Diagnosed one month ago.

RHofm50129 wrote: 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.

Well I am back from the cruise! Did you all miss me? Roberta, where in Indiana are you at? I am in Columbia City, by Fort Wayne.

Roberta, I think you are doing very well! Don't worry!

Jeffrey

I live near Indy. My platelets dropped from 342,000 to 304,000 last Wed. That is rather scary. I am wondering if it has dropped farther. Guess I will find out Wed. You can't feel good about a high count because you know it can drop to the basement over the course of a few hours. It is many weeks til the taper is done. I am supposed to split 10 and 20 next week. I understand a lot of people tank at 10.

Hope your cruise was great. What would you have done if your platelets dropped to like 10,000 while you were on the cruise?

Yes, you can feel good about a high count! If you can't be happy then, when can you be happy? That is the time to relax and enjoy life - you are normal! If you spend all of your time worrying about a drop, you'll never be happy.

I don't think that most people tank when they get to 10 mg's. Many drop much sooner than that and some never do. If you're doing well and the taper is slow, there is no reason to assume that you will keep dropping.

You're becoming too wrapped up in having normal counts all the time. Below normal is fine, honest!

It is just not knowing the "norms" in this disease, not knowing how things work in it, not knowing where you are in comparison to the way things generally go. Thank you

There aren't any norms. Everyone is different. It's learning to go with the flow that is hard to do, but a necessary step in order to avoid panic all the time. I wasn't so much worried about drops, I was more worried about having to treat again so delayed that as long as I could.

The fear of starting from scratch, returning to the hospital for two weeks again, is the fear behind the worry that the platelets will drop. And since I have a cold now, I am worried that will cause them to drop.
I can see it will take some time to be able to go with the flow. The initial response to this situation is disbelief and fear, feeling as if your whole life has had a big hole blown through it, feeling vulnerable and helpless. If you felt bad, felt something when your platelets were dropping so that you had a clue as to what was going on, that would help. But I never felt bad at all. Never felt tired. Never had a clue.

It's really hard at first to understand, but this disorder is different for everyone. You are doing very well and you respond to prednisone well. So you can feel great about that.

Because you are being monitored closely now it is unlikely you will end up back in the hospital.

I have been dealing with blood disorders for 14 years now and there is 1 thing I know for sure, you can't do anything much about your counts but you can control your anxiety and attitude. Talking to people on this site helps a lot with both.

You seem very anxious and I can relate as I can be like that too. Here are some things that have helped me in dealing with this stuff:

A book called "The 10 Best Anxiety management techniques", I have it on my kindle and will flip through it while waiting at the hema's or when I get back my counts and they aren't good.

I always plan a little treat for myself after a dr appt, something to look forward to, like coffee out with a friend.

I try to redirect my thoughts if I start worrying with the "what ifs"... What if my counts drop, etc. I try to not think about itp except when am on this site or at the docs.

Stay busy....do things you enjoy! I liked the pictures you posted. I'm on an iPad and when I touched the pix they came up in a new window and were very clear, beautiful!

I know it can seem scary not knowing when counts are low. That is a good thing though. I guess a blessing in disguise? Not having symptoms means that your body is handling the low counts well. It means that even if counts are low, you will most likely be okay. I'd rather have a disorder where I felt fine than to have one that made me feel awful all the time to the point where I was unable to participate in life.

Dru is right. Being monitored makes a world of difference, and there is no reason to assume you'll be back in the hospital for two weeks. That is actually pretty rare with ITP.

When I had my first ITP remission, I didn't get counts done for a year and a half. When I finally did, I was in the low 30's. I have no idea how long they were down or if they had been even lower. I was no worse for wear and just started to monitor then. I was actually angry with my GP who talked me into getting a CBC. Ignorance is bliss, but no harm done.

Dru had some good suggestions for dealing with anxiety. You have some exciting trips coming up, so try to focus on that. You still have time to deal with your counts to be sure they are up for the trips, so I'm sure it will all work out.

good, thoughtful advice from all of you. And I am grateful for it. I will get that book.

Doctor #1's office called me a bit ago and said I didn't need to get blood draw tomorrow. That based on last week's count (when I dropped 38,000 pts to 304,000) the doctor felt I didn't need the count checked this week as he thinks it will go up. I don't know WHY he thinks it will go up. And he told me to drop to 10 mg of steroids this week.

