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Still winded.

Posted , 13 users are following.

Woodrow
Woodrow

I have had PMR for just under 2 years.  I started at 20mg Pred know off Pred completely.  I tapered off .5 to 1 mg a month.   I still have very little energy in the morning and feel out of breath a bit.  As the day goes on I feel more normal.   Wondering if this is PMR effects on the way to remission.  I exercise less vigorous also as I get hurt easier.  

0 likes, 12 replies

12 Replies

  • EileenH
    EileenH Woodrow

    Posted

    It is felt it takes up to a year for your body - in particular adrenal function - to get back to normal after stopping long term pred. It sounds as if your adrenals are struggling a bit - they should make a load of cortisol about half an hour after you wake to get you ready for the day ahead and probably haven't got their act together yet. But it should improve - be patient.

    For this time you do need to be aware that your adrenal function may struggle if you are under stress of any sort - whether it is physical, emotional or illness. You should still carry your steroid card with you in case you are taken ill and cannot tell a healthcare professional that you have been on long term pred. Make sur eyou know the signs of an adrenal crisis and if you do feel ill - don't hesitate to call the emergency services. I'm not saying this to scare you but to make sure you don't get ill!

    All the best - onwards and upwards!

    • MariGrace
      MariGrace EileenH

      Posted

      Eileen, what is a steroid card? Who is supposed to give that to the patient? Is it available to print somewhere?

      Thanks. I have seen this mentioned, but in all my combined years on prednisone, have never seen one. Sounds like a good idea!

      Gratefully,

      MariGrace

    • diana21296
      diana21296 MariGrace

      Posted

      I got my little blue steroid card from GP's surgery.  They will order in if they haven't any.  I always have it in my purse with current dosage logged and I also wear a rubber Steroid Dependent wrist band which I ordered very cheaply on line.   If you can't get one through your Dr, cut a piece of card and put it in your purse with name and address on it too and address of your surgery as well as dosage.

    • Woodrow
      Woodrow EileenH

      Posted

      Thanks for your help the last two years.  This support site has really guided me threw this.   When you cant roll over in bed one morning due to your hips and shoulders hurting the knowledge shared by all was beyond helpful.  Thanks to all that have shared what works on this journey.       Sincerely Woodrow
    • MariGrace
      MariGrace diana21296

      Posted

      Thank you! I googled and there is one to download. A good idea.

      My "pack" has a list of my meds. doctors, and history.

      Numerous ER visits made all that necessary. I did not know about the steroid card.

      Gratefully, MariGrace

    • margaret22251
      margaret22251 MariGrace

      Posted

      Hi I got one from my chemist, but now I go to the hospital they gave me one, and fill it in each time they change my pred dose, same with the mix card.

      so ask your chemist. 

    • margaret22251
      margaret22251

      Posted

      Sorry mix should say methotrexate .😴

    • EileenH
      EileenH MariGrace

      Posted

      It may be a UK "thing" - I'm not sure they have them here in Italy either. Sometimes it is hard enough to find them in the UK!

    • Anhaga
      Anhaga MariGrace

      Posted

      If you are in North America, which I think you might be as you say prednisone, you won't get a steroid card, or anything really.  i bought a medical bracelet.  It comes with a lifetime free access to a personal health record you can keep updated.  The bracelet is engraved with your medical condition or medication (mine says prednisone) and a unique PIN which gives a first responder access to the health record, where among other things you can keep your dosage updated.  Please note one of the companies which provides medical bracelets charges a monthly fee, which I think is not a good idea for a longterm chronic illness.  Try medical id not medical alert. 

  • Handbrake
    Handbrake Woodrow

    Posted

    Hi Woodrow, my story is very similar to yours apart from my being a bit further down the line as It is 4 years since my diagnosis and 2 years off prednisolone. I did have a lot of muscle wastage and energy sap following the acute phase and still haven’t returned to pre PMR fitness but have focused on what I can do instead of challenging myself too much . I have a puppy so that has been great in motivating my daily walking., and daily living is pretty much back to normal...just a bit slower...guess what I’m trying to say is things definately get better but progress is slow . Good luck with your recovery x
    • cindy828
      cindy828 Handbrake

      Posted

      Hello Handbrake, thanks for sharing.  I've been off of steroids for three months and I've experienced the muscle wastage and energy sap, but there never seems to be two days alike.  On the days that I feel great, I guess I just overdo it and the good days are followed by painful, slow days.  Knowing that two years out you are still looking forward to your pre PMR fitness, makes me think I should be more patient with myself.  I wish there was a way of speeding up this process. 

    • Handbrake
      Handbrake cindy828

      Posted

      Hi Cindy, yes I know what you mean I guess it’s just a case of getting used to the ‘new you’ and when I look back to those painful days of the past I realise just how much progress I’ve made. In the case of PMR patience is definately a virtue haha 😆Good luck in your recovery x

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