steroid treatment

[perfecteverytime]

I have developed lesions in brain and spine. CLL team are not certain whether or not these are linked to my CLL. Decision has been made to start treatment of high dose steroid : Initially, 2g X 3 days of Methylprednisolene.

Does anyone have experience of dealing with the side effects of this treatment?

[Cindy1462]

I am so sorry to hear this. I hope your treatment works. How were your lesions found? I hope you are not in pain. Cindy.

[Bubnojay]

I wish I had a helpful answer, but sorry to say I don't. However I could not let your post pass me by without echoing Cindy's words, I hope you are not in any pain, and wish you a successful outcome.

Very best wishes

Bubnjay1

[Quarry]

Sorry to hear this. Does dose continue after the 3 days?

I have no experience of your (short but extremely high dose). I only got up to 80mg/day for 6 weeks (which I was told was very high - you are almost 25 times this for the 3 days). Initially I was buzzing: I suspect you will be on the ceiling or even higher. Beyond that I was lucky and had no side-effects.

So what happens at your levels I have no experience of: however side effects are very individual. I hope all goes well

[Ezjacobs]

Steroids have a host of side effects: the one that has given me the most trouble is difficulty in sleeping, both in initiating and maintaining sleep.

Others include hyperemotinaliy, and water retention. People respond individually and differently. Good luck .

[jtaeross]

I have brain lesions too along with a small aneurysm. My doctors and I are choosing to ignore them. I'm on ibrutinib and doing very well. Doc. says my lesions are small for now.