I am worried about the cognitive effects of long-term treatment with dexamethasone.
I am 80 years old, and have been treated for multiple myeloma for about a year, initially with Revlimid, Velcade, and dexamethasone. I achieved a good remission (undetectable M-spike, and kappa free light chain level within normal limits), and now I am on maintenance. The maintenance dosages are 10 mg Revlimid, and dex was started at 12 mg. It is the usual 3 out of 4 week regimen.
This maintenance level of Revlimid seems small enough so that the side effects are minimal, much less than when I was taking the original doses (usually 15 or 20 mg., but sometimes as high as 25 mg.)
However, I still am having trouble with the dexamethasone. I was on 20 mg. during my initial treatment, and I was so whacked out that my wife actually thought I was developing Alzheimers. I negotiated with my oncologist to reduce the maintenance dose to 12, and then 10 mg. Now we have further reduced it to 8, but I still am often distracted, making mistakes, forgetting things, having trouble with simple mental tasks, etc., particularly on the day I take the dexamethasone and the day after. But I feel it is becoming more lasting. I do get some relief on my week off, and begin to feel almost normal, but I am concerned about lasting effects of long term use.
I have read about damage to the hippocampus and other brain damage in people who take steroids for long periods. However, they are generally taking them at greater dosages than I. On the other hand, I am 80 now and seem to have less ability to tolerate drugs than I did when I was younger. My doctor wants me on maintenance for the rest of my life.
My oncologist says I can stop the dexamethasone if I want to, and "see what happens". But he also says that the dex is killing the cancer cells, and I certainly don't want to interfere with my remission status. But the cognitive losses bother me a lot, and a longer life being mentally impaired does not appeal either.
Does anyone have any thoughts or information on brain damage or cognitive side effects from long-term dexamethasone treatment?
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bodumene - Name: bodumene
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: January, 2017
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