Diagnosed one month ago.

Roberta:

Actually, checking counts too often can cause the obsession and anxiety to get worse. Once a week is plenty and may even be too much very soon. Once a person is stable, they usually bump the counts to every other week or once a month. A lot of people find that they focus less on ITP when they get breaks from counts. It can take over your life. Also, getting counts a lot causes veins to scar and in time, you become a hard draw. It's happened to me from 15 years of a lot of blood work.

A lot of people crash quickly and can usually tell by symptoms. If that happens, you know right where to go and how to get help. It would be handled quickly. I used to not treat until I got under 10k, so if I crashed like that I'd just start Prednisone and go on with life. Hopefully, you'll respond faster if there is a next time!

Roberta completely off the topic but had to share this popped into my mind when reading.

My daughter once donated her hair to a charity to help make wigs for kids. But the cool part of the story is how we found the charity and realized what a small world it was.

My counts were low and I had to go in for treatment. On the wall by the elevator was this poster about a charity. So I took the number down and called it when it came time to make contact with the caller. Found out it was a nurse that worked at the hospital. It was my nurse that was starting my infusion to treat my ITP and after talking with her also found out she knew quite a bit about ITP her father had it.

It would be pretty scary if you crashed in another country. You would be unable to fly home maybe for weeks. It stinks there that are no symptoms until you are near 10,000. some of you have said you could tell if you were crashing? Just the rash and nosebleed? Or is there something else? I sure didn't notice anything.

Dee Dee, do you mean you first got ITP in 2006 or did you mean you had a relapse in 2006 because you said you've had it 7 years. Do were you in remission four years?

My name is Valerie. I have never been in remission but am around 170 this week on Nplate and cyclosporine

I suppose to call it a remission, you need to be receiving no treatment and still maintaining good counts?

Yes, that's it. Normal counts with no treatment is remission. Under normal counts with no treatment is partial remission.

If you have low counts with no symptoms, it's a good thing because it means that your body is handling the count well. There's not much reason to panic at that point if you are asymptomatic. If you do crash and have symptoms, that does not mean that something serious will automatically occur, especially if you get help quickly and can get counts up.

People with ITP tend to have larger, newer platelets that work well. They also have platelet micro-particles that are too tiny to count, and those also help with clotting. The body has a way of adapting to the situation.

I could never tell if I were crashing until it happened. I'd just call and go in for a count.

Roberta,
I meant to say that I first came down with ITP in July of 2006. Actually, we were in Hawaii and I was feeling a little tired; other than that I didn't have a lot of symptoms. I did cut myself on the finger and it did bleed a lot. When we got home, I was going to the gym and doing some running and noticed a "lump" below my knee. It was a pocket filled with blood. I started getting the peatachie and looked it up on the computer to see what was going on. That's when I finally went in to the doctor and was admitted to the hospital with counts at 7,000.

I'll have to say that I did enjoy myself in Hawaii

I'll bet that knocked your socks off finding that blood behind your knee. I was stunned seeing my legs and feet literally covered with the rash. I guess it was an unusual amount of rash, as the nurses kept bringing in other nurses to see my legs. Star quality. So nervous. waiting for my results today. Big knot in the stomach.

Bad news. this was my first week at reduced steroids and my count dropped by almost 40,000 platelets. I was at 342,000 last week and 304,000 this week. I am depressed as hell. It is my first drop. I am afraid next week I'll lose even more and more the next week. I was hoping it would at least firm.

Okay, Roberta, you don't really know what will happen as they taper off the prednisone. Can't they wait to do your taper until after your vacation?

Your platelets are sill very good. That's why I don't like the blood tests very often. I use to be the same way when they did them every other week when I had Kaiser. Sometimes, I don't even think about the ITP. But, I still do get fatigue--sometimes I'll take a nap for about 2 hours.

Roberta,

I know this is hard, but you are absolutely fine. I don't know exactly what the range is but it's around 150-400, so technically you are on the high side right now and could significantly drop, but unless you are under that range, there is so need to be upset.

It's next week's draw that worries me, falling even further. Maybe drop 100,000 platelets next time. I know you all know how scary this is. My husband says my body has to adjust to the lower prednisone and maybe it will pick up next week. I'm not sure that is even possible. Do they ever pick up during a taper?

