First Time Being Treated, Not sure what to expect?

Hi All,

So today I had an appointment with the my doc. Counts dropped from 53 to 36 in 10 days. The day I have pretty much known would come after two months of waiting is here. She has put me on 40 mg of a steroid, but it's not prednisone, it's something stronger, I have to pick it up later so I do not know the name, think it begins with a "d". The pharmacist said "this is a mistake, it's way too high of a dosage", which is exactly what my doc told me she would say : ).

I will start tomorrow for 4 days, once a day, in the morning, hopefully so I can sleep at night. Then I go for a platelet recheck on Wed. I hear the side effects can be nasty, but I also hear sometimes people are ok on them. I have taken dose packs in the past for major sinus issues and did fine as long as I took them in the morning.

Can anyone give me some sage advice? I'm kind of freaking out a little bit.

Thanks,
Carla

Carla:

No reason to freak. It's Decadron or Dexamethasone, same thing. 40 mg's is the standard dose for ITP. It is stronger than Prednisone, but it's only 4 days.

I have not used it, but planned to if my counts drop again. You're right, some people do well with it and some do not. From what I've heard from others, each day gets worse as you take it. The first few days off of the drug are even worse...you can feel like you have the flu, achy, exhausted, etc. Most do get a good initial response. The problem is that counts do not always stay up for very long, however, some people manage a good remission.

You'll be okay. A week. It will be over in a week.

Sounds like dexmethazone think thats how you spell it ive had itp for seven years and have had it all you will be fine all i can say is eat right n get some exercise cause the weight gain can b fierce there are other side effects but nothing crazy just be happy if you can get along with ju s steroids alot of us cant

The pharmacist said "this is a mistake, it's way too high of a dosage"

Yep...Dextramethasone. The fun stuff.
I remember taking a script for it a couple years back to a new pharmacy. Around here it comes in 4mg tablets and at that time I had a script for 8 days at 40mgs a day (10 tablets a day). The pharmacist only gave me 8 tablets total.....because she was absolutely 100% certain there was a typo and the '40' was supposed to be '4'. So I didn't even get enough for one day, much less 8 days. I had her call my Hematologist.
On the other hand....it is good that pharmacists look at stuff like that.

While taking Dex, avoid people as much as possible....and never, ever front a blues/rock band in a biker bar while taking our dosage level of Dexamethasone....it makes for an exciting evening (don't ask how I know).

Everyone reacts to steroids differently. Sadly the Dex pulse didn't raise my counts at all (in fact I crashed quite severly on them) but it did make for an intersting 4 days. I started crying for no reason during credit card commercials on day 2 or 3. Be sure to double sched the dosage you were perscribed and what the pharmacy gives you. I was perscribed 40MG /day for for days and the bottle I was given (with 4MG pills) said take 4 per day by mouth.....