To treat or not to treat....?

Hi everyone, I confess I haven't been here for a few years but here's a little of my back story. I was diagnosed 1982 and had my spleen removed in 1984 with limited success. It did make my platelets even out and I stopped having 4 hour nosebleeds quite as much! I learned to live with my count between 40-70 with a relapse here and there and treatment of prednisolone. Fast forward to pregnancy 1 and my count wouldn't stay above 10. I opted for I if throughout my pregnancy as I a) couldn't face being on Steriods for 9 months and I was nervous at how the Steriods might affect the baby although I realise now that these fears were unfounded. I went on to have a twin pregnancy which again affects my counts.

So now I seem to be relapsing constantly. My count will dip to 3/4 I get blood blisters on my mouth, petichae all over my body, if I have my period it's like I'm haemorrhaging, bleeding from my back passage etc I wil go on 60mg for a few days and start reducing fairly quickly but this past year I'm just done with the tapering and then it flares up again.

I've tried eltromobag/ revolade briefly but because my count can be up at 70 on its own even low doses of this weren't suitable for me. I have heard of people that don't treat and just wait for platelets to go back up themselves which I'm sure mine probably would.

I'm just worried that I'm being irresponsible? I'm totally wiped out today and I'll admit I'm feeling pretty sorry for myself. My partner is offshore and I don't have any energy to deal with my 3 kids. I also went back to work in August as a teacher so pressure to perform well there too. I just want to curl up in a ball and sleep. I also realise that if I take some Steriods my energy level will be through the roof by the weekend..... Should I sit it out?

That\'s a difficult one...Personally if my count was 70 I\'d do nothing. The thought of going back on high dose steroids makes my blood run cold.

I manage fine when my count is 40- 70 but this past year whenever I get ill my count drops to 3 or 4 which is when I go on the high dose of Steriods. I've had this happen maybe 8 or 9 times this past year. I've never not taken the Steriods but I have heard of people watching and waiting with a count of 1 or 2...
I suspect that as I get over whatever bug I've got my count will go back up. I'm just not sure if this is risky or not...

Many people choose to watch and wait and it's not irresponsible. Having blood blisters or long nose bleeds is a sign that you should probably treat though. Do you respond to low doses of steroids? If so, you could try some low dose, short term treatments until counts rebound.

Luckily I do respond really well to Steriods and my count will go from 3 to 150 in 7-10 days and then drop again settling in my normal range of 40-70.

It's just that I've been on the Steriods since November and only just finished the last taper 2 weeks ago. I honestly can't face taking another round of them.

I just want a few steroid free months so I can recover from all the horrendous side effects that seem to be getting worse the older I get.

I suppose I'm just wondering at what point does it become irresponsible to keep watching and waiting? My symptoms just now are that my body is covered in petichae and I have half a dozen blood blisters in my mouth. I haven't been for a count but usually when I get blood blisters in my mouth it normally indicates a count of 3 or 4 for me. Do I just start worrying if I start bleeding? I've never done the watching and waiting below 10 and different Drs have different ideas about 'danger' levels. I used to know my body but since the last pregnancy I don't know what's going on anymore

What I'm saying is that you could try a quick, low dose steroid round. Like 20, 20, 15, 15, 10, 10, 5, 5....done. That might bump your counts up enough out of the danger zone and you wouldn't have months of side effects. There is no way I'd want to do months of steroids (been there, done that) if a small dose might get you where you need to be.

I've been on 15 mg's constantly for 10 years. I am having long-term side effects now, but not the annoying, life-altering short-term side effects.

Thanks sandi, it can't hurt to give that a go. I have a vague recollection of trying this before but can't remember now why the doc started putting me on a higher dose for longer.

I'm finding it all very depressing to keep having relapses so frequently one after another but I don't suppose the constant Steriods is helping my emotional state!

If it's happening because you keep getting sick, you should look into why you keep getting sick.

You are allowed to have input when you treat.