New diagnosis

Hi I am newly diagnosed with ITP in Australia with an 8 yo little girl. I had a similar experience - fatigue and noticed small red spots on my legs, hands and face so went to the doctor, had blood tests which returned a platelets level of 3. I was contacted by the GP who then called me in and rang the ED at the local hospital and I went straight up there - scary stuff. They repeated the blood tests where the level was 1 and I ended up in hopsital for 5 days with very worried family. I was started on prednisone which had little or no effect and then had a 'episode" in hospital where my heat rate dropped to 40, had impalpable pulse, inaudible breathing, slurred speech and left side contraction. I was transferred to a cardiac ward for heart monitoring but was also started on flebbio immunoglobbulin for 5 days. I was also given potassium and magnesium which was low. My platelets rose very slowly each day - 1,3, 4, 41, 120 and I was discharged. I'm continuing my visits to the haemotologist and cardiologist and was being weaned off prednisone but the side effects remain - numbness around my face and around and inside my mouth, stomach upset, insommnia, hand and leg cramps, hot and freezing cold sensations in my legs and arms and fatigue. Last week my platelets were 280 which was heartening but in space of 6 days yesterday they had dropped to 120 which was disappointing. The haematologist increased the predisone from 38 to 50mg yesterday and said we may need to remove spleen sooner rather than later. I also need to take calcium and magnesium supplements and was on potassium but this has been stopped.
It is my understanding that in Australia the immunoglobbulin which is administered by the Australian Red Cross is difficult to access - that a patient may receive it in the first instance or initial diagnosis but second courses are only given to patients to bring the platelets level up to a reasonable level to prepare for a splenectomy. Im told you may receive it only once or twice.
I am concerned about the removal of a spleen - i know you can live with out it - but i have family history of cancer and heart problems and wonder if it will effect my red and white cell count - but I guess I need more information
If my platelets continue to drop I can see me being readmitted to hospital which will be hard on my family especially over Xmas and January school holidays
Im trying to find out information about changing my diet to see if that helps in anyway but I have a pretty healthy diet and lifestyle - non smoker , non drinker and exercise regularly.
I'd appreciate any information and am glad I found this forum. I haven't found any local groups so if you know of any Im near Sydney?

Hello and welcome to the group. Sorry you have to be here.

I think some of your symptoms are related to the low potassium...especially the cardiac ones. Hopefully once those levels are up, you will start feeling better. I have low potassium also at times...been there.

I wouldn't be so quick to jump into the splenectomy. There are other treatments to try first. It's very rare that a person with ITP ever 'needs' a splenectomy. It's optional, especially if you respond to other things (which you do). You also didn't mention having any low count symptoms such as bruising and petechiae which is good. A lot of the time, people are not hospitalized with low counts, although some doctors tend to do that at first.

My only advice is to become our own advocate and learn as much as you can. It's good to know your options so you can be a part of the decisions instead of being told what to do. Everyone gets to that point eventually.

Gday paolag,
I am from Australia as well, sorry to see you are having so many issues. I have not been told of the restriction on immunoglobbulin in Australia, I had a few IV when I was first dx and while tapering prednisone the doctor wanted to give it to me again twice but I talked him into waiting to see what my counts would do on their own as I wasn't having any symptoms and my counts came up again so I really didn't need it.
The doctor also talked to me about spleen removal very early into the dx but I decided to wait and am now so happy that I did as I am now 12 months with no treatment and normal counts, they do tend to jump from the 220k mark back to about 130 or so every couple of months and then go back up again, just starting to see a pattern, up then down then back up again. I got an ap for my iPhone that you can track your platelet count on and it is great.
That I know of there is no support group in Australia, but you are in Sydney so you should be able to get a good Doctor. There is a group of Aussie and New Zealander's that go on the chat of PDSA ON Tuesday night at about 7.00pm I think, if you need any more info about this just let me know.
Milly

