ITP: Hi I diagnosed with itp last July... - ITP Support Assoc...

ITP Support Association
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ITP

Fishing55
Fishing55

Hi I diagnosed with itp last July, platets count was 1had ivigs and platets infusion been up and down since then steroids keep my count up with revolade. Just would like my life back to normal.

5 Replies
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Hello Fishing 55 and I know exactly what you mean about wanting your life back.

I have been living with ITP for 15 years albeit I was only officially diagnosed in July 2006. I was actually suffering many typical ITP symptoms (random, mystery bruises, tiredness/fatigue) for about a year before I was officially diagnosed.

I guess after 15 years I have learned to live a new kind of "normal" life. Undoubtedly ITP does throw in some tricky moments and they seem to come along just when you might think that things are settling down.

I am on Mycophenolate Mofetil (MMF) and it has kept my platelet counts around the normal level for the last 4 years and 3 months with the odd blip along the way. But I have had Prednisolone about 6 times, Rituximab twice as well as Azathioprine (which I couldn't tolerate at all).

If you wish to read a bit more about my story so far then please feel free to have a look at my ITP blog- myownpurplepatch.simplesite...

I have tried to carry on as positively as I can despite my ITP. It is hard work, I won't deny it but I guess I have just realised that you have to focus on the things that you can do rather than on the things you can't.

Also I try to take things day by day rather than look too far ahead, especially now with the Cover-19 situation, things are just so dynamic & some things we just can't control.

Anyway, best wishes to you

Anthony

Fishing55
Fishing55 in reply to Anthonyh7

Hi thank you it is nice to hear from other people with the same, Last year I was in hospital 5 times for a week at a time had so many ivigs my last stay was in December. My platets are up and down all the time in one week they were 400 dropped down to 10 lots of bruising so tired all the time have no energy thankfully my children have been a godsend, thank you Susan

Anthonyh7
Anthonyh7 in reply to Fishing55

If you haven't already found them, the following links are to the most reliable & up to date ITP information...

1. itpsupport.org.uk

2.pdsa.org

3.globalitp.org

Hope this helps.

Just had surgery, they removed my spleen 50/50 chance of curing. Currently my counts are normal. I was diagnosed in January of this year. Steroids didn’t do anything for me, had shots of endplate worked a few times but last shot did not boost my platelets. Good luck fighting this disease. This site is good for support and resources.

My lowest count was zero and my highest count was 1440 (sticky blood) with too many platelets! One week I went from 3 on the Monday to 968 on the Friday and I am still here :). As Anthony says take each day as it comes. There is no logic to this condition, don't try to second guess it.

I too am on MMF and it has stabilised my condition. However that was after 7 other treatments including a splenectomy that did not work and over 125 visits to hospital in 18 months. We all can agree it is a scary condition but it is called idiopathic because no one knows why it occurs or how to best treat it.

I found a lot of solace from contacting people on this site. We know what you are going through and we will listen if you are worried or scared.

Take care.

NickyD

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