I'm sitting here in my hospital bed researching ITP. I had been getting bruising on my arms for about two weeks, and when I finally saw I had a swollen bruised foot (from hitting my foot on something), I decided to go in yesterday to see my doctor. Doctor gets some routine labs. 5pm comes, and an advice nurse calls me and tells me they want me in the ER. My doctor calls a little while after and tells me my evening visit to the hospital would be a few days long. My count was 8,000. No other symptoms besides the bruising and the little red dots on my legs that I hadn't noticed. This morning I was at 10,000, and a couple hours later they put me on prednisone.
I guess what I'm asking is, what can I expect from here? How will my life change? is this curable? Doctor here says often steroids can cure you completely, but reading many of these posts, it seems it's not entirely true.
Funny thing is, I'm O- and used to donate platelets.
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Visua1ingo
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It sounds like you are going through the same initial stages that we have all been through and asking the same questions as well.
Unfortunately you will find from the comments on this website is that ITP does not affect us all to the same degree - we all have experienced low platelet counts but the level can vary as well as the severity of the symptoms. Some of us can be below 10 for a long time (even reaching 0) and have blood blisters in the mouth, nose bleeds, petechiae and significant bruising whilst others can stay above 20 and have no symptoms.
Some of us react to the initial treatments (ie Prednisone, IVIG) while others do not and move on to the second phase treatments (Rituximab, Cyclosporine, Dexamethasone, Dapsone, NPlate, etc) where they hopefully will have success.
Some of us can thankfully achieve remission while others will continue the battle for a long period of time.
One thing though is that it will usually take a period of time to work this out and your life will change initially until this happens with the many blood tests, consultations and medications interfering with your normal routine.
The best thing to do is to be patient, calm and seek advice from the experiences of others on this website as you progress through this illness.
My ITP experience involved all of the issues and treatments I have mentioned and I was lucky to only have it for 9 months until I went into remission where I have now been for 12 months. Unfortunately no one can guarantee that you are cured as it has a habit of returning even after a considerable period of remission but you never know.
So please keep us informed on your progress and hopefully we will be able to provide some comfort and answers as you begin your ITP journey.
Well said! I have had this since I was a child. Went into remission in my mid 20's for about 10 yrs and it came back and I was admitted with a count of 2 end of August. Now I battle with my counts being up from my infusions and then dropping into the teens again.
Thanks for the reply, Robert. This was really helpful to read. Amazing what everyone has gone through on their journeys. So glad we had this forum for support, even if some of it can be quite sobering at times.
Hi, I agree with Robert. You will have a roller coaster journey ahead of you. You have to try different things to see what works for you. My lowest blood count was 0. I had 7 different treatments over a number of years before finding one that worked for me. For 18 months i attended hospital 3 - 4 times a week and went to A&E 6 times as an emergency. These were difficult times for me because i still had to run my own business. You will find that the people on this forum will work with you on your journey. It was a life saver to me, to talk to others that had been through the same. One week on the Monday my count was 2 on the Friday it was 965, for no apparent reason. I wish you well and if i can help in any way I will. Take care. NickyD
Afaik, there is no 'cure' for this. There is medication to raise your count, and as Robert says there is remission, but as this is an auto immune problem, it can always come back.
For me it was triggered by pregnancy. I've had ITP for 20 years, and don't have medication, as I am asymptomatic. I bruise sometimes, get the red pin prick dots, and get very tired, but have learned to live with it; you have to.
I have blood tests maybe 4 times a year, just to keep an eye on what my count is doing, and I take advantage of my 'good' days, and don't beat myself up if I don't achieve much on a not so good day.
Good luck with this. There's lots of support here for you. Don't be bounced into anything by the medics; ask lots of questions.
Hi,do you ever been have nose bleeding?my daughter 8 years old diagnose itp 3months ago with severe bleeding with platelet 28k.and the haematology said no need treatment.but im so scary because my girl usually had nose bleeding once a week.so now her platelet 47k without any medication.what should i do if she has severe bleeding ,the other haematolog told me to give prednisolone.which one should i do.give her prednisolon or not?
