IAmA 24F currently in the hospital for a possible case of ITP (Idiopathic thrombocytopenic purpura) Which is an auto immune reaction that attacked my blood platelets. AMA

I was diagnosed with it when a was about 7. 41 years old now without any reoccurring problems. Good luck to you.

Thank you!

Wow, this is new. My little brother has had this pretty much his whole life (19 now), so I'm pretty familiar with it, yet I've NEVER come across anyone else with it.

My parents would always have to go in and have meetings with his new school teachers and principals and explain everything, because some of the bruises he would get would appear quite worrying to teachers. Like, seriously, you have seen nothing until you've seen some of the bruises someone with ITP rocks regularly. So dark they absorb souls.

Mine started almost suddenly about a week ago and were probably some of the nastiest bruises I ever had. Some of them are starting to heal which I take as a good sign and have only had 2 or 3 smaller ones appear more recently. Best of luck to your brother!

I don't really have any questions but just stopped by to wish you well and hopefully a full recovery? Ok I have a question:

Will you be able to recover from this? What causes it? Is it contagious?

I hope you have family and friends around. Thanks for doing the AMA

I should be able to recover from it yes, it can go fully into remission, though I was told it can come back in rare circumstances. A lot of the time it is a one-time thing. Most cases are treated the way I'm being treated currently. It is not contagious, but I am easily susceptible to other infections because of my current low immune system. I thankfully have a lot of friends and family support, coincidentally my sister works in the hospital I'm in so she stops by occasionally during her work shift. Thanks for your support! This relieves a bit of boredom and I'm thankful for being able to use my laptop, albeit somewhat gimpily since they have I.V ports in my right hand and my elbow is tender from a third one I asked them to remove.

Is your WBC low too? Or is your immune system depressed from the steroids?

Yeah all counts were low, they have me on immune-supressant steroids as well

I feel I must comment, my brother had ITP, at the time it was discovered that he had it, only one doctor knew what it was. As kids I remember him having (and please forgive my spelling) petikiai and get his platlette count done, often registering as zero.

In 2005 he had his spleen removed which seemed to stem the platlette issue, but he had to take penicillin for the rest of his life.

At the end of 2006 he developed an unknown blood disorder which sadly contributed to a blood clot which killed him on 2nd January 2007.

I remember so well all the time we spent in hospital with him, how when his count was low, that even a tiny cut could bleed for hours, and how sick he could get.

I'm so sorry for your loss. I lost my mother to cancer in Feb 2008 I haven't had any excessive bleeding, they monitor my platelets every day.

My wife has this too. It, her platelets, crashed on her during labor with our last child. That was a tense ending to the pregnancy. Everything worked out in the end, but she still gets random bruising 6 years later.

I've always been an easy bruiser but definitely the worse it's ever been. Thanks for your support, hope your wife and child are well.

Have they considered AHUS (I forget what the abbreviation is for but it sounds similar.)

I lost a friend last year from that. She was 27. It was devastating.

No, they haven't mentioned anything besides the ITP. Sorry for your loss.

I had this when I was 10. Sucks ass.

Sorry to hear that, hope you're doing well now

Yeah! I kicked it after a couple of days of IV immunoglobulin. I dunno if it'll be the same for you but I couldn't eat because I would just throw it up a few hours later. Stay strong though!

The immunogloublin is just making me really warm and drowsy, no signs of nausea yet. Side-effects are strange, thanks!

Stay hydrated, it will keep the side effects of ivig at bay. It can cause terrible migraines. It makes me really loopy and exhausted.

The I.I. drips are keeping me pretty hydrating and I got water and gatorade. I have to pee like every 2 hours lol

Are they letting you go the bathroom on your own? They wouldn't let me for fear I would fall and die of internal bleeding.

They are, I have my own bathroom. Nurses or assistants check in often also.

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I had mono about 3 years ago and they mentioned that it could be some weird fluke because of it. I am covered in bruises from an old I.V lines they had in me and from blood tests. They've been taking tests from my hand because I complained about my elbow being too bruised up lol

I was diagnosed with this when I was 11 - my platlets are still on the lower range, 80k to 100k usually. I'm 23 now, and still get them checked regularly. I went through a lot of different treatments, but I kept my spleen. I got better only after a really long time of being on a really high dose of steroids (yea chipmunk cheeks!), but doctors also figure I may have grown out of it.

