TOPIC:

So still learning about what this thing I now have is and how it will limit me. From my experience the past 2 weeks, having twice been admitted to hospital for multiple days because of a platelet level of 3, I have been led to believe that anything 10 or under requires me to be in the hospital. I wasnt released until I was over 10. The last test was 12 two days ago. Next test tomorrow and my first real appointment with my hematologist. If I am under 10 again and have to go back into hospital...well pretty much devastating because its happening all over again. And all of this just appearing out of nowhere 3 weeks ago.

Is there a range that is generally accepted as being safe to go back to normal, as much as possible, such as work? 20? 30? If Im still at 12 or under 20 tomorrow will it be safe to go back to normal? What if I suddenly drop again to sub 10 as I have the past 2 weeks. Even with treatments. Even while at levels 2 and 3 the only real bleeding that I was aware of was mild bleeding along the gum line because I could taste blood. That has gone. The bruising of course is still there and slowly healing I think. The fatigue I am feeling is really bad now. I have moments in each day where I feel refreshed with new found energy and Im like great..im on my way...then only a few hours later, like now, I feel my body crash and Im thinking I hope this isnt a sign that platelets are falling again.

Its all so very strange. Just trying to have some idea what I can hope to plan for. I would take a 40 or 50 level in a second. Even if low I guess that would be okay to go about things normally and give me and my DR's time and opportunity to attempt to address the situation without being in a rush back in an ER and hospital bed.

It is frightening to start with. I was way out of my comfort zone when I was diagnosed with a count of 12. My GP sent me to the haematology ward at the local city hospital. I was given steroids and with count still on 12 sent home the next morning.

After I gave up on Romiplostim and before starting Eltrombopag I spent 6 months tapering prednisone as the side effects were so awful. I had counts between 2 and 27 but never missed out on work or any other part of my life.

Before I flew from the UK to Australia for a holiday a couple of years ago I asked my haemo what she considered a safe count to fly. Her response anything above 0. It was 70 when I left and after 2 weeks of living the high life consuming far too much alcohol it was 21. I came home covered in bruises but had a ball. ITP did not stop me having a great time.

Unless you have major bleeding I can see no reason why you cannot get on with a normal life. I am permanently covered in bruises, experience fatigue and feeling cold with a count below 20 and oral blood blisters if in single figures but I just get on with life. ITP does not rule me. I rule it.

I've had ITP for 21 years, have had counts under 10 multiple times, and have never once been hospitalized for it. I guess it depends on your doctor's panic level or what the hospital does for you that makes a difference.
My hema has an infusion center within his office. Twice, I received an IV steroid there for counts of 2 or 3. Most other times when I've had very low counts, I merely increased the oral steroid I was taking at the time. I've never had IVIG, but I assume I could also get that at my MD's office, not sure though.
I personally don't believe it's necessary to be hospitalized based on count alone. Ovbiously though, if there's active internal bleeding, that's the only place to be.

Just got back from my latest test and first actual appointment with my hematologist. I am holding at 12 after 4 days instead of plummeting back into single digits. I guess its because of the first round of Rituximab. Dr is dropping my Prednisol dosage from 40 a day down to 20 a day so thats good I guess. He stated that the decision to go with Rituximab so soon after having been diagnosed was due to the fact that my levels were not responsive to Prednisol or IVIG. He said that under 10 and I would be back in hospital. 10-20 I can monitor at home and go to ER if any bleeding noticed. Looking to get to level 50. So this is all new as far as what is possible with low counts. I will be gong into my hematologists office this wed for Rituximab infusion number 2 with the final 2 infusions over the following 2 weeks. Also I am receiving Nplate injections. Forgot to mention that I had one a week ago with the first Rituximab infusion. These replies are heartening . All I want is some energy and not having the fear of being sent back to the ER after having had to do so twice this past month. It really really boring lol. Im just going to assume that my levels will continue to rise over the next few weeks and back to normal SO sounds like I can function perfectly well and go back to work with levels as low as 30...thats what I will plan for

Double digits are good! And don’t forget was mrsb said about rituximab taking a bit to kick in.

