prednisone expert anyone??

Hi everyone ) For the last year and a half my daughter has been dealing with this mess. She usually drops very low when she's sick so thats when she gets a treament. Long story short. She just had a short prednisone taper. Never did it the particular way before but during the end of the taper she got a cold and a week later a stomach bug so her platelets fell to 74,000 while on 5mg prednisone. Then after the prednisone she was at 117,000 and then got the flu last weekend and the low we caught was 58,000 but I'm positive she dropped lower with the fever. Just didnt want to poke her again so soon. Anyway, its been almost 3 weeks since stopping prednisone and yesterday her platelets were at 240,000 with no treatment and her platelet size is 7.4. So they arent all new.The reason for the count was a slight fever but the hemonc wanted it since the flu had temporarily trashed her wbc count. I know itp can just "go away" and have been hoping for that every minute of everday. I really dont know what to think right now. My hopes are up and I hope it's not just another rollercoaster ride. Just wondering if prednisone can cause a remission or if this is what that even looks like? Or if prednisone could still be working 3 weeks later after all the drops shes had in counts. So confused. Thanks in advance for any replies.

Enjoy that count! There is really no way that anyone can know with 100% certainty in these things. But, my guess is that it was most likely the fever that triggered the rise in her counts, and not the Prednisone. Fever is a natural function of our immune system, and has great benefit. Being able to mount a high fever is a sign of a healthy immune system, one that we want to see, particularly in children. If kids are never allowed to experience their fevers naturally (due to giving fever reducers), they tend towards developing more chronic type diseases. It's important in ITP patients to not try and lower the fever. Almost all of the typical fever reducers (Tylenol, Motrin, Aspirin, Ibuprophen, etc), have thrombocytopenia listed as one of their side effects. So, when doctors say that ITP is triggered by a virus or infection, it might actually be as a result of giving some sort of medicine for fever reduction or other symptom.

It's very common that autistic children's symptoms will go away when they have a high fever. Perhaps it's a similar phenomena with ITP

No matter, hopefully you have seen the end!
April

I don't purport to be a prednisolone expert, but I think that the good count could be down to any or all of the things you mentioned. You also mentioned that your daughter had been fighting a virus, and for some reason this sometimes seems to raise counts in some people (including my son). Just enjoy it!

Thank you both for your replies. I agree with the fever reducers. I don break a fever unless she's absolutely miserable. I think fevers are good for you as long as the infection isnt anything major. The only thing is is that fevers always make her counts tank very fast. Like overnight. As well as illnesses. I have changed some things in her diet lately. The two things I have been focusing on is getting her to eat foods high in zinc (good for immune system) and iron since her ferretin was 12. Docs say 12 is normal but They are kinda wacky at times about vitamin and mineral ranges. I wish we could enjoy these counts. she is currently laying down. Headache, sore legs and tummy ache. Go figure. Good counts adn doesnt feel like jumping around. I seems like every time (3 times now) they give her a short burst of prednisone she gets reset at higher counts. Hoping that's the case anyway. I've also been giving her vitamin d and b12. her vitamin d was 25 which of course the docs say is normal:blink: and her b12 was in the high 400's. Again, not great but since the lab says normal it must be. lol. Her wbc was good but her neutrophils were high and lymphocytes low so they think she got another viral infection afer the flu. So confusing. Time will tell. Does your son drop in counts when he's sick or always go up? she is a consistent dropper. Thanks agin and I hope evryone has had a nice holiday weekend.

Some illnesses don't seem to have any effect at all and his count remains at his usual 10-20K. I think significant injuries make his count go down. But sometimes after a virus, his count goes much higher - sometimes even nearly "normal"! The effect lasts a week or so and then drops again. The best counts he's had have all been about a week after a virus accompanied by a temperature.

Getting a fever for him then is like getting a treatment without all the nasty meds )It's just too bad they cant get descent counts when they feel well. I have been reading on his site for a long time now and I see your posts. I dont just post often. I remember a while back he had counts in the 50's or so after an illness. The only thing different this time that the docs were saying was her platelets were exactly at the # they were before all itp ever began and the size of them also. It appears at this moment they arent being attacked. I sure hope it stays this way. I'm hoping the prednisone, vitamins, and all the illnesses that go with kindergarten have reset something. Theres been so much immune system confusion for her lately. I think the worst part of all of this is one day she can play rough and the next she cant. That has to be hard on all the kids. Playing is their life. Is your son going to be getting any treatments?