Good luck! I hope you feel better soon.

Thanks! Hopefully I can kick this soon. I feel better since I've been admitted though. I think they're going to keep me on steroids after I'm discharged too. I have to take 10 tiny pills of them every day.

I have the same thing! I was around 27 at the time and I'm a guy, so from what I hear it's a bit rarer.

I did get though it, Mom had done some research and found a treatment called Sterinol. It's a herbal thing from africa I think that normalizes your auto immune response. My platelet count was 4 and it brought it back up to around 50 before they let me out. Website is www.moducare.com It really did work for me, and it's worth a shot.

They never could track mine cause down either, I think in the end they attributed it to a allergic reaction to a nasal spray I was taking for a sinus issue.

They may want to remove your spleen, don't let them. Try everything else first. Watch out for pregnizone, they may put you on that as well, it helps, but its a horrible drug. Makes you quite sick and gain a ton of weight.

You'll make it through, just be careful and do some research. I've been fine since, never had a relapse. Just can't donate blood any more. Which sucks but isn't that bad.

I'm rooting for you, good luck!

I've read it's more rare for men, I may read up on the Sterinol, though I usually avoid most medications even aspirin. I recently did a lot of traveling, had a bunch a stress from graduating university, got a tattoo about a month ago as well as experimenting with mushrooms, but they never said if any of that was conclusive to getting ITP. I hope to avoid surgery and I'm on a different steroid from prednisone. I can't recall what it is, but it's fairly low dose of around 40mg. Thanks for your support, glad to know you're doing well after dealing with this too!

I was diagnosed at 11 weeks pregnant with TTP (ITP's pissy cousin) and treated throughout the pregnancy for it (thankfully still in remission). Are they treating you with just steroids at this point? Originally they thought I had ITP and when steroids did nothing and they found fragmented blood cells then plasmapheresis was the way to go. Best of luck to you. ITP is very treatable.

They are treating me with steroids as well as IVIG.

I am 25 years old, diagnosed with ITP when I was 14. Found out about it through a routine blood test- Usually the physical signs are enough, but I was asymptomatic, meaning I showed no physical evidence of the disease. I stayed in the hospital for three days while they pricked and probed me continuously. All in all they extracted over 75 viles of blood trying to determine what it was I had. First I was told I had cancer. Once they ruled that possibility out, it was Lupus. They now know I have ITP, but they still don't know why my white blood cell levels were low. I was and am still classified as a medical enigma. On top of all this, my then-girlfriend came to visit me only to inform me that we were breaking up. Worst experience of my life.

Didn't mean to hijack your thread, just thought I would share my story with a fellow ITPer. Good luck with everything, man.

Thanks dude, they don't know why my counts are low either, hopefully the marrow test will rule out anyhing else.

How rare is this syndrome? How did they diagnose it?

It's considered not very common, but is also not terribly rare from my understanding. They diagnosed it based on my extremely low platelet count as well as the excessive bruising on my arms and legs. Platelets are responsible for your blood being able to clot. They explained that my immune system may be attacking my platelets due to a similar protein on a virus that may be present in my system.

edit: some further explanation

Fuck my S.O. had this when she was young. This shit fucked her up mentally. The docs said she could die even from a pin prick. Freaked her out. 20 years later she's still seeing therapists and taking anxiety meds even though she's fine now.

Wow that's terrible! I'm not terribly nervous about this, though it was a bit more severe than I was expecting. Hopefully therapy will be able to help your GF, I've had anxiety issues in the past and it definitely helped to be able to talk to someone unbiased.

So I was a juror for a case back in January where a mother had passed away from ITP. She was never diagnosed, as I had learn from experts, its only detectable when you first experience an attack. Before this case, i nevet heard of it, nor did i care too. But after a month of testimony, it really freaks me out!

Side story done: given this disease, do you plan on doing anything differently now knowing at any moment yout body can commiy suicide for you? Its supet scary to know this shit can creap up, but luckily with proper treatment, you will be fine.

