Question on what is stable

I am still new to all this any you are all quit helpfull. I guess my journey really started in 2011 with my first pc under 150 it was 144. I dropped to 83 this last April which caused a visit to a hemo here in Indianapolis. Since then I have had 3 other counts all in the 80's with my last count being 93 a few weeks ago... from what I read this drop is classic itp and I should not expect for them to go back to normal.... at least over the last 4 months my count has seemed to level out... is that normal? Is it possible I hit a bottom and will stay here or should I expect them to keep dropping.

I see lots of info on folks who have had to go through treatment, but don't find anything to show there are folks who just stay at 90....

Also is there an itp expert in Indianapolis that anyone knows...

Thank you. And I pray for each and everyone of us every night. Bless you all.

There's no telling with ITP. You could stay just as you are, your counts could go back up or they could go down.

People do get stable but then they tend to disappear off the forum and go live their life.

Good to hear that does happen. I am not sure if it's better to find out now and watch my count fall over time or to have not known until they crash....

I have been so emotional since I was diagnosed. Scarred, angry, frustrated. But determined also. I am sure this is not helping my counts.....

Next cbc is not till Nov. Gives me time to get my head on straight

Now you have found someone who's counts started dropping and stabilized. I've never been below 80, and never had treatment. My last hematologist did the usual tests, told me to have my platelet count checked a couple times a year, and to just monitor it. That's what I've been doing (plus taking supplements for nutritional deficiencies he found).

Some people have a relatively mild/benign course with ITP, and others do not. There doesn't seem to be any good way to know ahead of time which situation you'll be in. That said, most people with ITP do not have major crashes/crises. Counts do stabilize and, as my hematologist put it, become "normal for me".

Now I spend my time calming down lab technicians, primary care doctors, and others who get a little worked up about my low (but for me normal and in terms of ITP quite good) counts.

P.S.: I'm not planning on disappearing from the PDSA. It's still worth keeping current with the disorder in case I need treatment someday.

Aoi, thank you. When I first met my hemo I took her this chart that showed a curve showing my decline over the years... I felt since I was on metformin and it can cause b12 deficiency that's what I had... never heard of itp before that visit. B12 was good but I was vitamin d deficiency. Now taking 2000 a day for that...

Since I have been between 82 and 93 the last 4 months I hope this is my new normal. Still feel like the other shoe is waiting to fall....

I remember wondering and worrying about the further fall of footwear. Nothing much so far. I keep taking my B12, folate, vitamin D, et al. My hematologist was more worried about my developing megaloblastic anemia due to the folate and B12 deficiencies than hoping to restore my platelet count with supplements.

Somewhere along the way I just stopped worrying about it. I must admit that my mother's diagnosis of pancreatic cancer last year had a major effect. That put a lot of things in a different perspective.

I am so sorry to hear about your mom. How much folic are you taking... I was taking 800 mcg a day but had some tummy issues so stopped it to see if that was the issue...

Same amount: 800 mcg/day, which was the amount my hematologist recommended. I haven't had any GI issues as a result of taking it, though I take a lot of NSAIDs for my cervical radiculopathy, and that may be masking (i.e.: overwhelming) any effects from the folate.

How long have you had itp?

About four years.

Pcarter:

Your counts really do seem to be stable. Ups and downs like you've had are normal fluctuations. Of course anything could knock them down like a cold or something, but they might rebound on their own with no treatment.

I'd bet that there are many people out there like you who have below normal, but safe, counts. Most people just don't know about it because they haven't had a CBC. Those people just carry on with normal life and that's also what you should do. Monitoring is the best and only thing you need to do right now. If you would need to treat sometime in the future, you'd handle it like the rest of us did and the world won't end. We'd all be here for you and you'd get through it.

Try to stop worrying. Okay?