Roberta, I tapered off just fine in 2006. I made sure that the taper was very, very slow. In 2010, I wasn't put on prednisone, I just did the Decadron pulses. Your platelets are still very, very good.

Did you ever drop in your platelet count or did you steadily increase?
I am feeling very annoyed with my initial doctor who wanted to put me on promacta the very first week I was diagnosed. Everything I have read says you should wait a year-- if you can-- to see if you go into remission.

Also, I wanted to tell you that the doctors told me that I probably wouldn't respond to anything. I went through the same thing as you with platelets off the chart at near 1 or 0. I made up my mind that I was going to make the best of everything and still try to be healthy and eat healthy. But, the doctors were wrong since I did go into remission.

Try not to worry so much as that isn't good for you.

What put you into remission? My new doctor seems to be almost assuming I will end up with a splenectomy. That is the last route I want to take. 50% after two years is not good odds as far as I am concerned. 50% chance of having two problems!

Roberta,

I am in agreement with you! Did you happen to read the 2 articles that sandi posted this week in regards to splenectomies? One said wait 1 year. The other said 2-3 years. She also posted to about Nplate and remission.

On a personal note, my hematologist was trying to rush me into the operating room in march ( I was only diagnosed dec 2012). Luckily I was up to date on my information ( thanks to pdsa) and get a 2nd opinion! After stating why I was getting a 2nd opinion to the expert at Cleveland clinic, he said "wow, good for you for being so well informed!"

First, I started taking better care of myself: watching what I eat and resting more. I stopped all my volunteer work which seemed to make me tired. I told my hemo I would not take anything he suggested until I had time to think things over. And, no splenectomy for me since I am prone to strep infections.

What actually put me into a remission was when I stopped taking one of my meds (Sinequan) which is known to lower your platelets (this is my opinion and my hemo actually thinks I was right). I was even considering going on an ITP trial at USC and was getting signed up for it. While I was in the waiting room (for 3 hours), my platelets went from 12,000 (from blood test in the morning) to 31,000 (in the afternoon). With my platelets at 31,000, this dis-qualified me from going on the trail. After that day, my platelets continued to go up, but I never did take the Sinequan again.

By the way, the doctor at USC told me I didn't have a good chance of going into remission from this trail since I was already in my 60's. Only the younger people had a better chance. Then I thought, what am I doing here if I didn't have a good chance! Fate has a way of working out.

You've gotta admire a doctor's confidence in his all-knowing view of the world! I love it when one doctor is dead set on one course, and another doctor on another course, and there you sit in the middle of it all, not knowing who might be right and who wrong!

RHofm50129 wrote: You've gotta admire a doctor's confidence in his all-knowing view of the world! I love it when one doctor is dead set on one course, and another doctor on another course, and there you sit in the middle of it all, not knowing who might be right and who wrong!

That is exactly why you need to be informed and make your own decisions. Doctors go by what they have read and what they have experienced with patients. If they don't read much about ITP, they use the old standards. If they seem to have a lot of patients that are refractory, they tend to go with splenectomy. Each patient should really decide which course to take based on life style, age and cost factors. Remember, their goal is to 'fix' the ITP. So they try to fix it. Never mind the fact that the patient experiences long term problems down the line...that will become the problem of another doctor. Not that they do that on purpose! They probably just never know about it.

Roberta, it is perfectly fine that your count dropped 40,000. Really, it's okay. I told you that would probably happen. We don't know what your normal count was...maybe between 220 and 250 on any given day. Of course your counts will settle in to your norm if you lower the dose. Whenever my kids have been tested, their counts were in the mid-200's, which is where most people are. Since your Prednisone dose is fairly low right now, your count is actually really good on that dose compared to many others I've seen at that point.

Also, 40,000 is not a lot. I know it seems that way to you, but counts do fluctuate a lot. DeeDee mentioned her rise from 12k to 31k in just a few hours. That's what happens all day long....up and down. Of course it will vary from week to week and the fluctuation can be more drastic with higher counts. And yes, you can still go up during a taper. It happens all the time. You could also continue to drop, but if you do, it's not the end of the world. Your doctor might just bump up the Prednisone dose a bit if it's not bothering you too much.

You're doing great and I wish you could see that. You really are! I'm just happy if I'm over 50k and I actually am not happy with counts over 150k. I know that I have a clotting risk so I prefer a lower count.

