New and question about prednisone response

Hi all,

First of all, this site and forum has been a great resource. Like most of you, I had never heard of ITP before I woke up with it two weeks ago. Woke up with petechia all over my body, went to emerg, then sent to another hospital to see a hematologist and BOOM, ITP here we go. My first count was 4000 though didn't need to stay in hospital or IVIg. Given prednisone (50mg) and one week later up to 10k. Not very encouraging when your hematologist walks in and says "i'm disappointed in the results." To complicate things I moved cities a few hours away last week and am in process of connecting with a hematologist here. Even with a referral letter with the words "urgent" emblazoned over it, getting in with a hematologist isn't a quick process. Hopefully I should hear something by tomorrow. Went to my old family doctor to get platelets counted yesterday and after two weeks of prednisone I am now at 30k.

The question I have is: is that good? I know it's not bad and could be worse, but what is a good response to prednisone after 2 weeks? The side effects are driving me nuts. The initial hematologist I saw only put me on 50mg though I weigh 85kg. Should I be on a higher dose? I read about 1mg/kg being the norm. At what counts do doctors tend to begin to decrease the dosage? I am 26 y/o and haven't had any bleeding. Most of the petechia are gone now though the big bruises are taking their time disappearing. My family doctor doesn't have much experience with this and while waiting to see a new specialist, you all are my best source of info. Thanks!

Hello Andrew!

First of all, there is a difference between 'safe' counts and 'normal' counts. A lot of the time, people with ITP might have learn to settle for safe counts. 'Safe' is anything above 30k. A lot of people strive for normal, but sometimes it's not realistic or obtainable. Not to say that you won't get there, but it might take a few different treatments to get there. That takes patience.

There are standard doses of Prednisone based on weight, but I can tell you that most doctors don't follow it. ITP is generally treated with 50 or 60 mg's to start. Some people have had much higher doses, but that is just torture. I agree that your initial response is not ideal. I'd be over 200k by this point on that dose. Some people are great responders and some take a little longer. If it is not getting you anywhere in the next few weeks, it might be best to taper off and try something else. The side effects may not be worth the flimsy response. Time will tell.

Stick with us and read as much as you can. You'll be a pro in no time.

Thanks Sandi. This site is definitely invaluable. The timing of this is just very unfortunate. At the end of July I am supposed to be embarking on a 1 year back-packing trip of Asia (I'm a big adventurer/backpacker/adrenaline junky), so I am slowly accepting the fact that things might not go as planned, but trying to take it one week at a time. If I can't go then, hopefully this will just be acute ITP and down the road away I go! Thanks for your comment and support.

Wow - ITP never comes at a good time, but I'd say you win the prize on that one. Your attitude is great though...I give you a lot of credit!

So an update. Saw my new specialist today finally. Unfortunately, I had a late appointment and the clinic was so backlogged that I need to go back tomorrow for blood results. Today the hema was surprised I was only on 50mg pred considering I weigh 87kg. While I don't know the blood results yet, today I noticed a few petechia which isn't making me high on spirits and I've been on pred for 3 weeks now. The hema says it might be hard to know if the pred is working or not because my body can handle a much larger dose.

She said her preferred initial course of treatment and the preferred treatment at this hospital is dexamethasone. She wants to see my blood results first, but she is talking about putting me on dex for 4 days and then continuing to taper me off pred. She prefers to do that than upping my pred dosage and then tapering.

Has anyone mixed the two? Any dangers of doing dex and pred people have heard of? Also, I'm not that familiar with dex. I did some searches on the forum and I see some people prefer it to pred while others despise it. Any questions people think I should be sure to ask before agreeing to try dex?

THANKS!

Geez - I have a very mixed reaction to this. I can't say what a higher Prednisone dose would do for your counts, but whether or not your "body can handle it" is another story. Sure, a body can handle a higher dose in that it won't kill you. But it might really wreak some havoc on you as far as side effects. I'm wondering if it is worth the effort if you are not getting a response from 50 mg's, which is a respectable dose. There was a guy on here who did 2,000 mg's a day. I think I would have jumped off of a bridge.

As far as Dex, it is a much more potent steroid than Prednisone. Sure, the two can be mixed, but again, I couldn't begin to imagine the side effects. You just might get a response, but be prepared to strap in for the ride. Dex can be tough, but since it's only taken for four days, there are really only about 8 tough days to get through. The few days when you stop it can be harder than the 4 days you are on it. Withdrawal. Also, a lot of people experience a great rise with Dex, but that can be followed by a fast drop. For some it can keep counts up, but not others.

How are your side effects now?

I've done both Pred and Dex simultaneously a couple of times and do not recommend it. It is just no fun.
Dex for me has been a 'quick fix' to get counts up so a maintenance drug (like Pred) could take over.
I absolutely HATE Dexamethasone....far more than I hate Prednisone. Dex usually makes me 'angry'. But I can deal with 1-2 week pulses to boost the count now and then. Of course, my count has always dropped right back down over a few days if I don't take something besides Dex.
Dex is hell to take while working....even worse to take when playing guitar and singing all night in a biker bar.
.

Thank you for the insights and own personal experiences. Sandi, like you said, because I wasn't responding too much with 50mg after three weeks, I was wondering like the doctor if an increase would do much good and would instead just prolong the process. On friday i got my count and I was at 80. While improvement, still not where the doctor wants me at after 3 weeks. So yesterday I started a pulse of dex (40mg x 4 days). After the fourth day, I go to tapering the pred. Got me on a quick taper of only 16 days (4 days x 25mg, 4 days x 15mg, 4 days x 7.5mg, 4 days x 5mg.) Has anyone done a taper that quick? Or any concerns about that? My new hema really doesn't like pred. I read a study in "Blood" which found that quick tapers were just as effective as long tapers though I think they defined short tapers as 6-8 week.

I had been sleeping fine with pred, but the first night on dex I woke up at 4am and couldn't go back to sleep. Thanks for all the heads up about dex. I was at a bbq with friends last night and apologized for being hyper as ever and talking a million miles a minute. Already felt that way on pred, but much more on dex now. Thanks again for being so great with offering insight and answering questions.