Yes, Prednisone can cause a remission. I've had two of them from Prednisone, but relapsed after a year or two. I have seen others get remissions from it that lasted many years. The only way to know is to see high counts for a long period of time.

Thank you Sandi.That's what I am hoping for ) Time will tell. I dont know exactly how prednisone works or how long it is in the system after you stop. She was on 5mg for a week and 2.5mg for the last week and stopped on the 3rd of february. Then with the flu she dropped to 46,000 after stopping it so I'm not real sure where in the world this count came from but I am welcoming it. The size of the platelets more than the count is giving me hopes since her mpv is 7.4. Havnt seen that since before the itp came. How long were you on prednisone to get the 2 remissions? Emma took it for 3 weeks but responds super fast with counts high in 3 days.

I made it sound like her starting dose was 5mg. It was 40mg for 7, 20 for 3 days, 15 for 3 days and so on.

OK, you've made me want to go and look up some of my son's old blood test results now - I don't think I've ever looked at MPV, can't remember it being abnormal though.

Just to answer your question, my son has been through the last 3 years with remarkably little treatment - 3 weeks of prednisolone which didn't do much for his count right at the beginning, and more recently an IVig treatment which gave him the headache from hell so we won't be repeating that in a hurry!

To be honest, I would prefer him to stick with watch and wait as he seems to do fine with a count of 10-20K. Kids in the UK aren't very often treated for ITP and the outcomes are pretty much the same as other places where they do treat. I would prefer my son to have a less active lifestyle and not treat. However, his current (mostly unauthorised) level of activity and, even more, the things he aspires to do are not compatible with a count of 10-20, so we are considering treatment! I think that the options the consultant is talking about are rituximab and whatever promacta is called in the UK. I am still hopeful that it will just go away for him all by itself......

I hope your daughter is feeling better now.

Ali

I agree with not treating. We dont very often. IVIG gave Emma the worst fever for 2 days and she was just done. It brought her counts up though and seemed to calm things down some. She had winrho 3 years ago at a count of 5,000 and its nasy stuff too. For her anyway. She shakes really bad so they have to give her benadryl and then a fever and high hear rate. Shes had that twice. No more of that. But the first time she had normal counts for a year. The second time it worked but no great. Prednisone seems to be the easiest on her. So we do that if she drops. Her docs treat at 30,000. Normally she sits at descent #'s but with illnesses drops. So we dont treat very often. I think if hes had counts that low and handles it well I wouldnt worry much except for about how he feels about doing activities. Thats the worst part of this platelet munching nightmare. Mine (knock on wood)hasnt had bleeds either. In fact they didnt believe her count was 5,000 the first time. She had no symptoms until they tried to give her a blood test and she broke out in those horrid dots from fighting. She fought so hard I almost had a broken nose from her head. lol.. Did they pretreat your son before the IVIG. I heard something about being really hydrated helps with the infusion. That rituxan stuff sounds like a good idea. I heard also with that that they found that one dose can work as well as the 4 weekly. Have you tried the dexamethasone? As far as the mpv(platelet size) hers normally is within range. Sometimes slightly higher but before any of the itp they were always on the small end or even smaller. Since itp I have never seen them go below 8. I can literally watch the size change if shes dropping they get bigger. If she is going up from treatment they get a tad smaller. If shes stable in counts hey are bigger but dont change in size. I think I look to deep at this stuff. lol She had 3 cbcs before any of this ever sarted and her count was always in the low 200's. So thats where she sat. I am just hoping this is over with or she gets a break. have you decided which of the treatments you are going to give a go at? We were offered nplate but that just means a shot every week and more blood tests. Not much of a break Either way, I hope one of them works for him. Sounds like he needs to release some energy without worrying about the doc getting mad or getting hurt. Hopefully someday all these kiddos dealing with this will get better.