I don't get nose bleeds, but my son, who doesn't have ITP does, and it used to be weekly. It may not be ITP related, but due to weak blood vessels in the nose. My lad had to have his nostrils cauterised, and as he has got older the bleeds seem to have reduced.
Hi Scaryteacher, lovely response, sounds a little similar to my story. Really support your comment about being 'bounced into anything', I might adopt that if I may.
Crack on. I refuse to be bounced into anything by children who look amazed that I still have periods, playing at being doctors. I am currently in Belgium where a patient having some knowledge isn't considered a good thing.
I'm not sure they like it that much over here in the UK TBH. I'm pretty much in control of my own health and have had difficult GPs in the past. About to change as moving and will be making it very clear that I have knowledge and wish to be equal in any medical decisions. The fact that several GPs have misdiagnosed a problem for the last 7 years putting it down to a complication from ITP (when it wasn't) makes me question everything these days! Best of luck!
I was back in the UK for a while, and the GP referred me to the hospital to be on the safe side. Went for an appointment, no bloods taken and waited about to be asked by a sneery registrar why I thought I had ITP. I asked who was Head of Haematology, got the answer I was expecting, and told the registrar to go and ask the Professor of Haematology why he had diagnosed me with ITP in 1995. There was silence....
Oh no...that's not good. Talk about lack of respect for the patient! I must admit, I don't ever get seen by the juniors down here, always the consultants...I think they know it's not worth the arguments! I even have the private emails of both the consultants and just email them out of hours if necessary. I'm very lucky. I'll be changing hospital when I move, so I hope it will be similar. I will have to work at it!
Hi Visualingo. You have had good advice from the others, all of whom are regular contributors. The only advice I would add is do not be rushed into a splenectomy. This is an old fashioned treatment which does not always work as NickyD will tell you. There are other reasons for ITP. Also, with a low platelet count, you can live a near normal life. I have had a steady count around 10 for many years, take no medication, live a normal life and only have check ups on a yearly basis. I am lucky though that I am not a bleeder. Only take medication when in need of surgery.
Also look at the ITP web site( linked above) and join the support group. Good luck and don't worry, you have joined an elite club as ITP is classed as a rare disease!!!!
ITP is an up and down thing! You may be lucky and it goes or like many of us you may have to live with it. I've only had treatment a few times with steroids and just carry on as normal. I have got used to the bad bruises and the pin prick ones and don't worry too much.
I hope very much you don't need too much treatment but there are lots of people on here who can offer advice and support. Many far worse than me!
It is scary at first but gets easier to manage as time goes on - take care.
Sorry to hear your in the hospital well your Doc is right your gonna stay in the hospital for a couple of days you can live with ITP and I was told there is no cure from my hemotologist. If that was the case then none of our post would be up for others to see. My last hospital stay was four days. It depends who your hemotologist is gonna be and how routinely he or she is gonna want you to do labs. I go every month now before i was going every year before i saw my hemotologist. I was good for about two years till this year in Sept where my platelets dropped to 11,000. Had to go to the emergency room. Every body is different and at first I was in and out of the hospital all the time. We just have to be careful and not use sharp objects when platelets are that low. But I was getting the bruising people thought in was getting abused I'm like no. So thats when I knew my platlets are low and the red dots are called petechai I get that, an that's another sign of low platlets at the hospital I get IVIG that seems to make my platlets go sky rocket high. But you just gonna have to wait and see what your Doc is gonna give you. Keep Me updated if you Dont mind. You can live with it. But also I use to miss a lot of work.
Thanks everyone for the replies. I was released today. I hit 24,000 yesterday morning, and 66,000 this morning on prednisone, so since I was over 50,000, they let me go. I need to set up some appointments this week with a hematologist, to see when they want to start tapering me off the steroids and setting up more blood work, but as of right now, that's where I'm at.
I'm a little tired, but I didn't sleep all that much in the hospital, so it's hard to know what it's truly from. I guess I have noticed a few things in retrospect, like my energy being a little lower, earlier last week some blood in my nose that was a little abnormal. Friend of mine says he noticed bruising on my arms at our last tailgate, and that was about 3 weeks ago.
