Newly diagnosed to ITP from the land of down under

Hi everyone.

My name is Louis. I am a 46 year old male from Melbourne, Australia.

I have been recently diagnosed with ITP and thought I would share my short but lifechanging journey with this condition.

I was diagnosed with ITP on 1st October 2010.

I did not know I had low platelets until I went to the doctor after work with spots on my legs (petechiae) and trickle of blood coming through my nose. 1 hour later, a blood test revealed I had a platelet count of 1.

I was immeadiately admitted to hospital and stayed there for 11 days. My platelet count went up and down between 1 and 7 (Only went to 7 as a result of 2 doses of IVIg transfusion on my second day in hospital, but dropped back to 1 the following day).

On my 5th day in hospital I had a bone marrow biopsy.

All tests conducted by the doctors came back normal apart from extremelly low platelets.

I was prescribed with 100mg of prednisone from my first day in hospital.

I was a concern to doctors who wanted to remove my spleen if my count stayed very low. Another doctor said that chemotherapy might be another option before spleen removal.

On my eleventh day in hospital, my platelet count went up to 18 and was allowed to go home much to my releif. Being hospitalized was driving me crazy, especially as I have never been hospitalized before.

On the 18th of October a routine blood test revealed a platelet count of 141 and prednisone was dropped to 75mg as a result. I am still on 75mg until my next blood test on the 25th of October.

My whole ITP experience has come as quite as a shock to me considering I felt good and was working everyday up until my diagnosis. I am a very healthy person who exercises regularly and eats very well (I held a fitness instructors certificate until a few years ago). Even my friends and family were astounded that someone so healthy could be 'sick'.

I am a optomistic person so I will look at everything in a positive manner. Still, this experience has provided periods of being scared, confused and frustrated.

I have joined up to gain a further understanding of the disorder as it may become a lifelong condition and how other people cope.

There is one thing I will add that may and probably be coincidental.

On days 6-9 of my stay in hospital, my platelet count was 4,4,5,5. I started taking a product called 4life transfer factor classic after reading on the internet forum a person with a similar condition to mine was in remission for 2 years after taking this (I will make this clear that I do not sell this product or have any association with this product). The next day my platelet count went to 8, then 18 the following day when I was allowed to go home after hospital. My last count was 141. Coincidence? Probably. Maybe the prednisone is finally working but I thought I would let you know about it as I am taking it and my platelets started going up.

Thank you for sharing the time to read my story. I will try to update my progress in the future.

Lou,

Thank you for sharing your story. It's amazing how ITP comes into many people's lives so suddenly and then everything changes! That's how it was for me too. Seems like you have a really good outlook on the whole situation. It's ok to feel scared, confused and frustrated - ITP can be overwhelming especially if you are relatively healthy person otherwise. All those emotions will hopefully fade for you soon as you become more comfortable with having ITP.

It's great that you are seeing an increase in your count! Yay for platelets! From what I have been told, sometimes it does take Prednisone a decent amount of time to kick in. For me, I did IVIG for 5 days and 60mg of Prednisone with it. My count was at 1,000 as well when I began treatment. I think it was 3 weeks after the IVIG, my platelet count sky rocketed (high 200's) and my Hema told me it was the Prednisone just kicking in.

Best of luck to you! Welcome to the forum - it is an excellent resource!

Amy

Hi Louis, I also live in the land down under and was diagnosed in July with a count of 70. It has gone up to 100 and down again to 60. I am 53 yrs old(?). I have just joined this forum and would like to connect online with other Aussies - I understood your numbers - I am seeing a naturopath but not yet the numbers I would like. We are trialling different herbs etc. I am thinking there should be an Aussie support group. I appreciate that energy levels vary but I am just putting this out there. Very best wishes, Sally

Hi Sally,
There is an Aussie support group of sorts - for several years we have been communicating Tuesday evenings via the Chat on here.
There are a few regulars, & over the years others who come & go.
Our regular 'chatters' come from NSW, SA & New Zealand. We vary in length, degrees & treatment of ITP. All are very friendly & supportive & welcome new friends!
mj

Hi mj, I was lucky to see/find you're response. I'm new to this chat group thing and will take some time to learn how to navigate this site. Any pointers? I guess Read The Manual is always a good place to start! Thanks for your reply. I live in Brisbane and am a recently retired registered nurse (neck spasms). Look forward to talking to you again. Best wishes, sally

HI and welcome to the boards. I am in Bathurst NSW and have had itp for 12 years now and have been on and off the boards here over the years. I have recentley come out of remision with a count under 1000 and in the past 3 weeks have had 6 ivig infusions am on 100mg of pred and had my first dose of round 3 Rituximab at RPA in Sydney.( I got 3 years then 2 years out of last treatments) You will find this place a wealth of information and support.
Bron

Sally, Bron, Lou & anyone else wishing to join our Aussie Chat.

Login, then go to Join the Community/PDSA Chat Room. Hope to 'see' you there.

Tuesday night Queensland - standard time 6.30 pm
NSW/VIC - Daylight saving time 7.30 pm

mj

Hi Louis, I need to apologise for blundering in on your very personal and (dare I say) interesting story like the newbie that I am.
From my reading of the websites about 4 life transfer factor it is based on colostrum and other nutrients that are passed to offspring after birth to transfer immunity. Colostrum is a widely sold and well regarded product in the health food industry and can be found in 'Inner Health' powder (It is always stored in the fridge).
My personal belief (and do what you will with it) is that we have inner knowledge that if we tap into it we can help ourselves to heal. Although my count has not yet reflected it, I 'know' that the changes I have made to my diet and most of the supplements I am taking are improving my health. Others we are still experimenting with.
I have received wonderful strength and help from meditation. A website called Meditation Oasis gives free download guided meditations for ipods. There are over 30 meditations of different lengths and her voice is very soothing (even for the Aussie listener). I also enjoy Yoga Nidra (guided relaxation-body awareness) and Kundalini Yoga ( fun, a bit whacky but I find it effective).
Good luck with the 4life. I wonder how long we have been living with ITP before we find out? I was diagnosed from my first ever blood test (energy levels a bit low- thought menopause) Nothing as dramatic as yours!
Kind regards, sally