Doctor 2, however, told me to alternate 10 and 20 these next two weeks, and I think I am more comfortable with that. Plus I told the nurse I did want a count done tomorrow since I dropped last week. It isn't a big deal to get blood drawn. I need to know what it is. As long as they keep dropping the steroids, I feel like I need to keep close tabs on it.

Anybody want to take a walk here with me? Singapore's orchid gardens. Peaceful, no stress, no platelet counts!!

OOoooooo if I didn't have this fractured foot, I'd go there with you! I guess we'll have to take the trip in our heads. I take a lot of trips there!

I'd rather see you do the 10/20 taper also. You'd be better off for both count reasons and withdrawal symptoms. Gotta get that count done though....girlie, you're a pip!

There are so many gorgeous places to go. We've been racking up the miles since we both retired, knowing the legs would not hold out forever. They told me three years ago I needed a total knee replacement but regardless of what the x-rays show, I almost never have trouble with my knee. I can't walk a beach more than an hour tops, with the sand being difficult to walk in or walk a long time on uneven terrain. But we walked three Disney parks in two days in November. If I can do that without any difficulty, I fail to see why I need my knee amputated!!!

If you can do what you want to do without a knee replacement, then you certainly shouldn't have one. (I couldn't do what I wanted to do, so I did--twice. And I'm not sorry--but the recovery is long and seldom easy.)

Roberta,
I use to worry just like you as I was in the hospital for two weeks, came out for a few days, then went back in with my platelets at "1". I tried to make up my mind at that point, that if I didn't get much blood blisters or petachaie, I wasn't going to worry too much. The symptoms are what can cause us problems.

Plus, the hemo basically told me that I was a hard case as I wasn't responding to steroids, and he didn't know what he was going to do (he was a fairly new hemo--has had many cases since then that don't respond). Since you respond to steroids, this is very good. You know that you can always have steroids as a backup. With me, I don't respond to prednisone, but finally did to Decadron. I wouldn't mind staying on a low dose of steroids if I had to.

Deedee, my doctor who ONLY takes ITP cases and never has done anything else in 20+ years talked about why it took me 2 weeks to get up to 25,000. He said most people don't drop precipitously, that they drop slowly. But he said he believed I dropped like off a cliff. He said when that happens, it takes a couple weeks for the stem cells to tell your body to make platelets. He said it does not happen all at once because the body is so confused by the stark drop that it does not know what to do initially. Maybe that's what happened to you, too? He said I had an unusual amount of rash. I was literally covered with it from the knees down and had lesser amounts everywhere else. The nurses kept coming in to show each other as they'd never seen so much of it. He said that is a sign of a steep drop. Once my stem cells knew what to do, they started kicking out platelets at 1,000 per hour. I think the delays I had in getting medication due to the amounts I needed and the delays I had getting red blood cells because I had an antigen in my blood that required double filtering which took an extra two days-- worked to my advantage because Doctor #1 was going to put me on promacta after a week because I had not responded. Had he done that, I would have been in trouble, as two weeks later I had 342,000 platelets. The promacta probably would have made me have too many.

Gotta have as many facts as possible when making a decision. If I've dropped big time, I would not want to go to 10mg and probably neither would the doctors. Besides, I saw no logic behind the reasoning that since they had not responded to my last test, I didn't need one this week. What?????

RHofm50129 wrote: I live near Indy. My platelets dropped from 342,000 to 304,000 last Wed. That is rather scary. I am wondering if it has dropped farther. Guess I will find out Wed. You can't feel good about a high count because you know it can drop to the basement over the course of a few hours. It is many weeks til the taper is done. I am supposed to split 10 and 20 next week. I understand a lot of people tank at 10.

Hope your cruise was great. What would you have done if your platelets dropped to like 10,000 while you were on the cruise?

Roberta,

I would not have known it had dropped unless I became symptomatic. Which, I have never been. And If I was at 10k I would not have worried about it! Really! I will worry about this when and if I ever have something to worry about. Right now I am worried about my swim time for the Tri Indy Triathlon in August. Come down and have a coffee with me and my wife after the race. Age may slow me down a bit, but ITP will not!

Your counts are great! Enjoy! BTW, who is your doctor if I may ask? And don't worry too much about the knee. I had mine double scoped and all ground out about 2 years ago. I was not supposed to be able to run again. But I am still going!