Feels like I'm both optimistic and scared at the same time. Everything I read, especially knowing I was under 10,000, is just so scary to read. Some sites saying under 50,000 they recommend helmets, under 10,000 internal bleeding from no real injury, etc.
Thanks so much to everyone for responding so quickly. Even though I hadn't responded yet (HealthUnlocked's website doesn't work well on an iPhone), reading all of your responses helped me tremendously, even if reading alone in a hospital bed at 5am sometimes left me a little teary.
That's good news to hear that you have responded to the Prednisone but just to let you know that it is very common for your counts to drop when you are tapering down.
This is exactly what happened to me - I went in a 9,000 and was given 100mg of Prednisone, 2 days later I was at 25,000, the next day 60,000 and I was released from hospital. I then began my taper and the next week on 75mg I was at 160,000 but the week after that on 50mg I dropped back down to 13,000 before working my way down to 0. I was given all the other treatments until they eventually found one that worked (NPlate).
I am not telling you this to create any fear but just to say that it is not the end of the world if it happens. I really hope that you do maintain your count but if it doesn't then keep us informed on your progress and we will be able to guide you through what to expect with the various treatments.
I definitely know my journey isn't over yet. Hoping for the best right now, and trying not to get myself or my family too worried. But sometimes Googling can be as helpful as it is scary. One day at a time. Thanks for sharing. I'll definitely stick around here for awhile.
There is also a group on Facebook and some good information. Looks like similar sites in other languages also. The group is Idiopathic Thrombocytopenia Purpura.
And I agree with what was said here. Learn to know your own body. I can tell when I am lower vs higher. Higher feels....weird. LOL Take comfort in knowing that you can live with it. If you are careful it shouldn't kill you. I suspect each of us have a level in which would be dangerous for each of us ...individually. I was at zero for 4 days last month. I waited for a doctors appointment instead of just going in. In retrospect that was ridiculous and highly dangerous (my entire body looked like a hicky...my mouth and throat were black, etc). But I know I am regularly pretty low but only for about 24-48 hours before I go back up. We are still figuring out my normal.
On Friday, October 9, I was put on 200mg of Prednisone a day (100mg, twice daily). I was monitored through the weekend, and on Sunday, I was at 66, which was good enough to be discharged. I had my first appointment with a hematologist on Tuesday. He took me down to 100mg once daily, and told me to come back in for a blood test on Sunday.
He called me this morning and let me know my platelets were at 95 today. Not as high as he had hoped; he was hoping I'd be at the normal levels by now. So we're not tapering me off prednisone just yet. One more week of 100mg a day, and I'll get tested again on Sunday.
I'm a little discouraged. I guess (like everyone) I was hoping this was some weird fluke and that I'd be quickly on the road to recovery and remission. But all the research I've done has shown me this could be quite a journey. I just need to make sure I'm better prepared mentally when results come (or don't).
That is good to hear that you have responded to Prednisone and 95 is a good count so I imagine that you wouldn’t be experiencing any bruising, bleeding or petechiae. From my understanding 200mg of Prednisone is a very high dose and that is a big drop back down to 100mg in a single step – the highest dose I was on was 100mg (I weigh 90kg) and that had a strange effect so I don’t know what 200mg would feel like. I once stopped the Prednisone and did a Dexamethasone pulse which they say that it is 4 times the strength of Prednisone but it was only for 4 days and I don’t remember feeling any more elevated than when I was on Prednisone.
Looking back at your initial post it has now been 10 days since you were diagnosed and I was at 160 at about the same time and on 75mg Prednisone so I will be keen to see what your next results are on Sunday as it was after that that things went pear-shaped for me.
As has been previously said, we have all been through this early phase and so there will be plenty of support and advice to hopefully prepare you mentally for whatever the next step is so just keep us informed and stay calm. When I was first diagnosed my specialist said at the outset that it would take 12 months to sort out and in the end she was correct. My biggest regret was that when I was sick I did not know of either this website or the PDSA website which would have been a great comfort rather than just working through the symptoms and treatments alone as I did.
