I’m just looking for a bit of advice as I’m all over the place just now. I have posted before re advice on tapering as I reduced from 15mgs of Pred starting 11 months ago and got down to 3mgs. I then experienced quite a bad flare up and increased for two weeks and back down to 4mgs. Three week ago I received tragic news during the night to inform me my son had died . Within about a hour of this news the pain mainly in my right thigh and shoulders was severe. I was advised to increase from 4mgs to 7mg which has helped a bit. Still have done niggling pains in my groins and thigh, but does settle. I’m now not sure where to go now. I’m also really bad indigestion which is constant. Doubled up on omeprazole and peptic but nothings working.
Thanks
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Nursing56
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So sorry to hear about your son.. my sincere condolences.
Our usual advice for a flare is to add 5mg for 7-10days [although you can stay 14 days with impacting in drop back down].
Not sure how long you’ve been at 7mg… but doesn’t sound as if isn’t quite enough… so may be up to 10mg for 5-7 days - and then you might be able to drop back down to 7.5mg. Stay there for another week , and see how you are. But as you are less than a year into PMR - and you will still be under a lot of stress re your loss, and your adrenals may well be struggling, I’d go no lower than that for now.
From then, a much slower taper using one of the tapering plans we talk about and only 0.5mg a time. As I said there really is no rush.
Digestive issues may well be adrenals struggling , but also stress.
Thank you. I’ve been on 7mgs for three weeks now, and was going to try and drop down to 5mgs, but sounds like that might be wrong. I’m normally a very motivated person, but struggling a lot just now to be honest
No wonder you are struggling - and please don’t beat yourself up about it.
Both PMRpro and I have dealt with bereavement during our respective PMR and GCA and know how difficult it can be, and how long it can affect both you and your illness. So take all the time you need, and look after yourself, as I said your PMR is still very much with you, so just let that sit there and don’t think about reducing for some time. As also said, your adrenals will be needing all the help they can get at this stressful time… so give them chance to also catch up.
All the best.. and we are always here when you need us.🌸
I'm so sorry - that is something no parent should ever have to deal with.
Of COURSE you are struggling - and that immediate flare shows just how much things like that affect the immune system. I go on about it all the time. When my husband was dying I needed over 15mg to be able to function and it wasn't a sudden shock, it had been building for a few years. And my biggest flare was a few months later, just as I thought I should be settling down.
I would have gone to 9mg - our usual flare protocol. And I wouldn't drop back to the 7mg straight away - you are in adrenal insufficiency territory here and your body isn't responding with extra cortisol to help deal with this emotional shock.
Is it only indigestion? Ask the GP for something different and to be checked out for anything cardiac - just in case. There are other reasons for central chest pain besides indigestion.
It will all ease, but it won't be quick and there really isn't any rush to taper. And do seek bereavement counselling. I thought I could manage it all on my own, it was expected, it was a blessed release and there had been no shocks - but the counselling helped such a lot.
Thank you so much. It’s all a big of a nightmare to be honest .
I went to the Gp this morning. She’s changed my omeprazole to another form and also gave me antacids. Plans to refer me to gastro if things don’t settle. I was offered diazepam or night sedation, but declined.
I’ve been on 7mgs of pred for three weeks, other than slight discomfort I’m ok. Not sure if it’s because my minds racing all the time, that I’m not as aware of the pain. Should I stick at this dose.
If it is enough, yes, I wouldn't risk trying to taper until all the immediate kerfuffle has calmed down. Of course it is a nightmare - but not one you are going to wake up from and it all be just a bad dream.
Was it an accident or just happened without any apparent cause or warning? Is it all being very complicated and taking ages to deal with?
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