Steroid Rage

imyaya1952

  I have posted a few times about the change in my husbands personality. The doctors told me "steroids cause mood swings".  After taking my husband off steroids(dexamehtasone) for two weeks and his calm personality returning we went to the doctor only to be told that the dexamethasone along with the revlimid are what fight his cancer. So he is back on the dex and things continue to get worse. There are only two days per week that I do not avoid him for fear of his anger. Those two days are after the weekly dose of dex that causes hyper irratic behavior and the following four days of him coming down from that "high" and intense anger and confusion and meaness.. After watching a TV program where a woman was put on steroids for a sinus infection and was admitted to the psche unit for raging behavior they mentioned" Steroid Rage". I had never heard it mentioned before nor seen such extreme, except in my husband.  I looked it up and sure enough a lot said about it.  It has even been the blame of murders etc.. Not all people react well to steroids!!!! My husband has been on them two years.  I don't want him to die without them, but I cannot take the abuse any longer. It is both physical and verbal. I have contacted doctor AGAIN- i hope they can do something and stop making me feel as if it is just "my problem" Look up Steroid Rage (also known as Roid Rage) Maybe the doctors can look it up too. I am so angry that nothing seems to be able to be done. Thank You for letting me sound off.

GingerMay

Abuse is not OK

I believe "Roaid Rage" is very real, and when growing up my dad was on various steroids for lung issues and had verbal outbursts as a result.  It's hard because you feel like you have to let it roll off your back because it's not really what they mean to say.  (He eventually got off them much to our relief.)  There are various postings on this site about the side effects of dexamehtasone that are similar to what you describe.  

However, I just had to say you do not have to tolerate abuse, especially if it is physical.  Your husband needs to survive this, but you do too.  I know it's easy for me to say.  But perhaps you can ask his doctors for a different drug?  Do the doctors know the abuse is now physical?  Are there counselors or patient advocates associated with the hospital you can talk to who may be able to suggest coping stragegies?  If you see a pattern of behavior changes after treatment, can you make arrangements to be elsewhere during those times?  I don't think doctors always have a clear picture of the side-effects caused by the drugs they prescribe and sometimes don't adequately prepare patients.  

I will keep you and your husband in my thoughts and hoping you find a peaceful resolve.    

   

GingerMay

GingerMay said:

Abuse is not OK

I believe "Roaid Rage" is very real, and when growing up my dad was on various steroids for lung issues and had verbal outbursts as a result.  It's hard because you feel like you have to let it roll off your back because it's not really what they mean to say.  (He eventually got off them much to our relief.)  There are various postings on this site about the side effects of dexamehtasone that are similar to what you describe.  

However, I just had to say you do not have to tolerate abuse, especially if it is physical.  Your husband needs to survive this, but you do too.  I know it's easy for me to say.  But perhaps you can ask his doctors for a different drug?  Do the doctors know the abuse is now physical?  Are there counselors or patient advocates associated with the hospital you can talk to who may be able to suggest coping stragegies?  If you see a pattern of behavior changes after treatment, can you make arrangements to be elsewhere during those times?  I don't think doctors always have a clear picture of the side-effects caused by the drugs they prescribe and sometimes don't adequately prepare patients.  

I will keep you and your husband in my thoughts and hoping you find a peaceful resolve.    

   

One other thing

I felt like I wanted to add one other statement, but if it is redundant I apologize.  You do not need to tolerate abuse in any form, under any circumstance - even when your husband has cancer.  Cancer does not give anyone a free pass to abuse.  Please look out for yourself (and others, pets, etc. in your home) and do what you need to live where you are not afraid.  Since his behavior is unpredictable with this drug and there may not be any alternative medications, this situation is not to be taken lightly.  You can post here any time to vent, or just let us know how you are doing.  My prayers to you.     

JerzyGrrl

Definitely, let them know

Definitely, let your husband's doctors -- heck, ALL his care team -- know about his raging anger and erratic behavior after the meds.  Even better if you need to write something out that you hand to them so you get all the details explained, just do it. If for some reason you're scared or embarassed about saying this in front of your husband, give the info to them and ask them to read it to themselves.  Also, does your husband's medical group and/or health insurance plan have a case manager? Many do. If so, include them in on your informing.  Write down who you gave the info to and when. Then THEY will be responsible for the effects of your husband's nastiness.  Trust me, SOMETHING will change. 

imyaya1952

Thank You Both

Thanks for the support.  I contacted the "nurse navigator" and told her and asked that they not sy anything to my husband at his next appointment.  You are both right.  The doctors need to take some responsibility for this and find an answer. Bless both of you for caring about me.