Diagnosed one month ago.

I have never been a bleeder or a bruiser and have never had a low platelet count. I get diagnostic blood tests every year, and platelets were always in 400's. Then a month ago I simply lost all my platelets. Was in the hospital two weeks to get to 25. I had steroids, IVIG and WinRho. Lots of platelets. Two units of red blood cells as the high doses of WinRho gave me anemia. My platelets were zero for days, then 5 for five days, then 6, 12, 14, 25, 90, 230. I am taking 30 mg steroids now and am afraid I will tank when they lessen them. They kept telling me how hard it was to get me to respond to treatment and then I suddenly took off. Has anyone else had this experience? Anyone else slow to respond? How did you do once off steroids? I have a blood draw tomorrow and hope it is up more. I need to be stabile by July 1. We have been planning a trip to Disney World with my 7 and 9 year old grandsons for a year. I can't bear to disappoint them. Do you think I will be able to pull it off in 7 weeks?

RH:

That decision will be up to you and your doctor. You'll have to make that decision based on your counts and symptoms.

I can tell you that a lot of people with ITP have traveled with low counts. Usually, doctors will proceed more cautiously with a newly diagnosed patient though as far as hospitalizations and restrictions. 20k to 30k is usually considered to be safe if symptoms are not too bad, so if you at least have counts at that level, chances are good that you could possibly go.

There are other treatments you can try before then, so there is also a chance that your counts could respond to something else if a Prednisone taper does not keep counts up.

I went through the same problem when I was diagnosed 9 years ago. I was at 300 and the Doc suggest I not fly . Not sure why , but I was having real bad nose bleeds and he was afraid the change of pressure could make my nose bleeds much worse. I would bleed for 3 hours or so , before it would start to clot.. I was on this site many years ago, and after 9 years with 200K, im now going the other way 600K...But anyway , I ve been through it all, before you do anything else, check out Rituxan....it worked for me after everything they tried, including spleenctomy that went bad on the table ..Had 1 million platelets pumped into me before operations and Had 5 units of blood during operation and the day after operation I was back to 200..Had my oncologist suggest the Rituxan and within 1 month after my 6th infusion I climber to 200K and have been at that number for 8-9 years till now, Im 500-600K and still climbing for who knows why..More blood work and consultations about why the sudden change...take care

I have tried many treatments and never really brought my counts above the 20's did get up to 151 one time. Unless my counts are in single digits I'm not going to panic anymore and am going to live a normal life. I do low impact exercise 4 days a week, eat healthy meals as well as we own a juicer which we use nightly.i plan on going on a few trips this summer and am going to live my life! However the dr said no motorcycles ou UFC fighting, so I will resist

RHofm50129 wrote: I have never been a bleeder or a bruiser and have never had a low platelet count. I get diagnostic blood tests every year, and platelets were always in 400's. Then a month ago I simply lost all my platelets. Was in the hospital two weeks to get to 25. I had steroids, IVIG and WinRho. Lots of platelets. Two units of red blood cells as the high doses of WinRho gave me anemia. My platelets were zero for days, then 5 for five days, then 6, 12, 14, 25, 90, 230. I am taking 30 mg steroids now and am afraid I will tank when they lessen them. They kept telling me how hard it was to get me to respond to treatment and then I suddenly took off. Has anyone else had this experience? Anyone else slow to respond? How did you do once off steroids? I have a blood draw tomorrow and hope it is up more. I need to be stabile by July 1. We have been planning a trip to Disney World with my 7 and 9 year old grandsons for a year. I can't bear to disappoint them. Do you think I will be able to pull it off in 7 weeks?

Hi there!

First of all it sounds like right now you are fine! Great for you! I was diagnosed with ITP last year right at Thanksgiving. I have had IVIG and it worked for a bit. I was on prednisone and no real results. I am now right back to where I started at with my platelet counts, about 40. I had few joint pains when I came off the steroids, but I think my Oncologist brought me off too quick. Too fast of a taper. But! I was darn glad to be off of them! I gained 51 pounds in about 4 months. I am losing the weight now.

As for the trip, if I understand you right you are at 230k platelets count. Whoo Hoo! Happy for you! I see no problems in what you are wanting to do, but check with your doc as previously stated.

ITP is an issue, it is NOT a "sentence". I am a triathlete, and a distance runner. OH, by the way, I will be 60 soon. You can and should do what ever you wish to as long as it does not hurt you or your blood counts! Stay active! Be happy! Just go on about you life and enjoy it! Enjoy those grand kids. We don't have any yet... Don't be afraid of what might happen be happy and go on with living! I do anything I want and a bunch that my doctor just cringes at (that is kind of fun to do to them!) The key is to LIVE! LIVE STONG! BE HAPPY!

