Steroids

I have a question for all of you out there whose kids have been on steroids for ITP or who themselves have been on steroids for ITP. My son, 15, was diagnosed with ITP on September 13, 2011. He had WinRho (had a horrible reaction and it didn't work), and two IVIG treatments (only effective for about a week before platelets dropped to 7,000 again). Finally, the docs put him on steroids - 120 mg per day to start. He has been on steroids for about 3 months now and has been consistently and slowly tapering off the meds, and so far, his platelets are still in the normal range (last count, last week, 191,000). As of today, his hematologist is stopping the steroids completely. My question for you more experienced out there is what are the chances that his platelets will continue to be in the normal range once the steroids get out of his system? I have learned that every person with ITP has a different story and a different experience, but I wonder if platelets typically drop during the steroid taper, or not until the meds are out of the system? Just wondering how high to get my hopes. Thanks, in advance, for any advice and opinions you may have!

Page - typically, people experience a drop during the taper...it could be slow or fast. While it's a good sign that his counts have stayed up, there is no way to know if they will continue to stay up.

What was his highest count on Prednisone and have they been slowly declining or holding steady?

Thanks for answering me, Sandi. His numbers shot up from 27,000 to 357,000 after two weeks of 120 mg of prednisone. They dropped consistently as the steroids were tapered, but remain in the normal range. They have fluctuated between 179,000 and 191,000 as the steroid dose has decreased to only 5 mg every other day. Glad to know that most people who drop on steroids do so during tapering. I am well aware that there are no guarantees, but remain hopeful that ITP is behind us for now....I will keep you posted - he hasn't had steroids since Sunday night and won't take anymore unless his numbers plummet again. We are due to check his numbers in two weeks. Thanks again for your insight!

I found mine did drop a little when i was tapering, but not enough to be concerned and put the pred back up. I hope everything goes well and they stay up after the pred is fully out of his system.

Thanks, Angel, for keeping me realistic about the idea that we may not be out of the woods quite yet. Only time will tell. Hope things are going well for you.

Hi Page,

I am interested to hear that the steroid thing seems to have worked for a child. I don't look ultra carefully, but I don't think I've seen it on the board before.

How much is 120 mg in relation to your son's weight and how much did he taper by each time? When my son had steroids, he only had 1mg per kg of weight, and they didn't appear to do much - maybe 20-30,000 better count max, and it went down again immediately he started to come off the tablets. But reading your post, I am thinking maybe his dose wasn't high enough. I am interested because my son seems to be a bit low on his count at the moment judging by symptoms and he has been for a while. He had no side effects from steroids so they would be a reasonable thing to try again.

Thanks, Ali

Hi Ali,

My son is 15 years old, about 5 feet 8 inches tall and weighs about 160 lbs. He was on the Pred dose of 120 mg a day for two weeks and his platelets shot WAY up. Then, the docs cut the dose in half for two weeks, and half again for two weeks, etc. until he was down to 5 mg every other day. His platelets were checked every two weeks and they did come down from 360 or so to 189 but have stayed in that 190 range for several weeks (he was on the 5 mg every other day for about a month). Still no guarantee that they will stay up once the steroids are out of his system, but he has enjoyed these past few months without worrying about how low his platelets are. I will say, though, that the steroids at the high dose caused him to have terrible insomnia and he felt shaky and had "out of body" feelings. Not fun at all! He was begging to stop the steroids after the first week on that dose, but we got through it. Once he tapered to 30 mg a day, he felt much better - although has felt REALLY tired through the whole steroid adventure. We are hoping that he gets some energy back and keeps his normal platelet count once the steroids are out of the system!

How old is your child? What has he/she been through treatment-wise so far?

Page

Thanks for the info Page

Dougie is 12, maybe about 90lb (its ages since he's been weighed and at the hospital they do it in kg!), and he's had ITP for nearly 2 years now. His count has been all over the place, but for the last 6 months has been in the 30s or lower - he's had a load of bruising the last couple of weeks. He goes back to the haematologist in mid February and because his count always seems to be on the borderline where I think I should be stopping him doing things, I was going to ask about treatment. We live in the UK, and kids here quite often don't get treated for ITP, which I probably agree with because none of the treatments I read about seem nice. However, we tried steroids briefly before and they didn't seem so bad, so I think I might at least ask about a higher dose and a slower taper - they can only say no can't they!

I've got my fingers crossed that that last 5mg doesn't do anything bad for your son's count - I'd be interested to hear....

Ali

Thanks, Ali, for your positive thoughts about Ashe. I have heard and read about how kids in the UK don't get treated for ITP, but I can't figure out how Ashe would survive without treatment. His platelets have been as low as 7,000 several times. He is such an active 15 year old boy (he played basketball, baseball, ran cross country etc. and has broken several bones and had concussions and stitches). It has been really hard for him to accept the change in lifestyle when his platelets were so low. Can Dougie play sports or be as active as a 12 year old boy typically likes to be when his platelets are that low? How can you tell when to curtail his activity level? Maybe we worry way too much here in the US about injuries with low platelets....Ashe has not been a bleeder even with numbers as low as 7,000, so he may not be at risk for a dangerous internal bleed at all. I wish every day that I had gotten ITP instead of my son. I wouldn't have to worry about treatment because it wouldn't be a big deal for me to cut down on my activity and be careful.....Let me know what Dougie's doctor says about steroids. I'll keep you posted on Ashe and if his platelets stay up even as the steroids get out of his system completely. Please keep me posted on Dougie and if his doc says the steroids are worth it.

I'll be thinking of you,

Page

Page,

I am a natural sloth, so I would suit ITP a lot better than my son too!

Dougie has a nearly normal life. He wears a bike helmet on his bike, he doesn't head the ball in soccer, and to his great disgust, he isn't allowed to play rugby at school. Other than that, he has much the same life as his friends, even when his count is lower. He plays basketball, football, cricket, rounders and hockey. He goes to climbing walls and BMX tracks. His consultant says that he is happy he does pretty much anything as long as it is properly supervised. I can't pretend I don't worry, but I try not to let it stop him doing things. I just make sure that the teacher or coach knows that he has the problem in case there is an accident. Its taken us a while to reach this degree of calm, but I think we are now at a point where ITP is just a small part of Dougie's life.

Fingers still firmly crossed for Ashe,

Ali xx

Wow, Ali! That is such great news! Do the docs worry that Dougie may have a spontaneous internal bleed if he gets below 20K? It seems Ashe's docs do.....but it makes me feel so good that Dougie is able to do just about anything he wants as long as he's supervised! I really hope that ITP is over for us, but if not, Dougie's story makes me feel much better. I have to ask, which of your kids is jumping in the water off the cliff? That is such a great picture! Thanks for sharing your experiences with me - since we've only been about 4 1/2 months into it, I am a true newbie!

Page

The nurses at the local hospital are constantly worrying about bleeding, but the haematologist at the children's hospital doesn't - and the evidence seems to support him as it hasn't happened yet. We've specifically asked him about two adventure holidays Dougie went on when his count was around 15K, and he was fine with it. So now we don't restrict Dougie until his count is under 10K, and we can do that easily because his bruising is different at that count.

The photo is Dougie in Corfu (Greece) last summer. It took us ages watching the locals jumping before we let the boys do it, and even longer for Dougie to pluck up the courage to jump off the top!!!!! I've got some lovely photos of that holiday - very photogenic place!

Ali