Life Expectancy for ITP Patients

ITP, low platelet count, low Platelets, ITP disease, immune system disease, living with itp.

Warning – This article contains spoilers of what might be install for you.  If you wish to remain ignorant then don’t read on.  You can’t un-know something.

A few days ago, I received a harmless email from our assistant Charmaine, saying she had written up a summary of the research I asked for.  It wasn’t a big deal.  A few weeks ago I asked her to investigate the impact of ITP on predicted life expectancy for a blog post I wanted to write.  This one.  I had told her there was no rush with the research and to send it through when she had found something.

I did not expect her email to change how I thought about my life.

Life Expectancy

This is what she sent me.  ‘Based on the conducted research, Cohen, et al. predicted that a 30-year old woman remaining thrombocytopenic due to ITP would lose 20.4 years (14.9 quality-adjusted life years) of her potential life expectancy. At age 70, predicted loss was 9.4 years.  So, if a woman in her 20’s finds out that she has ITP, her predicted life span would be up to her 50’s.’

She concluded that a persistently low platelet count was a grave prognosis.

BRUISES - ITP, bruising easily, hide a bruise, Bruises, Bruise, itp, low platelet count,  Treatment - Treatment for itp, treatment of itp, treatment itp, itp treatments, Side Effects Prednisone,
Google Search Results for ITP Life Expectancy

As you can imagine I completely flipped out.   Fuck!  I am 28 years old now.  If I continue to act like an average person, then I will have an average of 22 years left…from now.  I couldn’t believe it.  I felt so sad and then suddenly annoyed.  I felt cheated that nobody had told me this sooner, and stupid for not searching myself.  I felt so naive for never asking more questions and confused about what it all really meant.

I wished I never knew…

And then, I sat down, made a plan and decided to get to the bottom of where this number came from and how I could make it disappear.

My Own Research

I followed up the articles that Charmaine had sent me.   I slowly read through each of them, trying to digest the dense medical terminology.  I got very confused and found myself getting mixed up between life expectancy and life quality; the difference between Chronic ITP and Acute ITP.  I am not a doctor and could not read the articles, but I tried.

My eyes where hurting and I had 6 different tabs open on the internet, I leaned back in my chair and told myself I couldn’t do this…  And that’s when I noticed something interesting.

The article I was reading was published in 2006.  It was old.  It was 8 years old!  Another article was from 2000.

Yes! I thought – Surely things have improved in the last few years.  Medical research is developing quite rapidly I would think.  My prognosis must not be all that bad after all…But I kept reading.  Everywhere I looked it was evident that ITP would have an impact on my predicted life expectancy.

life expectancy, Treatment for itp, treatment of itp, treatment itp, itp treatments, Side Effects Prednisone, Talking to a Doctor

Obviously the Internet is the worst place ever to investigate medicine, so I asked my doctor(s).

They made it clear that those figures where indeed older than they should be; and that yes, things have improved and are always improving for ITP patients.

‘How much of an improvement?’ I asked.

‘We don’t know.’

My doctors stressed that these number where just averages.  I am sure they were trying to make me feel better but all I took from the conversation was that a lot of people must be dying earlier too!  Fuck again!

My doctors said it is very important to not get carried away with numbers and averages and studies on people that aren’t you – Everyone is different.  If you never heard this number before – It wouldn’t matter.  The facts would still be the facts and you may or may not outlive your life expectancy.  They all told me the best thing you can do is to live a healthy life and take care of yourself and your body.

The Problem the Research is…

The problem with reading the research is, statistics can be made to show anything.  Research can be flawed.  Tests are performed on very small testing groups.  Patients with ITP are hard to find and even harder to test on.  Everyone with ITP is different.  The selection pool is little and the statistics are tiny.

A Medical Research Scientist contacted me by phone a few months ago to see if I would be interested in participating in a clinical trial for ITP.  I said, ‘Yes’.  He then asked me a number of questions to make sure I was eligible.

  1. I had to be within a certain age range – TICK
  2. I had to have had ITP for more than 2 years – TICK.
  3. I had to not be pregnant or breastfeeding – TICK
  4. I had to have a platelet count lower than 50 – TICK
  5. I had to not be receiving any medical treatment or taken any treatment in the last 6 months…… UM – WHAT???

