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"Things are going to be be pretty awful for you"

Posted , 9 users are following.

FlipDover_Aust
FlipDover_Aust

....those are the words I heard twice yesterday at my rheumatologist appointment.  Fills me with great joy - not. 

In in a nutshell.....yes I have PMR (no doubt in my kind whatsoever) BUT I am prednisone 'resistant'. So the 20mg I'm taking isn't working and it's partly because it's the pred itself that is making me feel worse - the stiffness and fatigue.... I take more because it's not working, and it in turn makes the symptoms worse. I may also habe fibromyalgia- something else to be thrilled about.  

Solution? Reduce the pred dramatically and see if the symptoms reduce and/or PMR symptoms return.  In the meantime take methotrexate and folic acid and Lyrica for the pain.  Seems that rheumies like this stuff! 

So I'm faced with taking methotrexate which will make me sick, reducing pred quickly, which will make me sick and PMR returning which will make me sick. 

The only joy in all this is I'm now officially off work for two months while it gets sorted.  That is a huge relief I have to say.  

1 like, 15 replies

15 Replies

  • iellen32
    iellen32 FlipDover_Aust

    Posted

    Hi FlipDover,

    Yes, you have a lot to carry on - in same time you seem to have a positive attitude and strenght regardless your symptoms and your specialist prognosis.

    Your kind of attitude works in your favor and it always will!

    The same happens to me and my Temporal Arteritis, GCA.

    Besides Pred , a strict diet and daily workout, I believe firmly in what I want to happen and I visualize in my mind the outcome I want.

    I do it permanently mostly at night before start sleeping- the best moment to do so as I've learned.

    So you are Pred resistant!

    More likely you will feel better after start taking the other medication instead.

    I would like to know how your symptoms evolve after changing the medication.

    Enjoy these two months you have left to work.

    Take good care of you!

    Maryellen

  • gillian_25383
    gillian_25383 FlipDover_Aust

    Posted

    If methotrexate tablets make you sick it can be self administered by sub-cutaneous injections.They will teach you how to do it.I was worried about stabbing myself but it's a piece of cake plus it avoids gut so so far touch wood no side effects.Good luck.
  • Oregonjohn-UK
    Oregonjohn-UK FlipDover_Aust

    Posted

    Our thoughts are with you.  I hope and pray that it all gets 'sorted'.  Hope you have a better 2016.

    John

  • penelope10875
    penelope10875 FlipDover_Aust

    Posted

    Poor you, but, it is something when 'they' acknowledge your problems!

    Hoope it settles quickly.

  • mphooey
    mphooey FlipDover_Aust

    Posted

    I'm on methotrexate now and so far it hasn't made me sick. Maybe it won't for you either. Of course I just started and the aches are still with me. I am learning to be stoic.
  • flydog
    flydog FlipDover_Aust

    Posted

    Hi flipdover,

    sounds like you are going to a have a not so great Christmas!!!, I and I think everyone on here will say a prayer for you and will be thinking of you over the festive season, Max.

  • iellen32
    iellen32 FlipDover_Aust

    Posted

    Hi FlipDover,

    You know as I do too, we will have a Happy Christmas! Yes, we will!

    We are not at the hospital, we are at home.

    Regardless all we are going throug- it' s not perfect but could be worse though!!!

    You will be working for a while and you recognize how much the positive side of that.

    Everything counts!

    We will not let anything and I mean anything steal our JOY!

    Take care 💐

  • Susanne_M_UK
    Susanne_M_UK FlipDover_Aust

    Posted

    What a pain, - in more ways than one!

    Wishing you well on your new meds and hope the side effects are manageable. Xx

  • gillian_25383
    gillian_25383 FlipDover_Aust

    Posted

    I can sympathise with you.Just found out I have osteoarthritis in my neck to go with RA&PMR.I feel soo blessed.Enjoy your time off,try and stay positive and have a wonderful Christmas
    • Anhaga
      Anhaga gillian_25383

      Posted

      I've had OA in my neck since I was quite young.  Best thing ever was about 20 years ago getting some very simple exercises from physiotherapist to strengthen the muscles. 
    • gillian_25383
      gillian_25383 Anhaga

      Posted

      Hi Anhaga,are they the same as the ones in the arthritis research leaflet i.e. head forward and back,side to side and leading with your ear down to each shoulder?.Rheumatology nurse gave me it and have been doing them religiously every day.Rheumatologist just got me to have an up to date neck xray.Radiologist said with it being Christmas to give them till mid January then if haven't heard anything phone the hospital.Depending on xray result I may get self referral form for NHS physio at our local centreAtleast then I will know if doing exercises right.
    • Anhaga
      Anhaga gillian_25383

      Posted

      Not quite.  I think what you are describing is movements to maintain flexibility, and I have those as well.  This is what I was given to do:  Sit with straight posture, head facing forward.  Take your hand and with your first two fingers press your forehead for a few seconds, then the back of your head then the side of your head, then with the other hand the other side of your head, each time resisting the pressure of your hand so that you maintain the straight posture.  Work up to ten repetitions two or three times a day.  At the time I was told to use only the two fingers so that I did not cause injury to my weakened neck.  Now I tend to use three fingers and don't do it the exercises as frequently, we are talking about a couple of decades of this after all!  As this was prescribed to me, I'd recommend asking your medic about it before trying, in case there are any contraindications.  confused
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