That's awful to hear that. I think I was able to get treatment in time and am looking forward to moving on positively. I am generally one to roll with the punches, so I don't think I will dwell on my condition excessively. From what I've been told it's mostly a one-time thing and with proper follow up it should go into remission forever,

From what I've been told it's mostly a one-time thing and with proper follow up it should go into remission forever

Did a hematologist tell you this?

Yes a hematologist told me when I was admitted to the ICU and they were explaining what was going on.

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I was moving home from college when I noticed my arm hurt on the way home. There was a big purple bruise on my elbow, a bruise showed up swollen on the same arm later and was very sore for 3 days. Two more appeared on my other arm within the next day. Then various other bruises appeared within a week along with the tiny broken blood vessesl on my legs. I came to the emergency room at the suggestion of my sister's sister in law who is a nurse and told me my platelets were low since I had such extensive bruises. The doctors have me on steroids, though not prednizone. I'm currently getting a second I.V. of Immune Globuline which is a blood/immune system booster. They plan on giving me two transfusions of blood later and I was just told they're going to do a bone marrow biopsy.

Are the giving you WinRho?

They're giving me something similar, the brand name is GamaStan

I suffered from the same throughout my teenage years. After having multiple tests I was finally healed by having my eight pound spleen removed. It was also the size of a football. 16 years later I am still healthy. Good luck!

Wow! That's like giving birth to a baby. I don't think I have any spleen issues, they haven't been too concerned with mine yet.

I've had ITP since I was 4. You, and some people commenting on this thread are the only other people I've known to have it. I'm 19 now and still have it. Turns out mine is chronic. I've had a couple experimental drug treatments when I was 10 that werent helpful and now I just get regular blood tests and haven't had an attack like yours for a long. Although I do still bruise very easily, and tend to bleed for a long time. My question for you is: how long have you had it? What's your platelet count? Have you been hospitalized before for it? Thanks for doing this. You rock and I hope you get better.

I only started noticing the bruises a little over a week ago after moving out of my college apartment, they didn't get better and some more bruising progressed within the next week. My platelette count is around 17,000 today. I have only been hospitalized twice before, once when I was around 5 and I had an infected lymphnode removed in my neck and then about 3 summers ago when I had tonsillitis, mono and strep at once and had to have a abscess drained on my tonsil. Do your chronic ITP issues affect your daily life?

I had Guillain-Barre when I was 17, it's a similar autoimmune condition where the white blood cells attack your nerves and results in paralysis. If you're being treated with IgG, that's basically everything they can do for you for the time being. Your white blood cells need to be preoccupied by the pooled foreign matter so as not to kill your remaining platlets. It's more frustrating emotionally than anything, because almost everyone under the age of 75 fully recovers from global autoimmune conditions if they're identified early, but will likely require considerable physical therapy to reintroduce the connections at the neuromuscular junction. Most importantly, you probably need to avoid being vaccinated for a while (I'm 23 and have not had one since), because it can trigger a relapse. If you have any questions you think I might be able to answer, don't hesitate to ask. Get well soon

Thanks! I actually denied getting a flu and pneumonia shot. Does Guillian-Barre last for your lifetime?

Did you know the human head weighs eight pounds?

I did, there are also about 7 quarts of blood in the human body. Check out Marc Quinn, he's an artist that makes sculpture of his head out of his frozen blood!

Best wishes since I know it was difficult to diagnose. My daughter had this when she was 5 and it progressed from "bug bite" bruises to full on baseball sized purpura. 1 in 10,000 people get it and I hope it doesn't recur for you. Take it easy.

Mine suddenly started as bruises on my forearms and then progressed to my legs and feet. The petechia started forming after I got a hot shower one night. Give your daughter a hug for me!

Do you have any other autoimmune conditions?

Nope, I've been generally healthy for the past few years, My last major illness was mono, tonsillitis and strep throat all at once about 3 years ago. But this is the first time being hospitalized since I was 5 and had surgery.

You know that Idiopathic means Unknown Cause right?

I do, a doctor explained that to me. I'm not too worried.