We will all be here for you when ever you need us. You go and enjoy your family! You will be just fine!

Jeffrey

Jeffrey
You are the best! You can always put a positive spin on any problem.

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.

RH:

How long do you have to wait for results? I'd get my numbers while I sat there waiting for the band-aid. It can be difficult waiting from week to week, but it gets easier as time goes on. Counts can drop, true, but sometimes they don't. And sometimes it's a very slow drop. It wouldn't be abnormal to see your counts drop down to the 200,000's as you taper since that is a more normal count than the 300,000's. They could stay there. I went into remission from my second Prednisone course after I was diagnosed. I had 3 treatment free years, but I had to go through Prednisone twice to get there.

You're doing good, kid, and there's no reason to not be positive!

RH
I know how you feel, when I first had itp I was always stressed about the counts from week to week. But, it gets easier and you stop worrying so much. You probably won't have to keep having weekly counts and that makes it easier too.

Do you have to wait along time to get the counts?

The slow taper will help you not have steroid withdrawal symptoms like achy joints and fatigue.

Gofishguy, you were having nosebleeds at 300K? And the docs felt the nosebleeds were ITP-related? Has anyone else had big nosebleeds with high platelets?

RH,

I dread those Tuesday CBC counts. They always check my blood pressure upon arrival and its always extremely high. They can get the readings in 90 seconds so at least that process is fast. I had had enough in march with them and was very frustrated with this itp thing ( this was before I went to Cleveland clinic) and took a week long break from the doctor. My counts were the same as two weeks prior. If I wasn't on Nplate I would probably take more weeks off for my mental health.

I don't get the counts for at least 2-3 hours. And I usually have to call and remind them. That's one reason I switched doctors. The first draw I had they told me that they only called people when they were bad! I thought, "What???" Like it is of no interest to me at all if it is good???

When I was in the hospital, the nurses would tell me what it was as soon as it was put into the computer.

At this time I am just wondering exactly what is making my platelets go up? Is it just the steroids or is it a carry over from the winrho I got 3 weeks ago? Or both? Or neither??

Well, that's the problem when a person gets more than one treatment at once. You don't know what works. Win-Rho usually works within 4 to 8 days, and counts can stay up for weeks or months. Prednisone can start working immediately, you can see a rise by the next day if a person is very responsive. Once in a while, it can take a little longer for counts to go up. In your case, it could be either, or both, or neither.

Sometimes ITP is acute which means it's a quick, one time thing. That can occur after an illness or a reaction to quinine. A quinine reaction is usually a very fast drop and then counts will rebound on their own and the person will be fine as long as they avoid quinine. Spontaneous remissions can occur anytime from onset to 12 months later in acute ITP, which is why it's best to hold off on drastic treatments.

I've known three people personally who had remission within the first year. I wasn't that lucky, but was lucky enough to get a 7 year remission after having ITP for 8 years (did have a 3 year remission in there too).

When I was first diagnosed and treated, my doctor did five weekly Win-Rho treatments which I had no response to. I had counts under 10 for the five weeks. Knowing what I know now, I would never agree to that. If it didn't work the first time, it wasn't going to, and I should have never had four more treatments. He then moved on to Prednisone to which I had a great response. When you are new and scared, you have no idea what's going on and don't question much. I sure learned from that!

The only way you will know what you actually responded to is if counts drop and you have to treat again. If that doesn't happen, you have to decide to not look a gift horse in the mouth and move on. At this point, it is what it is (my favorite line, by the way) and every week that your counts are up, click your heels and do a happy dance!

Vdeutsch - you have white coat syndrome!

www.ehow.com/how_5013527_avoid-white-coat-syndrome.html

What happened after your remission? Another bout of low platelets? Did they get you into remission again?

What I hate most about this is that there is no good choice to make between treatments. They are all crappy. I think if this does not go well for me, the choice will come down to promacta or a splenectomy. And neither are attractive to me. I guess it is 50-50 at my age with the splenectomy and if it does not work, I am worse off. And I hate the idea of being tied to a drug like promacta with all its severe warnings and its huge expense for the rest of my life. The idea of a splenectomy with nasal tube and drains and catheter-- ugh. And all sorts of nasty possibilities.

Given that you were only diagnosed a short time ago, and you are responding well to steroids, neither you or your doctor should even be considering splenectomy at the moment!

