[DaiCroParticipant]

I would be interested to know how those of us on regular [i]DexDays[/i] manage their side-effects.

Up to now I have followed instructions by taking my Dex early (with breakfast meds) and then sitting back and waiting for the Dex to kick in. This usually means a couple of hours grace followed by 12 hours or so of looking like a boiled crab and feeling like a boiled crab in a very hot sauna. My normal routine means changing tops on a regular basis due to extreme sweating… about 5 to 6 tops in a 12 hour period. Doing anything physical (and I mean anything) increases this total and can sometimes climb from crab to lobster.

I have always stuck to the same time on the same day but recently (due to an infection) I was forced to change my [i]DexDay[/i] and I asked my consultant should I go back to my normal day or stay with the new one she said (in effect) 'its your life… as long as you take it once a week you can take it on which ever day suits your lifestyle or your commitments'.

This was good news to me. So I thought that I would experiment. So last week I set my alarm for 5am and took my Dex… which meant that I was cool, calm and collected by 9pm that evening. So this morning I woke at 2am and had a bowl of cereal… I then took my Dex at 2:15am. I went back to sleep by 3am and slept through to 8am. I woke up in a swimming pool. I peeled back my duvet and it looked like a crime scene with a perfect outline of my body on the sheet (looking as if Edith, my Granddaughter had coloured in the outline without crossing the lines… she's really good at that). I was soaked but felt quite good. I changed at 8am and again just now (11.15am) but hopefully I will be free of the [i]DexDay [/i]grip by 5pm. We will see.

Do you have any [i]DexDay Tm[/i] management tips? Or do you sail through the day unhindered by side-efects?

Just wondering.;-)

Dai.

[EvaParticipant]

Hi Dai,
Eva here. I really understand what you're going through.
I find emails much more exhausting than speaking to someone. Any chance we could have a chat?
I've got a phone package that enables free UK calls at all times. If this is a possibilty for you, then please email me on evayouren@lineone.net

Best,
Eva

[KeithH17Participant]

Hi Dai,I think you already know about my Dex but here's where I am at the moment. I take 40mg for 4 days then 20mg on the 5th day followed by 3 days off before starting allover again until the end of the cycle. I take them after my breakfast serial at around 10pm each morning and take the Rev at 9pm each evening. During the first cycle I sweated a lot but strangely enough after starting the 2nd on Tuesday it's the best I've felt since starting this new treatment although still early days. The acid test is not when I'm taking them but when I stop so the jury is still out and this coming Sunday should be interesting.I don't feel as tired as I have been and I'm wondering wether my body is starting to become accustomed to the treatment. My face and upper torso is bright red in the mornings but that has always been the case with Dex and isn't really a problem as before this I was looking like death warmed up so it's an improvement on that. My bowels have also seemed to have settled although I still get fluctuations between Diarrhoea and Constipation but not as severe as it was.All in all I'm not too bad and if it gets no worse than this then I can tolerate it but I also realise that it's very early days so I'll be vigilant all the way through.Low platelets are a problem at the moment and still falling but they tell me this is to be expected with Rev but my Neuts are picking up really well at the last count Plts(54) Neuts(4.2).

Hope it gets better for you too Dai.

Take care.

Keith.

[jmsmythParticipant]

Hi Dai
We are new to the Dex. Frank is starting the 3rd cycle tomorrow. He is ok while taking the Dex (touch wood -has been first 2 cycles). His problems starts when he stops. First cycle he was off the planet for about 4 days. On the second cycle consultant suggested that he was weaned off it – that did not work as he was off the planet for much longer this time. So now he is back to cold turkey. He hasn't had any sweats. I hope things settle down for you and start to feel better.
Love Jean

[eveParticipant]

Hi Dai
I can only comment about when Slim was on CTD,then VCD.
No outward effect at all,never even put on weight,but as you know taking large doses did disguise infection,and made him think he new best,insisting he was going home,when he was on his way to ITU!!!
Once I new how they effected him,I was able to relieve some of his side effects,by explaining it was the Dex that was causing him to be argumentative and one thing I would not let him do was drive.Eve

[EvaParticipant]

Dear Dai,
During my last encounter with dex I had the dose spread out over a number of days, with a tapering off for the last two days.
Best,
Eva

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