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Not officially diagnosed but ITP is being said a lot? 3 years 1 month ago #67787

  • amlucki
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In Sept. I went in for pre lab work for a minor surgery on my finger my platelets were 12,000 they ran labs twice same result I’ve been poked a lot since then platelets going to 10,000 then to 15,000 then I had a platelet transfusion and they went to 22,000 then they started me on 100mg prednisone 2 weeks ago and today my platelets were at 65,000 they’ve ran a bunch of labs so far all is normal they did an ultrasound of my spleen it is normal as well we are still waiting on other blood tests to come back but all the doctors keep referring to ITP and I am just curious what are questions I should be asking or things I should know concerning this diagnosis they did mention some people go into remission for good and others it’s a constant up and down? How often should you have labs done to monitor etc it’s been a rollercoaster this last month thank you all in advance

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Not officially diagnosed but ITP is being said a lot? 3 years 1 month ago #67789

  • mrsb04
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Not officially diagnosed but ITP is being said a lot? 3 years 1 month ago #67803

  • JJ
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My suggestion is to see a haematologist who is experienced in treating ITP. The dose of prednisone you are taking is very high for ITP which suggests that the prescribing doctor isn't all that experienced. Apart from that look at the available treatments and learn so that you can advocate for yourself, and don't let them take your spleen.
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Not officially diagnosed but ITP is being said a lot? 3 years 1 month ago #67807

  • camperguy65
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First, and unfortunately, ITP is so rare and is barely known by any of the MDs. I've had several Hematologists/Oncologists, and out of all of them they were lucky if they had one other single ITP Chronic patient. ITP can be acutely caused by an infection, or H. Pylori in the gut from raw fish. Japanese get it much more than Westerners. If you are young under 50 and no family history of chronic Immune diseases like Lupus, Socratic Arthritis, and others blood disorders, etc. You may just be temporarily down due to even a drug or med you take regularly like chronic Ibuprofen takers which can destroy your platelets. I have a young cousin who in her twenties took Ibuprofen everyday over the counter and had her platelets down into the 20s. They recovered once she got off the Motrin, etc. The most surefire way to know is prolonged platelets in the low numbers, and a bone marrow biopsy which shows if your bone marrow is producing platelets normally, but something else like your immune system is destroying them prematurely. If you do ever have a biopsy done, and the Dr. works in the local very well before he begins, it's a painless test. Felt nothing but him pressing down on my back a bit. My mother's side of the family has extensive immunology problems, and unfortunately, I have inherited as well. We all have different chronic severe conditions. Hopefully, if you have ITP yours will be milder and more manageable. Mine is severe, and I only have one drug that works for me after having tried all the others. Nplate its called which boosts platelet production in my marrow (though mine was still normal) thereby outnumbering and overwhelming my destruction rate. NPlate = Attrition: So many produced my immune system cant deplete them fast enough, but I got a huge spike in my platelets last month above 970, and got a blood clot in my lower Aorta that also went to my lower leg. Had to have a stent placed to trap the Aortic clot, and have my leg opened up to relieve swelling from Compartment Syndrome, or they would have had to amputate my leg. As I'm sitting here, my leg is still open incision 3"x7 " long. 8 more weeks, until it should be finally closed. ITP can be fairly mild and manageable for many or even most, but I'm on the extreme end of the spectrum. For some it even vanishes if you're younger. I have been on every kind of ITP specific medication to date now including the latest 2018 Tavilise, which has failed me. It worked for two weeks then nothing. Steroids and NPlate are all that continue work for me long term. I've had IVIGs, Rituxin chemo drug (worked one time for 16 months then never again after two more tries with it). Promacta did nothing for me either. I do still have my spleen ( being talked about now - they throw stuff at the wall to see if anything is left for me that sticks at this point). Spleen removal is only effective in like 24% of those who elect it. Spleen is primarily where the platelets get destroyed, or sucked up. It's the oldest treatment when they discovered it in like 1920, etc. It can fully cure some but not many, but you forfeit your immune system losing your spleen. Some statistics will say you are more likely to die from Pneumonia or infections after a Splenectomy than from ITP FOR MOST. It's been a very rough and aggressive diseases I never had any input to choosing in my life. Don't let me discourage you. Most have milder situations that can usually be managed with the existing ITP meds. There are so few of us, that it's very hard to get funding to find a cure, or a really good drug. It's not a money maker drug like Viagra, or they'd funded it and figured it out long ago. There are only like 40,000 females in the US chronic, and 20,000 males chronic. 60-70k population reporting Chronic ITP, so it's rare and not much research money base, except for the US govt declaring it an orphan disease to get some small grants for it to research a little, etc. As for me, I may be heading toward more aggressive forms of imunosupressive treatments like cancer patients transplant recipients. etc. to destroy parts of my immune system or suppress them from killing my platelets. Getting to that phase it seems. Don't be discouraged though, like I said, I'm the extreme end of the spectrum now. Wish you the best. Regards
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Not officially diagnosed but ITP is being said a lot? 3 years 1 month ago #67810

  • amlucki
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Thank you for your response I noticed excessive bruising back in April when I started going to the gym and I blew it off then in July I cut my finger and had to make a trip to the ER they had trouble getting my finger to stop bleeding they asked then if I had always bled like that I told them no and they never asked anymore about it well my finger formed a cyst and I had to have surgery in Sept well they did pre labs and my platelets were at 12,000 they did the test again and it was the same 12,000 they did the surgery and recommended I see my PCP well a week later I followed up with my PCP and my platelets were at 10,000 so he referred me to a hematologist they had me go straight to the ER and my platelets then were 15,000 and they did a platelet transfusion the next week at my hematologist appt they were at 22,000 so they started me on 100mg prednisone after two weeks my platelets were up to 65,000 they have now lowered my prednisone to 50mg a day I go back in two weeks they’ve also checked my spleen which is normal so far all blood work is normal I am 36 and I am not on any meds other than birth control I do have family history of Lupus I had an uncle that passed from it. It has just been thrown at me and they just keep saying ITP so I started researching and came across this forum which has been so informative and I really appreciate it!

