Dexamethasone

Hi there,

The general rule of thumb is to get the dose down to whatever level controls symptoms. But...you mustn't reduce too quickly i.e. taper it down. It looks a while to get my wife down from 2mg to 500mcg but we got there in the end. Even if that meant having to take 2mg every other day and 1 mg on the alternate days rather than stepping right down to 1mg/day. 

We go through little periods where I step the dose back up to 1mg or 2mg when her head is bad and she's really struggling with mobility and confusion. Once it's passed then we slowly come down again. 

The lack of patience seems to be common and is so similar to elderly people with dementia and the way they can become angry at little things. In our case the steroids actually help with this I think. 

With regards whether it's a high dose then it's not especially high but these steroids can take their toll on bones and muscles after long periods so as I say best to keep low if possible.

All the best, it is a really difficult balance.

Chris 

HI JustLooking

During G's GBM journey he was prescribed various levels of Dex depending on the severity of the symptoms. 2 mg seemed to be his optimum maintenance dose latterly. For a short time we were up at 16 mg so in comparison 2mg is low but as Chris says its about finding the lowest dose possible that still maintains the status quo. Dex does impact moods and G was very grouchy especially on the high the higher doses.

We also had a long period where he didn't need it at all. It was only re-introduced at the end of Feb this year when new tumours began to impact him. There was over 2 years where all he was taking was Keppra.

My rule of thumb was always if in doubt ask the medical team. Better to check for peace of mind if nothing else so if you are concerned about your mum's symptoms or even small changes, report those concerns. We're not the experts but we can spot things that the experts don't necessarily see because they only see the person for a few minutes at each appointment.

Sending you a huge virtual hug and lots of positive energy. Stay strong

love n hugs

Wee Me xx

Hi Chris 

Thanks for your reply. I think I will speak to the oncology team this week about reducing it back down a little whilst she is feeling well. I always thought the steroids seemed to help with mood up until now which does make me worry about the tumour itself. My mum had a scan a couple of days ago which is the first one since diagnosis.. I am praying for some good news. 
Take care x 

Hi Wee Me 

I hope you are taking care and being gentle on yourself after all you have been through. Thanks so much for the reply, sometimes it just helps to hear that others have experienced similar symptoms if nothing else. I will speak to the oncology team this week. Take care x 

I'm trying to. I'm taking each day as it comes and taking things slowly till I get my head round things. 

A little reassurance goes a long way. That's how I found this community in the first place. Feels like a lifetime ago now but in Oct 2020 I felt quite overwhelmed and lost . This community were there to hold my hand and to show love and support whenever it was needed. I get how worrying and scary this journey is so if I can hold someone else's hand and help them through a tough day that helps me cope as much as them. (if that makes any sense whatsoever!)

love n hugs

Wee Me xx

That makes perfect sense! I don’t know what I would do without this support network. Sending lots of love and strength to you and your family xx 

Hey JustLooking 

My dad had quite severe reactions to the steroids so we would lower his dose as soon as he started feeling better (obviously with agreement from the neuros). He would be quite manic and obsessive on the higher doses. I can’t be sure on his exact doses though, I’m sorry! 

Xxx