Jeffrey

My doctor here is Dr. Harb. In Indy it is Rakesh Mehta.

Well, the news never seems to be good. Today I was down to 233,000 platelets. So I have dropped another 71,000 platelets. They are dropping the steroids lower this week to 10. Lord knows how low it will drop next week. Pretty soon I'll be back to 10,000 again. I must still be killing off the platelets.

Roberta,
Maybe your doctor should slow down on your taper. Why don't you talk to him about it; especially with your vacation coming. Just a thought. Also, watch to see if you show any symptoms.

Both doctors are hot to get me off steroids. I have been on high or moderate doses since April 10th. They say it is a "nasty drug." One doctor, as I said the other day, wants me at 10mg all week; the other one wants to alternate with 20 and 10, which is what I am going to do. I just don't know how doctor #1 will react when he finds out I am following orders from another doctor. Probably not well.

If I delayed until July 13, which is when we are supposed to get back, it would keep me on steroids an extra month. I'm not sure how that would be. I will ask both doctors about it. I have an appt with #1 next Thursday and with #2 the 7th.

I moved my mammogram up to Friday. It was originally scheduled for June, and who knows what count I will have then. If it were low, I couldn't get the mammogram without bad bruising, etc So I am going to go while I am over the minimum.

I don't want to not get one this year, and the huge bruises I got from the blood pressure cuff were enough to remind me not to get it when I'm low.

Roberta,
When I had my first bout with ITP, I took Prednisone over a 3-month period with a very slow taper every couple of weeks. I ended up doing just fine this way. Maybe they are tapering you too fast. Also, I bruised real bad for a while, but once my platelets adjusted, you could hardly even tell. This is with platelets at 12,000. A lot of people adjust after a while.

RHofm50129 wrote: Last Wed I went up to 340,000. I have another draw on Wed. Each one is difficult to handle, waiting for the results. My doctor says they can drop at any time on a taper. He is taking from now until mid-august to taper. Seems like a very slow thing. I am at 20mg steroids from now til a week from Wed. then alternate 20/10 the next week.

I thought they were going to taper you through August? Why the sudden hurry since you seem to be handling the side effects okay? If you keep tapering at this rate, you'll be off of it in a few weeks. I think that would be okay but you don't like the platelet drops, so maybe a slower taper would be in your best interest.

Most of us were on higher doses for weeks and tapered over a few months. Steroids are not fun at all, and yes, long term side effects are not good. But normally, one round does not do that much damage.

No, the taper does last until August. Every two weeks there is a drop. So the last two weeks I was at 20, now two weeks 10/20, then 2 at 10, etc etc.

Okay, maybe it will take that long. But if the counts are dropping with the tapers, the taper should slow down or stop for a while. Your counts are great, but I worry about you worrying about the drops. It can be a long haul to get remission sometimes, Roberta. Took me a year and two rounds of Prednisone, and I was one of the luckier ones. It lasted 3 years.

Sandy knows what she's talking about since she has experienced this before. I would definitely look into what she is saying. She has a lot of personal experience. Plus, following all the members on the original ITP Board.

I don't see how I could not worry. I have dropped by 109,000 platelets the last two weeks. I am not trending the right way or stabilizing. Another drop next week and I could be back to zero. And I know they are going to want to try something else and I have no idea what to agree to. I can't walk around with zero or 10,000 platelets. If I can't maintain more than that, I will have to pick something to try, and I don't know what to pick. Everything seems dangerous. Everything has horrendous side effects or death possible.

That is why I'm suggesting you speak to your doctor about slowing the taper. Tell him your concerns. You can be an active participant in this.

While you have the time right now and before you have to make a decision, try to figure out which direction you would like to go if you need to treat again. Discuss those options with your doctor and make a plan. I think you are so scared because you have no real direction and not knowing what will happen is upsetting you. You're following the taper but fearing the results of it.

Please believe me when I say I am only trying to help. I'm not known to sugar coat anything. Occupational hazard...too many years on the job of dealing with facts only. It didn't go away when I quit!

The Forum is filled with stories of people struggling with ITP. Some have worse counts than you do and some have better counts than you do. Grasping this takes time and everyone is in different stages of acceptance and learning. I can assure you that once you realize that being monitored will most likely avoid a crisis, you will calm down. Understanding the fact that medical intervention will avoid a crisis will calm you down. Knowing that counts above 50k might be more realistic (and perfectly safe) will help to calm you down. Reading the experiences of others and the fact that they survived low counts and treatments will help to calm you down.