People get on quite nicely with a lower than normal amount of platelets. And lots of people do seem to get a remission - either spontaneous or from treatments. I know its difficult to do, but its not worth worrying about what might or might not happen in the future with your ITP - if it happens, you will cope with it, if it doesn't, you will have wasted your time and the quality of your life at the moment. Try and forget it for a while and see what happens with the taper.

Good luck.

I know that is really good advice. I think at the moment it is almost impossible to follow though. To realize that you have always been told how healthy you are and that all of a sudden, over night, you have an incurable disease with no good treatment-- very hard to wrap your mind around.

After I had the three year remission and counts dropped, I kept using Prednisone as needed. I refused high doses because it affected my ability to be a good employee and mother. I'd just do enough to keep my counts in the 20's and I was fine with that. It did get old after a few more years, so I moved on to Rituxan. After doing that two years in a row, I got the remission I'm in now. I was diagnosed with Lupus at that exact time though, so I went right from one autoimmune disorder to another.

It is hard to accept having an autoimmune disorder. But things are so much better for ITP now than they've ever been. There is so much new research and ways to manage it than ever before. No, it's not curable, but it is manageable. Most people get breaks (long or short) in between treatments and life can be totally normal then. It might take a while to find the treatment that allows that to happen, but we've all been there. You get through it and come out stronger on the other side. You take a deep breath and tell yourself "I can do this" and you just do it.

There are people with ITP that also have APS which is a clotting disorder. They can have low platelets and still have serious clots, so they use blood thinners. That would be hard to manage, but they do. I have APS antibodies, but luckily have never had a clot. I take an aspirin a day for preventative measures. Things could always be worse. I once read an article by an ITP specialist who said that if you have to have a hematological disorder, ITP is the best one to have. I've always found things like that to be helpful because you can see another perspective.

There are no easy choices with this, no. You flop around like a fish out of water trying to make the best decision. The best decision I ever made was to choose not to have the splenectomy. Since I ended up having APS antibodies and Lupus years later, it would have been a very bad choice that could have affected me greatly. I've been on some pretty potent immunosuppressants and have been sick many times. Not having a spleen could have killed me by now. One bad thing is that I've been on Prednisone for the last 8 years, and it is destroying my bones. I had spinal stenosis last year from spine deterioration and have had two stress fractures in my foot, I have one now that I'm dealing with. Medications can cause damage, but you have to do what you have to do. At least with ITP, you can have breaks from it and life can be quite normal then. You have to make decisions based on not only how it can affect you now, but how it can also affect you in the future. If only we had a crystal ball!

Promacta does not have to be for life. Remissions do happen for one, and new treatments could also come out some time soon. Anything could happen, so to say you'd have to take it for life is a pretty dismal way to look at it. Right now, time is on your side, so take your time and research things. You'll figure it out.

You are so positive. I am glad you are still on this site. I am sure you have helped many people wrestle with this. right now my husband and I are still feeling blindsided and overwhelmed. I hope that passes within reasonable time.

I always get odd diseases. When I was 12, I got a giant cell (benign) jaw tumor that my oral surgeon, who was near retirement, had only seen one other time in his life. I had weird delivery problems which caused me to have 2 c-sections. I got some oddball thing in 2000 in which a line of seven abscesses grew in my armpit so I had to have my armpit cut open and those removed. A couple years after that I moved and got nerve damage in my right hand from unpacking the entire house in 3 days. That took several months to get over because it was misdiagnosed as carpal tunnel and the treatment made it worse and worse til I could not touch even a kleenex without it feeling like razor blades. And then in 2008 I was given a cortizone shot in my knee and the guy hit a nerve so that my knee swelled up hugely and agonizingly and I could barely walk for 3 months. I might point out this happened exactly 3 weeks before we were to leave on a mediterranean cruise. My doctor said not to go, but we went. I was in quite a bit of pain but I still enjoyed the trip. We rented a wheelchair and went. My poor husband pushing me all over the place. so I should not be surprised that I got this weird disease as well. I always said I was going to die of bubonic plague or leprosy.

Ha, and my husband always jokes that he's going to put "She said she was fine" on my tomb stone. No matter what happens, I always tell him I'm fine. I did that when my counts were low, when I was going through treatments, when I went to work with pneumonia, and when I had spinal stenosis. I had a bone spur half way embedded in my spinal cord and the doctor said a fall could paralyze me. I waited to have the surgery until after we went to a Moody Blues concert that we had tickets for. I waited six weeks to have the surgery which were the longest six weeks of his life. The concert was well worth it!

