Myeloma: Revlimid and steroids: How quickly do side effects subside?

@marypluzes Welcome to Mayo Clinic Connect! It's nice to hear you are checking in for concerns with your mother. what a caring daughter!

Not knowing what dose of Revlimid your mother is on, anytime we start a strong medication, our bodies have a variety of reactions. I have been on Revlimid 5mg since August 2021, and by the end of each 3 week regimen I am fairly tired. I am also on dialysis for end stage kidney disease, not related to multiple myeloma. When your mother goes in to her oncologist, they should be asking her about her side effects. Helping her keep a written list of what she is experiencing will help her a lot, also.

Yes, she may have a lessening of the symptoms as she goes through that week off, and as she continues on the Revlimid, she may experience lessening of the overall symptoms as her systems becomes more accustomed to this new drug. If she is on the steroids once a week, perhaps Dexamethasone, she might experience a big boost of energy as that works in her system, for a few days, then an energy drop again. That is what happens to me!

Any further questions?
Ginger

I have been on revlimid 25mg and dexamethasone steroids for over 1 year and will have my stem cell transplant next week. (No gout meds or anti ant acids).

Your Mom is experiencing many of the common side effects. I found the steroid to be the most challenging at first.( i.e. shakes, insomnia, crash at end of the week).

I also suggest speaking with her hematologist regarding the side effects. I was able to adjust the timing and amount of steroid taken. ( we spread the dose out over the week instead of taking all at once at the beginning of the week.) This made it more manageable.

I found my body was able to adjust over the first couple of months and the effects were more manageable. She may experience a slight rash after the first or second cycle of revlimid as well. Common but should be reported asap so they can manage as well.

I hope your Mom is able to get the same relief that I was able to achieve while taking the medication. The boost of energy and end of week fatigue is pretty standard for me with some weeks being better than others. I hope she also is able to achieve remission of the myeloma as I have from this course of treatment.

I am glad she has you supporting her thru her journey as well! Let me know if I can assist in any other way with shared experiences. Thoughts and Prayers to your family!

Good morning @dkandalec. Thank you for sharing your positive story with taking the Revlimid and steroids for your multiple myeloma. I’m happy to see you’ve achieved remission and can now launch forward into your next adventure along this journey.

We have members who’ve recently underwent the same stem cell transplant for various blood diseases and have had very positive and inspirational stories they’ve shared with us.
When you’re ready, I’d like to introduce you to @countrygirlusa and her story in this discussion:
My Bone Marrow Transplant story: https://connect.mayoclinic.org/comment/716285/

~And another member, @capthondo and his story. “Want to talk about multiple myeloma: https://connect.mayoclinic.org/comment/747475/

I hope you’ll keep us posted on your journey and don’t hesitate to pop in with any questions. I just realized you’ve been a member since last September but it’s your first time posting. I hope it’s the first of many because you have a wonderfully positive attitude and were so encouraging for @marypluzes with the information for her mom.

Do you have any questions about your upcoming Stem Cell Transplant? I’m expecting this is an autologous transplant using your own cells. Is the transplant center near your hometown so you don’t have to travel or are you all set with lodging?

Thanks so much for sharing the links!
Yes this is an autologous transplant and I am close enough to the transplant hospital ( 70 miles) to be able to return home after the hospital stay.
I appreciate this sight as a resource and willing to share any information with others to support there journey.
I am blessed to have the Mayo teams support!

I wish you all the best as you move forward with your transplant. It’s great you’re not very far away from your transplant center. Being able to go home is a really nice perk. ☺️
You sound well prepared for this new adventure in your life journey. I really hope you’ll keep us posted in the forum and share your experience.
When is your first day at the clinic?

Monday 10/3 line placement, Tuesday 10/4 admission with chemo. 10/5 transplant.

Hi @dkandalec I’ll be thinking of you this week! I didn’t realize you’ve already had your cell collection. So, full speed ahead with the transplant! 🙃. Keep in touch, ok?

Good morning, @dkandalec! Just wanted to check in with you to see how recovery is going with your autologous stem cell transplant. Getting your energy back?

I’m doing remarkably well. All of my blood counts have rebounded and I was home after 14 days in the hospital! I have been walking 1 to 2 miles a day to help with energy levels. Still have some afternoon fatigue and doing my best to get my appetite back.
Overall I am blessed to have very little side effects and recovering well after 28 days.

Thanks so much for checking in on me and would be glad to assist anyone with any questions or to give any insights on my stem cell journey.
Have a blessed thanksgiving and holiday season. I got this!

I new to this connect web site. I have multiple myeloma, osteoporosis and 4 fractures in my back that aren’t really as painful as when first discovered. (One collapsed) I have one issue that I don’t have an answer to. I take 5 Dexamethasone at 5:30am on my Wednesday chemo injection day. Last Wednesday evening I started burning when I urinated. I drank a lot of water. Went to bed but couldn’t sleep. It was still burning. Tried many times to urinate because it kept burning. Only trickled. Finally at 4:00am, I found my OTC AZO, took 2 and I finally fell asleep. I have E Coli I was told and am on Sulfamethoxazole-ole-tmp DDs for 5 days. But yesterday the same thing happened at night. Must of gone to bathroom 6 times, but it still burnt. Took otc AZO again, but just weakened the burning. I’ve already taken half of the Sulfamethoxazole…………. I’m guessing it has something to do with the steroid pills I take all 5 at 5:30am. But ????? It’s Thanksgiving and I’m not going to be able to get an answer today, but I will try to get one Friday. I started chemo in June this year. Any one have the same experience?