Thank you so much for your reply. I will follow up that low potassium with the doctor - i was put on it in hospital and for a week afterwards and then told to stop.
I am on magnesium now and my sister also sought advice and bought me a ultra vit c 1000 as well as tahiti queen noni?? that she was scouring websites and forums for to see if that helps. i will try for a week and see if that improve the platelets.
i had some blood test results come back today and found to be ANA positive?and anti DNA antibodies ? ssa60 positive????FI diagnosis??? i need to wait until next week to ask the haemotologist what this all means??
my ESR is 102H???
My GP says i need to see a rheumatologist??
Anyway i was so buoyed my your response and I am so relieved to have found this forum
Thank you thank you so much

Hi Milly
Thank you for your reply and your great advice - ill get that iphone app and make sure i follow the tuesday night chat.
im actually in wollongong an hr south of sydney but was feeling quite isolated as i was told we may never know was causes it but the symptoms were to be treated it is quite shocking at first.
Your story gave me some hope as i dont really want my spleen removed in the first instance and would like to try other treatments.
I did have severe bruising when i was in hospital and still have some bruising but my petechiae was very dramatic and was everywhere - hands, legs, body, inside mouth and roof , face, etc
thank you for your insight and im happy you had such success in last 12 months

Your blood results may, and I emphasise may, point to a diagnosis of lupus which is no doubt why your doctor is suggesting you see a rheumatologist. Something else to consider if the idea of a splenectomy keeps cropping up as some would say that lupus and a splenectomy should not go together.

hi there
so why would lupus and splenectomy not happen?

It's to do with blood clots. They now know that the asplenic are prone to clotting as are those with lupus particularly if they have antiphospholipid antibodies present. Those antibodies tend to come and go so it's difficult to know for sure if they are present or not, and of course may appear at any time for any of us with or without lupus as they are also pretty common in primary ITP.

But as with everything else in the ITP world, it's just one opinion. Some doctors don't believe it's significant while others do. Sandi knows more about this than me as she has been positive for APS and lupus.

PAO:

Ann is right. My ITP/Lupus story is a long one (beginning in 1998), so I won't bore you with all of the details. The main thing is that I have done a lot of research over the years, and ITP/Lupus and splenectomy can be a risky thing. Try to hold off on that until you see the Rheumatologist, find out what's going on and do some research.

There are many doctors who are not aware of the risks of splenectomy, so you can't really count on them to always steer you in the right direction. We've had people here with ITP who had a Hematologist push for splenectomy, but the Rheumatologist said not to. Makes for a very confused patient; this is where you need to be your own advocate and make your own decision.

Your labs do possibly point to a Lupus diagnosis, but you'd obviously need a doctor to confirm that. Have you had any physical symptoms such as joint pain, swelling, fevers, feeling flu-like, hair loss, mouth/nose ulcers, rashes, fatigue?

Your counts can be controlled with meds so this can buy you time to find out what is going on. No rush with the surgery.

Hi all just noticed purpura starting again on right foot have spent all day at med appts - cardiologist, renal ultrasound and renal duplex am sitting here watching rash develop and it's 2 days before Xmas
I will go gp tomorrow and have blood tests and try ring haematologist on Xmas eve
Dreading results
The prednisone does not work for me
There has to be so
Etching else I can try
I'm so disappointed and sad for my little one

Hi Pao,
I am from South Australia, a farmer, mother & grandma. I have had ITP for 7 years & still have my spleen. I'm sorry that you are experiencing all this, especially with a little girl to care for & being Christmas. All I can suggest is - know that you have many friends here to support & guide you, we have good health care in Aust., learn as much as you can to make personal, informed decisions, & try to live your life as normally as possible.
Despite all that's going on, may you know the joy of Christmas & much peace in the New Year.
Big hug from mj.

Last May, 2010, I was diagnosed with ITP. I did see a couple of hemotologist who recommended spleen removal. However, I decided not to do it.
In April 2011, I had an appointment at Mayo Clinic, Rochester, MN with the hemotologist. He has only advised 1 person in 10 years to have their spleen removed. He does NOT recommend it if a person has a good spleen.