Tapering off Pred and getting ok numbers questi ??

So Im tampering off the prednisone and down to 30 mg... ( diagnosed on Feb 10 and started at 140 mg at my lowest count 25,000).. my numbers have been pretty good ..when I was at 70-60 mg.. I was ranging between 50-58,000.. for about 2 1/2weeks.. then last week at 50 mg.. they jumped up to 93,000... this week they where 72,000...( not sure if my period had anything to do with the drop). My question is has anyone had increases in numbers and they continue to go up as you taoper off the prednisone.. could this mean it may be a one time episode?? ( I know wishful thinking..lol)

Goo - no way to know. Only time will tell.

My counts fluctuated when I was on Prednisone, but remained in the normal range since one week after diagnosis (count of 1) in October 2011. I got 2 rounds of IVIG and Prednisone twice a day. My count skyrocketed to 404 the second week, then steadily fell to 150, before bouncing back over 200 and continuing to fluctuate. My lowest count was during my second week of antibiotic treatment to eradicate H Pylori. I tapered Prednisone fast at first. Sometimes my count dropped when I tapered and sometimes it rose. I got down to 10mg/day one month after achieving a normal count, then tapered very slowly over the next 3 months, dropping dose and frequency until I reached 2.5mg every third day. When I went off Prednisone completely a month ago my count fell from 236 to 199, but bounced back up to 230 the next time. My last count was 264, the highest it's been since the initial jump after diagnosis.

Another thing I look for on the CBC is the MPV (mean platelet volume). A steady number that is not elevated can be a sign of good platelet survival since the younger platelets register a higher number and the older platelets register a lower number.

Dave, Is "Platelets, morphology" the same as MPV? Usually mine are labeled "Large," but once or twice they came back "Huge." I don't have anything labeled MPV on my CBC results.

Karen, they are different, but related. The MPV is a measurement of the average platelet size done by the machine. The morphology is a description of what the platelets look like on the slide. I didn't get a MPV when my count was 10 or less, but I did get a platelet morphology report. When my count was 42 the day I got out of the hospital I had a high MPV and a morphology report describing an occasional large platelet. When my count became normal, so did my MPV, and I no longer got a morphology report.

Thats awesome Dave.. glad to see your having good numbers... so it sounds like your ITP was acute??? How about the side effects of being on the prednisone for the 6 months ??? if any did they go away yet?? I had alot of bad side effects in the beginning when I was on the large doses...( headache, insomnia, heartbeating fast, spikes in blood suger, high blood pressure, acnes, weight gain, stomach issues, anxiety,) most have gone away but still have a few .. I did have the muscle cramping when I jumped down 20 mg from 60 to 40mg.but they only lasted about 2 days.. so I learned my lesson not to taper to fast.. I just want off this med... so Im at 25mg and started tapering down every 5 days down 5 mg... I think when I get to 20 mg.. ill slow down like you did and try to taper slowly over 3 months and see if i get the same resulrs you did.. I haven't had any other treatment for my ITP but the pred... Im really hoping this was a one time episode.. thanks for the info...

Only 5% of adult cases of ITP are acute. If it never comes back I will be thanking God. Prednisone can induce a remission that can last an indefinite amount of time. Every bit of excitement I get out of life is a blessing and every day that my count is good is a new blessing from God. I have become religious when I wasn't before.

As for the side effects, I had night sweats and woke up freezing the first few days on Prednisone, but never had any other side effects. Once I started tapering, the sweats reduced in severity, then went away. My stomach improved while on Pred, but I credit that to the Omeprazole I took with it, then the eradication of H Pylori. I've been back to normal for several months after a year of stomach issues. I haven't taken Omeprazole since early January, and have only needed Tums once since then. I was on a significant amount of Prednidone for a month, then a small amount for another 3 months. I hope others can follow that pattern to get a remission, but I really hope H Pylori was my cause. There is a much better chance of being cured if it was H Pylori. Prednidone remissions seem to be fragile.

I was diganoised in January and had to have platlettes, and was also put on prednisone and every time they would taper me my numbers would drop. I ended up having my spleen out last week. I am actually home for the next 5 weeks. my question is I was so tired before and thats why I was going to the Dr becasue I was tired, then the bruising came etc. I am still real tired. does anyone know if that goes away?

Hi Taksmom, a lot of people get tired with ITP, I known I do at times.It seems to me that when my haemoglobin is low I feel it most. If I take Iron tablets and the haemoglobin comes back up the symptoms of feeling tired all the time reduce and eventually go away.