Platelet count go up when weaning prednisone?

Hi there, another question to those of you with experience! I had posted earlier but for a short summary I have had this "ITP thing" for about 7 weeks now, had platelets at 16 got IVIG and started on prednisone at 70mg. Stayed on that until last week. Initial response seems to be to the IVIG which brought me up to 200 for a few weeks and then stabelized in 50s. Hematologist last week told me with this prednisone was not seeming to work so could taper and expected platelets to drop. However- I did taper down from 70mg to 60mg as direct and platelets went from 59 to 72 last week. I know that isn't much of a rise but it is some, is this too insignificant of a rise to be excited about (I am probably reading too much into this slight rise)?

And secondly, did anyone else find their platelet levels rose with decreasing prednisone? I was expecting the crash and the call to go for IVIG and guess I didn't expect it to stay stable never mind go up a bit...

I don't think the drop in Prednisone nor the rise in platelets was significant enough to make a difference either way. Platelets are funny that way....they just do what they want sometimes, plus there is a margin of error.

You will know more in the next few weeks. See what happens then.

Thanks Sandi! In my head I was pretty sure that was the case but just getting my hopes up that maybe it is all mistakenly related to the prdnisone . Not quite used to this roller coaster yet so think I needed to hear that! Am overly anxious i steadof patjent s well as hema has advised me to skip my planned Disneyland trip with my kids in 2 weeks as too unstable (and I am Canadian going to Canada etc... Health insurance coverage nightmares etc...) So I think I needed to be talked out of getting my hopes up I could go after all! Head and heart in different places!

Thanks! Will try keep patient and as you said, time will tell! Just coukdnt help getting my hopes up but need not too i know! Thanks for your response! Keeps me realistic!

After I had IVIG and was tapering prednisone my counts went up a little bit. I respond really well to both IVIG and prednisone. But after the taper and the affects of the IVIG wore off my counts went down quickly.

But, you never know what can happen. Your counts could even just stay where they are and that is a good safe range. Glad you are tapering from the prednisone. Hope you do okay with the taper.

You were advised to cancel your trip? How sad! Your counts are good, but having an insurance issue wouldn't be so great. Can you do an IVIG or something before you go? I'd think there is something you could do to get a bump up for a week. I'd ask the doctor about that!

Thanks Dru and this taper is pretty terrible, being on prednisone has been pretty terrible but man this tapering is causing a lot of muscle pain and aches and lots of emotions The not getting to be with the kids in Disney sure probably doesn't help but much more then that! Soooo emotional but seems tapering can do that? Just keep telling myself a few more months and will be gone! How did you guys manage all the emotions and side effects of the taper? Or the sleep issues? No I sound like a real whiner venting about it all!

And Sandi I had asked my hematologist about going, my family dr had thought it would be fine if I wasn't doing the roller coasters etc and was going more to be with the kids and had said I could likely slow the prednisone taper and perhaps get ivig before but my hematologist did not consider that at all. That was last week before tapering though and I think she was expecting a quick drop with the taper, she booked me to come back in 2 weeks "if we have met in the er" so maybe worth a try asking again friday when I see her... She had some previous experiences she said with people having issues with insurance while travelling and long legal battles over the money or bring denied the treatment they needed to be stabelized while away (specifically the ivig I think). I do have travel insurance but she said even though they say it covers me she felt if I ran into trouble it would likely not cover ivig while away or spleenectomy (which she seemed to say would be right away with platelet drop). And now that she has declared me too unstable to go and advised against I am not sure I could get my coverage for it anyways... Preexisting is fine as long as Dr says stable but now if she won't then not okay.

So plan to ask again but am doubtful and trying not to get any hopes up! But of all the trips in life to miss I must say Disneyland with your kids is just not "fair"! But I guess life isn't fair and everyone on these boards knows that! So I shall stop my whining!

You're not whining. You're upset about a situation that you have every right to be upset about! There is no reason you would HAVE to have a splenectomy if your counts drop, here in the US or anywhere else, so I wouldn't worry about that. A splenectomy is never an emergency necessity for ITP.

I would talk to her again about getting counts up to make the trip. That's what most people with ITP do, and don't have to cancel trips most of the time. With some planning, you might be able to arrange something. It would be a shame if your hemo won't work with you on this. I don't think your counts are so much the issue here, the insurance might be though.

Prednisone will cause the mood swings and crying, yes! It drove me nuts too. I put myself in time outs a lot to get through it. Spent time in the rest room at work to cry it out and spent time alone in my room at home to cry it out. When it got that bad I just separated myself from everyone for a bit and felt better afterwards. Noise and confusion sent me over the edge. Quiet always seemed to help. Doing that and trying to find the humor in it all were the tricks that got me through it. Oh, and constant self reminders that it would end at some point. It will!

It is good to vent about it, really, you are not being a whiner, it is awful! Plus you were on a really high dose for a long time. The most I have ever been on was 60 mg and that was for 4 days. I'm tapering now, just went from 20 to 15. I get emotional or upset over stupid things that would not bother me at all normally. I do try to limit stress as much as possible (not easy!) Sandi's time out idea is good and I do that too. The muscle aches are bad. I do find some stretching helps and also hot packs...I have these pillow type things that go in the microwave.

Will your doc give you something for sleep? I am taking ambien and sleep well. Getting good sleep helps a lot.

Hope you can talk to your hema about going on your trip. My doc has always worked with me regarding trips. I just saw her today and we made a plan for my trip to see my daughter in dc next week. Right now my itp is in remission but I have hemolytic anemia. I have way too many platelets and not enough red blood cells. But I am going to see her the day before I leave and we will adjust the prednisone dose up if needed. She also told me to call her if I have any issues when I am gone. When I get back we will talk about IVIG or rituxan.

Well still no Disneyland but life will go on, the kids will go and have fun and then when they are back it won't make me so sad! And super excited for them, cute to see them so excited...

But ITP wise my platelets have stayed pretty stable in the 60s with weaning the prednisone, Down to 40 mg from 70 mg now so some success and met for surgical consult for splenectomy today. STill awaiting the cytogenetics from the bone marrow biopsy though, that is crazy long to me but they assure me it takes 4 weeks to grow out. Which makes sense but my biopsy was May14, so a little hard to patiently wait...

This ITP thing sure tests your patience doesn't it? Ah well, sounds like surgery should be a bit more then 6 weeks away so that is good news too... Not that much longer to wait! Will just cross my fingers I am one of the ones it works for then...surgeon says works "best" for those who responded to Ivig and prednisone and the Ivig worked for me but not sure on this prednisone so not sure if that is good news or bad news or just indifferent, only time will tell I know, I am sure we all wish we knew our own magc answers...

You can't go to Disneyland and just watch because your platelet count is in the 60s? I think my doctor would have had an argument from me!

Know we are all different - I moved from Colorado to Tokyo 2 months after diagnosis, on 60mg of prednisone, not knowing if I'd have a hematologist or if so who. Then from there we moved to Hong Kong. We flew back to the States for home leave, we flew into China, Thailand, Egypt, Italy, the UK, Singapore - never knowing what my platelets might do.

I really am sorry you are missing out on the trip, maybe you can have a "redo" sometime down the road!

Wow - I'm so sorry you are not taking the trip. Seems there should be some way to work it out!

Response to IVIG and Prednisone does not predict splenectomy success. There were articles long ago that stated that, but they have been discounted. Nothing can predict splenectomy success.

When were you diagnosed? The current recommendation is to wait at least a year before considering splenectomy, and some ITP specialists are not using it much as a treatment any more. Make sure you do your research first!