Okay, so you've had other weird things, you can handle this too! Just another bump in the road of life. I would never tell you that "God doesn't give you more than you can handle" because oh my, I've had way more than I can handle at times! I've cracked under that pile of things here and there, but did get through it. That's what counts. Life isn't fair but it is short, so you have to make the best of whatever you are handed. It's okay to cry and get angry and really, go through the stages of mourning. But when you reach the point of acceptance, you find a calm and a peace that you finally came to terms with the whole thing and can handle it. Death from ITP is very rare, so the real scary part is dealing with the treatments. As long as you respond to any treatment, bleeding will not kill you. That's a fact. Studies have shown that more people die from infections than bleeding, so if you can minimize that risk, you'll be fine.

I have neuropathy in arms and legs so sure do know the feeling of being pelted by sleet. It comes and goes so I am very lucky to have breaks from that. I am slowly losing sensation in my feet though, but there's nothing I can do about it. I've been misdiagnosed a few times too, which is the real reason I research so much. I have a mistrust for doctors and do not automatically do what they tell me. I consider it, but ultimately, end up making my own decision.

Sounds like you've been through the mill, and you are not that old. My husband has big time problems with neuropathy from diabetes. He's dealt with that for 15 years. It slowly causes more and more problems even though he has maintained his sugar levels very well thru diet and various drugs. It is far worse than most people realize. Diabetes is an awful disease, especially if you have gotten it long enough for it to ravage your body.

I guess everyone gets bad cards dealt to him. I am just hoping my counts stay up and I can have a remission earlier than later.

Sandi,

You crack me up! I def have white coat syndrome! I love your phrase " it is what it is."

VDeutsch, what happened after your remission?

RH, I'm sorry to hear about your husband. I know diabetes can be devastating. Do you have a first name or should we keep calling you RH?

Vdeutsch, do you have a name?

Yup, Roberta. Named after my Dad. And my mother. Middle name Louise like hers. Just watched a video about nurses donating their hair to Locks of Love. Bunch of kids with cancer. Put things into perspective. Blood draw tomorrow. Keeping my fingers crossed. I have a bit of a sore throat last couple days. I hope that does not drop them.

I am already so sick of focussing on illness.

Hi Roberta,

You aren't really doing as bad as you think. Your platelets are not in the danger zone and there is a good possibility that you will get off of prednisone. We have Karen on this site who also has to take prednisone daily since her platelets fall from taking arthiritis meds. Is there a possibility that your platelets are falling from taking some other meds? This did happen to me.

Hopefully, you will get to still enjoy your cruise. I try to do as much as I can since my last relapse. That was almost three years ago and my husband and I were going on a cruise. I had to cancel it because my platelets would go to 1 and would hardly budge.

Good luck to you and try to keep reading and keep informed

Dee Dee

Thanks, Dee Dee. I hope you were able to reschedule that cruise. I care most about it because I can't bear the idea of telling my grandsons they aren't going.
No, the only other med I take, and I have been taking it for years is verapamil, and the doctor says that would not do it. I could not come up anything that could have started this and either could he.

I start to get really nervous on Tuesdays and damn near frantic on Wednesdays because that is when I have my blood draw. If only they would give me the results immediately like some people do. But, no, I have to wait hours to learn it.

Hi Roberta,

Yes, I did go on my cruise a year ago this last November. And, I now go for my CBC on a yearly basis. I was able to diagnose my last relapse myself, so the hemo knows I will know if I am in the danger zone--so in between, I try not to worry too much.

I was going to mention that the med I was taking for 15 years, I suddenly became allergic to it. I had started before my relapse to have signs of eczema on my lips and was concerned about it. The medicine was doxepin and is known to lower your platelets--so it probably started to bother me after I developed ITP.

I still worry when I go in for my CBC (especially since it is on a yearly basis). Try not to worry too much unless you are showing signs of bruising or bleeding. If your signs are stable, I would still try to make that cruise!!

I think it would be scary to just check annually. I wonder if insurance would pay more often. I got no signs at all til I was at 10,000, and the doctor thinks I simply crashed precipitously with no gradual decline. So that's always in the back of my mind that if it happened once like that, it could happen -- today!

Mine also just crashed within a few hours. I actually think I got bit by a bug before I crashed. The first time I relapsed in 2006, it was more of a gradually decline. But, in 2010, it was a complete crash within hours. I had signs of bleeding when I crashed so I knew what had happened. If I don't have signs of bleeding, there isn't as much to be concerned about. The main thing you
to worry about are signs of bleeding, especially the blood blisters.

When my platelets were at 12,000 and the bleeding signs had subsided, I really stopped worrying so much. Probably because I've had the ITP for 7 years, I don't worry as much; plus, I attended the ITP Conference last year and met people whose platelets never go up, but they don't have signs of bleeding. They are fairly stable and seem to accept the ITP.