This man could not find anyone to participate in his study.  He doubted he would find anyone to participate.  People with ITP are hard to find, and when he does someone to study – they are not eligible.  ITP behaves and manifests itself so differently in all of us.

This scientist was taking his findings back to the medical research board to explain the problems he was having in finding candidates.  ‘Would you be interested in not taking medication to participate?’ he asked  as a very last chance.  ‘Um…No’  I replied.

The Good News – Choosing not to be ‘Average’

So I started to feel better.   I decided that this number was not for me.  I was not having it.

If you are wondering why no doctor has told you your dramatically shortened life expectancy – It’s because it doesn’t apply to you.  Not anymore.  Not if you are smart and healthy and take care of yourself.  Not if you start to understand your body and educate yourself about how to be ‘well’.

There are always things you can do to change your diet, take vitamins and supplements such as Blood Well.  To be aware of this number, I started to think is quite liberating.  After making peace with it, I now have the motivation I was looking for to take on more holistic forms of treatment.  I am going to really learn what it is to be healthy.

Paleo, Autoimmune protocol, eating for itp, ITP diet, Bruise, itp, low platelet count,living with itp, jess Ainscough

I am researching alternative therapies and have started reading Make Peace with your Plate by Jess Ainscough.  This is a picture of me making one of her juice recipes.  It was earthy but also delicious.  As my friend Susie would say, ‘It tasted like the ground’, but I will go back for more.

There are so many myths out there about what being healthy really is.  I need to get to the bottom of it – And Jess is helping me get there.

Knowing what the average life expectancy for patients with ITP is, has reminded me to be more than average. I am now looking for a better, more informed life style.  I have been motivated to learn a thousand more things about my own health, wellness and lifestyle.

Realistically I know that ITP will have an effect on my life.  I just need to remind myself to always treat my body better.  I am not going to get carried away with the number.  I am just going to be good to myself.

The research for this article has come from a number of different medical journals.  If you are interested in reading more you can find them here.  I recommend you don’t read them, (I recommend you read this instead) but it is up to you.

Further Reading 

 

 

by Meg

Meghan Brewster is a writer and blogger. She is an ITP patient and launched ITP&Me in 2011. She is a coffee lover and a try hard dancer. @meghan_brewster

39 thoughts on “Life Expectancy for ITP Patients

  1. wendygrundy@gmail.com'
    Wendy Grundy says:

    My daughter has had ITP for 16 years ..or do we call it IT now .. ? Ive have never heard of a lowered life expectancy, my daughter has also never been treated in any way or form . This article has scared us both ,after seeing some of the best hematologists in the country why has noone ever said this before? Worried all over again .

    • Meg says:

      No, you don’t need to call it IT now…. I think they have kept the P from ThrombocytoPenia. This article was never meant to scare you all over again. What we were trying to draw attention to is the difficulty of gaining information about ITP and the problems that doctors have with getting a group of ITP people together to study them. Yes there was a study done that discovered an altered life expectancy… but every ITP study group is limited. What we hoped you would get from this article is a reminder to be healthy and strong and take the best care possible or yourself and your family, and not take too many things for granted.

  2. michelle_borel@hotmail.com'
    Michelle Borel says:

    I have had Chronic ITP for more than a decade now… My platelets drop to as low as 8… I live a normal life and have three beautiful healthy kids… I found this article though to be informative. I live in Trinidad and I never met someone else with ITP… So it does feel like my condition is snobbed when noone knows of it or understands it. Thank you so much for this article and chat. I fit into the criteria u need for your research… Feel free to call or message me anytime 18683898465

  3. c.bentzen@aol.com'
    Cat says:

    I have ITP, I was diagnosed when I was 17. I can feel my life literally draining out of me. I am 21 now, I have had to live fast, because I’m only gonna be here for another 20 years. my platelets are an average count of 16-34k, always. My stems cells can not compete with the huge bruises and constant healing and blood loss. This blog I am grateful too, I have had some many questions that no dr has wanted to answer to my face, and I feel comforted in knowing my assumptions of how much time I have left is what I felt it would be. It makes me sad, but I can now feel at ease with not knowing the truth. (my family life expectancy is around 60 due to mainly heart attacks. )

  4. yordie.sands@outlook.com'
    Yordie Sands says:

    Your article is at once both shocking and refreshing in its candor.