I’m glad you were able to meet with your hematologist and get some answers. It does seem odd you are taking rituximab and nplate at the same time. How are you doing with the nplate? How often are you receiving it?

It seems unlikely, since your hemo doesn’t think you responded to IVIg, but if you ever receive it again, tell them to slow down the infusion. That will reduce the side effects.

Mrsb and Midwest are definitely rockstars. I have been hospitalized multiple times and even had a brain MRI due to 0 or near 0 counts and lots of bleeding.

I think being cautious in the beginning is smart. You and your doctor don’t yet know the severity of your symptoms, or how ITP affects you. You also are at the beginning of exploring medications and don’t know how you will respond to them. So, if going to the ER feels better to you, then go. If they want to give you platelet infusions you can decline. Tell them they do not help you because your body will simply destroy them.

It seems the fatigue is the worst symptom for you, but pay attention to bleeding and bruising. If you have gastrointestinal or other internal bleeding you need medical care. Pay attention when you go to the bathroom.

Also, you can ask your hemo if they will prescribe you tranexamic acid. It will reduce bleeding. For a while it was my favorite drug.

Oh, to answer your question about counts... 30 is a good goal. Over 50 is great. But pay attention to how you feel at different counts. For me, over 60 is best. See where the fatigue starts to kick in or disappear for you and then let your hemo know.

first of all thank you to everyone for answering questions and concerns that those of you who have been here for awhile are always having to answer for newbies.

To me, having never had to go to the ER for anything or spending a single night let alone 10 nights in an ICU over a 3 week period being told that my levels are critical and also having a CAT scan and now watching closely and afraid to look whenever I go to the bathroom, lol, this has all been a bit of a shock to me. Still trying to determine if it is something serious with levels as low as they were or only mildly serious with no need to worry.

I received IVIG, 2 rounds, the first stay in hospital(6 days/night). Took my levels from 3 all the way up to 46 and then 3 days later back down to 2. I understand that IVIG is only a temporary thing to get levels out of the concern zone. My Hema today, who was out of town my second time in the hospital(4 days/nights) when they gave me 3 platelet transfusions said that he would not have done that without the IVIG first otherwise the platelets would be destroyed as soon as they entered my body which is what happened. It was the ER that began the platelet transfusions so maybe they werent sure what to do first?

Fortunately, except for mild bleeding in my mouth that I could taste and a slight smell of blood I did not have any other bleeding experiences even at 2 or 3. Im guessing I was that low for days before i even went to hospital since the bruising had become noticeable about 2 weeks before i even went for that first blood test. Maybe that means I am immune from the severe bleeding that might possibly be dangerous?

Ive had fatigue for many years but never at this level. It seems to cycle throughout the day. One hour feeling better and a couple hours later more so than ever before. In fact it was so bad last night I was sure that I was back down to a level of 2 or so and I even took my overnight bag with me to the appointment today fully expecting another stay in hospital, which is conveniently located on the same campus as my Hematologists office.

I received the Nplate injection, which I wasnt even aware of at the hospital because I was so out of it, last wed with my first Rituximab infusion and will be getting Nplate shots the same day as each of the next 3 retuximab treatments. Thankfully looks like the prednisone will be tapered off and not used in the future. was only on for about a week and a half and already the weight gain is not helpful to my state of mind but in the end I dont think i care about that kind of thing anymore. Just want some energy back lol

Happy to help

Why did you have a CAT scan? Being given platelet infusions in a hospital is typical. ERs and hospitals usually don't know much about ITP, so you may have to educate them a bit.

Hope you feel better soon ~

I really dont know because I was kind of out it when they did the scan around 3 am after waiting in ER for hours before they took me back. I was feeling a bit lightheaded and mentioned it so Im guessing that? I really dont know

I had never heard of ITP until 2 hours before going to the emergency room when my Dr Office called me and told me to go to the ER immediately because of my platelet level from the blood test earlier that day. I didnt really know enough to educate anyone..I felt worse than I had ever felt before, like I was about to die, and I didnt know what was up..just figured based on the bruising that appeared out of nowhere a few days prior, the fact that I physically felt like something was really wrong and that I was told to go immediately to the ER that I was done for lol

I can't understand why you were not referred to a haematologist immediately by your PCP instead of the ER

Im not really sure how it works. As someone who has never really been sick and who rarely misses work because of being sick being told with that phone call while at work that I need to get to the ER immediately really messed with my mind. I dont even have a primary DR because I have never really needed one. I guess since having reached my 50's and considering my past lifestyle and diet taking my health for granted is not longer something I can do.

