Dex - side effects

Not sure if I asked this before. Anyone who has taken Dexamethesone (Dex) what side effects have you had.

The doctor and I have decided it is time to move on. Rhogam is causing issues with my kidneys. I am very prone to side effects so I'm asking for personal stories Even if you are unsure it was related to treatment I need to hear about it.



Thanks in advance

Dexamethasone is usually used differently than prednisone, as a very high dose 4-day cycle, repeated bi-weekly or monthly 4-6 times in an attempt to achieve remission, or just one time as a rescue treatment. Did your doctor say he/she is planning to use high-dose dexamethasone(HDD or HD-Dex)? Many people have a very difficult time with HD-Dex side effects, but not everyone... huge individual differences. The benefit is higher effectiveness than prednisone, and no slow taper. Ellen has used it at least six times, and does not like it one bit: extreme appetite, restlessness, mood volatility, insomnia, but no withdrawal symptoms. Others have reported withdrawal symptoms: mostly fatigue and achiness.

Winnifred

"Rhogam is causing issues with my kidneys"

As a renal specialist nurse I'm interested to know what your kidney issues are if you don't mind sharing the information. If you don't wish to I quite understand.
Anne

Hi Winnifred~ good luck on the Dex. My story isn't typical, some people work and seem to do fine.

But for me it was crazy. I was so intense and wired! very hyper, couldn't get a thing done, but in a good enough mood, no anger. Couldn't sleep at all, felt like I was going 100 mph. By the third day I was exhausted from lack of sleep but still in high gear! I began hearing voices that night- it was like an auditorium of people all talking at once- kind of psychotic! but not true psychosis because all the while I knew it was the drug. I remember laying in bed all night unable to sleep thinking, "I hate this drug so much!"

I decided not to pick up my son from school, had him get a ride with someone else because I wasn't sure what I would say to the other parents- I was over the top intense! I wasn't working at the time so that was good. I would never take Dexa and go to work, even driving a car wasn't safe the way I felt. Crazy wired and tired.

On day 5 after a 4 day round, I was depressed- ugh Couldn't do much, I was in a dark cloud. I was experiencing kind of a visual depression where everything in my charming bright little cottage looked old and worn out. Again I knew it was the drug so didn't take it all so seriously. Day 6 I felt a bit better.

My platelets got a boost for about 10 days then came crashing back down. All in all, for me it was absolutely not worth it and I swore never again. Hope it goes better for you! good luck

Thanks again for your responses.

Rob - My doctor (she) will be giving me 4 days of high dose Dex pill form. Because I have sensitivities to drugs and tend to get odd or rare side effects. What happens next will depend on how I react. I am allergic to Prednisone so she is a little concern I may react to Dex.

mrsb04 - My usual rescue treatment is Rhogam, my main side effect is hematuria lasting 12-24hrs. What I have developed is called "extra-ureter" on one of my kidneys. Which they say is congenital; problem is I've had multiple ultra sounds and other testing done before never once showing or mentioning this. Did some further research to find another cause can be the kidney's inability to process red blood cells properly causing the ureter to enlarge.

poseymint - She is planning on writing me a sick note so I'll be off of work during treatment time. She is also going to prescribe me a sleep aid. I will have 24/7 access to either her or one of the nurses in case i have a reaction.

As for the cottage looking warn out. That is worrisome my apartment is small and dingy lol

I know a lot of people have great with Dex...for me, it not only didn't help my count, but I had an almost "psychotic" reaction -- irritation, rage, nervousness...felt like a volcano was was erupting inside that I could barely control. I, too, often react adversely to meds, so just considered this another one to add to my list. Since it was only administered for 4 days, I was able to live with the side effects, but wouldn't have had it gone on longer.
Good luck!