Goodbye Prenisone.

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  • Karanya
    Member
    • Oct 2009
    • 402

    #1

    Goodbye Prenisone.

    I can't say I'll miss you.

    So, for those following my fun and exciting health woes, I am pleased to say that I'm no longer in prednisone's painful grip. My kindly-old-man/quack of an ophthalmologist (even though he has a ridiculous amount of experience and is extremely well-respected) got his ass chewed out by my neurologist.

    I needed a neurologist (generally the main doctor one sees with MS, like a lupus or RA patient sees a rheumatologist), and my ophthalmologist went to the trouble of calling a bunch of colleagues, making a list of recommendations, then calling and interviewing each one to find who he thought would be the best doctor for me in this area. Wow.

    So the neurologist got ahold of my medical records from the ophthalmologist and called him and told him he was ****ing up. In my original post on this subject, I mentioned that I was really iffy about starting the steroids, since the only large-scale study on the subject showed an INCREASE in the risk of developing MS and an INCREASE in the risk of recurrent optic neuritis if oral steroids were used in approximately the dose I was given. But I trusted the old fart with his 300-page-long C.V. and took the pills I was prescribed.

    The neurologist, on the other hand, shit a brick when he found out and insisted that I be immediately taken off the steroids as quickly as possible to prevent any further risk. So, under close medical supervision and while doped up to the gills to offset as many steroid withdrawal symptoms as possible, they took me off the prednisone entirely.

    Hurrah! I'm no longer farting blood!

    Did I mention I developed corticosteroid-induced diabetes, too? It was cured within 24 hours, however, and I'm back to my perfect blood sugar numbers again.

    I'm through the withdrawal now and feeling quite a bit better, albeit with the assorted unpleasantness that goes along with a fresh MS diagnosis.

    Aside from the extremely expensive ($2,500 a month) and extremely important (massive reduction in the frequency of exacerbations) injectable "CRAB" drugs, there's a triad of drugs that pretty much all the MS patients get. Baclofen for spasticity, Provigil for fatigue, and Neurontin or Lyrica for nerve pain.

    We didn't want to start the whole triad all at once (too hard to figure out what was causing side effects), so we're going with a new drug after each two week period. Started Baclofen about two weeks ago -- amazing! The stiffness and muscle spasms are GONE. Then started Provigil yesterday -- holy crap, I can make it through the day without taking a dozen naps! As for the Neurontin or Lyrica.. that's next and I already have a good idea of what to expect, having been given some leftovers of these drugs by my Dad (prescribed for diabetic neuropathy -- they didn't work for him). I had amazing relief and very few, minor side effects.

    I'm already back to maybe 2/3rds of what I was prior to The Big Health Crisis.

    --K
  • Roo
    Member
    • Jun 2008
    • 3446

    #2
    Congrats Karanya! As mentioned in your previous thread, I've seen prednisone at work and I never, ever want to be in a position where I have to take that crap. Good to hear they got you off it without any problems. Here's to never needing it again.

    Comment

    • Karanya
      Member
      • Oct 2009
      • 402

      #3
      Originally posted by Roo
      Congrats Karanya! As mentioned in your previous thread, I've seen prednisone at work and I never, ever want to be in a position where I have to take that crap. Good to hear they got you off it without any problems. Here's to never needing it again.
      Oh, I will have to take it again, but I'm not worried.

      See, the thing about prednisone is that if you take it for a few days or a week, it doesn't (for most people, myself included) cause any unpleasant side effects -- even at extremely high doses.

      At the hospital when I first went in for my dead eyeball, they gave me 1000mg of an extremely potent steroid that causes the exact same side effects -- only more so -- as prednisone. 1000mg of this SuperPrednisone, all at once, IV push. And I had zero side effects -- nothing, nada, zip. That's pretty typical.

      In fact, for the first couple of weeks of prednisone @ 100mg/day, I was feeling pretty good (it tends to make people energetic and it's a very potent anti-inflammatory). So I was full of energy and my knees, which have bothered me for years, were pain-free for the first time in ages.

      Usually it's after a few weeks the side effects show up.. and then over time, they just pile up and get worse and worse. I was on prednisone for more than three months and at a mega-dose, so you can imagine...

      So while I know I will need prednisone therapy again -- it's used for MS exacerbations to reduce the permanent damage done -- I also know that the treatment protocol calls for only three days of steroids (at extremely high doses).

      But barring a life-threatening disease, I will NEVER ever take prednisone for more than two weeks again. NEVER.

      The best part of this whole ordeal was getting on a scale 48 hours after I halted the prednisone. I had gained more than 30 pounds which I swore up and down had to be water because I wasn't eating any more than usual. I lost 20 lbs in 48 hours and the other 10 over the next few days. How's THAT for a diet? LOL

      BTW, apparently the body has more ways to get rid of excess water than pissing like a race horse (which I was certainly doing). I kept waking up leaking tremendous amounts of fluids from every orifice on my head (okay, not my ears)... watery snot running in huge streams out of my nose, tears running out of my eyes by the spoonful, a big puddle of drool on my pillow...

      I shouldn't be too surprised -- after all, my face was extremely swollen and looked like the offspring of an extremely obese woman and a chipmunk with its cheeks full. I *really* wish I had taken a picture, it was insane. It was like someone had pasted this hugely fat head onto my body... it was really bizarre. I had the face of a 600 pound woman, normal weight arms and legs, and an abdomen that looked like I was about to give birth to twins...

      Man, was I pissed when some old lady in front of me at the grocery store looked at my cart and clucked her tongue disapprovingly. I was having a good day and we were nearly out of food so we bought a few weeks' supply all at once. And since I've been sick (I'm the only one in the house that can cook anything edible), we've been buying a lot of convenience food so... here I was pushing this overloaded cart full of frozen dinners, burritos, frozen waffles, etc. and retaining so much water from the steroids that I looked truly huge from the neck up. But seriously, that was uncalled for. Grr...

      --K

      Comment

      • Snusdog
        Member
        • Jun 2008
        • 6752

        #4
        Karanya,

        Good night what an ordeal!. I am so glad they seem to have things back on the right track. Our thoughts and prayers go out to you. Thanks for keeping us posted.

        Dog 8)
        When it's my time to go, I want to die peacefully in my sleep, like my uncle did....... Not screaming in terror like his passengers

        Comment

        • Premium Parrots
          Super Moderators
          • Feb 2008
          • 9760

          #5
          Glad to see things are getting better for you.
          Grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to hide the bodies of the people I killed because they were annoying......





          I've been wrong lots of times.  Lots of times I've thought I was wrong only to find out that I was right in the beginning.


          Comment

          • victoryredchevy
            Member
            • Jan 2008
            • 303

            #6
            I was on this lovely drug for about 4 or 5 months straight a couple of years ago. For unexlainable daily outbreaks of hives. Hot flashes, moodiness, moonface and weight gain. Yeah, I don't miss it.

            Comment

            • lxskllr
              Member
              • Sep 2007
              • 13435

              #7
              I'm glad things are looking up. I haven't had to take steroids so far; I hope my good fortune continues.

              Comment

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