Mr Staypuft the Marshmallow Man…and the endless prednisone taper

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swollen face

swollen faceI’m tired and I’m fed up.  Every morning and evening the swelling is pretty gross.  From talking with a friend online, I realised its not joint swelling, its fluid retention.  I stopped my blood pressure medication last week, and it contains an ACE inhibitor, and a diuretic.  The diuretic part was keeping the oedema at bay.  Without it I am Mr Staypuft, the marshmallow man.  And its not very comfortable.

My eyes feel the worst, and they look dreadful too. But it takes about ten minutes to get them open in the morning.  They hurt.  I put a cold compress on them to soothe them.  Its not blepharitis, I’m using my moisturising eye gel. It’s not an allergic reaction, antihistamines have no effect.

swollen feetMy feet are the next worst, but my whole body feels bloated and uncomfortable.  My skin feels too tight. I have gained 5kg since last week, and it has to be mostly fluid.

And I’m just tired and fed up.

Everything has a flow on effect.  Blood pressure is low, so stop the blood pressure meds.  Blow up like a balloon.  Nothing is simple.  You would think being able to stop a medication would be great, but no.  It’s caused a bunch of other problems.  I’m seeing Dr Efficient in half an hour so that she can take my blood pressure and decide if I should take the medication again. If not, I’m going to ask her for a diuretic.

My head is exploding with the pressure, my ears have that ‘full’ feeling and the tinnitus is more a roaring than a buzzing today.

Pain isn’t too bad though.  I’ve started Naprosyn again, and it really does make a very big difference, especially to the lumbar pain.  So there’s the upside.

My attitude is in the toilet though.  I just want to get this taper done, so I can start treatment again. No meds is no fun.  I’m still waiting on direction from my rheumatologist as to what to do next. How fast I can taper.  It has been a week. She was excellent at my last appointment, very caring and involved.  I seem to have dropped off her radar though.

Rheumies are overworked.

I’m going to email her these photos, and also email them to my immunologist.  Whatever the theory, I think she needs to just figure it out, and put me on Imuran.  I know they both have a tonne of patients and half of them are in worse shape than me, but I’m getting to the end of my positive attitude tether here, and I’m struggling to keep the basics turning over.

But now its time to get ready to see Dr Efficient.  I wanted very badly to see my usual GP, because I wanted some bedside manner.  Some kindness. Someone to talk to.  Some understanding and some compassion.

I’m not going to get any of that from Dr Efficient. But I don’t call her that for nothing.  Maybe she’ll light a fire under my rheumy and have some ideas of her own.  I can hope.

 

POSTBLOG:   Dr Efficent was, efficient.  She refilled my pain meds, looked at my photos and disagreed.  She examined my joints and said the swelling is joint swelling and recommended I send these pictures to my rheumatologist and immunologist to get them off the fence and me out of the holding pattern and get a PLAN happening.  She considered a diuretic, but said that would drop my blood pressure, so while there might be some fluid retention, I’m just going to have to put up with it. She recommended I see my ophthalmologist soon though, to make sure all this inflammation is not doing damage to my eyes.  Check, add that to the ‘to-do’ list.

In them meantime I’m making some phone calls and sending some emails to my rheumy and my immunologist to remind them I’m out here and the wheels are falling off.

4 COMMENTS

  1. I also love the new layout. Congratulations !!

    For me dropping one med is truly frightening. I know how much difficulty I have getting things balanced and when a doc says hey stop this, and the next one says but your gaining weight, or losing it, or your weight is the same or it dropped but then started to rise or whatever just drives me nuts. Look, doctor, I know this is sort of funky but guess what other docs practice here as well. I know you don’t talk, but you live here let’s get together and have a nice discussion.

    Yeah never happens never mind.

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