Hi there and thanks for posting

I am very sorry to hear about your situation and your struggle to sleep whilst taking steroids.

This isn't unusual i'm afraid but many people find taking the steroids early in the morning after breakfast (if you aren't doing this already) can be really helpful.

If you are able to do get some daily exercise and try and minimise tea, coffee and chocolate in the evening that may also keep you awake. There is something called sleep hygiene that can improve sleep. This includes a precise bedtime routine of going to bed at same time in a cool and comfortable room with low lit lighting, relaxing your body and mind by listening to music or a podcast, reading something light and taking a warm bath and so on. You can read more about this and more on the NHS every mind matters web pages.

Steroids can affect people in different ways and it is important to let your doctor or specialist know how this is impacting your everyday life so they can also advise and support you.

I hope this helps but do get back in touch if needed. You are also very welcome to call the helpline on 0808 800 4040, weekdays 9-5 if you prefer.

Wishing you all the best and hope you can get some sleep very soon.

Take care

Naomi

Hi Naomi,

Many thanks for your reply. I have tried many of the things you suggest apart from a hot bath which I think I’ll try this evening. I’m virtually getting zero sleep at the moment which has now made me extremely anxious which only makes things worse. I speak to my consultant Tuesday and will go through all my problems with him and see what he suggests. I may well use the helpline number as I’m sure just talking to someone about this issue will help with my mental health.

Kind regards, Mart1957

Hi April-showery,,

Many thanks for for your message. I started second line with Dexamethasone, Velcade and Belantamab infusion for which I’m given every 5 weeks. I was taken off Velcade after 2 injections as I suffer from peripheral neuropathy and the Velcade made it a whole lot worse. I started off only getting a few hours sleep with the medication but it suddenly got a whole lot worse where I virtually can’t sleep at all and now its causing me to suffer from anxiety.

This is the first time I’ve heard of body scans and after having looked it up there’s somebody who lives local to me runs sessions using this technique. I will definitely be getting in touch to see if I can join to her courses. Also we have a local cancer centre that run Yoga and various other relaxation courses so I will go and see them too.

Thank you again for the information you have sent me it has given me some hope.

Best wishes, Mart1957