    I was diagnosed with ITP about a year ago but my platelets dropped significantly (78) back in 2012. So I guess you can say I’ve had ITP for almost three years now (latest count is 48). I’m naturally concerned with longevity but more concerned with the whole “quality of life” issue. I suppose my biggest fear is that day when something goes wrong inside me and I’m rushed to the hospital. I’m not sure where I am on the “stages” of acceptance, but I’m really just getting started with studying the condition.

    In my initial visit I had petechiae on my tummy and lower legs, some bruising, but not significant bleeding. Since then most of my bruising has become minimal and even my petechiae are less, and still no bleeding. I do seem to have a lot of fatigue though. My hematologist has been trying to pin down my category, but he’s ruled out idiopathic and for now he’s using chronic in his diagnosis. In that first visit he told me of a patient with a platelet count of only 4, and she was living a normal life. Clearly, this is a strange condition and seems to vary from person to person. And why such a large percentage of women?

  5. edollins@hotmail.com'
    Eddie Dollins says:

    I’ve had chronic ITP for 19 years with counts hovering between 10 and 50. Luckily I’ve had no symptoms, so far. I think, as a guy, it’s easier for me to just not think about it. Men are good at denial. Anyhow, I don’t want anyone reading this article, or anyone reading these comments, or any of you commenters to make assumptions about how long you’re going to live. No one, not even people without disease, know how long they have left. Don’t tell us you only have 20 years left! You don’t know that. Good luck to all of you, and try not to worry too much. A positive attitude will go a long way.

    • Meg says:

      We completely agree Eddie. Thanks so much for the comment. Positivity and a healthy outlook are powerful and important. We thought it was important to discuss as information about life expectancy and ITP is out there online and can look very bleak when you discover it on your own. At least here we can remind each other that the number is meaningless when you take care of yourself.

  6. schiavo24@gmail.com'
    Brett says:

    I didn’t have chronic itp but I had it when I was 8 years old. I don’t know what the difference is but I’m 23 now and I’m completely healthy and forget I have it most of the time… Should I be worried and get my platelets checked or just don’t worry about it since it’s been almost 20 years?

  7. harryanitar1@outlook.com'
    Harry Share says:

    My Wife has ITP she was diagnosed when she was 40. now she is 49 can you tell us what to do and how long has she got?

    • Meg says:

      Oh my goodness, no. I’m sorry to hear about your wife’s ITP Harry. What is important that you understand from the above study is that the information was incredibly limited and done a long time ago. It is the only clinical study done on the life expectancy of ITP (That I can access) so the data is quoted and referenced quite a lot – But it in no way reflects the life expectancy of individuals with ITP now. Good luck.

      • harryanitar1@outlook.com'
        Harry Share says:

        But I found out that the UofA dose research but the money is limited so I am now running a campaign on Booster/comITPResearch. I am with their help are selling tee shirts to fund the U of A med research lab in conjunction with Banner University hospital and banner university internal meds and this is how you may help tell anybody you can try and get then to buy the tee’s Please!

  8. lisa2268@outlook.com'
    Lisa says:

    I found out I had ITP when I was 34 and I am now 48. My platetes would drop as low as 2. I’ve had to have platete transfusions (IVRhIG), a splenectomy, and then I had to have chemo. ( Rituxan) After going through that, my ITP has been been in remission.

    • irishelf7175@msn.com'
      Lori says:

      Lisa my story is similar to yours. diagnosed at 30. spleen was taken out at 3, then came the portal vein thrombosis *another, almost exact opposite affect* now I have both. A little over a year ago, I had another organ take the spleens place. Very quickly, my platelets dropped to 18000. by that night was at 9500. I have IvRhIG in the hospital, which worked for a couple days, then down they went again. I immediately began Rituxan chemo infusions. The shelf life of Rituxan, at max, is 2 years 4 months, before it comes back. I am currently at 15 months. So I am now becoming a ticking time bomb. My hematologist told me, that I can do one more Rituxan round. Once that is gone, my only course of action is a daily pill. One side affects that is 100% guaranteed, it depletes and destroys your bone marrow. THAT is just the ITP. I still also have portal vein thrombosis, and lupus.

