Just after thoughts

Four years ago I found out I had ITP, had about 12 months of low counts and treatment.... My question is as time goes by is it less likely that it will reoccur or more likely. What have others found, I know we are all different but I am just after opinions

Hi Milly,

In my opinion I think it would be less likely to return after time goes by. I think it depends on what put you in remission also......you were on steroids for a long time, right? If you've been off for 4years I think it would be less likely to return. Do you have a thought as to what triggered your ITP in the first place?

Hey there Milly!

That is a question that can't be answered. I once had 3 years of remission and then the low counts hit again. I thought I was in the clear by that point.

The truth is that a simple cold could knock the counts down. Anything could. It's also possible that you may never have a recurrence. I wouldn't worry about it, just be aware of the symptoms and do what you have to do if something appears.

Dru ... There was a lot going on in the months leading up to me getting itp, stressful job ( now gone) I had also been on a trip to Fiji in the October before. It was February when I was admitted to hospital with serious bleeding, for the first. 36 hours platelets were fine and they had surgery set down for the next day to do a hysterectomy but the pre surgery bloods came back with a 2k count. From there I had platelets given as well as blood, plasma, iron and 2lots of ivig, started on steroids and sent home.
I was tested for pylori and tested positive, treated that twice before I tested all clear, one month later and on 75mg steroids they found a tumor on a para thyroid gland and that my thyroid gland was very enlarged... Removed the parathyroid and thyroid, two months later had treatment for fibroids that was originally bleeding.
I was on steroids for nearly 12 months and the highest my counts went was to the 220 mark after the surgeries, my platelet counts are usually in the low 100 now.
Through a lot of digging up the past the doctors think I may have had itp when I was about three as I was in hospital at that time with bleeding and a cause was never found.
This is not something that I obsess over it is just coming up to the time I found out about the ITP and the thought just crossed my mind after reading some post here about seasons effecting people.
I still drop by now and again to check on people and love reading all the stories and seeing what everyone is up to. I am forever grateful to everyone and try to answer any questions that I see. One episode does not make me the guru though and I do feel for everyone that battle this on a regular basis.
Sandi I do just watch for symptoms but bruises for me are an everyday thing, a paper cut can bleed for half an hour and the first time I got this I had no spots or anything. I feel this will reoccur but when I don't know
Love to all

Milly:

I have bruises all the time too, I chalk it up to thin skin from being on Prednisone for so long. They are just normal bruises though, not the huge black ones that I had with low counts.

I wish you the best and I'm glad to hear that all of your issues seem to be under control. You went through a rough time for a while with the misdiagnosis and wrong meds!

Yeah Sandi the bruises don't really worry me... They have been a life long thing and are never the real black ones just bruises. I guess time will tell, I try to look after me a bit better now, eat well, I walk 30klms every week. Doing all I can and the chips will fall where they fall. I did have a rough couple of years but I learnt heaps and now I seem to focus more on the good parts of life.... ITP taught me to appreciate things a little differently, but if it's ok I would like to just hang around in the back ground here just in case I ever need you guys again

You can hang around as long as you like! Of course it's okay. I missed you.

Hi Milly,
Nice to have you here & I'm glad you're doing so well.
mj

Wow Milly, that was a lot you went through. Glad things are good now. The 3 times I've had ITP it all started in February each time.

Please hang around, you can really help others who are going through a rough time!

Hope we both make it through this February with no problems .

Milly don't you dare stick around in the background! Need you up front & center - I've missed you too!

What will be will be - it was a tetanus booster that sent my count way down 13 years after diagnosis and that's when my son found the PDSA for me, back in 2002. Since then I've been in a "remission" after a WinRho IV - but my count goes up and it goes down. I've now got low immunoglobulin G - guess one thing we learn is to roll with the punches.

You really did have a rough few years - glad you are doing well! And you stay here!

Thanks everyone, I have missed you all as well. I will stick around and I am doing well now, platelets are usually above 100k and that suits me fine. Dru.... We might as well hold each other's hand through February and hope we get through, thank goodness it's a short month.
I will always be thankfull for the friendship I have found here, so thanks everyone of you

A woman wrote me the other day who has ITP. She's had three bouts of it, being in one now. It has been 39 years since her last episode, and yet she just has had this one!

Well if I go 39 years I don't think I will see another one . Maybe this will be the one and only maybe not.... Whatever happens I will handle it when and if it happens. It is so good to hear positive stories though.
I joined this group 4 years ago and have seen so many come and go.... I do wish more people would come back with good stories it sure helps.

Just to add my tuppence worth to this conversation..........
Its really good to hear from people who have recovered, so please stick around Milly! I think you joined the group at about the same time as me - I dont post much anymore about Dougie, because its all the same old same old, he remains fine with very few platelets . Sounds odd, but I really like hearing about people's "boring" lives post ITP.

Yeah Al we both joined around the same time, I think of Dougie a lot. A story you can tell him when he is older, that from the other side of the world a lady took inspiration from him, at times when I felt a bit down in the dumps I would come here and read how he just got on with things.... I told myself if a young boy can handle this so can an old girl
My life is different but so much better, full time work is gone. I only work 30 hours a week (love the shorter hours) life is just different, a new appreciation of people, family and all the good stuff. I am a stronger person and I like that.
I think once you get past that initial shock and the silliness that steroids bring you realise that everything is ok, all things happen for a reason even if we don't know that reason and life goes on, it may be different but that's ok.
I do feel for those hear that battle this non stop... I consider myself very lucky that I have had three years remission and if it ends tomorrow I will deal with that then.

You've come a long way, Milly, both physically and emotionally. I am always amazed to see people come through the other side.