great prize at the end either. Ok so scarp that idea 🙂
    Hope you are doing ok.Take care.

  3. Shit, I’m amazed that you are still alive! I thought your drs would of killed you by now, but that wouldn’t be good for business!

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