I had this from 13-19. I was doing IVIG every other week but it wasn't keeping my counts up long enough, considering the cost. The headaches afterward are the worst. That and the TV options. Are you admitted to a hospital room or do they make you go down to the day room? I was outpatient so I always got stuck in the day/chemo room watching "price is right" with the old folks.

I've been in remission 10 years, ever since my splenectomy, which brought its own problems (namely infection).

How did you find out you had ITP?

I'm currently in a private hospital room and they've given me two doses of IVIG. I was mostly dealing with getting hot and some tightness in my chest as side effects. They diagnosed me when i came into the e.r Friday morning with the extensive bruising and tiredness as well as a very low platelet count.

Just sending you happy thoughts and well wishes !

Thanks!

I've got idiopathetic blood in my urine, freaks the heck out of doctors when I forget to mention it beforehand.

Creepy! You should start a metal band called Pissing Blood haha

If you have three severe symptoms (bruising, fatigue, petechiae), would it be appropriate to describe your condition as "Sick, sick sick?"

On another note, feel better!

Clever

I had TTP, so I feel ya. Best of luck, dont forget your folic acid!

Thanks!

I had this last summer (24 male) and was stuck in the hospital for a week, it really sucked, but it will get better, chin up!

Thank you! I'm mostly just bored and tired since there isn't much to do in here.

I ended up watching old movies but if you have a computer it definitely helps.

It does. I didn't expect to get much of a response from this AMA but it is keeping me busy and is reassuring that there are others who have gone through this as well.

As someone who survived this same condition, I feel your pain. They didn't know what caused mine either. Pumped me full of prednizone for months. Bone marrow biopsies. It was awful.

Have you tried loading up on calcium and vitamin C? I know this probably sounds like a really stupid question, but when I was going through it, this is the only thing I changed that actually fixed it, after a couple of months of my doctors just shrugging witlessly and talking about hospitalizing me (and not knowing what the hell they were going to do with me when they got me there).

I've been trying to load myself full of Vitamin C and iron, it's helped a little bit so far. I'm on a restricted diet currently so no fresh fruits or veggies right now. I'm supposed to be getting a bone marrow biopsy later today, so hopefully it will help them figure out what exactly is going on. My vitals are regular for the most part, just that my blood count is down.

A friend of mine got ITP from an infection she got while traveling in India. Any idea how is this condition going to affect your life after you get better?

Get well soon!

No Idea! I recently traveled to Toronto so I don't know if I picked something up there or what. I think I'm trying to stay pretty optimistic, I have a lot of support thankfully. I hope to just proceed with my life regularly. I'll be attending my first year of graduate school in the fall, so I hope it won't be too much of a hindrance.

Hey, I have this too. Currently I'm teetering between 35k-37k so I'm not "at risk" but I'm not particularly healthy either. Hope you get better, ITP is a bitch. Especially because it seems like you catch everything under the sun every few weeks.

I hoped there was something I could suggest as far as recovery but, well you know. Anyway, when in doubt ice cream always helps :) Get well!!

They're trying to pick my levels back up still. I haven't had much ice cream, just a lot of pudding lol. Thanks, hope you can recover too, this is defiantly the strangest illness I've had.

Do you think you will have to stay at the hospital for long?

I'm not sure, I've been in the hospital since Friday morning. They said I could be out by today, but it seems unlikely right now. I stayed in the ICU for a day because I was a bleed risk. My white blood cell count is also a bit low so contact is limited. I do have a private room with my own bathroom as a plus though. They are still keeping me under observation and I'm receiving 40 mg of steroids as well as medication to prevent gastrointestinal bleeds and an I.V. of Immune Globulin. The I.V. of immune globuline is to prevent infections and is also supposed to help treat ITP.

Tell them to give you rituximab if the therapy they're giving doesn't work.

I'll see what they have to say, they're still doing tests and keeping me for observation, thanks!

I'd just like to wish you good luck on your treatment. I'm 31 and had my spleen removed in 2011 as a result of this condition. I'm generally 100% now and I get to tell people the scar is from being gored by a wild boar.

