I'm on weekly treatments with Velcade, Darzolet and steroids. I have fatigue, cold feet, chills and insomnia when I take the steroids. Anyone else with these same issues? What do you do?
Hi, I was going through the same stuff a couple of months ago. I asked my Dr. to take me off the steroids.
It has helped with the insomnia and smoothed out the swings in energy and fatigue.
Steroids will keep you from sleeping. Mentioned it to my oncologist and she immediately cut the dose in half. sleeping issue is still there, but much improved, and there have been no adverse impacts to the treatment plan.
Hi Pierre, welcome to the team.
Yes, I have horrible side effects from steroids. I usually get hot flashes from the steroid's anxiety and insomnia; the chills are usually from Darzalex. Velcade causes neuropathy on the bottom of my feet. But the good news is that these drugs actually work to control myeloma. It does get better as you go along. 💜
I started taking me Dexamethasone steroid late at night so that I could sleep and have it keep me up all during the next day.
Velcade will make you very tired. If you get Velcade & Dex on the same day, that can help. You may be able to go to a smaller dose of Velcade. In my case, I had them discontinue it once I achieved remission even though they wanted me to continue it in maintenance. Velcade caused me too much neuropathy.
Talk to your doctor about Methylprednisolone to see if its viable instead of Dex. My doctor changed me to it due to issues I had with Dex, but I only recently switched to it - too early to tell.
It's hard, but doable. It's your best chance for a long remission. 💜