Body in Wrong Time Zone?

[Geoff]

Some times I have periods where i can't sleep at night even though I may feel tired. This often seems to occur in early hours of day when I should be sleeping. Sometimes when I feel too exhausted to do much I can nap real well during the day. Some times not and I try drag through the day till I fall asleep reading or trying to watch TV or reach point where i can nap. Maybe these naps make it harder to sleep through the night but I find my periods of feeling awake and energetic enough to do much often only last a couple or hours or so. I don't have any regular pattern where I feel more energetic but think some of variations in my energy levels are related to my meds, other things in my body cycles, sleep patterns, etc. .

Yes DRZ I recognise the pattern oh so well! Because at first I was passed fit to work and needed the dosh, I found that taking a sleeping tablet was the best way for me to get into a reasonable cycle of life. By the end of the day when I was working 5 days a week I was quite tired and yet relied on the tablet as I was afraid of trying to drive to work in a sopophoric state. Before DX I did fall asleep at work and was gently woken by my boss to go home!! The fact that I was 56 probably saved me as he didnt think I had been out all night on the booze!!
After being off work all last year I have resumed but find 2 days all I can cope with. I am tapering my sleeping tablet and feeling better as a result. Its all a question of Balance as someone was heard to say....

[Geoff]

Hi Geoff,
why is your doc thinking that you are likely to flare again ? what are his indications ?
it there something that can be done to prevent it ?

Hi Alysia,
It was my PR3 indicator which Dr Jayne said was higher than he would have liked to see at 21 months into my 2 year cycle. He said I was developing a reaction to RTX and therefore more likely to flare. In a couple of weeks time the Cambridge Vasculitis Support Group will be having their annual get together and one of the doctore from Addenbrookes will be talking about the side effects of drugs and in particular Retuximub. It sounds very interesting and of course also gives me the opportunity to meet up with fellow Weggies friends and hopefully meet some new ones!!