      • tafield66@gmail.com'
        Todd in Windsor ON says:

        I’ve asked a wide range of doctors about Urticaria co existing with ITP to no avail. My gut instinct is that autoimmune diseases are not treated effectively because of ignorance. Meanwhile l just keep searching. Thanks. 😊

        • keylimecatering@gmail.com'
          Jenny says:

          My goodness Todd, my little boy who is now almost 5 has been diagnosed with ITP for 4 years. He also suffers with a condition that we believe is urticaria! But no doctor has helped. In the cold he gets big lumps and red welts on his ears , face, arms and feet. They itch and when he warms up they are worse!!

    • carlacocking@icloud.com'
      Carla says:

      I’ve had Ito since I was 18 now I’m 41 my platelets were 0 ,I had to have the same treatment as you but different chemo . I had a scare a few years later when my count dropped and they thought my spleen had grown back.since then I’ve developed Vasculitus which is not uncommon when you’ve had Itp

  9. mn.m.n@hotmail.com'
    Mike n says:

    Hi. my name is mike. I’im 23 years old and Doctors found that i have Itp when i was 10 years old. My platelets can drop as low as 20. they then asked me if i want my spleen to be removed to increase (70% of chance) my platelets counts. I always refuse since then because i live a normal life and i am healthy. So when i read that article saying that the desease can decrease 20 years of my life expectancy, i was shoked… I want to know: 1) the reason of that decrease as you get older. 2) the number of patients with itp followed during that research. Thank you and have a nice day

  10. angi@mathochist.com'
    Angi Long says:

    I know how scary those stats are to hear! One of the first things I read when I was first diagnosed was that 1 in 20 — 5% — of ITP patients eventually die of hemorrhage. That’s a big number, when you’re talking about death!! Of course, there are so many other factors that contribute to your own personal risk factors and outcome. But I do wish doctors would give us ALL the information. Even if my life expectancy is lower than most people’s, I need to KNOW.

  11. lynnjpatterson07@gmail.com'
    Lynn says:

    Just recently found out I have ITP with a count of 8. iVIG brought it up and I am on prednisone which isn’t agreeing with me so they have coupled this with azathioprine. I’m scared, unsure of the future and can rid myself of the feeling something else is going on. My count reached 142 but has been falling by about 30 on a weekly basis. Unsure what the future holds. I liked your article. I think the message you tried to get across that this article didn’t apply to us all. It would be good to talk to anyone in a similar situation who is newly diagnosed. I am relying on Internet information which usually isn’t always helpful.

    • stephbridwell34@gmail.com'
      Stephanie Bridwell says:

      Hi our stories seem similar. My name is Stephanie and i was just diagnosed with ITP. My platelets have gone down top 2,000 and with IVIg went up to 37,000 them 3 days later back down to 6,000. Also did whinro and now 4 rounds of rituxan. My platelets went up to 242,000 and now a month later are falling about 10,000 a week. The hardest part for me is the 100,000 mg of Prednisone they have had me in. Im now tapered to 80 and have gained 30 lbs and am extremely uncomfortable and miserable.

  12. fatima.sabiqoon@gmail.com'
    ITPer says:

    Stumbled upon this blog. I am 34, physician, and a fellow ITPer. I was diagnosed as a kid at the age of 7-8 had ivigs and splenectomy and went into remission for 20+ yrs until I had my kid at the age of 27 when my ITP returned and since then it has been there. I went through two more pregnancies with ITP. I dont take treatment outside of ITP. I have eliminated sugar from my diet try to eat organinc/healthier foods less processed foods. The only thing that personally made a difference in my platelet count was zamzam water from Makkah. I happened to have only that water for about a month so was drinking that and it naturally increased my platelets to 70,000 while before that I would not get above 30,000 and my average was 18,000. i wanted to ask about a certain type of fruit that might help and on the note of life expectancy that is scary because I guess we have to prioritize.

