New to GCA

I was diagnosed with GCA two weeks ago after three weeks in hospital and an ESR reading of 143.  I am now very much better on Pred but still breathless and feeling as if I have no strength from my lungs.  I usually sing in a Folk Club but cannot sing now as I have little volume.  How long does it take to get your full strength back? or is it forever.

Also very wobbly on my legs but I am doing more and more each day.

5 Replies

  • Hi Christine and welcome. 

    Glad to hear the Pred is working for you, but please don't try and do too much too soon. That's a mistake lots of us make, as soon as we feel better we think we are back to normal. Not so!

    You need to carry on as best you can , but with lots of rest as well. Wobbly legs are quite common, but they do improve. The breathlessness will improve in time too. Gentle exercise will help , but nothing too strenuous, and a little bit at a time - 10 or 15 mins at a time is enough. Read as much as you can about GCA looking through posts on here is quite enlightening. And ask questions about anything and everything - you will always get an answer - most have been there before you, and very willing to give advice.

    No it doesn't last forever, but it is a serious illness and takes its time. 

    Take care. 

  • As Dorset Lady says you do have a serious illness and need to give into it. Also the pred does have side effects which usually improve as you reduce your dose. 

  • Did you have the breathlessness symptoms prior to starting to take pred? Breathlessness can be due to the GCA if it is affecting the arteries in your chest which does happen, or it can be due to the pred. If it is due to the pred it should improve as the dose is reduced, which it will be over time.

    As the others say - you have to accept this is a new normal and adjust to it for some time. GCA is not a short acute illness I'm afraid and it is impossible to say how it will run. In the meantime - you need to rest as well as do some gentle exercise and be patient. Which I know is not what you want to hear but is the reality.

  • Visit this site and read up on everything you can - a bit at a time.

  • I have GCA and been on Pred 15 months.   My biggest problem early on was I was trying to do too much.  In denial of the illness.  I had to learn to prioritise and pace myself.  Rest is very important.  The wobbles and the lung weakness should improve.  My advice is be patient, learn to read your body and plan head for busy and rest days. Don't take on too much.  Good luck X 

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