tapering down, platelets up? & Final Taper method?

This seems unusual to me: My platelet counts at 60mg got me up to 292K. I tapered to 40mg and my count went DOWN to 197K. That seemed about right. Tapered down to 30mg and as expected my counts dropped again, but not as significantly as I expected - 184K.

Then I tapered again. To 20mg. Platelets jumped to 239!

Then I tapered again to 15mg. Yesterday I got my count and it's the highest since being diagnosed: 300K.

Weird. I'm not complaining. I'm happy, but trying not to get TOO excited, I feel the tell-all will occur when I am completely off. Has anyone else had this sort of experience?

Also my doc is recommending that I go 15mg prednisone every other day. And take nothing on the intermittent days. Does this seem safe? I wonder about that. So far, still no side effects or withdrawal effects have been felt. But I think if I feel anything, it will be now!

Thanks

I've done every other day tapering during my pred journey - I was on 20 a day early on, and started tapering every other day. It was 20,15,20,15,20,15 for a few weeks. Then 20,10,20,10,20,10 ... I never got to the taking nothing on one day because my counts were not high and pred does not really work that well on me.

That being said, I've also read a lot about every other day tapers, it's not that unusual. What I've heard (I could be wrong) is that it helps your thyroid kick back in faster.

(Wouldn't that be nice ... still struggling with my last taper from 4 to 3 1/2 a month ago.)

Mark:

The rule is: everything and anything can happen with counts. There is no way to predict. I've been at 60 one week and at 200 the following week with no treatment at all, you just never know.

Alternate day dosing works for some, not for others. Some people felt better doing it that way. I usually felt withdrawal begin almost exactly 24 hours after my last dose and would have to take it.

(I believe it's the adrenals, not the thyroid)

Well it's been 37 hours since I have had Prednisone and I feel no different. But I am just about fully expecting to wake up and barely be able to move my legs. I have a 6 mile trail run at 6:30 AM, I sure hope I can run!

I called the doc again this AM feeling unsure about this tapering method. He offered me to just go down to 10mg every day instead of 15 every other day. After some thought, I decided that 15 every other day makes more sense and decided to try it.

As for my platelet counts go, I am going to continue to try to figure them out, even though Sandi says that's impossible. Merely because I am starting to think it's interesting and I like wondering what affects platelet counts. Is it really the prednisone? Is it my diet? My workouts? I understand that they are unpredictable, but seems to me that something causes the fluctuations. I'm inquisitive by nature, and I can't help it, I will always try to figure them out.

I also registered with this ITP registry in Oklahoma City who are going to study me for the rest of my life. I get to be a case study. I hope I become a good one and not the kind you read about that scares you!

Mark - if you ever figure it out, be sure to let me know. I believe it all has to do with antibodies and how hungry they are that day.

That sounds like a pretty good theory. I will let you know when I figure it out.

wow, Mark your body really responds to the medication. The highest my counts ever got even with 80 mg, was 234. That happened once and didn't last too long. But wow, I can't image 300. I'm like you I've tried to log and track my dose, side affects, plt drops, variation in plt drops, etc. I'm an engineer and that's my nature. With all my charts and tables, I was able to find some interesting results. I encourage you to keep your logs, it may help you in future to better understand the treatment or remember what you have gone through as you relate this to others.

In case you are interested, here is another personal study you may want to do to add to your personal info. I ask my doctors if they could look at my medical history, and find if I've ever had a cbc test done. I was hoping to determine what my counts were at some point in time. Based on one test, I know my counts were in the low 200's about 10 years ago. This gives me a baseline of where I might have been assuming my counts were stable. Then i ask my closest blood relative (my parents and sisters) if they could request cbc blood work from their doctors. And they did, interestingly, both of my parents counts are in the 190's range. Normal but on the low end. And I know that one of my sister's counts are also in the 210's range. My theory is as follows: if plt counts are hereditary then i'm predisposed to having counts in the 190 - 210 range. Unless medicated, my counts will never reach the 300 as an example. So like i suggested early, if you haven't already, see if you can find your baseline and what your family member's baseline number are so that you can conduct your own personal study. And if there is any accuracy to my theory at least I know where I'm suppose to be, and I'm less shocked that they didn't stabilize at 234.

Mark, how long did you stay on each dosage before tapering? How often are you tested? Karen R

michel wrote:

wow, Mark your body really responds to the medication. The highest my counts ever got even with 80 mg, was 234. That happened once and didn't last too long. But wow, I can't image 300. I'm like you I've tried to log and track my dose, side affects, plt drops, variation in plt drops, etc. I'm an engineer and that's my nature. With all my charts and tables, I was able to find some interesting results. I encourage you to keep your logs, it may help you in future to better understand the treatment or remember what you have gone through as you relate this to others.