    • akhanid@yahoo.com'
      Khan says:

      Hi
      My son 9 diagnosed last week with a count of 30000. Just need to know zamzam water is really affective. If you can give your email I will be really thankful.

  13. bhandley123@yahoo.com'
    Brooke says:

    I’m writing a paper on ITP and I thought it would be easier because I’ve had it for 13 years, I got diagnosed at 2, but sadly there’s a lot I don’t know

  14. tiaeleanor@icloud.com'
    Tia says:

    I was diagnosed with ITP at the age of 4. I am now 11 and only just found out about it when came back from a holiday with school! My mum got worried cause of all my bruises and told me I had a transfusion at the age of 5. I don’t know anything about ITP and never been to the doctors about it. Do I need to be worried about how long I live for? Do I need to worry I know nothing about it and have never been to the doctors? How long will I live for if I was diagnosed at the age of 4?

  15. stephbridwell34@gmail.com'
    Stephanie Bridwell says:

    Hi our stories seem similar. My name is Stephanie and i was just diagnosed with ITP. My platelets have gone down top 2,000 and with IVIg went up to 37,000 them 3 days later back down to 6,000. Also did winro and now 4 rounds of rituxan. My platelets went up to 242,000 and now a month later are falling about 10,000 a week. The hardest part for me is the 100,000 mg of Prednisone they have had me in. Im now tapered to 80 and have gained 30 lbs and am extremely uncomfortable and miserable. Is there a better option for me besides prednisone. I was taking benzomethazine while doing to rituxin but that was extreme.

  16. tafield66@gmail.com'
    Todd in Windsor ON says:

    ITP is an autoimmune disease and could be co-existing with (CUI) Chronic Idiopathic Urticaria. Someone said that there lTP was co-existing with Lupus Erythematosus. This was my original diagnosis. Thank you everyone who shared your help is deeply appreciated. Peace and Love one and all. 🙂

  17. strongestcevar@yahoo.com'
    Michael says:

    I was diagnosed with ITP when I was 7 yo , Im now 30 yo and have lived quite beautiful up to a certain point. Ive started to have bouts of weakness and failing platelet count when I reached my late 20’s and have been in and out of the hospital since. Currently im off meds, and living a peaceful life of denial. Its not as bad as it looks.

  18. patvanhook@gmail.com'
    Pat says:

    I was diagnosed this last year at the age of 77 with chronic ITP. My counts have ranged from the high 40’s to 184 at present. I am not on any meds and had successful knee replacement surgery. I also have Factor 5 Leiden, which can cause clotting. I wonder if the chronic ITP and the factor 5 are working together to keep my platelets in balance. Blessings to all.

  19. sgromey@gmail.com'
    Steve says:

    I have had ITP for perhaps 30 years. I have some down periods, but I have lived a normal life through the vast majority of this time. I have not had any medical treatments as I think the medical treatments are harsh and largely ineffective and usually lead to bigger problems…like having a splenectomy. Choosing to be strong, independent, and follow the common sense rules of good health will allow you to lead a normal life. Avery good traditional Chinese Accupuncturist can help quite a bit, especially the Chinese herbs. Don’t let doctors bully you. Few of them have a clue about ITP. I have decided to live a very long and happy life. So, it shall be.

  20. veesting@gmail.com'
    Viola Ramsami says:

    Viola

    I was diagnosed with ITP 3 years ago. Always had heavy bruises my doctor that I previously went to said I was high maintenance and always just put me on antibiotics. When I was hospitalized the first time my blood count was 2. I first went on courtezone for 6 months then had a splenectomy. At first my blood count went up to 200 it was perfect and then it started to drop the last was 40 then I stopped going for blood tests. 3 years of avoiding my doctor my blood count is 8. I will be hospitalized today for blood transfusions. I’ve been thru all the stages realized I can’t run from it. This is part of life and here to stay.. Just be positive and make the most of today…

