Dexamethasone dose and duration

Hi Pati

You need to be careful with the steroid dose so please talk to your wife's CNS about the dosage. 

My husband was on dexamethasone during his chemo/radiotherapy and the CNS didn't want to reduce his 2mg dose until the treatment was complete and commented that he would need to be weaned off them slowly. He however took things into his own hands a couple of weeks before the end of the treatment cycle. He decided he didn't like the steroids and was binning them when I gave them to him. When the CNS found out she lectured him on the dangers of doing that. 

He got lucky and there was no lasting harm done.

I'm sure others will be along with their experience shortly. You can also reach out via the Ask An Expert section or give the helpline a call.

hope this has been helpful

love n hugs

Wee Me xx

Hi pati

So I had dexamethasone for a long time after my radiotherapy I asked if I could start reducing my dosage as I had put on lots of weight. At the time they said No! It's because dex is an anti inflammatory. They described it as after radiotherapy you get left with a bigger mass than before! (Think Picking a scab) so the dex helps inflammation reduce. Also im not sure if it's the same for you but I was very un mobile after radiotherapy so the dexamethasone made a huge difference in my strength. When they decided to reduce it almost instantly my leg weakness returned. In time I came off them completely and my weight and strength returned to normal 

Hope this helps

Thank you Wee Me.Your feedback is very helpful.I always read your comments to so many enquiries.You really are helping so many of us in trying to find answers..I salute you!

Pati

Thank you Vicki for your feedback 

Appreciated

Thank you for the feedback I found this really good to know information.  My daughter is on your journey 

In my case, I went from 2mg to 1mg as soon as radiation and chemo was over (they finished at the same time for me).  A couple weeks later, I dropped to 1 mg every other day and did that for an addition 10 days.  Then I went to 0 dex, without issue.  I am still taking maintenance TMZ 5 days out of 28 but otherwise not taking any meds.  I had a relatively successful surgery, close to 100% resection with fairly mild side effects (a little vision loss and memory issues) and I am in my 40s.

The process of lowering the dex will depend on your situation of course but that was my experience.

She will receive a dose of Dexamethasone with her Chemotherapy, I am on 4mg plus atropine when I get my infusion, When I was first diagnosed I was on 16mg and that took 5 months to slowly reduce the dose before I stopped taking it daily.

Just wanted to say I have found the opposite to the dex, I've actually lost weight since been on, when I was on a higher dosage the weight fell off. Only now that I'm on a lower dosage I've found the weight has come back slight, and able to maintain. Suppose they work in different ways in different people.