I was put on 200 mg based on what the floor doctor and a hematologist had worked out between them during my stay. A different hematologist I saw on Tuesday initially said that was way too much, and that he always starts people on 100 mg. But after thinking about it for awhile, he did the steroid conversion between Dexamethasone and Prednisone, and found out that the amount of steroids I was taking was actually pretty aligned with the Dexamethasone treatment. So instead of the 4 days and sudden stop, which he said sometimes causes a quick relapse, he decided we'd drop down to 100, and taper from there. He said many hematologists are going this route right now, tapering off the Dexamethasone. He wasn't worried about dropping from 200 mg to 100 mg, and my general doctor also told me that there isn't a big difference between the two, since your body will only absorb as much as it can anyway.
I haven't had any strange reactions to it, yet. My mouth tastes funny (water isn't very good), and I constantly find myself biting at the inside of my cheek. I'm a bigger guy (99kg/220 lbs.), so maybe that's why? I've actually lost some weight, since another one of my issues was hypertension, and cut back on salt/fat/fast food this past week.
Thanks again for your words and support. This website and its members have been really helpful and supportive so far.
I feel your pain! I was diagnosed with ITP about 3 weeks ago whilst on holiday in Turkey. I could have done with Google whilst out there, but I didn't want to pay the phone bill when I got home! From what I have worked out so far, ITP isn't really a condition that you are diagnosed and stuck with for the rest of your life. My GP explained it as a 'blanket term' for a low platelet count. There are lots of things that can cause a low platelet count, some causes we will never know.
I am currently on 100mg Prednisolone daily, and i have been signed off of work until the end of November. I'm not having the best time on the steroids. I could go down the list of side effects and struggle to find on I haven't had, but that varies among people. After discussing the side effects with the doctor, we decided that the medication is working, so its not worth playing around with. I was basically told to man up and count down the days until Christmas!
I am probably not the most knowledgeable, but I wanted to post a little something to let you know that you aren't alone, and we are all here to help. I wish you all the best in your recovery, and I hope it is a speedy one!
I'm sorry that you're having such a rough time on the prednisone. I almost feel guilty that I haven't really had any yet, other than minor "cosmetic" side effects like acne, sweating, dry mouth and my face getting fuller. It's one reason why he's okay tapering me off a little more slowly, since my side effects haven't been bad at all. I just dropped from 100 to 90mg, but that change is so small that I don't think I'll notice much in terms of the tapering off side effects people talk about.
Davis3924 You need to be seen by a hematologist, not a GP, there many causes for low platelets. as a female I do not understand the male concept of "man up" and is not something a "real doctor" should say to a patient. what part of the country are you in? kyriak51
Hi its kyriak51 again, Rituximab has only a 50% response rate that requires weekly IV infusion for 4 weeks, do you have a correct diagnosis? A count of 30K Is not aacceptable, in my case at that level I have increased bruising, fatigue, irritability, pain and depression. where are you receiving treatment? Have a good day.
This last Sunday's blood test kinda sucked for me. I came in at 44k, a 51k drop since last Sunday. No change in Prednisone. So I won't be tapering off starting today like he had hoped. The doctor wants me to stay on 100mg until next Monday when I have another test. If I'm >30k, he'll start tapering me and see if we can keep me above 30k, at which point I may just have to learn to live with that count. If it's <30k, he's going to bump me back up to 200mg for 4 days, and start the taper again. If that doesn't work, I assume Rituximab is his next treatment.
I'm a little worried about what happens if I'm just above 30k next week, and he drops me to 80mg. I know a lot of people on this board as well as other places have spoken about big drops when they've made adjustments in their mg. Worried that my 30k will quickly fall below 10k, and I'll be in the hospital again. I'll just need to keep an eye on my bruising and petechiae.
