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  1. #1
    Join Date
    Feb 2015
    Location
    Oz
    Posts
    615

    Default RA and pneumonia

    I was admitted to hospital five, six days ago for pneumonia, compliments of RA. During my stay I was taken off all meds: MTX hydroxychloroquine, BP meds and so on. Since going off these meds things have improved: I've have feeling back in my toes, the swelling in my thumb, finger, left forearm, elbows and the golf ball size lump on my right elbow have all gone down a little. Along with that my BP has gone from 160/75 to 125/65 Also evident is the lessening of the pain in my wrists/elbows which have been the main sticking points. Prior to being admitted to hospital I was basically crippled, I could do nothing and the pain was excruciating. Lowering of BP is to be expected apparently so I would expect that to rise again; however, the remaining improvements I'll be hanging on to, I'm simply not willing to go back on MTX and hydroxychloroquine. The biologic med cimzia hasn't worked either so i'll be trying a new biologic next I see the rheumatologist. I suspect the cimzia has had some input into improvements but certainly not enough to warrant the side effects.

    On another note, I stayed at the Flinder's Medical Centre whilst being treated for pneumonia - what an absolute hell hole. Being a diabetic I suggested to the duty medical resident that I look after my diabetic meds myself, he agreed and made notes in his folder and promptly locked them away so the nurses were none the wiser, not put off I suggested to the nurses what insulin dosage was best, given carb intake, pre-meal sugar levels, boluses, etc - what a mistake, you do not tell nurses anything, full stop. I did find it rather strange that I never came across a single nurse who knew what a bolus was. I also had to ask to have my BGL checked and request medications even though they were annotated on my chart, they simply forgot or couldn't be bothered. Want a sheet change? not without asking. Want a gown change? not without asking. Best of all they simply cut off my prednisolone completely and couldn't understand why I was in pain. Then again maybe they did!

    Breakfast: Weet Bix but no milk; or, toast with no butter or spreads. Best of all. cold coffee every morning.

    I used to have great respect for nurses, now I have nothing but contempt.

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  3. #2
    Join Date
    Dec 2013
    Location
    San Antonio, Texas, USA
    Posts
    3,070

    Default

    Sorry to hear about the poor care, hope you feel better soon.
    Innovations are those useful things that, by dint of chance, manage to survive the stupidity and destructive tendencies inherent in human nature.

  4. #3
    Join Date
    Feb 2015
    Location
    Oz
    Posts
    615

    Default

    Aaaahg, finished the antibiotics and within 24 hours was back to being a damn cripple again: can't tie my shoelaces, can't tuck in my shirt in, so damn annoying. Re-starting cimzia again as the Rheumatologist isn't sure if it was working or not so another six weeks of that; but, no more hydroxychloroquine at least and MTX dose cut back. Turmeric and MSM seemed to have stopped working altogether and the Rheumatologist has put together a plan to taper the prednisone, no way will I be following that plan, not that fond of pain anymore. I'm starting to think all medical professionals, and I use the term 'professionals' loosely, should experience some of our maladies, just so they know what life is like in the real world and the repercussions of following their 'book' advice!

  5. #4
    Join Date
    Feb 2006
    Location
    Perth
    Posts
    27,756

    Default

    Definitely sounds like the rough end of the pineapple all round there.
    Hope things improve one way or another.

  6. #5
    Join Date
    Feb 2015
    Location
    Oz
    Posts
    615

    Default

    Instead of following the Doc's advice and tapering the prednisone by 1.5 mg I tapered it by .5mg. Oh boy, is this fun! So, if anyone suggests prednisone treatment for you, kick them repeatedly where it hurts most, then ask them how much they are enjoying the pain!

  7. #6
    Join Date
    Feb 2015
    Location
    Oz
    Posts
    615

    Default

    I developed a cough a few weeks ago, at times the cough has me doubled over and my chest hurts like hell. At the same time I started having difficulty swallowing, 7-8 shots or more at getting food down, damned annoying. Eventually I was sent off for barium swallow test which showed nothing so was then referred to a specialist. Not sure what the problem is but the specialist seems to think it is a reflux problem. Booked into hospital next Monday for an endoscopy and possible esophageal dilation.

    No luck with RA medications yet, pain is getting worse, xrays show damaged wrist and elbow joints, left hand is pretty well useless now. Due to start a different biologic after the esophageal procedure, at this rate by the time I find something that works, if I do, the damage will be too great. Rheumatologist has changed his diagnosis to Psoriatic Arthritis, all guess work with this damn disease. Every single medication makes me itch, I spend half my life being smeared with concoctions to stop me tearing my skin off. The wife now has a heap of extras placed on her: mowing the lawn, gardening, household maintenance (ever tried to teach a woman how to use a drill?), dressing me on occasion, driving me everywhere, I can't even help her by drying the dishes, getting so sick of the pain and not being able to do anything.

  8. #7
    Join Date
    Dec 2013
    Location
    San Antonio, Texas, USA
    Posts
    3,070

    Default

    Terrible that you're suffering so, I'm very sorry to read of your problems. The immune system is very much a double-edged sword.
    Hoping for the best for you.
    Innovations are those useful things that, by dint of chance, manage to survive the stupidity and destructive tendencies inherent in human nature.

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