When did you start to feel vaguely well?

To give myself something to look forward to while I wait out my latest pred reduction phase, I would be interested to hear when people who started on 60mg then moved to 40mg then eventually 20mg prednisolone started to feel a little better, whether from the symptoms of GCA or from the side effects. 

Do you remember a sudden shift in how you were feeling? Was it more gradual? Was there a particular dosage or time into each phase of steroid treatment that seemed easier? Was it only when you were well below 10mg or lower?

Was it an improvement overall, or for example to the brain fog, being able to move more, think straight, not think about food so much, or taking on a little more each day?

Thank you. All experiences very welcome.  

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  • Hi Cloudgazer6,

    What a good question! 

    Thought I go through my notes this afternoon, as its wet and can't get in the garden, and found I forgotten about lots of things! 

    Hands up, I admit my story is a bit extreme, but here goes......

    It took my first six months to come to terms with losing sight in one eye, as well as going through the horrible side effects of Pred we all know, sleeplessness, hamster lookalike, rashes, sore mouth etc, plus I forgotten how much pain I was still in, despite the Pred, and absolutely kna****ed most the time. 

    Then, my husband went into hospital, which added to stress, followed by a chest infection (me) which lasted about 4 months in total. This was about a year after diagnosis and down to about 12mg .

    We then had another round of hubby in hospital, unfortunately being diagnosed with cancer, and eventually dying a few weeks later, so that really knocked everything into a cocked hat. Although by then I think I felt physically ok from GCA , but life was difficult so I can't really say everything was on a even keel. I was still shattered lots of the time, but mainly due to being a carer, and then being bereaved. Those few months culminated in me having to go back up to 20 mg and then back up to 25mg, but not because of GCA, but stress. 

    I suppose I really started feeling like normal (whatever that might be) when I got down to about 10mg and  2 years in, 6 months after my husband died. That was April 2014. I then decided I was well enough to visit my daughter in New Zealand, so booked flights for that Christmas. And, that was my best move, by the time I went, I was down to 7mg, and when I got back home it really boosted my confidence, that at 67, and with a dodgy knee I could fly half way round the world (literally) and back on my own! 

    I won't say everything has been rosy since then, I did go through another quite prolonged period (about a year) of being fatigued again, but I think that was my adrenal glands being particularly lazy. Life is much better now, and hopefully off the Pred within a few weeks, but even then we know the body still takes time to adjust.

    As I said, I had other major things happening during GCA, but then so do others, nobody has a easy journey. 

    Hope I haven't made you feel as if it never ends. It does, but I think you need to be mindful of the old adage - take each day as it comes. I'm an optimist, and always hope tomorrow's going to be a better day. Usually it is, but sometimes it not! But you have to keep thinking it's going to be. 

    Take care. And may your tomorrow be better! Mine is, I'm going out to lunch! 

  • Dear DorsetLady

    Thank you so much - this is so helpful. Thank you for taking so much time and thought over your answer and for going back over your notes. I hope it wasn't too difficult looking back over what sounds like an extremely stressful and sad time for you. It was almost as if each subsequent stressful event was competing with the next one. You must have been exhausted. 

    There is so much in what you have written that I find optimistic, and in particular that you remember feeling physically OK, so I will look forward to that. It's good to know that being on 10mg was something of a turning point, and although at the moment a time frame of 2 years seems a long way off it's really useful to have that as a marker. I take great encouragement too from the fact that you were able to travel to NZ. I am definitely taking each day very slowly at the moment, and have a notebook where I'm writing down the things I'm going to do when I'm feeling better. There is an emerging list of destinations, from having an elegant afternoon tea here in the UK to visiting Sicily, San Francisco and beyond. I think I may have been watching too many daytime TV travel shows but they serve a very useful part in this illness process. 

    Thank you very much. 

  • Hi again Cloudgazer6,

    Nice words, thank you. I don't think I really had time to think about what I was going through as I went through it, maybe that's how the brain protects you. 

    Despite my husband's ill health in his latter years, every day was full of laughter, and so many people said to me afterwards how much they enjoyed his funeral for that was full of laughter as well. Most days when I think about him, or I talk to the children we laugh about the good times we had as a family.

    I've just watch the 1st programme on the Invictus Games, my husband was in the Army for 22 years and we've always supported injured service personnel, and I realised, if I needed to be reminded, what a blessed life I've led. GCA is nothing compared to what those guys and gals are going through. 

  • Thank you sharing your journey with us. You lift me up. Take care x

  • Yes DorsetLady it's such a good idea to document your symptoms,  Prednisone doses, tapering, etc.   I do since the GCA but didn't with the PMR, probably because that journey was so uneventful,  but there are some things I wish I had documented now.

    Cheers 

  • Hi,

    I started making little notes about things when my husband was ill, really because neither he nor I could remember everything, and when you go on doctors appointments you feel an idiot if you can't answer their questions. I was still working at the time, and with lots going on its easy to forget what happened when, and he did have a number of issues going on at the same time. So it was just natural to do the same for me. You do forget things yourself, as I discovered when I looked through my jottings to answer Cloudgazer's question. And, it sometimes useful as a reference when others ask questions on here, but it's never going to win a Nobel prize for literature! 

    Take care.

  • I've been through it 3 times (flare, high dose, begin taper), and it always seems to me that somewhere between 12.5 and 10mg. I feel almost normal. It has always been gradual, and along with the improved feeling, the visible symptoms begin to diminish.  Tapering is much slower after that, but things only get better from there.

  • Thanks. That's very helpful to know. Could I ask - did you have to go right back up to 60mg with the flares before reducing again? 

  • I was diagnosed last July with GCA after a year of PMR.  I was down to 17.5 in February and remember thinking,  ok, I think the worst is over.  Sadly it wasn't and I've been on a roller coaster since probably because I was the one managing my GCA (long story). However I will be seeing a GCA specialist soon and hope to get sorted out.  I wish you all the best with your tapering! 

    Cheers 

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