In case you are interested, here is another personal study you may want to do to add to your personal info. I ask my doctors if they could look at my medical history, and find if I've ever had a cbc test done. I was hoping to determine what my counts were at some point in time. Based on one test, I know my counts were in the low 200's about 10 years ago. This gives me a baseline of where I might have been assuming my counts were stable. Then i ask my closest blood relative (my parents and sisters) if they could request cbc blood work from their doctors. And they did, interestingly, both of my parents counts are in the 190's range. Normal but on the low end. And I know that one of my sister's counts are also in the 210's range. My theory is as follows: if plt counts are hereditary then i'm predisposed to having counts in the 190 - 210 range. Unless medicated, my counts will never reach the 300 as an example. So like i suggested early, if you haven't already, see if you can find your baseline and what your family member's baseline number are so that you can conduct your own personal study. And if there is any accuracy to my theory at least I know where I'm suppose to be, and I'm less shocked that they didn't stabilize at 234.

I like the logs. I will def keep it up. I log everything and have always been like that. I log my body weight, financial profits and losses, caloric intake, etc... Its fun, motivating and rewarding.

Interesting idea to look into your family's stuff. I might do see if they are open to that. I bet they would.

karenr wrote:

Mark, how long did you stay on each dosage before tapering? How often are you tested? Karen R

Hi Karen,

I was on 60 for 3 weeks, 40 for 2 weeks, 30 for one week, 20 for one week, 15 for 2 days, and today I started with nothing and will alternate 15/0/15/0... for 10 days and do another count.

I got my counts twice a week while at 60 and 40mg. Then have been getting counts once a week since. Now it looks like I can wait 10 days before my next count. I'll be anxious to see where I'm at next Fri.

Getting my counts done is so easy for me. I live like 2 miles away from my hospital. I jump on my bike and just cruise over, and it's an in-and-out thing. Then I call like 3 hrs later and usually they have my results by then.

Mark! I am right there with you trying to figure out what effects my count. I just can't believe there is NO reason... there must be SOMEthing. I've got a few theories mulling about, but nothing solid yet. Do let me know what you come up with.. when you've come up with it!

Kate

Well I woke up this morning and had my breakfast and then remembered how worried I was yesterday that I was going to be feeling weak and achy and out of it mentally upon waking up. It's been 48 hours since I have taken any prednisone. But I don't feel any different at all. I kind of wish I didn't have to take it today. Just to see what happens. But I will follow dr's orders and take my 15mg again.

Maybe after I do 0mg tomorrow I will feel like crap. I am waiting and bracing myself for that!

mcafiero wrote:

Maybe after I do 0mg tomorrow I will feel like crap. I am waiting and bracing myself for that!

Why are you waiting for the other shoe to fall when it just may not?!

Good luck!

Melinda wrote:

mcafiero wrote:

Maybe after I do 0mg tomorrow I will feel like crap. I am waiting and bracing myself for that!

Why are you waiting for the other shoe to fall when it just may not?!

Good luck!

Haha I do that a lot. I prepare for the worst so that I can celebrate a victory more often! Also many people who have been on prednisone have been telling me that, despite my lack of side-effects and now lack of withdrawal symptoms, that I'm gonna git it! So I just don't want to jinx myself, I guess.

But this AM I went on a trail run with my regular group. We're all evenly paced but for some reason today I set the pace and dropped everyone! Wasn't expecting that at all!

So I don't know. I guess I don't want to get TOO excited about ANYTHING. Not just yet.

I am currently tapering too.....I took 20mg yesterday and from today am to take that every other day, but I see the haematologist again on Wednesday so will see what he says to do then

Mark - you might not "git it". Some people get lucky.

How are you doing mc?? Is the other shoe still hanging overhead?

I honestly had no side effects from my extremely slow taper off prednisone - that being said, I was still a *itch during the taper just as I was while on it.

Melinda wrote:

How are you doing mc?? Is the other shoe still hanging overhead?

I honestly had no side effects from my extremely slow taper off prednisone - that being said, I was still a *itch during the taper just as I was while on it.

I must be doing something wrong. I still feel great! Hmmmm

But I am def. getting anxious to see my platelet count (Friday).

Thanks for checking in!

Well I'm glad that shoe has come down slowly & didn't kick you on its way down! As I said, I had no problems - but then I didn't know I was supposed to have problems because there wasn't internet at the time, I couldn't go online and find out all the awful things that would happen to me There is a drawback to the internet at times.

I hope your count is up Friday and you continue to do well!

Had my count today after 10 days of alternating 15mg/0/15mg/0....

Platelet count was 247K.

So they dropped since being on 15 every day (300). But not as much as I was expecting. I sorta thought I'd be in the 100's.

So now I am waiting for my next prednisone instructions. I imagine it will be 10mg every other day.

All I care about is that when I am off the Prednisone that it stays above 60. Crossing fingers.

Still, the last time my count was this high was like 2 months ago when I was taking 60mg every day.

another count today, 209 after 10 days of 10mg every other day (10/0/10/0 etc...)

So they are down from 257 which was my count after 10 days of 15mg every other day.

My dr's instructions starting tomorrow are pretty simple, (coming from his lead nurse): "He's very happy with your counts. Take 5 every other day for two weeks. Then stop.".

That's it?

Still no side effects or withdrawal effects.

Today I ran trails for 2hrs and felt strong. Last Fri I ran a different trail and set a new personal best time by 2 minutes.

I just hope that after all of this, my counts stay above 60. Seems to be looking good so far, but as usual I am not getting my hopes up!

How are you doing on the last leg of your taper? I'm starting 30 mgs tomorrow, I still have quite a way to go. I'm hoping you have a success story to share. Please update!