  21. Pingback: Most popular ITP Books, Blogs and Articles for 2016

  22. KBubble18@gmail.com'
    Kelly says:

    Hi, I was diagnosed 12 days after my 14th birthday. I am currently 32 so I’ve had it 18 years. I have done everything medicine out there that’s available, including the medicines that are or were in the trail phases. I’ve had my spleen removed, lost my hair on chemo 3 different times(all of the chemos available not just 1…was on 3 at 1 time this last go), platelet infusions, steroids, Nplate, IVIG, etc. Nothing has worked for me. My platelets go below 1,000 to where they won’t even register when being counted. When given platelet 6 pks my platelets won’t come up generally any more than 2,000-5,000 when it should raise them by 30,000 to 60,000. I have seen doctors and specialists all over. I was actually hospitalized for a while when we were going to try an Stem Cell Transplant but I was not strong enough to survive it, so we post postponed that and haven’t ever revisited it. I think I just know it wouldn’t work anyway. I have had more “rhino rockets” for nose bleeds than I can count and plenty of stay in ICU. I also ended up having to have an ablation with coils done to stop my menstrual cycles due to the fact I would bleed for months at the time and become severely anemic. After THOUSANDS of IVs last year I finally allowed my doctors to talk me into getting a life port. I will say treatments are much easier now. ITP is a horrible disease and each and every person who has it; has a different story, a different experience, a different response that they have had to treatment. This is just mine. Now I do believe that if effects MY life expectancy. No doctor can tell you when you will die, or exactly how long you have left but they can tell you what your body is doing. My IVIG, which is my current treatment, has done a number on my heart and kidneys. The chemo wasn’t too nice on my kidneys either. I have extremely low BP now average is 90/50 and during my IVIG treatments it’s dropped as low as 60/35. I get very light headed when I move too quickly and can even pass out from laughing. My heart is just weak from all the medicines. My kidneys do not function properly and because of that I have a lot of kidney issues. Even as a Chronic ITP patient, my doctors say I am very rare! I have none at all, to very little/shorten responses to treatment. I am in NO way saying this is everyone’s case, but for me, my time is now limited. I can feel my body getting tired. I am currently getting treatments every couple of weeks and I know it’s just a matter of time. But let me make this very clear…I am very thankful and I’ve had a good life. I’ve never let this ITP define who I was. When doctors told me I couldn’t…I proved to them I could! When I was supposed to be in the bed resting because that’s what people on chemo did…I was out coaching cheerleading & t-ball, horseback riding, racing my car, camping, throwing parties, planning VBS for my church and making so many memories with my family and friends. When my doctors told me no tattoos or body piercings…I did both. Why? Because I wasn’t going to be told I couldn’t just because of a disease that had robbed me of so much I couldn’t control. Sky falling, sling shot thrill rides, roller coasters, skating, racing, having my daughter(even though she was born at 31 wks and I almost died during an emergency C-Section with a platelet count of 11k). Yes!!!! I did it all. I have a bucket list that will never be completed. Because every time I complete something, I add a new item. Why?…because I never want to feel like my life has been completed. I always want to have a reason to keep going because as strong as I am, I do still have days of weakness too where I want to throw in the towel. Although, I’ll never give up. My ITP has not defined me and to anyone reading this, yours shouldn’t define you either. There will be things you have to do differently than others, but do them anyway! There will be things that you get “robbed” of that no matter how bad you want to change it you won’t be able to, but replace them with something better. And don’t let a ticking clock determine how you spend your days. Just live your life. God has a plan for you and you may not understand it now, but one day it will all make sense. As for me, whether I have 1 week or 1 decade left, I’m going to live it the same way. Laughing with my family and friends so that even when I am gone, they will forever hear my laughter and carry on my memory of always living life to the fullest regardless of the obstacles in my way.