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Not officially diagnosed but ITP is being said a lot? 3 years 1 month ago #67812

  • MelA
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Have you been tested for lupus? Did they drop your prednisone from 100mg to 50mg?

A platelet transfusion usually doesn't work because those antibodies that have attached to platelets will also attach to the platelets that have been transfused and that will be detected and the transfused platelets destroyed just as the "home grown" platelets are destroyed. (hope I'm making sense, it's late & I'm tired - but what happens with ITP is antibodies are attaching to our platelets and those antibodies are being detected by the organs in our body that clean blood and are then destroying the platelets, our body is doing its job destroying something that isn't normal - that's how it was explained to me)

Just curious if that was a digital mucous cyst on your finger?
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Not officially diagnosed but ITP is being said a lot? 3 years 1 month ago #67813

  • amlucki
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They have ran so many tests CBC, ANA, testing for HIV, HEP C, even tested for some that I can’t pronounce the names and so far nothing as far as I know I do not have lupus but I’ve read it can take years to be diagnosed I don’t really have any normal symptoms of lupus The symptoms I do have are bruising easy I did have Petechiae on my lower legs for a bit and I had 1 nose bleed, fatigue, heart palpitations and I did have some anxiety issues that would randomly come and go but all that happened at different times and I never linked them all together until all this started and yes they dropped my prednisone from 100mg to 50mg

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Not officially diagnosed but ITP is being said a lot? 3 years 1 month ago #67817

  • MelA
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Good that all your tests are coming back ok!
Wow - that is a huge drop in prednisone dose!! They did that to me - I was on 60mg and they wanted me off it before we moved to Tokyo so the dose was dropped to 30mg and my count hit the gutter so back up to 60mg. Hope yours doesn't do that!! When is your next CBC?

Were the heart palpitations and anxiety before or after the ITP diagnosis and taking prednisone? Those aren't really symptoms of ITP but could be due to pred.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Not officially diagnosed but ITP is being said a lot? 3 years 1 month ago #67818

  • amlucki
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The heart palpitations and anxiety were prior and I don’t go back for another almost 2 weeks for CBC

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Not officially diagnosed but ITP is being said a lot? 3 years 1 month ago #67836

  • Hal9000
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... There are only like 40,000 females in the US chronic, and 20,000 males chronic. 60-70k population reporting Chronic ITP...

That is an interesting statistic camperguy. Not heard it before. Do you happen to recall where you heard it from?

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Not officially diagnosed but ITP is being said a lot? 3 years 1 month ago #67837

  • Hal9000
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... then they started me on 100mg prednisone 2 weeks ago and today my platelets were at 65,000 ...

It is interesting that you got a 'partial response', a 65, out of prednisone amlucki. This may sound weird. Never the less, do you exercise a lot?

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Not officially diagnosed but ITP is being said a lot? 3 years 1 month ago #67842

  • MelA
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HAL do you feel exercising causes low platelets?
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Not officially diagnosed but ITP is being said a lot? 3 years 1 month ago #67843

  • mrsb04
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www.kheljournal.com/archives/2017/vol4issue3/PartI/4-3-135-661.pdf
An interesting, and recent, read regarding exercise and platelet counts

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Not officially diagnosed but ITP is being said a lot? 3 years 1 month ago #67845

  • amlucki
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Well I was going to the gym daily sometimes 2 a day for an hour at a time but I haven’t been to the gym since July that’s when I hurt my finger and was limited until it healed but then I found out about ITP

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Not officially diagnosed but ITP is being said a lot? 3 years 1 month ago #67846

  • johnmerrick
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at the gym daily for an hour is a lot. 2 times a day for an hour each is crazy.
that could bring on ITP and/or make it worse.

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Not officially diagnosed but ITP is being said a lot? 3 years 1 month ago #67847

  • MelA
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You tear down muscle when working out/exercising - you have to give those muscles time to rebuild before you tear them down again. Should not work on same muscles every day! And after a workout you should have some protein. I still don't know about working out bringing on ITP.

Thanks mrsb - will read that article later, The Grands will be here soon.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Not officially diagnosed but ITP is being said a lot? 3 years 1 month ago #67848

  • amlucki
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I wasn’t doing CrossFit or anything I would mainly walk on the treadmill and alternate between weights with my legs and arms nothing excessive and I hadn’t been to the gym in over 2 months when we found out about ITP and my bruising started day one of going to the gym so it’s most likely I had issues prior to starting the gym

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Not officially diagnosed but ITP is being said a lot? 3 years 1 month ago #67860

  • Hal9000
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Off hand Melinda, I don't recall reading about anyone here reporting a consistent drop or rise in counts with exercise. But I do recall at least one story where one could find out their counts were too low by having a nose bleed while exercising.

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Not officially diagnosed but ITP is being said a lot? 3 years 1 month ago #67861

  • Hal9000
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amlucki, you might find this thread interesting.
pdsa.org/discussion-group/7-treatment-general/30169-no-response-to-ivig-ack.html#64535

Some folks report exercising a lot and have a less than full response to steroids (eg users EmilyK and jayinchicago). So it was your steroid response that caused me to ask about exercise. Perhaps you are in that group as well.

Spoiler alert. My theory is that there is a trifecta of issues which cause this type of ITP.

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