There were multiple hematologists who were in and out of my hospital room that first stay. I was asked if I had a preference for anyone in particular and I choose the DR I felt most at ease with and had the best rapport with. Also I did a look up on my iphone from my hospital bed and all the patient reviews and opinions of him were A +. Having zero experience with dealing with this sort of thing or choosing a DR or a Specialist Im kind of flying in the blind.

As far as both ER admissions and hospital stays go, the impression I was getting from everyone was that my condition was critical and I needed to be there for observation and to get my platelet levels up out of single digits before we could work on figuring out what steps to take next in order to deal with the condition itself. Im the kind of person who always works when sick...long physically active 12 hour days as a rural mail carrier delivering everyones mail and Amazon. I had my second Rituximab and Nplate treatment today and in speaking with the Dr office attempting to get my work sick leave paperwork done, in projecting when I might be able to return to work they were saying it may be a month or more or so depending on where my levels are at before they would sign the paperwork releasing me.

very confusing and frankly depressing

Back in the spring of 1989 I was called about 9pm and told to get to the ED because my platelets were at 11k and dropping - #2 son was asleep & #1 son was at the movies, hubby in a different suburb with his new boss at a meeting. That took some doing - thankfully #1 son was located by the theater manager and got home, I drove myself to the ED because I had to leave a message for my husband (this is before cell phones). However I have never ever considered myself "sick" due to ITP - I consider it a blood disorder that I have to deal with.

I don't think all hospital doctors/nurses don't know what ITP is - Jan 16, 2018 I had a nasty fall which broke my shoulder and opened up the right side of my scalp requiring staples to close, ambulance took me to the ED and the doctor called for a head CT to look for a brain bleed due to my ITP - thankfully no bleed! You are not alone - none of us dealt with this before or probably ever heard of ITP before. Maybe
there is no reason you won't be able to go back to your job - we moved overseas shortly after my diagnosis and I was on 60mg of prednisone. Take care now & good luck!

mrsb - most likely she was sent to the ED instead of a hematologist is it sounds like the doctors offices were closed - that's what happened to me, I went to my doctor looking like I'd been beaten in a back alley & by the time the CBC results were back and he saw my count at 11k it was night time so he called and said to get to the ED. While there a couple days my doctor called in a wonderful hematologist and I was her patient for a number of years until we had to change medical plans.

It appears you have a different system to where I live then. When my surgery is closed results are referred to NHS 111 who contact the appropriate speciality then the patient with instructions which ward to go to.

I really dont know what to think. All I know is that a month ago the bruises began to appear all over my body. I began experiencing extreme fatigue, and weakness and had a general sense that something was very wrong based on how my bodyfelt apart from the bruising. I went to the Dr got a blood test and then was called later that afternoon alerting me that my platelets were at 2 when they should be over 140 and that I need to go to the ER immediately. The DR was located at an office that was managed by the hospital I was told to go to so she called ahead to alert Riverside General that I was on my way. I went to the ER, they were expecting me, asked lots of questions, wheeled me up to the cancer ward and into a room after having performed a CAT scan on my brain. I was there 6 days and night and my count got up to 43 after the 2 IVIG and some Prednisone and they released me and set up my appointment with the Hematologist I chose.

THey scheduled me for 2 blood tests before that first appointment. The first test 3 days after my release my count was down to 29 and they put me on 60 kg Prednisone a day.. The second test 2 days later I was down to 2 again and the hematologist at that Hospital Cancer Center said that I had to go to the Riverside Cancer Ward again based on what she was seeing. She called ahead and alerted them that I was on my way and that I had to check in through the ER because they were waiting for a bed and room to be available. In the ER I was administered a Platelet transfusion. Was finally wheeled up to an ICU room in the Cancer Ward. Administered another platelet transfusion. After 2 days the decision was made to begin the Rituximab and Nplat. My Prednisone was knocked down to 20 mg a day.