It's frustrating to say the least. I've been trying to remind myself of what Robert said, about how his doctor said these things usually take about a year to figure themselves out. I guess sometimes we just feel invincible to life's problems, and assume things like these are just quirks and "bugs", and will turn themselves around fast. It's hard knowing you have no real symptoms. I felt like the healthiest non-healthy guy in the hospital.
Hi, I have had my ITP for about 8 months and still feel like you do in your last paragraph, so prepare for a frustrating time ahead!
I had almost no response to prednisolone 100mg, however I am now down to 2.5mg combined with Revolade (Electrombopag) initially when taking the Revolade my counts were high, but as we dropped the prednisolone the counts drop, so there is a fine balance between controlling the immune system and the amount of platelets you produce, (Revolade stimulates your bone marrow to produce more platelets, so it's looking at the problem from the other end).
Right now they have increased my Revolade and dropped my prednisolone to every other day.
That's working so far!
If you drop off badly right now they might give you an IVIG.
It's good you respond to Prednisolone because it shows your body is making platelets ok!
So hopefully they don't need to do a bone marrow biopsy.
So don't despair there are many varied solutions, it just takes time and a lot of blood tests to get to the finish line.
This Monday I came in at 56k, 12k higher than last week. Doc wants to start a slow taper, so I started taking 90mg instead of 100mg of prednisone. We'll see again next week!
89k this week (Sunday)! Doctor dropped me from 90mg to 70mg, and I'll be rechecked on Monday. I was also tested for H Pylori, given I've seen some links online and some questions about it here in this forum, and my wife has just finished treatment for her own active infection. My count was within the standard range, so I'm good there. Hopefully I can keep the platelets up, I know getting to 60-70mg for some was when their counts started to drop.
2 months later, I'm now down to 2.5mg of prednisone, and my platelets are up to 208. Hopefully this is the end of this journey for me, but I know it may not be. Keeping my fingers crossed!
Hi visual Are you being by a hematologist or gp? Prednisone is generally the first treatment choice, the most important thing is a correct diagnosis. Do you have antibodies to platelets? if so platelet transfusions will not help as your immune system will quickly destroy the platelets. My ITP is not immune mediated, the "I" in ITP stands for idiopathic meaninga condition that arises spontaneously or for which the cause is unknown. I started with dexamethasone, IVIG and Rituxan none of witch were able to keep my counts above 10K, than I started on Nplate and responded immediately. I am courently on 650mcg per week to maintain my counts at 50K to 80K which is ok as long as I do not injure myself enough to cause bleeding or require surgery as I will continue to bleed for three days. If I have to have a tooth extraction, I have the dentist order "Hemodent" which stops the bleeding within a half hour. Should I require surgery I must have HLA matched platelets. I have been on Nplate since 2010, I consider my ITP to be a cronic disease like diabetes that can be manged. As long as I don't decide to take up skydiving, I'll be fine. Feel free to contact me at yoyo0106@sbcglobal.net if you have any ????? Have a good . kyriak51
Hi visualingo, I forgot to mention that platelts are not blood type depended. We refer a unit of platelets as a 6 pack as there my be as many as 6 doners of different types. When I had a bleeding incident and my Oncoligist has unavailable I presented to the ER and demanded a couple of 6 packs of platelts. I started ar count of 22k increased to post transfusion count 26K, than to 28K after the 2nd and 30K after 3th 6 pack, at which point I had syoped bleeding. Three days later my count was back down to 26K ay which point I had my weekly Nplate injection PS: a count of 10K is the recommended level for transfusion as there is no significant increase in the rate of bleeding between 10K and 20K. Thank you for donating platelets I'm sure you helped many oncology patients. Have a great day.
So glad you found our on-line community. Robert1959's response is spot on. (Well done Robert) Thanks for mentioning your blood type. I firmly believe O- blood is, at least, a precursor to ITP. I have only seen this anecdotally (with one discussion by a medical sufferer) and never in any medical abstracts. Who among us has O- blood?
I do, have you had your spleen removed? They want to remove my spleen. Currently having platelets checked weekly and when they get too low getting injection of endplate.
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still a bit new to this!
Any good consultants/haematologist in London? Please help :)
ITP in children and behavior
