Newly Diagnosed and Riding the Roller Coaster+ a ?

krsnanandini

Congrats on your great numbers! Glad all is going good for you. I still go weekly. I actually went twice this week (2nd time was today and was still up at 161k). They called me after and I start 5mg tomorrow and go get checked again next Friday. I meet with the specialist @ the end of May and I am betting that if we are still good then I will go to monthly as well. Thank you for asking!

Thanks everybody - but as is often the case w ITP, my new "high" was short-lived!

Numbers today - 17k. Waa-wah.

Krsna - I'm no longer on any medications. I have been experimenting with the papaya leaf extract, which I will begin again tomorrow. It seems possible that it was what caused the bump, but we shall see. I'm a pretty big skeptic.

I went back to the old Hematologist office today - I was sort of using him, to be honest. They have a machine that gives me numbers immediately, and I am going out of town for work next week and wanted my numbers quick, and those "lab-corp" places don't give immediate results. Of course that meant I had to deal w him again - had a call from him this evening asking if I was going to begin another round of dexamethisone. I said no.

And of course he thinks the 129k was a lab error, which it could be but MAN is he a downer sometimes! I just wanted to say "man, just let me have my 129!"

So we wil see how this all pans put. Still med free, we will see if I can remain so.

Kittie that just sucks.You sure they didn't read it wrong and it was really a 170k ? I'm a skeptic too, but hopefull on the papaya leaf for your sake. That guy is a downer.(Makes you feel okay about "using" them lol jk.) I kinda used my pcp's office in a way. When I started going there they sent my blood out of house and between that and the two offices it was time for my next bcb before I got the results. So the hemotologist sent a prescription that they run it in house from now on. We believe in the 129k!! Just be careful and good luck. Keep us updated!

Having a doctor who doesn't believe you can spike up and down from 129k to 17k probably hasn't had too many ITP patients. My current doctor has coauthored published papers on ITP and is unphased by the wacky ITP roller coaster saying he has seen stuff like that all the time. Though he was surprised by the fact that I was refractory to Prednisone five years ago but I seem to have responded well this time.

Kittie, How long have you been med free now? And, 129 is still a very good count; I wouldn't worry about that count. I've made it without med for over 1 1/2 years now since the Decadron pulses (almost two years in August since being in the hospital).

QUESTION!

K so I got my weeky bcb today and after staying in the 160s for a couple of weeks I went down to 129k. I know it is still good, but wondering. I have been on prednisone for almost 3mon and am almost done tappering. I was suppose to take 5mg everyday this week and then go down to 5mg every other day this coming week. Like I said, I have been on the meds for almost 3mon and never forgot to take a dose, until this week, and it happend 2x in 1 week! I forgot Monday and did not take it at all, then yesterday (Thur.) I forgot and had to take it about 11 hrs later than normal and had my bcb done today. I did not think that small of a dose and would make that big of a difference. I guess my question is what do you think? I feel like I messed with the control of an experiment lol. Of course I also added in more workouts the last couple of weeks too. Oh well all is still good! Thanks and hope all is well!

Kittie, I'm sorry I read your post wrong. I see that your platelets are at 17K; You did mention before that you don't get a lot of symptoms--and that is what really counts. If mine go done to 17 again, I don't think I will take meds either. The one doctor I consulted with a while back said that I could probably have a 5-year remission (I think that would be it--but you never know with these things).

Try not to worry as long as you don't have bleeding symptoms. And, the plateles do go up and down a lot (one day mine went from 12,000 to 31,000 in a matter of hours; other times, they don't budge!).

The day they crased, I'm sure they went from over 200,000 to 4000 in a matter of hours.

Dee dee: no worries - its hard to keep track of these numbers! I'm on a business trip right now and I feel "ok", still med free. I feel not great but not terrible. I have a few petechia but not many (most people wouldn't even see them). I wish there was a way to know if it was a crash or a wrong reading - because even w a crash, that was the highest bump I've had yet.

If the papaya doesn't end up w a higher count at the end of this experiment, then I will probably do another pulse since then THAT was probably the cause.

I feel better being in control of the situation though - like, I've got a better handle on what I'm doing and what we have done so far. So "experiment Papaya" continues. If it doesn't work, it doesn't work. No loss - just another check on the list!

Van: honestly, I think that the skipping of a couple of days of steroids actually could affect your numbers that much. You're in the home stretch - don't skip!

Do you have one of those pill carriers - the kind that have a hole for each day? That's the only way I remember anything. Helps a lot.

Kittie, I don't think you are having a crash. When I did crash, I had a lot of bleeding (blood blisters, bruising). It took about two weeks for the symptoms to calms down (and watching what I ate). I really think you are doing great. And, I'm like you, I don't mind having lower platelets if I can be in control (and not just the doctor).

