[markjholdenParticipant]

i just wanted to raise awareness of the ups and downs of dexamethasone. I take 40mg on Friday mornings. By lunchtime I feel I can do anything, I don’t sleep a wink on Friday nights but once I resigned myself to this I find it is good catching up time for TV, emails etc just keep away from Amazon and ebay!

saturday is my true Dex day, for some reason old things seem to happen. Saturday night is a bit hit and miss sleep wise but it is the downer on Sunday and Monday I wanted to warn you about.

i know we are told a million times we are all different but the change in mood is so dramatic as to be frightening.  All the positive things disappear and I find myself looking at survival rates and thinking very negative thoughts.

This ends in an equally dramatic way Monday/Tuesday when things get back on an even keel.

Just be aware that you may need to develop a coping strategy for you down days.

you are not alone.

Mark

[markjholdenParticipant]

Sorry in paragraph 2 I meant good things happen, not old things.

m

[andygParticipant]

Hi Mark.

Dex is an evil drug and affects us all a little differently the ups, downs and sleepless nights are well documented. I take 40 mg every Tuesday morning. I’ve been taking Dex for over five years now and still get caught out being a bit short fused, cold callers be aware, on my down days even though I tell myself it’s the Dex!

Every day is a gift.

Andy

[lharrodParticipant]

Hi, my husband has recently been diagnosed with Myleoma and is currently taking the combination of medication known as CDT.  Recently, it has come to my attention that his memory is really bad, as he cannot remember what he wants to talk to me about and his moods vary.  He takes the dexa tablets for four days at a time and then comes off them for a bit and then goes back on them for a four day period.  I understand that mood swings and irritability are possible side effects of dexa but has anyone experienced memory issues and confusion as it is concerning me at present.  Any information would be greatly appreciated.  Regards Lisa

[greg777Participant]

Hi Lisa,

I didn’t have memory issues but I would definitely say cognitive function was impaired. I would sometimes start conversations and then by the end forget why I started them. All that stopped when I stopped taking Dex so hopefully that will be the same for your husband.

All the best,

Greg

[lharrodParticipant]

Hi Greg

Thank you for your response.  Yes, he has the same problem, will start a conversation and completely forget what he is going to say.  I really feel for him but at least I know it is the medication.  It is also the mood swings and the highs and lows of taking dexa which is difficult to manage.  Did you suffer from this and if so, do you have any suggestions of how managed this yourself.  Regards Lisa

[greg777Participant]

Hi Lisa,

I definitely remember the euphoric moments and the inability to sleep. I don’t remember the down times so much, but my wife tells me I could be incredibly foul at times. I think what happens is that the steroids accentuate emotions that are already there. So if you are feeling happy, you get a sense of euphoria, if you feel sad you get very down and if you feel angry, a temper can really soar. The best piece of advice I could give is to try to recognise any patterns – so is there a particular point in the cycle when the moods seem to be worse? Then you can plan for when things might be tough. And for me, everything returned to normal once I stopped the Dex, so I would try to see this as only temporary if you can. But I know it is tough when you are in the middle of it, and I think probably hardest when you are witnessing it rather than experiencing it, so I am wishing you all the very best.

Greg

[rob47Participant]

Hi all,

Interesting reading your posts. I can identify with the ups and downs of taking Dex. I am just coming to the end of my second VTD  28 day cycle, so I am still getting use to things but I can see a pattern emerging with Dex and the treatment. I take Dex eight times in the first two weeks of the cycle with four injections of Velcade. My mood has been fine and in the first two weeks  sometimes it is almost like a mild high, but the problem I have been having is the insomnia,  feeling tired  and lying awake at night but not being able to sleep. I know this is the medicines as my sleep improves considerably by the middle of the third week.

In terms of moods I think the 2-3 days after coming off the dex I feel weak and grouchy, this normally the time I have my appointment with the consultant, so they generally see me at my worst.

I guess we all react differently to the treatment as individuals. I have found keeping a diary helpful as it has helped me to understand patterns and degree of side effects, and I can help my family understand when I might me at my best or worst.

All the best

Rob

[lynnesParticipant]

It’s good to read your experiences with Dexamethasone.  I have a Velcade injection once a week and take 40mg of Dex that same evening.  This gives me a boost on a Saturday and I can go shopping – slowly but nevertheless I have more energy than the rest of the week.  However, by Sunday/Monday I am in a really dark place which I gradually return from just in time to start the whole cycle again.  It is good to know that sanity returns when Dex is discontinued.

[lynnesParticipant]

At my consultant appointment a month ago I described my mood swings and the Dex dose was halved to 20mg.  I was told that the 40mg dose could not be tolerated for too long by many patients.  Since then I still have low mood swings two days after taking them, but not as bad as before.  I also try to get out of the house on a Monday to stop myself sitting feeling sorry for myself.  I discovered at today’s consultant appointment that my flabby arms were also a side effect of the steroids (loss of muscle tone) and not a sudden onset of bat wings!   Am starting my fourth VTD cycle next Friday – told that I have a further two after that.

[taffdParticipant]

I take duloxetine, an anti-depressant, and have done for some years. Prescribed for chronic pain as well as mild depression. With me, it’s impossible to hold negative thoughts for more than a few seconds. Added to my personality, I remain fairly laid back with no mood swings.

I too was on CTD and took 40 mg dex days 1-4 and 12-15. I didn’t get the ups and downs that others speak of, though I did get swollen legs and feet and was and am permanently confused/befuddled. My memory is atrocious but then again, it’s always been bad. Fatigue was and is a problem.

I’ve been in complete response since February, when I finished chemo. Unfortunately, I got colitis and sepsis and had to have my sigmoid colon removed and now I’ve got 2 bags.

I did, when on dex, get angry a couple of times over nothing but it was gone in seconds and I was apologising without a break in conversation. And it was literally a couple of times. As soon as I realised it was the dex making me angry, I didn’t let it happen again.

Also have fairly severe neuropathy, though I can’t say which drug was responsible for that. I remain on morphine – 20 mg MST twice a day and oramorph to suit, usually 10 ml twice a day but sometimes more. Can’t sleep without it.

Still, ent ded yet, so it’s all good.

Regards

Taff

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