Dexamethasone-Yes or No?

I've only posted here a couple of times, but I'm really in need a some advice/opinions. I am 30 weeks pregnant (had ITP prior to pregnancy) and my counts have been like a roller coaster (as low as 18 as high as 88 after IVIG). I was admitted to the hospital when I was 10 weeks with stomach issues and that's when they found my counts were at 18. They put me on 60mg of prednisone. Well I've been on steroids since then (the first week of August), but I've been trying to keep my dose as low as possible. I'm on 20mg now (and have been for the last month) up from 10mg because I was having some bleeding. Well my hematologist knows I hate prednisone and decided to try IVIG. I had two round and it basically did nothing. The first time I got up to 88, but was back down in 2 weeks. The second time they doubled my dose and my count was 40 one week later.

So now here I am, 30 weeks pregnant with a current platelet count of 28. The hematologist was going to leave me at the 20mg of prednisone for a few more weeks until I opened my big mouth and mentioned that I was having the same kind of stomach pains that I've had the last couple of times my counts were really low. She's now concerned about the possibility of Crohns/Colitis. She wants me to take a 4 day course of dexamethasone, but she told me that ultimately the decision is mine. She basically told me I will be miserable, as I am intolerant to steroids in general. My hormones already have me going crazy because I'm pregnant, so I'm really hesistant about doing this four day course. I'm just curious if anyone here can tell me what their experiences with the drug were. Thanks so much!

I just had my 4 day dose of this last month and it was an awful experience. My earlier 4 months of prednisone were ok but the decadron was bad. There is no tapering up to or down from the dose, which is by the way about 7 times more powerful than prednisone, ie 40 mg decadron/day = 280 mg predisone/day. I felt like I was in a brain fog for about a week, literally could not function for several days at the end of the 4 days and beyond. I've had lots of treatments and this was the worst and I'm just a middle aged guy. Imagine it may be worse in your case, especially if you don't do well with other steroids.I'm actually glad it didn't work so I won't have to go through that again.

I used DEX a lot in the past, whenever other treatments would fail.
DEX usually bumped me up above 20k.
Side effects were horrid....even worse when working full-time (engineer), then playing guitar and singing in bars
on the weekends. DEX made me angry and I felt strung-out....I hate the stuff.
It eventually ceased to be as effective.....the last time I used it was 2 years ago......I did two rounds of it
over a 10 day period. Haven't used DEX since starting on Promacta two years ago.

I took 20mg Dexa which is equivalent to about 100mg prednisone I think (I may be wrong) which is half of what most doctors prescribe- it was unbearable. I was so wired anxious and just crazy intense, then afterwards the crash. I felt completely depressed like hopeless, the world was a dark place, and I am a very upbeat person not inclined to depression. Plus it only boosted my platelets for a week or so. Its such a harsh drug especially if you are pregnant and sensitive, and considering the baby too. Something more gentle would be my advice.
I have low counts (9-13K) right now, trying to keep my prednisone low 5-7.5mg. I take Vit C to prevent bleeding, don't know if it works but thats what I do.

I flatly refuse to take the stuff. Took it for 4 days, found myself in the supermarket on day 5 (no tapering you are either taking it or not) I had no idea why I was there, and the floor felt ike jelly. Did little for my count and wasn't worth the trouble.

I refused to take it after the first time too. I felt spaced out and drunk and couldn't walk straight a week after stopping it. My counts soared but crashed to 2 after a week.

Ann I rang the hospital (was just a mile or so from the supermarket) and they told me to pop round. My haemo was on his hols but i saw his mentor, a lovely old doc and he told me i had been thrown into withdrawl, a bit like a junkie, never again.

Actually, I had my funniest and most exasperating go-around with the pharmacy due to DEX.
The last time I took it (count was 4k), my hematologist called the Rx in: 4mg tablets, 10 per day x 8 days. My wife picked up the script and brought it home to me.
There were only 8 pills in the bottle......I went down to the pharmacy. They argued and argued with me.
They informed me that NO ONE takes 40mgs of DEX a day and no doctor would prescribe such a thing!
It took them calling my hematologist to confirm that they were quite incorrect on all counts. She had misunderstood the phone message as 4mgs a day, not 40mgs a day. She had a hard time wrapping her head around 40mgs a day. She was most apologetic though.

I was thinking; Sure...make me angry right BEFORE I take this stuff that just makes me more angry.

Funny story WJack- I'm imagining you are like Dr Jeckle and Mr Hyde when you're on dexy!
But I think you should have gone back to the pharmacy on day 3 or 4 of your treatment and "explained" to them how its not crazy but completely reasonable to take 40mgs!

I do not know how other people feel on dexamethasone, however, I am going to tell you how it is for my daughter which is 8 years old and has Chronic ITP. She has been hospitalized four times in the last 2 1/2 months and the first three times which was in a time period of 5 weeks, they did the IVIG treatment, it would get her platlet count up to about 90 and then within a week it would drop it back down. Then this last time they told me that they were going to do a steroid bomb on her, and I was completely uneasy about that because a long term steroids is not good on anyone really. BUt they told me that they were going to give her the dexamethasone which she will only take 24mg for 5 days, it worked, got her platlet counts up to 296 at her highest within 9 days, and they have not dropped below 75 and it has been just about a month now since she did that. She did not have the hyperness that comes from the predisone which she has been on this last summer for 10 days, she told me that it didn't make her feel funny, now when the docs say anything when it comes to steroids; even at 8 years old, she pipes up and says only if you give me the dexasone (she can't say the big full word). Being pregnant I do not know what the difference of the medications would be for you, but if the dexamethasone is safe for you, it is something that i would def recommend, predisone has never worked for her in the past, but this other steroid had worked tremendously for her. Good luck and thoughts and prayers will be with you throughout this time. --- Alicia N.

I also did the dex dose. The first time I took it was in 2006: 4 days of dex at the 40 mg, then stop. I was in the hospital when they gave it to me with counts of 7. It brought up my counts to normal 300 for 4 years. I then crased July 2010. They started me again with the dex treatment: This time I did 4 days of dex--waited two weeks--then another 4 days of dex. Did this for a total of 4 or 5 treatments (can't remember). It brought up my platelets from the danger zone of 1-4 all the way up to 300 again. That was August 2010.

I'll have to say that the side effects were not very pleasant. But, compared to platelets of 1-4, I'd do it again. You just need to checkout if this could affect your baby. From what the doctor told me, the dex treatment usually doesn't work if you've tried a lot of other meds (not counting IVIG). This is just my opinion. I'm 63 and felt I was willing to try this treatment since it worked the first time for me.