What I really hate is when my platelets went to "1" and couldn't be read. In my case, I think it was from one of the meds I was taking; once I stopped this med, I started to get better. Just make sure you get rest when you can.

Kittie,

Glad you are feeling good, stinks that you are not great, but glad you are good. I don't have a pill carrier, but I am usually really good. I think it is the stress from the end of the school year getting me out of wack. But after this I couldn't forget again . I have a couple new bruises and had a nose bleed this morning, so just to be safe I am going to get checked in the morning. The other doctor's nurse told me they would probably have me do it anyways. I'll let ya'll know how it goes. Thanks!

Well good news. 167k today. Just find it weird that I had some new bruising this weekend and a nose bleed yesterday. Go figure. Hubs and I figured I dropped over the weekend then it picked back up. Who knows. They went ahead and put me on every other day. Just glad to be up again!

Van, That's really good numbers. As far as the nosebleed and bruising goes, sometimes we eat something that thins our blood a bit and this might cause the bleeding. My platelets have been high for a 1 1/2 now, but once in a while I get some brusing or bleeding and sometimes petachie. Really glad for you. Try to relax a little now.

Thanks DeeDee,

I was actually about to ask if anyone ever had bruising or such at higher counts like that. So that does make me feel better. One thing that I have found weird is that when I do get new bruises, it seems like my old ones that never fully went away get darker again. Thanks again!

You should see the bruises I get sometimes and my counts are over 200k. It happens. It is not always an indicator of low counts.

My counts are at 120K and my body is a rainbow of bruises. :laugh:

Hi, Kattie, my mom is nearly diagnosed with ITP. she feels fine as well at low count 10 to 30). However, all her previous years or CBC were normal. I am just wondering your low count was a sudden drop or you had the low count for sometime?

Hmmm- this most recent low count was a sudden drop, but when it all started? There's no way to know if that was sudden or if it had been low for years.

I feel pretty much the same all the time. And even at 9k, I had very few petechia and that was it. So the husband and I have speculated that it could have been years in lower numbers.

Before the initial CBC that indicated the low count, I hadn't had a CBC for years - possibly 10 or more. I'm not a fan of doctors (and this hasn't made that any better)!

Kittie, Sometimes you feel better not knowing. The doctor told me not to come back for one year (he said I'd know what to did if they started dropping). And, I actually feel better not having to go in. I do get tired some days, but after a long nap, I feel better.

Amen Dee Dee! My husband would prefer I still go in once a week (which was my crazy schedule for all of last year), but now that I know more and have a better handle on things, I'm totally happy with once a month.

And I know it sounds crazy, but it was very satisfying to NOT going back on meds most recently when I was at 17k. I kind of liked just saying no, and seeing how it went (it went fine btw). Like I had more of a say in my decisions and my life again.

Don't worry - I'm stubborn but not crazy. If I get to 10 or lower I'll likely go back on something. But I do feel like there has been a mental shift for me.

After the first year of Promacta, I stabilized sufficiently to only see my Hematologist and get a count twice a year. We both agreed that I have enough years of symptom experience in this game to usually know when I've dropped below 10k.
I'm far happier not getting checked constantly. I have enough scars on my arms from the needles and counts fluctuate a lot on their own from day to day anyway. Perhaps this is just 'ignorance is bliss' on my part, but I been through enough years of constant monitoring to enjoy the freedom of not living for the count.
I simply gave up chainsaw juggling and relaxed.

Kittie,
That does not sound crazy! Still very happy for you. The nurse and I kinda had an itty bitty celebration dance last week(5/11 < my birthday!>). My count was at 212k! So they took me off the meds totally!!! This last friday I was 182k, but still great! I'm hoping to get to that point of checking less frequent very soon too, but I am sure it is going to feel weird. Very happy for all you guys!

Very true Dee Dee!!

Both the long nap and not having to go to the doctor!

Well it has been a while since this thread has been updated, sorry for that! Life has been trying to get back in order. Things have been staying positive for me. I have gotten to go two months without seeing the hemotologist and go only every two weeks to get my count, which has been staying in the 190ks! I also meet another woman over the summer who had been diagnosed once with ITP. Hers came because of medication and it has been many years, but she hasn't had any problems since. God is good!

Kittie how have you been? Any more changes or dr. visits? Hope all is still good.

Thank you everyone for all your support and help!

Stay well and wishing you high platelets!

Thanks for asking!

I am not so lucky - I'd looooooove to have a count above 100. Heck, I'd take above 50! But mine still seem to be hanging out around 20k. I am actually not trying at all, but I have no bleeding issues right now, so I am in a "careful monitoring" situation. If need be, I will go back on something. But very happy to be off for now.

My last read was 18k, and I've sort of been dropping over the whole summer, so I no longer have hopes on the papaya leaf, although I'm still taking it.

I really hope you are able to stay in those high numbers - what a wonderful success story! Good luck to you Van!