[floridagirl]

Roid rage and my father

by floridagirl on Fri Dec 20, 2013 7:03 pm

Hi All,

I've been posting a bit here since my father was diag. with multiple myeloma at age 66 just about a month ago. He is getting 20 mg of steroids each week right now. Should be double that but he is having such a violent reaction to it dr. is keeping it at half.

Anyone else experienced severe roid rage from this. He is violent, wants to kill himself, afraid he will hurt my mother. He is up and leaves the house in the middle of the night and drives very crazy. He is so combative we can't stop him. This is very out of character for him. We just gave him 3 mg xanax and has no effect on calming him down. Not sure how many to give him without overdosing him since he is also on pain meds. Anyone else experience this or have another suggestion? Are the steroids essential to multiple myeloma treatment?

Thanks all.

[NStewart]

Re: Roid rage and my father

by NStewart on Sat Dec 21, 2013 5:22 pm

Florida Girl-

I hope that by now you've called your father's doctor and got some help. One of the oncologists on the myeloma team where I am treated has said that the dex dose can be decreased to 12 mg and still have the effect on the cancer that they are looking for. But, some people can't tolerate dex at all. Your father may be one of them. There are people who don't take any dex because of their reaction to it. Although dex has anticancer properties, it may not be worth the side effects that your father is experiencing.

Nancy in Phila

[Multibilly]

Re: Roid rage and my father

by Multibilly on Sat Dec 21, 2013 6:13 pm

See Stephen's account here:

https://myelomabeacon.org/headline/2012/02/23/manhattan-tales-steroid-adventures/

[DM Walkinh]

Re: Roid rage and my father

by DM Walkinh on Sun Dec 22, 2013 1:00 pm

Cut the dose in half and then even more so operationally by spreading it out over the week.

I typically take 8 mg say on a Monday, and then stagger 3 doses each of 4 mg between Wednesday and Saturday. This is not an exact science - and my doctor had no issues at all with this adjustment that I initiated myself. In fact, maintaining a steady level not only reduces side effects and the impact of the crash, it keeps the drug working efficaciously. My hemo­globin levels - this is apparently a CENTRAL benefit of dexamethasone - have never been higher. I don't see how anyone can tolerate the effects of that huge 40 mg bollus.

I should say for me that I was not overcome with rage, but I was quick tempered and pissy, but primarily during the crash. But the crash is much less now. I suspect I could work it out so that I take dex in such a way as to maintain chronic low levels – maybe 4 mg every other day – but I think my body should have at least a day or two of normalcy per week IMHO. I am also a younger patient able to have a normal busy life.

This disease does not define me and I won't be a medical zombie, because my doctor thinks that I should simply submit Do what is right for you.

[Dr. Ken Shain]

Re: Roid rage and my father

by Dr. Ken Shain on Sun Dec 22, 2013 11:59 pm

This sounds quite serious. Some individuals react very poorly to dex (or other steroids). Some with mood swings, others can become depressed or even psychotic and require mental health professionals to assist with management for a time. I would suggest this is a bit more that "roid-rage"- notably different then the rage associated with anabolic steroids (athletes and wrestlers).

Based on your experiences, he should be taken off dex completely - depending on the clinical setting. I would consider mental health referral and potential medical management.

We all hope that this resolves quickly and your father returns to his baseline. We can only imagine how difficult this must be. However, every person is different and therapy needs to be tailored to the individual as issues arise.

Please keep us updated and I hope that you and your family are able to enjoy your holidays.

[coachhoke]

Re: Roid rage and my father

by coachhoke on Mon Dec 23, 2013 12:44 pm

I was taken off dex, not for rage, but other issues (vision and gastro-intestinal). Now the only thing I take for maintainance is Revlimid, but I keep wondering if I should just suck it up and go back on the dex plus the Rev. My M-spike is hanging in at 0.2 g/dL and I have no symptoms. Just looking for some advice.

Thanks and merry Christmas,

Coach Hoke

[Nancy Shamanna]

Re: Roid rage and my father

by Nancy Shamanna on Mon Dec 23, 2013 1:15 pm

Hi Coach,

This isn't advice but I was also on low-dose Revlimid for 'consolidation/maintenance' for a year and I didn't have any dex with it. Gradually my 'M spike' fell from over 0.1 g/dL to negligible (i.e. over 1 in metric). Dex wasn't a treatment that was suggested at that time; this was in 2010. Just an observation I guess!

[coachhoke]

Re: Roid rage and my father

by coachhoke on Mon Dec 23, 2013 2:02 pm

Thanks, Nancy. What was your dose? I am on 5 mg. I know most people are on a lot higher dose.

Thanks again!

[Nancy Shamanna]

Re: Roid rage and my father

by Nancy Shamanna on Mon Dec 23, 2013 2:14 pm

Hi Coach,

When I took the low-dose Revlimid, it was after induction chemo with Velcade/dex, and then an auto stem cell transplant. 100 days after the transplant, I was started on 10 mg Revlimid, as I recall (it could have been 15 mg, I can't remember though).

After a few months, and having suffered from low neutrophil counts, I was doing well and my oncologist then lowered the dose to 5 mg. That was quite manageable and I finished out the year on that.

At one year, some data came out that Revlimid was sometimes associated with secondary cancers, so to be cautious, my doctor pulled me off the Revlimid. I didn't have any recurrence of the M-spike for more than three years, and if the M-spike were to get to a treatable amount, I would probably be back on Revlimid again (don't know if it would be with dex)!

Hope that helps. Happy holidays to you also!

[darnold]

Re: Roid rage and my father

by darnold on Tue Dec 24, 2013 12:52 pm

Hi Coach Hoke,

I also took Revlimid as my maintenance drug, following a stem cell transplant. I started on 25 mg but couldn't handle it, so my oncologist lowered the dose to 10 mg. I also took it for two weeks, instead of three weeks, and usually needed three to four weeks afterward until my blood counts improved enough to take the next dose. I only took dex during my induction therapy.

I've been off of all maintenance drugs for nearly a year. I had developed a small M-spike, which is every so slowly increasing upward. Eventually, I'll go back on medication.

Hope this helps.