Thats where I am now. Had the second Rituximab infusion today along with the second Nplat at my hematologists office. No blood or platelet test. That will be a week from today when I go in for 3rd Rituximab treatment.

Whether any of that was necessary, whether any of what I am taking and receiving now will help me bring my levels up I do not know. Its all too confusing. Is it serious or is it not serious and just an irritant.

Be interesting to see your count next week. The Rituximab may well take a while to kick in though. Hope all goes well.

I really don't want to second guess any of the care you've had so far.
But IMO, it seems an unnecessarily aggressive approach. For one thing, platelet transfusions are not a good idea for low counts associated with ITP except to control hemorrhage.... which you didn't have. Left to their own devices, emergency room MDs frequently jump the gun when they see ITP.
And for another, it's unusual for someone so newly diagnosed to have Rituxan, and I can't recall anyone having both that and NPlate simultaneously.

What I do know is that most people in lower-risk jobs can safely work even with single digit counts. Wear your seatbelt every time you get in the car and drive safely!

Your mortality risk from a brain or abdominal bleed is lower than you might think. This information by a panel of doctors at Johns Hopkins might reassure you about the numbers: www.medscape.com/answers/779545-7287/what-is-the-mortality-and-morbidity-associated-with-immune-thrombocytopenia-itp
A 40-y.o.'s risk of brain hemorrhage is 2.2%. Mine as a 70-y.o. is 50/50ish, but maybe it would be close to that withOUT ITP, you know? I'm not worried. Never have been. When my count plunged to 4, I'd just tell hubby to drive more safely with me in the car and went about my life as usual otherwise. I refuse to let a number on a lab sheet scare me very much. The treatments, though, are another subject.

Try to relax. Maybe ask your doc to relax a bit, too. The best mothers never let their kids know how scared they are. MDs should adopt the same attitude.

Your ER experience seems pretty usual to me, especially since you didn’t have a regular hemo. It is nice the dr called the ER ahead of time. With autoimmune and rare diseases it’s always good to have your dr do that since the ER staff usually don’t have a great idea about how to go about treating. Odd though that you were given platelet transfusions when a hemo had called them, but these things happen. It’s no harm done.

With nplate a CBC should be done prior to each injection. Also, considering you are new to ITP I would think regular (weekly) CBCs would be important in figuring out how you are reacting and what is or isn’t working.

I agree with midwest about rituxan, nplate and the rest.

Remember you can always change hemos. I’ve had plenty. Chill, intelligent, creative and realistic drs are the best. If there is an ITP group in your area you may want to attend and/or contact the leader and ask about hemos.

I think for the most part ITP is an annoyance. In the beginning the rollercoaster of high and low counts, going through a list of meds to find one that works for you, learning about ITP and how it affects you and adjusting to a ‘new’ life can be stressful and worrisome.

We are all different and ITP affects us differently. Don’t worry, you will find a place to land. The goal is to find a treatment that works for you. (keeps counts up and works for your life style)

If you think you can work with the fatigue and bruises, then I would talk to your hemo about wanting to return to work. Come up with a plan, so you don’t feel like a big question mark.

Build a support system, if you don't already have one. It can be good to talk, laugh, cry about things other than ITP. Good to give your brain and heart a break.

My hematologists office completed my sick leave paperwork to submit to my employer the USPS. I am a rural mail carrier. 11 to 12 hour days 7 hours of which are on the road driving 70 plus miles on rural roads and highways.lots of getting out and running up to houses and such. Never missed more than 3 days in a row because of illness in over 25 years. As a result I have over a year accumulated sick leave days. SO the paperwork requires them to not only name the condition I am out for but also to estimate a time for return. They suggested October 5. I was like what? lol Is there something they know that I do not? Are they preparing for the possibility of spleen removal as a last attempt to deal with? They did say that the return date can be easily changed to accommodate my recovery.