Neat! I hope they don't remove my spleen, I'd be afraid of the surgery! The doctors told me it didn't feel inflamed and an x-ray came back regular.

Sorry you're going through this. I was originally diagnosed with ITP but since then have been diagnosed with a different platelet disorder.

I understand that it seems very scary to hear that you are sick but its important to know that ITP is annoying, not a death sentence. There are many, many treatments available and you will likely be living life as you were before this ordeal, in a matter of weeks. Check out www.pdsa.org, the platelet disorder support association for peer support and helpful information.

How low are your platelets? What are you being treated with?

solidarity, sister.

My count is currently at 17,000. They're treating me with IVIG, steroids and a med for preventing gastrointestinal bleeds. What disorder do you have now? Does it impact your daily life?

Hey, I had this a couple of years ago and now I can't give blood. My cousin also developed ITP a year or so after me.

Do you have a family history of autoimmune diseases like rheumatoid arthritis or lupus?

Nope, never had anything like it before. My mom had autoimmune problems, but those were complications from chemo. No rheumatoid arthritis or lupus either.

What's your platelet count today? As long as it's above 10 you're "out of the woods" for the most part. Glad you're handling this so well. -Vita, MD

My count was at 17,000 this morning. It dropped slightly since yesterday. A hematologist suggested giving me two infusions of blood later.

Don't have a question, just wanted to comment because my mom has this. She was in the hospital for a few months, but she's finally back to work, and doing great. Taking it easier than she usually does, but I think that's a good thing. Anyway, I wish you nothing but the best! If my little mom can get through it, you're gonna be fine!

Thanks! Best of luck to your mom as well!

I have had this on and off since I was 11. It's a lot better now, but sometimes comes back in patches, it has never been as bad as when I initially got it (my platelet count once was below 1, or barely 1).

Wow that is super low, mine was initially 4 and has gone up to 17 in 2 days.

Holy shit. I had this when I was a baby (~24 years ago) and this is the first time hearing about somebody else having it! I hope treatment all goes well and you do just fine!

Thank you! Apparently a lot of the time it is a one time thing, mostly common in young children and women.

I did IVIG for a couple of weeks when I was misdiagnosed with ITP. Best of luck to you!

Thank you!

Any chance you could provide more concrete proof that it's you in the photo and also the reason?

They haven't told me an exact reason for it happening. It could be due to a virus, but the doctors haven't exactly pin-pointed what's causing it. My platelet upon entering the E.R. was 4,000, the normal range is 130,000+ I don't have a pen or pencil for a written time stamp, but I can try to provide one with my webcam. Hopefully this works for some validity

What's your blood type?

I believe I am AB+

It's not really for me, it's up to the users to decide! Best of luck.

I wish you all the best with your health too.

Thanks!

My brother had ITP when he was a kid. They ended up having to remove his spleen. During that surgery they found out he had two spleens. Both were removed and he has been living a healthy life ever since. He's currently about to graduate from the university of Texas at Austin pharmacy school.

Best of luck to you and I would be happy to provide more information / help if needed / you'd like.

Two spleens? That's crazy! Glad to know everything is fine now, thank you!

Sorry to hear of your troubles. I would definitely avoid having any anal sex due to the risk of bleeding - you should speak with your doctor about when it would be ok to start having anal sex again.

Wishing you a speedy recovery!

Lol thanks, anal sex is not my cup of tea. Why play in the sewer when there is a playground an inch away.

Just reading this after a search for "platelets" because mine were below standard range after a test last week. I'm going back in for a re-draw today and want to wish you a speedy recovery.

Thank you and good luck!

I was in the hospital last April for ITP. My count was 2,000. It's a very common thing. Talk to them about an IVIG drip. It boosts your platelets back up. It's a really easy thing to deal with

Currently on an IVIG drip. :)

Hey, stay strong and get well soon!
I had the thing when I was about two years old.

Thanks!

I had ITP when I was 6 or 7. I am 25 now. I was in the hospital for a couple weeks and all i remember is watching mighty ducks, getting lots and lots of blood tests, and sherbet mixed with meds. Weird to think back on now a days, because I had no idea why I was there at the time and I still know very little about the severity whole experience. Though now i'm interested about it... time to call mother.