My normal count when I had annual diagnostic test was 368,000 in 2010. My doctor mentioned that when she was looking through my records. She didn't find last year's. So I was hoping the 342,000 of last week would nudge up further, rather than go down.

I don't mind it going down if it does not keep going down, and there are so many weeks left in the taper to go down. Only about 6 weeks til we are supposed to take the boys to Disney. It could be in the cellar then.

I am grateful for your comments. I have no clue of where I stand, what norms are for tapering, what usually happens. I am grateful for the support of all of you and glad you are out there. My doctor is keeping me on the 20 mg til next Wed, then I am supposed to alternate 20/10 every other day. Now that's scary. If I dropped at 20, what will I do at 10!

I am trying to keep my mind off things by doing my genealogy. Been working on that since I was a teenager. Finally decided I'd better get to writing. I was an English teacher, so writing is easy. So far I have written about 1500 pages with another 5000 to go. Hope I live long enough!!

It is very absorbing, so it's great to take my mind off of things with. What do you do?

There is no real 'norm' with this. I've seen people have counts drop drastically as soon as they start the taper. I've seen counts do what yours are doing and they bounce around, up and down, and stay up for weeks, months or even years. Some people do Prednisone once and we never see them again. It varies so much and no one can predict what might happen. What I do know is that counts over 200k on 20 mg's is pretty darn good. Since you are so worried about the trip, why not talk to your doctor about a slower taper? Since 20 isn't that high of a dose, you could do that daily for another few weeks. That would be better than crashing the week before and having to take the trip on 60 mg's.

The best thing you can do is distract yourself....so keep at it! I do photography. I take senior pictures in the summer and engagement pictures when asked. It's a once in a while thing; I couldn't do a lot more than that due to the physical problems I've been having. I am also going to enter an Art Gallery Exhibit in July. Lately I've also been sanding and staining my deck, but can only do a little at a time so it's taking forever. What are you writing that has 6,500 pages?

I see the first doctor two weeks from Wed. This coming Wed I will stop having 20 every day and alternate 10/20 the week before I see him. I figure I will see what the next two Wed draws come back. If I drop further, then I will ask about staying put or maybe they will say to stay put. I know they want me off them as soon as possible, as do I, but I don't want to have a sudden drop right before we leave July 2. I would certainly go with 60 but we'll be gone 11 days and if I were still lowering steroids and had had drops, it would be scary.

I am a picture person, too. I did the school yearbook on my own for four years. Went to take pics at 100 events a year. Ohio School Pictures had the contract, but they paid me to do it in their place, and I was glad of the extra money. I would have taken my own anyway. I used to enter photo contests before everything went digital and the contests started wanting either weird pics or third world pics. I said I would stop entering contests when I filled one of those big watercolor books with contest wins, and I did. I won the Canon Grand Master contest (6 assignments in 2 years. You had to get 480 out of 500 points to win. There were portrait, action, still life, something, something, and story in 5 pictures.) I did win and got a flight out to Santa Fe and a Canon photo workshop and a professional camera as a prize. That was fun. And I won two other Canon contests and got third place in two national Fox photo contests. And I entered a national contest that gave me a free trip for two England. And the Cleveland Zoo photo contest for years. They used a picture I took in their ads for a year. I was in a motel and picked up the local magazine in the room and there was my picture! And other local contests. And I won a big telephoto lens in another contest and other stuff. And won first place in five categories in a local camera chain's contests It was fun, but once I filled the book, I quit. You have to pay taxes on that stuff.
You can't find good printers anymore for film, so I have gone digital. In some ways I like it, as I have complete control of my pictures, but I hate not having negatives. It makes me nervous.
I take thousands of pictures of my 4 grandkids (number 5 hopefully will be on the way this summer) and vacation pics.
The 6500 pages is my family history and my husband's. I alternate between doing a section of mine and a section of his. Two sections are done for him and two for me. I am not working on my third section. It takes 1-2 year to do a section because of the research and writing and because we have grandkids four days every week and because we travel. So those things slow it down.
What camera do you use?

I continued the photo discussion in the social chat.

Roberta,

I'm assuming you live in Ohio? I live in Ohio too!

No, I live in Indiana. I lived in Chagrin Falls, Ohio, for about 12 years and then in Dublin, Ohio, for another 6. Actually, I lived in Warren, Ohio, when I was a teen and went to Kent State.

So you def know my state!

Where are you in Ohio?

Cincinnati