High Dose Dexamethasone??

My daughter, Madeline (14 years old), has had ITP for 4 years and has had about 25 WinRho treatments with temporary response, in addition to 4 rounds of Rituxin, treatment for h-pylori (sp ?), and mega doses of prednisone with no response.

A new Hemo in the practice she sees is now suggesting a high dose (40mg) of dexamethasone for four days per month, with the intent of stabilizing her counts over time. Since it's only taken 4 days out of 30, the side effects are supposed to be limited. There is some limited info on the internet about this type of treatment, with mixed results. Just wondering if anyone has had experience with this treatment?

And, FYI, for the past six months, she has also been taking a homeopathic remedy for ITP, and although we have not seen any dramatic improvement in her counts, she does seem to be able to go longer between WinRho treatments.

Thanks./

Hi, My daughter Emmy, is 13 years old and has had ITP for 7 months now. She responds to steroids but crashed when they tapered them. She just started 20 mg of Dexamethasone last week and in 4 days she went from 20k to 121k. We are planning on treating he again with it for a couple of months and possibly add the Rituxin. I've read that when you combine the two drugs that you get better results and even a possible remission. The side effects of the Dex are not near as bad as the several months of pred effects. My daughter had h-pylori treatment also (she tested positive twice) but couldn't finish because it upset her stomach too much. We hope to try a gain when school is out. Good luck with the Dex, let me know how it works for you.
Shauna

We have not tried the Dex pulses but I wanted to mention that over the years I remember a number of kids and adults trying this. You may want to check the "old" parents of children with ITP discussion board archives to see what information you find. I'm sure other parents will also respond here.

Good luck!

Beth - mom to Brady (age 13, diagnosed 1/18/02) and Matthew (age 16)

Hey there - my daughter is 12 and a half, and has been diagnosed for a year now. She was on varying doses of prednisone for almost 4 months, with no increase in platelets. WinRho does not work on her, so she gets IVIg every 10 - 14 days. This week will be IVIg #35!!!

Anyway, we tried the dex - she was at 77 the day she started, and two days later was at 143, and was 160 something on the fourth day. However, she crashed as soon as she stopped the dex (i.e. at 19 48 hours after last dose).

Same thing the second month -- she was lower when she started, and the count came up, but crashed as soon as she was done the pulse.

She had horrible side effects - I think she complained of everything that I read regarding side effects of the dex -- flushed, increased bleeding, irritability, weight gain, joint pain, stomach pain, sleeplessness etc. It was no fun.

On the third pulse, our hemo ordered it every second day for eight days to see if it lessened the side effects. It kind of did, but because she only took it every second day, the count did not come up very much, and was at 2 three days after the last dose.

Needless to say - we will never try dex again.

We are going to see a pediatric hematologist in Edmonton, Alberta on the 2nd of July. Until then, we will treat with IVIg to keep her count up.

Everyone is different, and maybe it will work for your daughter.

Good luck in your choice.

I've followed a lot of people over the years and from what I've heard from them, the Dex pulse can be very difficult. Every month, the side effects get worse and worse when the person stops the drug. It's hard to get through the whole six months and counts frequently crash a few days after the drug is stopped each month.

As for the articles I've read: they state that the 6 month protocol is often successful in a sustained remission and the treatment is "well tolerated" by patients.

Two very differing opinions. All you can do is try it and see.

Well I thought that Dex would work better for Emmy, but one week after being at 120k she is at 14k. I feel so bad for her, this is really starting to get to me. She is suppose to leave this weekend to play a soccer tournament in New Mexico, not sure what we will do now. Maybe give her another treatment to get her through and then try something new when she gets back.