I've been watching a lot of cartoons and food network, though that isn't out of the ordinary for me really. I've had blood drawn every day, they took about 20 tubes worth my first day in. I didn't think my case was severe either, just trying to stay optimistic. Hope your mom can fill you on some good news!

I had this as an infant, and my mom tells me it was pretty annoying because she'd have to take me to the hospital any time she saw a bruise, which was a lot because I was kind of a rowdy kid.

Anyway, I don't really have a question, but thank you for doing this AMA!

Thanks for your support, it means a bunch to know that there's a fairly substantial response pool on ITP since I had never heard of it before.

I wish you well and looked at ur pic first to see how u r doing

I used to do medicine but retired. .

I ask some family members and friends who still practice if they see this because this disease fascinates me . . mainly because it teaches an enormous amount about the immune and blood clotting system

Take care and I hope you get to do something non-boring sometime soon

Thank you, this ama is taking up some of the boredom haha. I've been getting frequent family visitors and texts or calls from friends as well.

hey i just wanna say good luck!! my mum had this but through therapy she get better, and i believe you can go thru this. i had spent my childhood in hospital to accompanied my mum. hospital can be fun, dont worry. stay strong!! wish you lot of luck!

Thank you! I'm glad I have my laptop haha

Hospitalized with this for a week or so when I was four, I'm 23 now. Don't remember a whole lot. I know I was admitted with bruising on my arms and legs and internal bleeding. Feel better!

Thanks! Luckily no internal bleeding for me.

Anyone who read this thread title and didn't try to pronounce Idiopathic thrombocytopenic purpura out loud is uncool.

Good luck with a speedy recovery, /u/GoIntoTheHollow!

Thank you!

Hey there. Good to meet a fellow ITP person. Are you on prednisone therapy? What was your platelet count when you entered the hospital?

No prednizone therapy, they have me on a different steroid I can't quite remember the name of. My count was 4,000 upon entering the hospital.

good luck to you, my sons dad ended up with this about 3 years ago......they still have no idea why his body attacked his platelets.....he has recovered well, he still has to be careful, but he seems stronger now

Thank you for your concern.

I'm no doctor but it sounds scary. I hope you get better soon

Thank you! It's not terribly scary, only the bone marrow biopsy was.

From me, for you GoIntoTheHollow.

Aww how sweet, thank you!

Hey just wanted to say that my gf had the same sickness and she was never told a reason why this happened. First they tried to cure it with cortisone but later had to remove her spleen(?) because it was killing the platelts. Don't know the translation for the organ. This was in 2006, she is now 26 years and still doing very fine without any downfalls or extra medication. Hope you will feel better soon enough. If you have any questions feel free to ask if I may answer them I will.

/e Question. What exact treaments do they propose? Where are you from?

From what I read/ understand the removal of the spleen is almost a last resort since that's where a lot of platelets are destroyed. I was told mine seemed okay, though they mentioned a possible bone biopsy if a current transfusion of immune globulin didn't work. I feel a bit better than I have, just some minor drowsiness from meds and mild side-effects. Thanks for your support, wish you and your GF the best!

Yes that is what they also told us back then. So I do hope the meds just kick in and do thier job. But just be relaxed if it comes to the removal you can perfectly life with out the spleen. She has had some more flues since then and had to take anitbiotics but that was about everything. She also was down to 4k platelets so I may understand that you may have been in severe danger of bleeding. Well again stay safe and maybe update here if you feel better. Hope you get fine, just keep your head up :) thanks!

Thanks! I don't think they'll remove my spleen since they only mentioned it as a last resort. Unfortunately I'm allergic to some main antibiotics like amoxicillin and bactrim. I was at risk for bleeding, they gave me a transfusion of platelets in the e.r. and then moved me to the ICU for a day. Currently still low at 17,000 but not as risky as before.

Are you terrified you're going to be in debt for the rest of your life from the hospital bills?

No I don't think so, I talked to a case worker earlier today about being able to get support for medical assistance. It does suck that medical bills can be so expensive. I'm mostly just focused on recovering currently.