I'm not the voice of experience here, but I can do encouragement I've only been diagnosed since June (I'm just north of Indy in Muncie). As Sandi said, from what I've experienced & read, counts bounce around. Yours seem good. Are you experiencing any symptoms? If not, try to relax & live your life, but check your counts from time to time. My hema is happy with anything over 30. I'm at 13 right now, but did not want to do more IVIG as hema suggested. So hema upped my pred. I feel as good at 13 as I did at 43 two weeks ago. Just a few bruises. I'll worry if it goes down more, and will keep an eye out for other symptoms. Too much to do (lovely 3 year old granddaughter I need to spoil), and enjoy to let it get to me until I HAVE to pay more attention again.

No symptoms yet. I do have bruise on belly do to 6 year old daughter kicking me in her sleep. Keeping everyone in my thoughts.

tkine I like your attitude - you enjoy that precious granddaughter and give her wonderful memories! I have a grandson who just turned 3, and a 6yr old, 9 yr old and 12 yr old. I love them to death and am so thankful for them!

I've got a huge dark purple bruise on my side just above my waist - have no idea whatsoever where it came from. Unless more appear I'm not going to worry about it.

pcarter with that count you are doing well - think positive ok?! Are you near IU? If I lived there and had ITP I'd see a hematologist there. The head of hematology at the university medical center here told me back in 1990 I think it was, that "you WILL have your spleen removed" - I still have my spleen, guess that's why I don't believe in ITP experts.

I live in fishers, just north of Indianapolis. Thank you all for comments. Just frustrated that not much we can do to make it better.

But there is no need to fix something that isn't broken. I'd be perfectly happy with those counts, in fact, most people here would. So far it seems to be a very mild case of ITP and it shouldn't interfere with your life at all. Normal counts are not needed for daily life and ITP is actually defined as counts consistently below 100k. You just meet that criteria.

Treatments are much worse than ITP, believe me. You don't want to go there unless you have to.

Well said Sandi

Indeed! There's the normal range, and then there's the safe range. I spend most of my time in the latter, though occasionally visit the normal range. And of all the things that can take me to a hematology/oncology facility, ITP is among the best. Occasional CBC, shrug of hematologist's shoulders, and no meds. I can definitely live with that.

Questions. Flu shot time coming up take or not? Cold meds.. what can we take..

Had blood in stool on Friday. Kinda had a freak out since I have never had that issue before. Was only once. Have a very kind nurse at hemo office to thank for walking me back fromthe edge..

Also is 800 mcg of folic acid ok to take?

Flu shots are generally regarded as reasonably safe. I had mine last year with no problems. However, some meds used with ITP may not mix well with a flu vaccine, so check with the person administering the vaccine just in case.

What cold meds were you thinking of?

Hi, thought I might add my story of chronic itp since my counts are similar to yours. I was diagnosed with itp when I was in my early 30s with my first pregnancy. My counts were 50 to maybe 70's when I was pregnant with my three children. After my pregnancies I had counts of 70 to 90. One time I dropped to 44 which my hematogist in his wisdom just monitored and they came up on their own. It could have been a virus that caused them to be 44. So now I just go every 6 months for blood work and my platelets are running 90 to 100! And guess what? I just turned 60 years old! So, I'm telling you this so you won't worry so much.

Vaccines can sometimes cause counts to drop...depends on the person. You have to weigh the benefit vs risk and make your own decision.

I was at 83 back in April and after a test on Monday I am at 101. Hope they keep going up. It took several years to reach 83, I don't care if it takes several years to get back to 150. Hope this is a good sign.

My thoughts and prayers are with everyone with itp.

Good for you! Keep in mind that counts fluctuate up and down, and do not usually follow a pattern of strictly going up or down. You could have a CBC tomorrow and be at 95. That wouldn't mean that you are going down again.

just got my cbc back and platelets are 102 smd mpv is 9.2.... look like I have been pretty stable 89 this time last year. 6 months ago I was 101 and now I am 102 and with itp defined as platlets less than 100 and my mpc is middle of normal not sure what this all means.

Happy with count and prayers to everyone.

I wouldn't worry about the MPV. Your counts are good, that's all that matters! Looks like you are truly stable for now.