  23. smastenmk@gmail.com'
    Sydney says:

    I am a 43 yr old female, diagnosed October 28, 2008 with ITP (platelet count was 1) – almost 9 years ago. I started with blood blisters in my mouth, petechiae, faitgue, large hematomas, mennorhagia (a box of 36 regulars in less a 24 hour period) & nose bleeds. I was immediately admitted to the hospital and started on IV steroids (solumedrol), oral prednisone 120 mg a day and IVIG infusions. 1st hospitalization was 6 days. My platelet levels were 22,000 upon release. I was then treated at the Charleston Cancer Center every other day. Had a bone marrow biopsy November 18, 2008 with a platelet count of 0. I, then, internally bled into my backside for 3 days, with a massive hematoma of 11’x23″ eggplant purple. Woke up Friday November 21, went to the bathroom and discovered red in my urine. Immediately, called the doctor’s office. I was admitted to the hospital a 2nd time due to loss of blood and platelets (1,000 level). I was given a PICC-line (I am a very hard stick) and started on solumedrol, round the clock blood and platelets. On Tuesday with levels of 70,000 November 25, we decided to do the splenectomy – spleen was 3 lbs and had an attached splenule. Did not have much success from that and was not advised to leave the hospital until we had started N-plate therapy. The 2nd hospitalization lasted 16 days. The N-plate caused my levels to jump into the millions and then crash 600,000 at a time and caused excruciating headaches. Did not stay on it for too long. PICC-line removed August 2009 after having pneumonia. Given a round of Rituxan (1/wk for 4 weeks). Started Promacta at 25 mg/day, eventually ended up on an increased dosage of 75 mg/day. My levels started to stabilize in 2011. I was 10 months stable, when I ended up with pneumonia February 2012 causing the ITP to flare again with roller coaster levels. I was given a chest port February 2013 and have been on a treatment plan of IVIG 90 grams – 5.5 hrs infusion and chemo Vincristine/Cytoxan .5 hrs infusion for the past 4+ years, every other week. The Vincristine was for the 1st 6 months, but after neuropathy issues was taken off and changed to Cytoxan. My levels have been stable in the 100,000 range for a whole year now!! Recently, we adjusted treatment to every 3 weeks. I did have a re-do splenectomy December 2013 with 4 more splenules. My doctor finally agreed to a uteran hysterectomy April 2015 and though it did not change anything drastically with my levels, it does mean that I no longer get those horrible visits from “Aunt Flow” 🙂 Through my ITP Roller Coaster Ride, I have worked full-time, as much as I am able -gotta pay all of those bills. I have kept a positive attitude (cup half full) which I attribute completely to my faith in the Almighty Healer, my Prayer Network and my loving, supportive family. There isn’t any guarantee as to how long we are given in life – could be tomorrow, a year or 50 yrs from now. It is what you do with the time you have that is important. I pray for each and everyone of you in your ITP Roller Coaster Rides. God bless! <3

  24. Camkirchmeier@gmail.com'
    Camille says:

    I am a nursing student who also has chronic ITP. I have had almost every type of treatment imaginable, and finally had a splenectomy with some count stabilization. Not only are these statistics outdated, but as you stated statistics often reflect desired findings. Besides that, these statistics show data with patients who consistently continue to be thrombocytopenic, which means their counts are low and stay low. With successful treatment methods and remission states, this data isn’t valid. If your counts improve even a little for a period of time, this particular research doesn’t account for that. As someone going into the medical field I have found that most studies/doctors must report worst case scenarios because of possibilities and the now ever pressing issues of lialibilties. Never forget that medicine, unfortunately, is also business. This all being said, I have a support group friend with cITP that was diagnosed in the 70’s and is currently 82 years young. She reports her quality of life as being “fucking fantastic.” Her words, not mine. 🙂 Good luck on your journey all!

  25. fleaky53@gmail.com'
    Cassandra says:

    I’ve had chronic ITP since I was 6. Am now 31. I’ve learned to contend with it in my life. Right now my platelets are at 78k. Lowest they ever got was 54k. I have good days where I can get a lot of housework done, then I have bad days where I feel like all I can do is sleep, I feel so tired and wore out. I also have lots of food allergies so I can’t just eat all the super healthy stuff I want either. I’m 31 though, and despite all that, I’m not feeling like I’m going to die any time soon. At least not till my 80’s or early to mid 90’s. Bad days are to be expected with ITP. I try to focus on the good ones 😊

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