I figured that if I get my levels up and over 50 or 60 and stabilized I should be good and then work on keeping them up and hopefully increasing. Im pretty sure that I am in or at single digits still considering how my body is reacting. My skin is fragile and easily broken. The tops of my feet have spots that are rubbed open because of the friction of wearing shoes all day from this past wednesday going to my second Rituximab treatment. On my job with lots of running up and back to house porches through all sorts of weather, mud, dirt etc etc and from what i understand about Rituximab suppressing my immune system would that likely put me at greater risk of serious infections with open wounds and the like? None of the skin problems or bruising happened until I was in low digit platelet levels. And the level of fatigue right now is not where I can effectively deal with things. I am assuming that that will improve as well as my levels increase. I have had fatigue issues for many years but it has never interfered with work because I learned how to cope and deal with so having to do so is not a problem for me once I am out of this particular fatigue range which seems to cycle throughout the day from feeling better to feeling really bad.

This is all so crazy to me...within a month everything has changed..thanks to all of the input though

I guess to me, as someone who has never had a "serious" illness, doesnt go to the dr because I havent had to, in relatively good health, to suddenly be told that I have to go the ER..immediately..out of the blue based on platelet counts in conjunction with how off and poor I felt physically along with the disturbing out of the blue serious bruising...bruising like someone had beat me with a ball peen hammer all over my body. Being admitted in the ER, having Cat Scans done, being placed in a bed in the Cancer ward with a yellow fall risk bracelet on my wrist along with all the other hospital bracelets, having the alarm on the bed set so that if I got up the nurse desk would be alerted, being allowed to leave after 6 days and 6 nights for 5 days until I was told I had to go back to Hospital because levels plummeted again and being put in an ICU room back in the Cancer ward of the hospital and undergoing all sorts of tests and treatments....lol

As someone who hasnt had to have a medical prescription in over 20 years It was and is quite a shock to the system. I assume that the Dr's and specialists know what they are doing. From my point of view, however much I learn on my own, I will not be in a position to question their judgments or solutions other than by judging how my body feels in responding to a particular treatment. So I am now like, was the hospital time a waste of time? I know that I felt physically like something was terribly wrong and still am not up to much other than rest and recovery.

b2h
I agree with you and midwest apart from "you were given platelet transfusions when a hemo had called them, but these things happen. It’s no harm
done". Actually as an ex blood donor I feel harm has been done. Someone donated those platelets and they were completely wasted. However it goes
towards my point below that doctors do not always know what they are doing. Over 40 years as a qualified nurse I know full well they don't.

gozorakgogo
You are on Rituximab (far too soon in my opinion) during a world wide pandemic of Covid 19. You must be very careful, full social distancing and a face covering at the least and scrupulous hand hygiene. Up until yesterday in the UK you would have been confined to your house for that last 4 months apart
from medial visits.

ITP is a very unpredictable condition platelets can be stable, rise and fall, there is absolutely no guarantee you will reach a certain count and stay there.
You may well get crashes in your count resulting in you having to take a rescue remedy.
You may well have this condition for the rest of your life. You have to take some responsibility for its management not just blindly do what you are told.
Read, read, read and learn as much as you can about it. Assuming that the Dr's and specialists know what they are doing is not the way to go
(ie giving you platelets) You need to be questioning everything, asking them why they do what they do.

I am curious mrsb04 about your comment about how until recently if I had been in the UK being confined to my home for 4 months. Because of Rituximab? I understand and agree about my having to take some responsibility and learning to accept and deal with my new reality but I am a mere civilian with no history or knowledge(other than the most basic) of this condition. Whether the 3 platelet infusions were wasteful, clearly they were and my Hematologist stated that he would not have ordered them, I was not in any position to challenge or question anything at that time. THe same is true of everything that has been done to me up to this point. I was in the hospital with only my cell phone that first time trying to do some research but of course what good is a cell phone when you dont have your readers with you and in any event I was not in the best frame of mind to concentrate or absorb what ITP was since at the time they told me that they thought that might be what it is and were busy attempting to rule out possible causes with multiple blood tests.

