My Story, Newly Diagnosed.

hello everyone. i just want to share my story so that maybe someone would help me out with my itp disease. here it is, i think it was a year since i noticed bruises and small dark reddish marks on my body but never had any bleeding's or any other symptoms on having a itp disease. then this march 2012 i jot a job but i failed the medical screening because my platelet was 12. and so they told me to go to a hematologist. a week after i went to a hematologist and had a blood exam again my platelet was 14 the doctor said he would like to take a sample on my bone marrow but we cant afford the operation at that time. then days passes by i regularly check my platelet count every other week and the platelet count was raising from 14 - 26 - 43 - 90 - 180 after i got the normal platelet count i never checked it again. until one day on july 2012 i had a fever for 2 days and at the 3rd day my nose bleed for like an hour at that time we went to the hospital and they took some blood samples and my platelet was 4 the doctors said they want to make a blood transfusion but that hospital has no blood bank so we went to a different hospital to ask for blood transfusion but luck was not with us that time. we went to 3 different hospitals 2 hospitals were full and the other has no blood bank so we just went home and did nothing again. the next day i went to a clinic to see if my platelet went up a little bit because others say that having a below 20 platelet is dangerous so i had a blood exam and the platelet was 223. weird huh? from 4-223 in a day. at that time i thought it might be an illness caused by a mosquito bite "dengue" then after a month a had a fever again for 2 days at the same time my chest hurt, bleeding gums, wounds in my throat and on my head. on the 3rd day i was there was blood on my urine so we went to the hospital again and my platelet count was 80, that time the doctor gave me a told me to take prednisone, calcuim carbonate, and omeprezole. and report back to him after 2 weeks. i was taking 80mg prednisone a day for 2 weeks and my platelet went up from 80-170 so the doctor said that the prednisone is working lets try lowering the dosage from 80-60mg a day and report again after a week. after a week we went back to report and my platelet was 35 so they said to take 80mg of prednisone per day again and on the 26th of this month they will have to take some of my bone marrow sample to see what really is my disease.

id like to hear your opinions or suggestions on my concern in taking the operation for the bone marrow

By the way. I'm really sorry for my English im not really good at it xD

Don't apologize for your english, it is better than my teenage daughter and her texting :laugh:
I do not have ITP but my dad does and is going for a bone marrow biopsy on Wednesday. I may not be able to answer any questions, but I can let you know that you have come to the right place. Everyone here is caring, knowlegeable and has been wonderful during this journey. You are not alone. This has been the only place I have been able to find peace of mind.

A count going from 4 to 223 is odd. Did they check for pseudothrombocytopenia where the blood clots in the tube and the machine reads the count wrongly?

bloodjournal.hematologylibrary.org/content/117/16/4168.full

Yes, that is almost unheard of with ITP and no treatment. Very unusual.

That is quite an unheard of increase in one day. In the attachment Ann added, the purple top tubes contain EDTA. The anticoagulant chemical in this tube can cause the Platelets to clump and a miscount in the machine. From my draws and what I have read, the red or light blue top tubes are the best for Platalet counts. It may also depend on how long the tube sat before it was tested.
As far as the Bone Marrow test, do not worry about it. I had it done and was a bit nervous at first but it went fine. It did feel a bit wierd during the extraction though. The area is nummed prior to the proceedure. You will be fine. I was also initially treated with Prednisone. Generally Prednisone will only raise counts (not much) as long as one is on higher doses and when tapering off, counts will drop. You should do some reasearch in the Treatment section here for other options.
Good Luck!!

i have a question. im lacking sleep is it from the drugs that im taking? and i noticed alot of acne's on my back and on my face are these the side effects of the drugs? by the way i only get 3-4hrs sleep.

Yes definitely the drugs. Steroids have a wonderful array of side effects and unlike most drugs, we tend to see many of them appearing in everyone. I was warned when started on steroids not to think that I could start decorating the house at 3 in the morning and be finished by breakfast. I did feel wonderfully energetic though and had washing, ironing and cleaning all done long before breakfast. My house and garden were never so clean and tidy as when I was on steroids.

rjhey18 wrote: i have a question. im lacking sleep is it from the drugs that im taking? and i noticed alot of acne's on my back and on my face are these the side effects of the drugs? by the way i only get 3-4hrs sleep.

Welcome to the pro and cons of steroids. I went through sleeping issues also.

another question.
is it just me or do you guys also experience having leg cramps every morning?

That is also common with steroids. It can deplete potassium and calcium which can cause leg cramps. Eat bananas.

Predison sucks when it comes to the side effects it will cause musel lose in your legs over time. I have heard it called jello legs befor

hello again... i have another question.. does tapering on steroids make my face back to normal? because my face now is like its going to explode its full of fats hehehe

Yes, your face will go back to normal.

Look at pictures of the comedian Jerry Lewis over the years. He was on prednisone for a few years and his face got huge. Now it looks ok again.
Erica

hi.. i just to update my thread regarding my status . its been almost 2 weeks since i stop taking prednisone. my last platelet count was 130+ it was when i was still taking prednisone. after when i stop on the drugs my platelet dropped to 70. my hema recommended me to take prednisone again 10mg a day... i just want to know your opinions on this since you guys had more experience with the drugs would i go back on the steroids? or should i w8 until it drops to 20 below to take action on taking the drugs>? thanks in advance and God Bless you all

That's really up to you. Personally, I wouldn't treat at 70k, but 10 mg's is a pretty low dose.

thanks @Sandi for your comment. btw i went back on taking the drugs coz last week i my nose started to bleed so i immediately went to buy pred and take it xD.

i have a very stupid question... (i dont know if its really stupid, but i think it is ).
the thing is.. just a few more days and its Christmas so i dont know if drinking alcohol would make my illness get worse? i just want to know if did anybody drink alcohol while taking the drugs? or would it only be me hahaha

Most can agree that drinking in moderation is usually okay. What meds are you on though? You'd have to take that into consideration.

im on prednisone 10mg per day its been 6 months since i last drank alcohol xD hahaha i just hope nothing would go wrong when drinking while on steroids

I was much better at drinking when I was on prednisone! Usually one drink is my limit, but I could often drink two on prednisone, without the bad aftereffects. Erica

Nose bleeds can be scary especially if they are hard to stop. However for me they are a poor indicator of my count level. Dry weather and dry heat cause them for me at normal counts. Now if they are more frequent than once a day or take a lot to stop them, then I go get a count if I have other symptoms to support the low platelets like lots of bruising or other bleeding symptoms. I had counts in 50-60k range for over 15 years before I ever treated. For the dry nose, I use saline gel (AYR brand is my favorite) on a q-tip and swab it around the front of the nostrils before I go to bed. With time you'll find your footing and know what symptoms are your triggers. My funniest story is getting the counts when I had a rash from the sizing of a new set of sheets I put on the bed before washing them.

Alcohol and Prednisone are not contraindicated. I drank on Prednisone...no problems.

i have a question... is itp Contagious through sex?

ITP is not contagious at all. It isn't a virus or bacteria or anything that you can catch. It's a disorder rather than a disease.

No, it's not contagious. It's sort of like an allergy and you can't catch that from someone.