Diagnosed a week ago, numbers skyrocketed

I was officially diagnosed with ITP a week ago and my count was at 11,000 so they immediately started me on 20 mg of prednisone twice a day. I went for my check today with a new doctor and they said my count was at 470,000. The new doctor said to drop to 20mg once a day and come back in two weeks for a CBC.

Has anyone else had numbers jump so drastically, and what were your later results? I know everyone's experience is different, but I haven't found any one else with a similar situation and was looking for a little more insight.

Welcome to the group. It is not uncommon to have a dramatic increase on numbers when on steroids. The problem is they usually fall as quickly as they rose when you decrease the steriods. I kep tthinking I was 'cured' when they wnet up only to be upset when the steriods decreased and so did the platelets. Good luck on your journey.

Counts can go up quickly when one is on Prednisone, but you've had an exceptionally good response. 40 mg's isn't a very high dose for ITP; usually it starts at 60 or 80 a day and can take longer than a week to get that high. How long were your counts down before you started Prednisone?

Tapering the dose by half can lead to a crash. A slower taper may have been better. Most people are on Prednisone for months. You might get lucky since you responded so well so fast, but only time will tell. My counts usually would get to about 350 after a week of 60 mg's (for reference).

Keep us updated. I'll be wondering how you're doing!

Late October was the first time I had blood work (done because I have had stomach issues), and my count was labelled critical at 72 on my lab results. It was just a walk in clinic and they didn't mention it so I mentioned it to my mom who made an appointment about two weeks later with our primary care doctor. Then my count was 39 and stayed for about two weeks. Finally got in to see the hematologist another week and they were 32. He said they like to try and keep people of the prednisone if possible, but since mine had obviously been dropping he wanted to go ahead with treatment.

Then when I went back the next week (which was a week ago) they were down to 11, but I have also had a virus so maybe that contributed to the drop? I know the dose tends to be measured off weight, and I'm only around 110 pounds so I guess that's why.

ITP can sometimes be acute and resolve on it's own, especially after an illness. With any luck, that is what happened to you. If you hadn't had that first CBC, you might have never even known it happened.

72 is not critical by any means. Odd it would say that.

Update on my situation
Went back for a CBC Jan 27 and dropped to 285k, then went again Feb 8 and had no change so the doctor decided to drop me down to 10mg of prednisone a day to try and start tapering. I go back in a month and he wants to try and have me off completely over the next two months or so.

I felt miserable the first week I was on the prednisone, but got better dropping it to 20. After going down to 1 I had some crazy anxiety, but wasn't sure if it was from the dose change or stressful issues I'm currently dealing with. What are other people's experiences with this? I feel like I haven't been on it as long or as high a dose as most people I've seen, but I'm a fairly small person so a lower dose may affect me more like a higher dose would someone else?
I've also had some pain and achiness, mostly in my legs and back ever since I started. Though I started the prednisone right before the start of my spring semester and I'm in a class where we do yoga and pilates and thought maybe that could be the cause of some of the pain, but I wasn't sure.

Tapering Prednisone can bring on a whole set of other side effects, weakness, fatigue, muscle pain, joint pain, depression, etc.....

Even though you weren't on it for very long, dropping the dose by half is extreme and probably would cause withdrawal symptoms. Many people think that tapering is worse than the higher doses. Hopefully, he tapers you down more slowly from this point, at least no more than 5 mg's every few weeks.

lhall8 wrote: After going down to 1 I had some crazy anxiety, but wasn't sure if it was from the dose change or stressful issues I'm currently dealing with.

I assume the 1 should have been 10.

Prednisone is a substitute for the hormone cortisol, which normally increases to help deal with stress. Just when you needed more cortisol, you dropped your dose of prednisone, so the crazies were probably an interaction of the dose change and the stress.

To add to what Sandi said, once you get down to 5 mg, don't just drop to zero. It is especially important to taper VERY slowly at this point, as this is where adrenal insufficiency becomes critical.