I had counts under 10 for over a month while doing Rituxan and I was fine. I cannot guarantee that you would also be fine in that situation, but chances are good that you would be. There is no reason to think low counts will automatically be a given here - because you are being monitored. Even if it does happen, you will deal with it like you did this time.

If you'd like to discuss treatment options with us too, we're here. Most of us have been through a good deal of them and collectively, we've been through all of them....sometimes more than once or twice. Most of us have had counts below 5k too....we've been there. You are not alone in this. You're surrounded by a good group of people who have been there, done that.

If you want me to shut up, just say so. Again, I'm only trying to help.

Everything you say is 100% right. I keep reading and reading trying to find out about things, but the problem, as you know, is that every person responds differently.ITP is different from every other disease in that there is no way to tell if or when I will respond to a drug or it will severely hurt me or even kill me.

The thing weighing on me most is the Disney trip, telling the kids they can't go. If it weren't for that, I think I might be able to go with the flow better. And I know there is no way I could stay at 30 mg for another two months.

I would love input on different treatments. There does not seem to be many of them though.

Sandi, I don't really want sugar coating. I am a frank person myself, and I generally face things head on and full bore. I have to admit this has been one hell of a kick in the head though. I've had serious illnesses before, but this is different.

I don't understand what you mean when you say medical intervention will help me avoid a crisis. What intervention?

RHofm50129 wrote: I don't understand what you mean when you say medical intervention will help me avoid a crisis. What intervention?

Treatment. Treatment prior to getting to 10k will avoid a crisis. Crisis is even the wrong word. Low counts are not normally a crisis and do not = death. Take it seriously, yes, but death from ITP is rare.

There are some positives about ITP. One, a simple CBC gives you the answer and the results come in pretty fast. It isn't a long, difficult, painful test that takes a long time for results. The answer that you get (the actual count) tells you immediately how you are doing. With some illnesses, you have to wait a week or two to get results and those results may not even tell you what needs to be done. Two, some illnesses in themselves are painful and debilitating. ITP is not. Three, some illnesses are much harder to treat than ITP. ITP is pretty manageable. Some other illnesses are not. Last, the treatments have come a very long way since I was diagnosed in 1998. There are many more choices now that have proven to be successful.

I have not seen many deaths from the treatments. Side effects, yes, but not death. I did see one person die of sepsis over the years. She'd had a splenectomy, was using Rituxan and was on Prednisone. She was on vacation in Hawaii and became ill. She died within 24 hours. That was a very bad, shocking day for all of us here. Another member here died 6 years ago from a heart attack due to complications of Lupus. It was not related to ITP, although she did struggle with both ITP and Hemolytic Anemia. The treatment side effects look scary, but very few people have any serious complications from them. Having too many treatments at once or in quick succession can lead to immunosuppression and that can be dangerous at times. But it's not hard to avoid that situation.

Yes, every person responds differently. But we all keep telling you that your response has been fantastic so maybe you could start believing that a bit. The fact that counts are dropping is a normal thing and that has happened to every single one of us. One member here just went from 434 last week to 198 this week. Fast drops can happen to anyone.

All autoimmune disorders have the same thing in common; there are no clear cut answers and no cure. Some are progressive and debilitating. ITP is not. It has its ups and downs but most lead a completely normal life despite the counts and treatments. Sometimes activities have to be altered, but that is do-able for most.

Here is the treatment list. Research them and then ask about them either here or with your doctor. pdsa.org/treatments/conventional.html

As for your trip, you can discuss that with your doctor also and tell him how important it is to you. Maybe you can plan ahead to be sure that counts are high enough to go. I went to NC with counts in the 20's and a bottle of Prednisone and didn't think much about it. One member here just took a cruise with counts around 50k. Most can manage to take planned trips by simply planning ahead if you are determined enough. You don't have to stay on 30 mg's for two months, but you could ask to slow the taper at this point. Most doctors are pretty agreeable to patient suggestions and concerns and if they are not, maybe they are not the right doctor. You want one who will work with you and allow you to tailor the treatments around your lifestyle, not one who will tell you too bad and minimize your important events.