I have been on 3mg pred for about 2 months, as well as TCZ. My son is getting married next Saturday at the other end of the country, and I have had a lot of extra stress form my parents who have mild dementia and are difficult. We are picking them up o the way, as well as other family. I have also been trying to organise their upcoming 90th birthday celebration. Last week I started up another AI disease, which has really stressed me. This week I have dealt with it really badly: I have dealt with 4 1/2 years of PMR and 3 1/2 of GCA fairly philosophically, but I have become very anxious. I have hardly slept this week, and in the morning s have been a total trembling wreck. During the day I have gradually put myself back together, only to be wrecked gain by morning - palpitations, shivering with cold, dizziness, trembly and extremely anxious, etc. Sleeping tablets have not helped. I though this was me being a wuss because of all the extra stress, but it has occurred to me just now that this may well be adrenal sufficiency. I felt so bad that I have taken 2mg extra pred, ie a total of 5mg. This is e/c so probably won't do much for a few hours.
Have I done the right thing? Should I do the same tomorrow? How can I best prepare to make it to the wedding? Sorry for the rambling, but my head is not functioning properly. So grateful that you are here.
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I think in your current situation I'd treat it more like a flare [which may well cause anyway if you don't do something radical]- so up to 7 or 8mg for a week or so [long enough to get back home from wedding]. 14 days in total is okay [but no more or you'll have to come down more slowly]- then you can drop back down to 4mg or even 5mg.
That will help PMR/GCA and adrenals. Then stay put on dose for 2-3 months to let adrenals catch up.
I agree with DL, not that I’m any authority but that’s how I would do it when I had rubbish adrenals. Your symptoms sound like low cortisol and your current whammies are big and not about to go away in a day or so. It might be an idea to mention this your doctor and perhaps get some non-coated Pred in case you need a hit of Pred to halt an adrenal crisis, especially if these symptoms clear up once the Pred gets into your system. E/C Pred isn’t quick enough if you are ever in trouble again. They might even refer you to an Endo or get a morning cortisol or Synacthen test organised.
Do me a favour and take the megaphone off the bit of you that’s calling you a wuss! 🙂
😆I have turned off my megaphone - been in bed nearly all day.
Thanks for your advice. I have some non-coated 1mg pred tablets for splitting purposes, but I wouldn't know how much to take in impending crisis. If tomorrow is another nightmare, I'll do an e-consult.
Agree with Snazzy, you are not a wuss. I can’t imagine driving as far as that, picking up difficult dementia parents and other family plus the wedding. I have nothing to add but to wish you the best.
I think you are right enough that it is adrenal insufficiency - and as a result you are unable to deal with the added stresses you are being faced with which is perfectly understandable. I too would treat it as a flare if it were me - and that would take you to well after the wedding. Then you need to see how things turn out with the added illness and your parents celebration and their mental health. That is unlikely to improve - and you will probably experience more stress there in the future.
And as for being a wuss??? For goodness sake - some people who don't have adrenal insufficiency would be quailing at what you are dealing with!!
Thanks. Yes, the parents have already been tricky for 66 years and definitley getting trickier because they refuse any help from outside.
To be fair, the wuss thing came from my daftly not recognising the symptoms of adrenal insufficiency until this morning. that would have required being on the ball mentally.
To be fair when one is in a bad place physically or mentally it is easy to miss. Been there done that, even after bleating on here about adrenal matters.
The experts have spoken. I can only applaud you for the way you have coped so far with all that has been thrown at you. A wuss - certainly not. Do as they say and hopefully you can really enjoy the wedding and will feel more able to cope wit h life. My best wishes
I would certainly take more prednisone.I didn't before my daughter's wedding and I had a flare right after it.Just got caught up with helping when she needed me.
That's way more than your average person has to deal with, and that's without any condition on top. You need to make it all work for you so as the advice is on here, take the extra pred and revisit everything when things have calmed down. Try and enjoy your sons wedding if you can. I totally understand difficult parents, and refusing help at that age is tricky at best.
You need to put you first right now to get through it all. And after the wedding regroup and try and take some time for you. Big hug over here!
Nothing really to add, it's all been said already. Certainly forget the "Wauss" bit, most people would quail at what you have coming up let alone having your conditions on top. Take the Pred, enjoy/get through/manage the next few days and reassess when you are back home and life is getting back to normal. Take care and I hope that you are able, not just to manage the next few days, but also enjoy your son's wedding.
Yes, the experts have said it all and it just falls to us to say that this little community of people you have never actually met are all right there with you and cheering you on. Enjoy the wedding, try to sit back and watch, rather than doing all the hard work yourself. There are no prizes for being a martyr. Don't be embarrassed about saying “No, I'm sorry but I can't do that, I'm not well.” Actually, ham it up a little and keep telling them you're not well and maybe they will lighten the load a bit. Have you got one of those medical alert bracelets. I have a bright red TAKING STEROIDS one I bought on Amazon. Wear short sleeves and wave that under people's noses! Come back and tell us about the wedding and how upping the dose went .
I don't know if this will help - as in 'you're not alone' - I am the same age as you and have GCA - tapered down to 5mg and at present going down to 4.5mg. I too have had some very strange episodes in the last few months which i have put down to my adrenals but i really dont know! I have been going through a tremendous amount of stress this last year - as in Divorce, moving and many other things and like you, the stress of it all has impacted greatly on my health, the 'palpitations, shivering with cold, dizziness, trembly and extremely anxious, etc.' are exactly the same symptons as I am having so I cant come up with solutions or explanations for you and my problems are very different to yours, but I understand exactly how you are feeling. It is sometimes frightening - especially the palpitations and when i get dizzy with it - and the days when i am so tired and exhausted that i just 'plod' through the day but I think Ive learnt to 'listen to my body' and when its telling me i just can't do any more, i give in to it now.
I wish you well for your sons wedding and hope that you can enjoy it - as I'm sure you will - and remember - you're not alone.
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