I was diagnosed with ITP in May of 2020. After fighting to convince my gynocologist that I was having an abnormally long and heavy period we entered the global pandemic and I was getting no where fast on getting any kind of blood work done in person. After nearly passing out while picking strawberries, I went to an urgent care where they discovered my hemaglobin levels were 5.7LL with undetectable platelets. I was told I needed to head to an emergency room. Upon checking in they ran a CBC and told me that while my hemaglobin was low, I was not bleeding enough to be worried. The gynecologist tried to convince me to opt out of checking into the hospital, and if it was not for a very nice we nerse I would have walked out without realizing my platelets were 2LL. Once they checked me in to a hospital bed they called in a Hematologist. I was in the hospital for 6 days. I got three blood transfusions, and one platelet infusion, which I had an allergic reaction to, before the steroids kicked in. I was able to beg my way out of the hospital with a platelet count of 38L and a large prescription of Prednisone. I was on Prednisone for about a month before they tappered off. I had horrible side effects, lost a bunch of hair, had huge mood swings, and insomnia. My platelets held for two months above 150L before they dropped below 100L and I was put back on Prednisone at an extremely low dose. I still did not tolerate it very well with major insomnia. I as a healthy 28 year old just beginning my career, this disease has thrown me for a loop. I have had no symptoms since my hospital visit, but the treatment has taken a toll on my quality of life. I am a Field Biologist and am regularly out hiking on slippery rocks in the middle of the stream, far from cell service or medical care. It is my dream job and I have worked hard to get where I am as a program lead. While work has been incredibly flexible, almost all the sick leave I banked in the first two years is gone. With the diagnosis now as chronic, I am struggling with the decision to quit my job to find something safer. After all my reading on ITP, I am still not sure how to feel about this disease and how serious it really is. I am planning to try rituxan as a last ditch effort to put this into long term remission. I do not think I ever want to be back on Prednisone and am prepared to live with lower than normal counts to make that happen. I do not want to feel conquered by a blood count, but I do have more to live for than my job. I am curious how others have handled all the time off work for treatments and if anyone else has made career decisions based on ITP. Thanks for listening; I have found the information and personal stories on this site invaluable!
Mkern03 - when you say 100L do you mean 100,000? I've not seen anyone use the L after a platelet number before - thanks.
What was your "below 100L" ? Most of us will agree with you about prednisone - I was on it for a few years because we had moved to Tokyo then Hong Kong shortly after my diagnosis in 1989. I did refuse to take it back in 2002 when my count hit the gutter after a tetanus booster, I was given a WinRho IV instead. Personally I wouldn't make any decisions right now about a job I loved and worked hard to get - you have been at this game of ITP for just a year.
Hang in there, things do get better. (and by the way, ITP isn't a disease it is a disorder )
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
I'm sorry to hear that you are having difficulties with your ITP. It can be frightening and overwhelming in the beginning, but things really do improve once you can find the right treatments that can help you achieve stable counts.
I would recommend reading through some of the older posts on these forums. There are so many modern medications for treating ITP that you can try to see if you can find something that works for you. Prednisone is not usually a long-term treatment option, and many people with ITP who are responsive to steroids at all will have their counts drop back down after stopping the medication. The side effects are terrible, as you've seen, so you definitely want to try other treatments.
Things like Eltrombopag/Promacta, Avatrombopag/Doptelet, Romiplostin/NPlate, Fostamatinib/Tavalisse, and more are some of the modern drugs that can help you manage your condition. Don't jump ahead to quitting your dream job without first spending some time with your hematologist looking into treatment options. Best of luck!
Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use
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Mel and Mom are right. It is frightening to develop a condition that can take time to find an effective treatment, there are many more treatments to try before you consider ditching your dream job.
Don't let ITP control you. Talk to your haematologist about treatment options available.
I was in the same boat as you almost a year ago(July 8). Never seriously ill, never been a patient in hospital, hadnt had a prescription medication since allergies as a kid and then suddenly at age 54 I found myself 10 days in the hospital including 4 in an ICU because my platelet levels had dropped to 2 (2000). Spending that time in the hospital having only my phone(no reading glasses but luckily a charging cord) and because of covid no visitors were allowed to bring me things I might like to have. I did the prednisone for a full month, had multiple IVIG infusions, a platelet transfusion and eventually did 4 treatments of Rituximab along with weekly platelet injections until november of last year. I was out of work for 7 full weeks because my hemo did not want to release me until I was able to maintain levels above 50 for a couple of weeks. I was really freaked and thought I would have to quit my job as well(im a rural mail carrier 10-12 hour days lots of physical movement and always a high risk of being in a serious auto accident because of hours on road and crazed drivers not to mention weather and night delivery in winter)
The first 5 weeks were emotionally traumatic with platelet levels rising then falling rising then falling and I felt I would be forever trapped in this cycle. Every new CBC was fraught with suspension and anxiety. Eventually much of what I read on here, which was of great help to me, proved to be right. Its a pain in the butt, having ITP, but not the end. I will say that physically I am not the same. Something has changed but I dont know if its associated with the ITP itself, the treatments, or something else. I have been at a level right around 100 with no treatments at all for 7 months now and i dont even think about platelet levels. Every once in awhile I will wonder if it will drop again requiring another trip to hospital but im too busy to even think much about it. I have chosen to ignore the fact that I had it. Im quite good at denial. That trait and quality may be bad in most circumstances but with ITP and low platelets and whether next year repeats itself its a great quality to have.
It will get better / easier. I was diagnosed in 2012 at 24 years old, and it took 8 months to get in remission. Rituxan is what did it, and for me, was the treatment with the fewest side effects.
I was in remission for 7 years (where the only ITP related thing I did was blood tests every 6 months), before my ITP came back in 2018. I did Rituxan again and was in remission for 2.5 years until today (hence why I am back on this forum after a few years off).
Prednisone is awful. That is the first drug most people get, and it sucks. Name the side effect, and I got it. It also never “worked” for me, in that as soon as I lowered my dose, my platelets crashed. You need to find what works for you and make sure you have the right doctor.
My Hemo was really good about recognizing when a treatment wasn’t working and trying another option. In those first 8 months, I think I tried 6 different treatments before Rituxan worked. If you are still only on prednisone, I would talk to your doctor about trying new things.
I have definitely learned to advocate for myself, my health, and my body due to my journey with ITP.
This forum is a great place. I have still never met another patient with ITP in real life, so this is a wonderful space to connect with people who have this shared experience.
I am so happy to read that Rituximab put you in remission. I am 8 weeks into my diagnosis and start that infusion treatment Thursday. I am hoping it puts me into remission!!! I have been hospitalized twice already once when Platelets were at 7 and once when they were at 19...steroids, platelet infusions and IVIG are not keeping me stable so we are on to Rituximab.
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