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Five months on MXT - an update

Posted , 5 users are following.

FlipDover_Aust
FlipDover_Aust

I went to see my rheumy yesterday - I only get to see him every 2 -3  months.

A bit of history: I started on MXT in Dec as I was unable to under 20mg of pred and was feeling very poorly. I saw improvements within a couple of weeks and now 5 months in I'm down to 5mg pred. BUT, not without its own set of problems. Sigh...

My liver function tests weren't too flash a month ago, so I had another one last week - it shows slight improvement. Rheumy said that the MXT often 'upsets' the liver in the early days and that it might settle down again. Here's hoping! I was worried I'd have to go off the MXT and then have to increase my pred again. That would have been very depressing.

What was more worrying is that my CPR is higher than its ever been, even at diagnosis. I fear I've hit that point where the pred is barely able to contain the PMR. So I'm slowing my reductions to 1/2 mg a month using DSNS - which I told my rhuemy about - he was most impressed and was going to read up on it. One more rhuemy being educated by a patient! lol

I have one question for you: just about every med I'm on is supposed to decrease my appetite (except the pred, and I'm on a low enough dose that it shouldn't be a problem) so how come I can't stop eating? AAGGHHHH!!!! LOL

 

0 likes, 10 replies

10 Replies

  • LayneTX
    LayneTX FlipDover_Aust

    Posted

    Well...we eat to feel better, or think we will feel better. We want something immediate to taste good, or give us pleasure, satisfaction. Get our senses involved. Some thing to do to feel better.

    Today I'm struggling too.  I went to grocery store to buy my healthy foods, but a big inner rage came out and I said heck, I want to eat something I'm not supposed to eat darn it! And I bought some yummy, tasty pistachio "flavored" as the package says, muffins.  I scarfed one down! Yes it tasted so good. I apologized to my body, wish I had spit it out (ha, I've done that before, I've never regurgitated however). But I realize how stupid that was. So...I'm back to reading my books on being at peace, taking care of our body.

    I recently learned a meditation where I close my eyes, visualize a placed I'd like to be, feel my self walk, smell the pine trees, feel the breeze, ...

    I also heard our adrenals can make us crave sugars.

    I also have a meditation that focuses on balancing the adrenal glands. 

    Also...trying to be thankful and mindful when we eat. It makes it more satisfying. Eat what we need to fuel the body then "step away from the kitchen" wink 

    Breathing meditations.

    Dont know if this is your case, or if you can relate. But I can kind of understand. 

    Im learning it has to be practiced daily, maybe several times a day. darn it wink I just want to magically feel better, ha, ha. 

    You work right?  Maybe go in a room, or dark closet, imagine yourself on the beach, feel the sand, the warmth, feel safe, feel healthy, for 5 minutes and see if that helps. 

    • Juno-Irl-Dub
      Juno-Irl-Dub LayneTX

      Posted

      Layne,  I LOVE  the concept of  'a big inner rage'  coming out !!  Well done!

      Life is for living and you HAVE to be able to give yourself a break and say "feck all the rules, I'm giving myself a day off today'.  I absolutely hate doing floor exercises which  I'm told are a 'must'  for a stronger back - I find them unbelievably dry and boring. The only way I can manage is to allow myself a day off if I REALLY have had enough of behaving myself. So it's a choice to do it or not. It's just a JOY to suddenly decide ' I'm letting it go today, I'll have a sleep in - or whatever. I tell myself that this improves compliance in the long term. . . . .  Keep up the good work - but not always !       J

       

    • FlipDover_Aust
      FlipDover_Aust LayneTX

      Posted

      You girls really 'get' me. Thank you.

      I feel so much better both physically and emotionally when I plan and eat well.... but it all goes out the window at 'weak' moments.

      I AM craving sugar... you might have a point about the adrenals... worth looking in to - if I knew there was a physiological reason for my 'weakness' I might be able to cope with it better.

      (you just know that anything that is 'flavoured' is not good for you!)

    • FlipDover_Aust
      FlipDover_Aust Juno-Irl-Dub

      Posted

      unfortunately I say "feck the rules" waaaaay too often!

      And oh how I relate to the floor exercises! I just can't bring myself to do them even though I pay good money to see a phsyio who tells me to do them!

    • Anhaga
      Anhaga FlipDover_Aust

      Posted

      I grew up with (mostly) traditional English grub.  This of course included sugar in tea and on cereal, etc.,  meals always ended with a sweet of some sort.  My father, being European, provided a bit of a balance with more interesting vegetables and nothing but fruit for dessert.  When I was sixteen I decided for Lent to give up sugar in my tea and coffee and on my cereal.  About three or four days into this I realized that all my life I had tasted the sugar, not the food or drink.  I have never ever had sugar in my tea or coffee since, nor have I added extra sugar to cereal, and buy cereal with no added sugar (or I did until giving up cereal altogether when I was worried about diabetes owing to pred).  I don't even think it was necessarily easier to retrain my taste buds at sixteen than it was at sixty because over the past few years as I've become more aware of deficiencies in the food supply our whole family has changed its eating habits and I can't imagine even liking many of the things we used to eat.  A standard chocolate bar is now to me unbearably sweet, but very unsatisfying.  I love having a single square of pure organic dark chocolate.  🍲
    • LayneTX
      LayneTX FlipDover_Aust

      Posted

      Ha, ha, my father-in-law used to say "if it tastes good, spit it out" 

      ugh.

      But I remember my mother-in-law watched me eat a bunch of cantaloupe and she said "you'd rather eat the cantaloupe than that pie?" She's a real sweet-olohlic. She put sugar in a guacamole dip, I asked my husband, is she trying to kill me? wink 

  • linda17563
    linda17563 FlipDover_Aust

    Posted

    Had been wondering how you were getting on possibly without the MTHX...but if it suits you, and can lower pred....good luck.

    I like you have to lower 1/2mg a month, and still get some flare....my Rheumie has suggested Tramadol....I don`t think so!....I seem to be getting a lot of pain in my knees, I`m waiting for blood test results....it always seem 2 steps forward 1 step back....

    As for appetite, I don`t think meds work anywhere near the same for two people, take pred for example some gain lots, some lose....what`s that all about!....me I`v gained....mostly on stomach and face!

    Sometimes I think we "reward" ourselves for our suffering.....well, that`s my excuse amyway!wink  Good luck....

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