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Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

Drowsiness from Velcade & dexamethasone

by gumps on Mon Oct 29, 2018 11:07 am

Hello Forum,

I am from India and I was first diagnosed with multiple myeloma in December 2011. I was treated with Velcade plus dexa­metha­sone. I had a complete recovery. I did not opt for a stem cell trans­plant as I had renal im­pairment. I also did not get into any maintenance therapy as my oncologist told me that I am in remission. I have had peripheral neuropathy due to Velcade and have been managing it.

In early 2017, however, I relapsed. So I was advised to start on Velcade and dexa­metha­sone again as maintenance therapy (once in 2 weeks). My renal condition has improved a lot, and I am eligible for trans­plant. However, I am not too keen on the transplant yet. I am able to cope up with the side effects except for one unusual challenge. Let me explain this challenge.

So, let's say on day 1 I had the Velcade and dexamethasone. By the end of day 3, I think my dexa­metha­sone effect kinda gets faded away and I start feeling drowsy significantly (I feel very sleepy all the time, fatigued). This drowsiness lasts until day 6. I am not sure what's causing this. My sodium levels are not beyond the normal range. This is a continuous pattern that happens and it impacts my work significantly.

Any suggestions for how to deal with this? Thank you.

- Pradeep

gumps
Name: Pradeep
When were you/they diagnosed?: 2011
Age at diagnosis: 38

Re: Drowsiness from Velcade & dexamethasone

by willow75 on Mon Nov 05, 2018 3:39 pm

I believe that both the Velcade and the dexa­meth­a­sone "crash" can cause this drowsiness. When I was briefly on Velcade without dexamethasone, instead taking Medrol (methyl­pred­nisolone) through­out the month, I was very, very tired for about 24-48 hours after each injection. When I have had dex along with Velcade, the experience of dex wearing off can be pretty harsh.

My myeloma specialist had me lower the dose of dex and added Medrol every other day (during the break periods) to mitigate that crash. I don't know if that's appropriate in your situation, but it could be something to ask about. It helped my energy but worsened some of the other steroid side effects for me, like the moon face.

Managing the energy swings is a constant struggle. If you are losing a lot of sleep on dex days that will also make this harder, so you could ask your doctor about possible sleep aids. I resisted that for a long time, but when I finally tried something (Ambien [zolpidem]) on dex days, my ability to get through the post-dex period improved dramatically because I was fortified with some sleep.

Good luck!

willow75
Who do you know with myeloma?: me
When were you/they diagnosed?: 2017
Age at diagnosis: 42


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