As far as those 3 platelet transfusions go, it was not my hematologist who ordered them nor was it the hematologist who told me that I needed to get to the hospital again for the second time. My hematologist was not my personal Dr at that time. I had chosen him as my personal Dr based on how comfortable I felt with him during that first week in the hospital. He happened to be out on vacation at the time of my second trip to hospital. Im guessing that the decision was made at the ER based on what information they had about my case at the time. All I knew was that I had a "critical platelet lever"(their words not mine) and that to me, a layperson, at the time with no understanding of how these things work it seemed to me your low on oil, you add a few quarts of oil to the engine. If that doesnt stop the leakage then you diagnose the problem.

I am fortunate in that I do live alone(with my cat Sparky) and I do socially distance and always wear a mask when out in public. My job does not require me to come within close proximity of anyone as a mail carrier since i spend most of the time driving my personal vehicle and putting mail in boxes and delivering parcels to homes. Even then most everyone of my customers are very understanding as am I and I am never within 6 ft of anyone for more than a minute, if that. My party, socializing, hooking up, etc etc days are gone...Ive aged out of that lifestyle and am perfectly content with chilling out at home with the cat. Ive had my fun in life and now like the easy going lifestyle. In fact, well before my experience with ITP I was socially distancing and taking the proper precautions for the most part. I could probably name from memory the few times I have been in close proximity to others for more than a few minutes.

again my friend, thank you for your kind advice. I will do what I can to educate myself but I fear that in the end I am far to trusting of those who are supposed to know what they doing...thats just me

When I read something like this..I think no worries lol
www.ncbi.nlm.nih.gov/pmc/articles/PMC7204643/
www.ncbi.nlm.nih.gov/pmc/articles/PMC7165093/

Over here patients who had high dose steroids recently and rituximab within last 12 months are considered high risk and advised to shield. Those restrictions have been lifted this morning but may go back into place should we have a rise in Covid positive people.
UK ITP Association doctors went so far as to publish this in their own covid guidelines stating "Rituximab is responsible for long-lasting B-cell depletion and potentially severe infectious events and the impact of the drug on infection risk of COVID-19 is not clear. Furthermore it can decrease formation of de novo antibodies. Until further information becomes available, it may be prudent to avoid immunosuppressant agents and rituximab in new or relapsed patients during the COVID-19 pandemic if possible."

I fully appreciate that you were in the dark to start with, probably terrified and trusting doctors. I was nowhere near my comfort zone when I was diagnosed. ITP was a whole new ball game compared to renal nursing. I spent most of my night as an inpatient on my mobile phone researching ITP then all day when I got back home.
There seem to be a lot differences between USA health care and the UK way of doing things. No doubt in some part due to the fact that you do not have an NHS, and seem to be governed by insurance companies.
Over here there are pathways to follow: for example if some one turns up in ER with hardly any platelets get the the on call haematologist down for advice immediately so you actually know what to do.
I sincerely hope things improve, you count goes up and you get back to work soon.

It was an interesting experience. While in the hospital on both occasions there were multiple(id say 6 different oncologists and hematologists) who came in to inform me what was up and what the course of action would be. In this particular hospital the hematology/cancer ward are on the same floor and part of the same unit. At the end of my first stay I was told that I needed my own personal hematologist for my future treatment so I chose the Dr who I felt most comfortable with. I was extremely impressed with the hospital staff and nurses and crew in the cancer ward. Everyone was so nice and kind. And I was impressed with the food.

I would say that the most at risk I have been from covid since covid became a thing has been these trips and stays at the hospital and multiple trips to my hematologists office(which is located on the same campus as the hospital I check into). The hospital ER and having to wait multiple hours on both visits in the ER waiting area before being brought back was chock full of people. The cancer center visits however are not as concerning to me simply because most patients who would need to visit I would think are going to be extra cautious and careful avoiding covid because of their medical condition. Again fortunately for me, because of my recently developed(within last 2 years) lifetstyle change of pace along with my job, the risks of my being exposed to covid, while not impossible, would be much less that for many if not most people in may age bracket. I hope all of us here are able to protect themselves from exposure as well as I am able to.