Accepting ITP

[Pollyangel]

I'm receiving treatment for my second episode of ITP... and I'm just starting to come to terms with the prospect of living with ITP and all the unknowns that come with it...

[Ltinny]

Greetings,

Rest assured you are not alone, we are all here for support. The unknowns are difficult, but coming to terms is a very positive step. I have had ITP related to my lupus for probably about 10 years. No treatment so far, but the fluctuation in platelets is unsettling. What treatment are you receiving, and how is it working out for you?

We are always here, so feel free to chat

[Pollyangel in reply to Ltinny]

This is my second episode... I've been advised it's viral related.

I'm currently just on Eltrombopag (Revolade)... I didn't react well to steriods or immune system suppressants last year when I had my first episode.

It's been hard getting my head around how dibilitating having low platlets can be.

It's also been harder to come to terms with the fact that it might come back.

I'm glad I've found this group... I found I've not reacted to ITP or medication the way my consultant has expected... it's difficult to digest when there are no certain answers x

[sailor]

HI POLLYANGEL. We all react differently to having ITP. I have been through most drugs and was on Ivig for 10 years. Then came off everything. Count plummeted to 10 and stayed there for the next 10 years or so. No problems, I was lucky not to bleed. Had heart bypass 2 years ago. Put on Revolade to get the count up and it worked well then came off after the op. Count reverted but over the time since, count has steadily risen and now at 63. Still no meds.

Like you, my ITP was viral related over 20 years ago. The only thing I can say is, it is not terminal so get on with your life, accept the low count, work around the effects of ITP and don't let it rule your life and maybe revolade will do to you what it has done to me.

[Pollyangel in reply to sailor]

Thank you Sailor.. it's good to hear the experience of others.

[scaryteacher]

Like Sailor, I've had this for 20 years...mine was triggered when I was pregnant. I managed to teach full time in secondary education with it, whilst my husband worked abroad, and I had a child to deal with as well, so it is manageable. I don't have any meds for it, and my count is now between 25-45, has been in the high 30s for my last three tests, down from the 60-80k it was when I was first diagnosed.

Enjoy the good days and don't be hard on yourself on the bad ones.

[NickyD]

Hi Pollyangel. I have had seven different treatments over the years. My lowest count was zero and my highest well over 1,000. One week on the Monday my count was 3 and on the Friday it was 965. Dont look for logic. You can only listen to your body and work within your limitations. be kind to yourself and dont expect things to turn out how you want them to turn out. You just have to be patient and work with what you have. We will help all we can to give you support. A lot of people care. NickyD

[crazydoglady]

Hi pollyangel, I am in a similar situation to you, this is my second episode of itp. I was in remission for 18 years and had more or less forgotten all about itp. I honestly believed that it had gone away forever.I think the fact that it can come back unexpectedly is what I find hardest to deal with. However, things do seem to have improved since last time. More doctors and even some dentists seem to have heard of itp now, there are more treatment options and the hematologists explain things more. Also, there is this great site where we can talk to each other, compare experiences and offer support and advice to fellow itp sufferers.itp is so rare and most people have never heard of it, so we need to stick together!

Good luck and keep in touch.

I

[Pollyangel]

Oh jeez... I feel for you... what a break to have only for it to come back...

But... you're right... this site is great... and I've learned more over the last month from here than I have over the last 2 years...

Pauline x