update replies

Thank you everyone for your quick replies, as always they really helped me think more clearly. I guess I am probably trying to do too much, I am still working and getting frustrated that I cant keep on top of things as fast as I used too. I also have lung disease which means I get a lot of chest infections, just finished 2 weeks anti bio, guess I have just let things get me down. When I heard only solution was to up steriods it got me down abit ! Anywho New Year new start I will just have to find a way that works for me. Thank you again for all your help I will keep checking in, who knows one day soon I may have good news to share and be able to give advice to someone else!

thanks again guys x

9 Replies

  • Hi Isabella,

    Glad to hear you're a bit more upbeat. This illness really gets you down at times.

    I think the biggest obstacle is actually coming to terms with it - once you've done that you can begin to take control of it, instead of it controlling you.

    Lots of people have other health issues as well, like yourself, which just adds to the pressure. They have found a way to cope, and so will you! You just have to learn to delegate a bit more, and not try and be superwoman. Do what you can, and then say - no more- and have a rest.

    PMR and/or GCA is a life changer, but that doesn't mean you still can't enjoy it! Albeit Moderated - slightly!

    We shall look forward to your good news, and your advice. Take care.

  • Anything you post is useful to others - even when you post to have a moan or a whinge or simply to let off steam because we know what you are on about and the family/friends don't.

    There are plenty who have felt just like you when they have had to increase the dose again and have thought they are the only ones it has happened to. We have all been there at some point. That doesn't dismiss your experience - it is to say how important it is to post at times about "failure". It isn't failure at all - but part of the process of accepting the "new normal". It was a long time before I posted about my bad times - I didn't need help as such, I knew enough about the whole thing to know what was going on. But then I realised it made me appear as if I had no problems - so others didn't think I knew the sh*%%^ side of PMR and pred. Which I do - honestly!

  • I've been on Prednisone now for 5 yrs. at Christmas I had one of my worse flare ups since I've started. Started at 15, reduced over the years to around 5 or below for at least 31/2. I was on 4 almost 3 when it happened, I had to go all the way up to 8 to feel better. Yes it is a slap in the face, a kick in the stomach, so damn disappointing, but everyone here says, brush yourself off, and start all over again! It's not a race, it's about feeling better! Hang in there, we know all about it!💕💞

  • Exactly, and I've heard that it is most likely you can reduce much more quickly from that dose than the original taper, as long as you feel well enough. And that might be possible for you - after all, Christmas won't be back for months!

  • Here's the thing, I am now at 7mg. My Rumy wants me here for a month, then 6 for a month. I am going on a week vacation to St. Lucia in 2 weeks. Coming home then 4 days later have one eye done, cadarac surgery, then 2 weeks the other. The 2nd of March driving 2,000 miles to Arizona! I'm thinking I should stay on 7 until I see my Rumy the end of Feb. he didn't know I was planning eye surgery!

  • Oh yes under those circumstances you do need to keep a stable dose and not reduce. But 7 isn't bad, really. I do understand how frustrating it is to have got even lower and had to go up. Have a lovely time in St Lucia, get lots of strength stored up for those surgeries! ;)

  • Thank you, and yes I'm glad we are all in agreement here. I better stay on 7 until I get to Arizona then we can talk then what to do💕🌴🌴🌴😎

  • What your rheumy wants has little to do with it - it is what your body wants/needs. With all you are expecting of it I think remaining at 7mg is the least you should do!

  • Yes, you are right! Here to stay awhile💕💕

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