Getting off the treatment merry-go-round?

Hi
I've had ITP for nearly 2.5 years, on my third episode just now, count is about 7. I had big doses of prednisolone for the first two, which got my count up, but wow, the side effects were something else (my hair is only just growing back in after the 2nd lot!). Anyway, relapsed very quickly after the 2nd one, and was on a watch and wait approach for a few weeks while my count was in the 20s, but then it dropped to 4, was 7 a couple of days later. I'm refusing steroids again, so doctors are proposing IVIG next week (on a drip for 5 days as an out-patient) with a view to a fairly imminent splenectomy. While I appreciate they're doing a good job, and being in the UK, I get all this for free, but I'm suddenly feeling very resistant to any treatment at all. Might just be a short-lived emotional thing that I'll get over in time to start treatment on Monday, but I am very reluctant to just give up all control to the medical profession - even whilst writing this, I realise it's very unfair of me to say that about them, but I'm feeling really crappy today and just want to stay at home and hide from it all! Anyone else out there had their stubborn moments? Or had no treatment when their count is in single figures?

Guess my bluff has been called, bed available in hospital for 2 days of IVIG starting this afternoon. Not sure why that scares me less than the 5 day out-patient thing, but logic went out of the window a while ago. Here's hoping I react well and can keep the splenectomy at bay for a while ...

As you are in the UK you could ask to be referred for an indium platelet scan to see where the platelets are being destroyed. If in the spleen then a splenectomy has a good chance of working whereas if in the liver, then no chance. As people here will remind us, it still doesn't make anything definite but it either ups the chances of success or alternatively stops the doctors from keep mentioning it.

Good luck with the IVIG. It's not known for keeping counts up long but there are other things to try. Here's my usual link to the latest guidelines.. bloodjournal.hematologylibrary.org/content/115/2/168.full

My advice - read about all of the treatments and do not be afraid to make suggestions.

Thanks Ann and Sandi, good advice - I have read a lot about ITP recently but I think a bit more is needed to let it all really sink in. The IVIG at the weekend has had some positive effect (count up from 2 to 48 after the first day's treatment) but won't know how high it'll go until I get a test on Wednesday, and then will be monitored to see how quickly it comes down. They did mention the spleen screen, so would get that done before going into a splenectomy, and they also talked about other drugs too, so maybe my allergies (to penicillin etc) are making them rethink the surgery strategy a bit, especially since I can tolerate IVIG (even with loads of pre-meds in case of allergy!).

Will bookmark more of the links from this forum, including Ann's - invaluable to arm yourself with knowledge on this, taking some control as a result even more so!

Great forum, thanks to everyone for sharing their knowledge and stories, it's good to know there are more people like me out there

Rachaely,.
Like you and Ann I live in the UK, and was diagnosed with ITP last May.I have done a lot of relevant reading since then and got a lot of good advice.My story so far is not too different from yours. My count on diagnosis was about the 7 to 10k range when I started on 60mg of prednisolone daily And lansoprazole.
There was no change after 14 days so the steroid was reduced to 30mg before 2 days as an out patient for IVIg. No ill effects from that and my counts went to 230 in 5days before the fairly slow decline set in.Spleen removal was mentioned at this stage but I put it off remembering the supermarket slogan ---when it's gone it's gone.
My pred was reduced gradually and mycophenolate morfetil (CellCept) introduced slowly.That took 4months to kick-in and I am currently on 5mg pred and 2g CellCept daily with a count of about 60k. The sooner I am off the dreaded steroid the better.The main point of my journey so far is to be better informed about the treatments available, to get some control of my life back ,to stop worrying about bruises and to know about ITP that more treatments are being developed all the time.