Having spent several months trying and failing to get the authorities to look at this (I’m a mere patient apparently), it is very gratifying to get an instant response which indicates that I may possibily have done something useful by posting here!
If you haven’t already done it, start recording your para-protein levels. You need to be able to check whether this works for you and whether you need to increase the dosage (remember the Holland & Barratt maximum off 500mg, so there is nothing to worry about when we are in the tens of miligrams range). I put my results in a simple two column spreadsheet, Date and Value. I added a simple chart to show the data as a graph. Anyone who hasn’t used a chart before shouldn’t panic, it is clearly described in the Help that comes with whatever spreadsheet application you are using and is pretty simple.
Very good article that. Quite so, despite what the International Society of Professional Knicker Wetters may say. Apparently “everything in moderation” is too difficult for them to understand. I have to say that I don’t recall ever being told to avoid alcohol although there were times when it was unavailable due to being in a ward. But 15 years ago is a long time and treatments have changed, for example there was no maintenance during my first remission, 11 years! There is no evidence that it has ever interfered with my treatment.
