Inconsistencies with Dex?

Long story short, Prednisone was rather useless (up to 120mg/day). A 4 day course of dex with ivig the first 2 days put right at 200 in Febuary. I slowly dropped but stayed steady at 45-50 for the past 2 months. With my approval, my hema wanted to "experiment" with dex again. I was kind of reluctant since I was steady and safe, but I wanted more. I got lucky and rolled my truck in April, wasnt hurt but i couldnt imagine what could've happened so yea the more the better. So 3 weeks ago i did another 4 day, 40mg/day dex round. I dropped to the 20's. Last week another round and Monday i was at 113. His thinking behind this is that a round every other week for 6-8 rounds will reboost my body into platelet production. It worked for another patient of his so im going to give it a try. What I am wondering is if anyone has had or heard of this up/down on dex? Thank you all

The way I see it, anything can and does happen with ITP. I wouldn't expect the same results every time with a treatment.

Actually, the protocol for Dex is 40 mg's once a month for 6 months. Most people can't take the side effects for that long. How on earth are you doing it every other week?

just finished another round last night. besides not getting any sleep all week i didnt have a problem with it, every round takes away a side effect it seems like.

Every other week for 6-8 times? Is that ok?

My hematologist was a little concerned that my last hematologist had me do two that were two weeks apart. He was concerned about my bones - I don't know why that was his focus though.

My experience was that dex (on a 4 day pulse) would give me a bump up after one week, and then a drop at the second week. So it looked Ike it helped but it was ony temporary.

recently on the 4 day course, i drop to the 30s on the first 2 days, by the next week im breaking 100.i dont like being on it, but it works and im not struggling too bad with it.

Dex isn't all that consistent for me....but it does work most times as a quick fix.
I don't recall ever getting over 30k for more than a couple of days while using it though.
Most times I have to take two 4-day courses of 40mg/day back-to-back (8 days) to even get that. Oh the joy!
Haven't had to use it for 2.5 years now. The last time was a temporary boost just when I began Promacta.

Good luck with it, I can't stand the stuff. Lots of fun to go to my engineering job on.....even more fun to play music in a biker bar while on Dex. Dex gives you that little extra 'biker-attitude'.

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I did the dex treatment almost two years ago. I did four 4-day courses every two weeks. The last treatment I had was in October of 2010. But, actually my platelets had stabilized by the end of August 2010. At that time my platelets went past 300 and were that high as of November 2011. But, I'm thinking may be my platelets were going to go up any way (even on just 2 of the dex treatments). You just never know with this ITP.

Good luck to you. Right now I'm just getting checked once a year--so not sure what they are now.

I was at 98 this morning, so i guess its all working out but like you said, never know with itp lol

I was on 40mg/day for 4 weeks, then 2 weeks of weaning off of it. While it did keep my platelets up in the normal range, it was horrible. I would go days without sleeping more than an hour or 2. I could probably count on both hands the hours of sleep I got in those 6 weeks. While most of the side effects have gone away, I'm still holding on to 10lbs of weight gain (out of 20), occaisional blurry vision and facial acne, nearly 4 weeks later.

Hayley - I think you are talking about Prednisone, not Dex.

No, sadly, I'm talking about Dex.

40 mg's of Dex for 4 weeks? I've never heard of that. That would be torture.

Yes it was. Then it was 2 weeks of weaning however felt best for me. It was rough.

I have never, ever heard of any doctor prescribing that way. I've been here for 14 years.

Hayley, I've never heard of that either. I had a hard time dealing with the 4 days of dex (then wait two weeks). I, too, also had blury vision. After having that much dex., you should have everything checked by your doctor. One lady I met had her sugar go way up from steriods.

Ouch, 4 weeks.....sounds like no fun at all.
The most I've done was 10 days (2 back-to-back 5-day courses of 40mg/day). Never again.

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I was having everything montitored during that time. I was started on that dosage while in the hospital and was also receiving insulin at that time as it did cause my glucose to go up. Anytime I ate anything with sugar in it I would get jittery. I am now just learning it should have been prescribed to me as it was.

I only took 20mg dex for 4 days and said never again so all respect to you for doing 4 weeks. And with a fast taper too. Gosh!

Started another round last night at work. Took the normal 40mg and 20mg pepcid, also 2 tylenol for a headache. not sure if its because I had a fairly easy night, but I didnt get angry and my back never hurt, even throughout the whole 12 hrs. Free and clear of 2 out of the normal 3 side effects, still got a green face. Also had a few cuts, I dont get a cbc until next week but my guess is im in the 30s. Based soley and the minority of the cuts I had that bled.....really small. Which makes sense as I have dropped the week on dex but raise when I stop. I still have a feeling my body is growing to reject it. Has anyone become immune to dex or its effectiveness lessened over long term use?

When I first took the Dex two years ago, it wasn't working for me. But, as I mentioned before, once I stopped one of the meds I was taking, it finally started to work. It worked really great then. I do think we can become immune to some of these meds. I'm not sure why. I've just heard it mentioned before.

Any treatment can stop working at any time.