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Long day, bad day

Posted , 12 users are following.

LisaCACO
LisaCACO

today was one of those days where you wake up and you know it's just going to go on forever. Woke up shaking and it wouldn't stop. Snow made the drive to my daughter's school absolutely horrible, then I had to drive one of my cats to the vet because he apparently believed he was a kitten and not an 11 year old and sprained/pulled a tendon. All of this on a day when I was clearly having a very shaking body day-had to use a cane. Given the schedule, I had to delay my pills in order to drive, which my head did not like (no driving on gabapentin).

Then zoom downtown to the Rheumatologist for my visit. my health has improved since the last visit, but then again, it pretty much had to. The doctor encouraged me to speed up my tapering of prednisone (jumping 10 mg at a time instead of the 5 mg i'm doing currently), but I said I was happy going very slowly, thank you. She reiterated that she'd work with me on my schedule but I could jump if I want to. *sigh* I think she wants me to jump 10 mg lol. 

long day, edema in arms and legs, shaking in arms and legs, no chance to take a nap, running around all day. ugh. hate days like today. so glad the day is over. just came here to complain smile.

2 likes, 49 replies

49 Replies

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  • EileenH
    EileenH LisaCACO

    Posted

    You know - realistically this is all stuff that you shouldn't be doing. Yes, I know how difficult it is but I only have PMR and at your stage I'd have struggled big time with that day.

    Is there no option for a bit of help? You need some rest - GCA is a serious illness however dismissive some doctors can be.

    • vanessa66630
      vanessa66630 EileenH

      Posted

      Hi Eileen, as you might remember I take Lodotra and I pay for them, it upsets me that the 1 and 2 mg cost the same as the 5, do you know why you cant divide the 5mg. thank you.
    • EileenH
      EileenH vanessa66630

      Posted

      Because the tablets are enclosed in a specially developed coating which resists the conditions in the stomach for 4 hours and then suddenly breaks down to deliver the entire dose of pred at one time, not over a longer period. If you cut them, the pred will be released in the stomach immediately and not at 2am which is the optimum time to take ordinary pred so it achieves the peak blood level at 4am.

       

      The cost of the medication in them is quite low - what you are paying for is the coating and the development costs for it. It is the same with enteric coated pred but it has been available for a long time, is out of patent and made by other companies so is now cheaper. Every new drug is the same - expensive as long as the company holds the patent. In fact, even 1mg white pred is very little cheaper than 5mg white pred. I thought I'd explained the reason for it being so much more expensive originally. 

    • LisaCACO
      LisaCACO EileenH

      Posted

      realistically I know I should be asking for help but frankly all the folks I know are busy moms like myself. hard to ask one of them for help, lol. we're all piled high and deep. 
    • vanessa66630
      vanessa66630 EileenH

      Posted

      thank you for explaining that,I started pred at 15 mg in August, in october my rheumy wanted me to start lowering the dose. I have been at 10 since end of  november and been ok but since then broke my leg and had tooth absess and overdosed on amoxicillian, have not reduced again but this last week have started to reduce slowly but have felt really tired and upset, does this mean am not ready,I know on forum it says to stay on 10 for a year, not what my rheumy says, I see him on saturday, is it this change that has made me just want to curl up in bed? thank you for being there for all us girls!!
    • EileenH
      EileenH vanessa66630

      Posted

      If your body isn't ready to reduce it won't work - and then it is up to your rheumy as to what happens next. If he refuses to cooperate with a slower reduction it is a bit difficult - since I assume no GP would provide a private prescription for Lodotra. By now you should have fairly much recovered and be able to reduce if the pMR allows - but I was at 9mg for a very long time.
    • vanessa66630
      vanessa66630 EileenH

      Posted

      sorry, but what I really want to know is the tiredness and crying due to trying to reduce, am not sure as the pain does not get worse.
    • EileenH
      EileenH vanessa66630

      Posted

      It could be - but you are still at a dose that is above the amount the body usually makes itself so I wouldn't have thought it was an adrenal problem. 

      They are also signs of depression - and struggling with a range of problems as you have been over the last few months is quite enough to cause that. It is something to discuss carefully with your GP because they can help relieve that if that is the cause of the tearfulness.

  • erika59785
    erika59785 LisaCACO

    Posted

    I can relate to you, Lisa.  Some days can be so rough, and it is helpful that you talk/write about it.  There are many of us fellow sufferers who understand, and many can give such helpful guidance.

    I am still "new" with PMR, and learning to adjust and try to live with it.  Not easy....the pain, the tiredness is always there to some extent.  Yes, STRESS is the worst enemy, but so difficult at times to avoid.

    All the best to you,

    Erika

  • margaret22251
    margaret22251 LisaCACO

    Posted

    H Lisa

    i can relate to what you are saying i find the more stressfull i get the more everything flares up, and i do panic a lot, but talking on this forum does help and i have found Eileen to be very helpfull and understanding.

     

  • LisaCACO
    LisaCACO

    Posted

    thanks for the sympathy, folks. Today was a slightly better day. I decided to forgo one planned shopping trip just lay low and cleaned the house instead and work on italian trip.  not exactly relaxing, but less stressful. Then I drove my crankly 10 year old to her viola lesson, picked up prescriptions at pharmacy, gave my kid a nice talking to for preteen behavior, then came home and made dinner. more relaxing than yesterday, lol. 

    my body was kind of shaky today, not as shaky as yesterday. And the nerves in my head are starting to explode, but it's time for the next gabapentin dose so, yay! that should end soon.

    Going to have to remind my family that I'm still sick. Pretty sure they think I'm not, or they forget. Should wear a big neon sign, lol. 

  • margaret22251
    margaret22251 LisaCACO

    Posted

    Hi Lisa i have found because there are no visable signs of PMR people dont understand .
    • LisaCACO
      LisaCACO margaret22251

      Posted

      You're totally correct. I have GCA, but I had all my muscles melt away under prednisone. now that I'm not in a wheelchair or shuffling around like a zombie (I worked out endlessly), they've moved on. I look significantly better so I must be well. ugh. 
  • julian.
    julian. LisaCACO

    Posted

    silly question ....

    do the family know what helps? All the little practical things that could make the day less tiring?

    • LisaCACO
      LisaCACO julian.

      Posted

      yes, but to be absolutely brutal, 10 year olds are very self absorbed and husbands can be dense at times. after more than 31 years together, I know his tendencies. I'm the one who does a bunch of stuff at home (hence our division of labor) and he is mr workaholic at work. the joke is that he will never retire but he'll die chained to his desk. he is what he is. the heart attack woke him up a tad and changed his diet, woohoo! but he still works himself to death. Ah well. In any event, he's the kind of guy you give a list of things to and he will put them on his list of lists. *sigh* I've explained exactly what I need them to do, we'll see if it gets done. we worked well as a team when I was visibly sick. now it's  fallen apart, esp because we have an upcoming vacation planned. we'll see what happens. in the meantime, mom's in charge or we go off to italy with absolutely nothing planned, lol. 
    • EileenH
      EileenH LisaCACO

      Posted

      You could maybe work out the things that don't HAVE to be done but that they COULD manage - and leave that to them. I do realise the problems mind! It is very funny watching my older daughter having hissy fits at her two - 15 and 13 and absolutely chips off the old block twisted

      Yes - I have a husband a bit like that. Promised me when he had cancer that he'd change and spend more time at home. I suppose he did - in front of the computer doing the same research stuff...

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