Thank you for your replies

I am so glad I joined this blog. Just being in touch with other PMR/GCA sufferes does help. Thank you so much to all who have responded to my questions it has been really helpful and comforting reading all your replies. The general consensus seems to be "no rushing to be off steroids" i do agree with this and all other advice given

11 Replies

  • Obrien, that's a very kind post. We're only too happy to offer support as we've all been there, understand what each other is going through and, in many cases, have worn out the proverbial t-shirt!

    You've already learnt one of the hardest lessons: "no rushing to be off steroids". Another is to learn to pace ourselves, helping ourselves to lots of TLC along the way. Oh, and, mustn't forget - patience - we need it by the bucket-load!

    I hope your PMR 'journey' continues to go smoothly.

  • Thank you so much Celtic. I had a very bad night last night, drenching sweats kept me awake, so i have taken care of myself today

  • Obrien, you're very welcome. With regard to the sweats, hopefully it is just down to your present, probably fairly high steroid dose, rather than flaring inflammation. If you drink coffee, or any other caffeinated drinks, avoiding them, especially later in the day can help. I switched to decaf tea and just a very occasional decaf cappucino which I really enjoy when out for a meal. Also avoid spicy meals wherever possible. Meanwhile, catnap during the day as much as possible to make up for the bad nights. Hope that might help, and here's to a better night tonight!

  • Thank you so much

  • What Celtic said!!!!! All of it - and over again!

  • Also pamper yourself and take it easy. PMR is an illness, the pred does not make you fit again, it just suppresses the inflammation. Life changes with PMR which can have its advantages in that you can try things out you never thought of doing before. I have learnt an awful lot about nutrition and become a total nerd.

  • I think that's where i have gone wrong with my thinking that pred would make me fit again. I now know differently, but thank the Lord for it. Today i have felt really washed out i had a very bad night through drenching sweats, so i have taken it easy today. I am learning so much from this site already. Brilliant

  • You may be starting a flare of the activity of the real illness - do keep an eye on things. It isn't just reducing that can do it - the illness may become more active while you are at the same dose.

  • Thank you i will. I have a dr appointment next week

  • This so interesting PMRpro, I didn't know that could be a possibility. I think that is exactly what has been happening to me recently. In fact yesterday after taking my usual dose of 15 mg in the morning I thought this is just not enough for the pain and stiffness I have, so took 2 mg more after lunch, making a total of 17mg. Almost back to where I started 15 months ago. Got my difficult family week starting tomorrow!

    Endorse everything o' brien 23 has said about all you amazingly helpful people out there. Thank you so much.

  • Hello PMRpro Your reply to my query has been spot. I was having drenching sweats last weekand have been diagnosed with a chest infection. The two together have made me feel really poorly. The chest infection has aggravated my PMR, you were so right about there being an underlining cause for the sweats. Onwards and upwards and again many thanks for all the support.

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