Dexamethasone 4 x 40 mg

Hi!

I just got diagnosed in the beginning of august and I've been on high dose prednisone for a month now (responded great in the beginning, but was tapered too fast and everything came crashing down), but to no help, my numbers been swinging between 5-10, the last 2-3 weeksrf. My hematologist just started me on 4 days x 40 mg dexamethasone and will I continue this every 4 weeks, 3 times altogether. I've read some positive things about this (compared to prednisone at least) and I wonder if anyone has experience with this; did it help, did you get side effects etc?
Many thanks!

Some people do okay with it, others hate it. So just see how you go.

For me, I did one 4 day cycle with 20mg dex, felt so awful and refused to do it again. My count went up well and then crashed right back down to nothing a few days later. I felt it was worth trying though.

Thanks for your reply, Ann!

What side effects did you experience?
I'll be doing 3 intervals of this, every 4 weeks.
I have one day left now, feeling very sleepy/tired! Otherwise much better than the prednisone (which I have to start taper
down the next week..) This whole steroid thing the last 5 weeks has really ruined my sleep!

I felt peculiar, distant and I couldn't walk straight, felt drunk. That was for a week after I'd finished it. I was scared it was going to be permanent but of course it wasn't.

It seems to be a good treatment if you can tolerate it, gets some into a remission after a few goes. Good luck.

Thank you! Mostly feeling very tired in the body and sleepy/groggy, but that might just be too little sleep over a longer period. The Dex is definitely not making that better! I was exhausted last night, but I still had to take a sleeping pill AND listen to this yoga relaxation/meditation cd to be able to fall a sleep...

Helga, the high-dose dexamethasone treatment is usually not given at the same time as prednisone. The thinking is that because the dexamethasone is only taken for four days, your body does not have time to become "dependant" on it, and so a taper is not needed.

My wife, Ellen, has used it several times when her platelets got too low, and it always works, but has never had a lasting effect. For her, the effect seems to have lasted less time with each course. Some people do get lasting results, though. There is also some evidence that it may enhance the effectiveness of Rituxan when given as a combination therapy, but the evidence is slim.

There are two sets of side effects: during and after. Ellen experienced high energy but also sleeplessness while taking HDD, along with a ravenous appetite. Upon withdrawal she felt out of sorts and tired a lot. Overall, she disliked the experience. I was surprised the side effects were not greater, since 40 mg of dexamethasone is the same as 280 mg of prednisone

Every time you read about the Dex protocol, they say that it is 'well tolerated'. By whom? None of us!

I was taking 80 mg prednisone a day, until I started the 4 days dex treatment. I felt extremely tired day 2-4, but not sure if it's the dex (I barely slept the first night I was so on edge), the pred for all those weeks or just the general lack of sleep the last month. So now I've finished my first dex puls and today I have to start again on the prednisone, in order to taper it down.. Glad when that'll be over! :dry: