Dexamethasone vs. azathioprine?

The splenectomy debate continues, and my doctor's investigating the procedure for my getting an indium scan at St Barts in London prior to proceeding any further with that (which is good news) - but she is still pretty worried about my count being so low (currently . So, given that romiplostin and eltrombopag are typically only considered if you've either failed splenectomy or are not a candidate for it, she's talking about azathioprine or dexamethasone to try to get my count up. I've been reading up about these, and have to say that the risks and side-effects of azathioprine are pretty scary - the ones for dexamethasone sound like they're a concentrated version of pred, which I've had 2 courses of before, with some success (but obviously not long term!). Rituximab has been mentioned before but not recently so I'll just focus on these 2 options at the moment ...

So, am curious to see what experiences anyone else has had on these ... am currently not treating at all as I'm not bleeding, just bruising a fair bit, and I'm still getting over the IVIg from a month ago (main thing being that I've got patches of eczema which I've never had before) and the week's course of H pylori eradication that only finsihed last week, and caused a few little side-effects of its own. So, I want to give my body a rest for a while and get some kind of feeling of what is my new normal, so I can make a decision on what treatment (if any) to get ... your thoughts would be much appreciated!

I have been taking azathioprine for a few years now, not for my ITP (which is in remission after a splenectomy),
but for psoriasis. I take 100 mg/day. It has caused no problems at all. It might be worth a try,
although it is not frequently used for ITP.

Rachaely - Romiplostin and Eltrombopag can be used if a person has not had a splenectomy. Quite a few people have done it. Where is that coming from?

Azathioprine may take a while to get counts up. Dex most likely will get them up fast but they will probably also drop quickly once you stop the drug. Good luck with that decision!

Hi Sandi - yeah, have seen that many people have had romiplostin or eltrombopag without splenectomy, but my doctor discovered last week that the policy for this NHS trust is that they are usually only prescribed for people who have either failed splenectomy or who are not candidates for it. So, if the indium scan says that my platelet destruction is wholly or mostly hepatic, i.e. there's no point taking my spleen out, then I have a better chance of having these prescribed. It's not guaranteed even then though ...

Still not decided about dex vs Imuran - I know the side effects of the former are horrible (i.e. concentrated version of the pred treatments I've had) but the ones for Imuran could be way worse for me and at least I know what the dex might do ... really don't want any treatment at all but I realise that there is only so long I can get away with a count as low as this - am very clumsy and always walking into things, scratching myself during gardening etc so it's only a matter of time before I do something serious! May try to hold out for a few more weeks to see if the H pylori eradication has any impact on the platelets, but mainly to get all the drugs out of my system

Sandi wrote: Rachaely - Romiplostin and Eltrombopag can be used if a person has not had a splenectomy. Quite a few people have done it. Where is that coming from?

Interestingly, the European licence for these drugs is for it to be used for those for whom splenectomy has failed or is contra-indicated, but NICE in England and Wales has gone against this for romiplostim and recommends it for any severe case of ITP. Eltrombopag is not recommended by them at all. In Scotland, where Rachael is, both are available as per the European licence.

I always assume everyone is in the US. Got to stop doing that! Sorry Rachaely. Thanks for setting me straight, Ann.

I'm glad you are going for the Indium.

Spoke with doc today, included my concerns over the side-effects of the two drugs we're considering, and once my IVIg-induced eczema has cleared up, and I think my system's clear of all recent treatments, then I'll start on a low dose of azathioprine (50mg) to test my tolerance of it out. Can then ramp it up to see if I get a platelet response, as I'll need considerably more for the indium scan than the lonely few I currently have circulating forlornly around my bloodstream!

What is the minimum count needed for the indium scan?
Erica

I'm not sure, but I recall seeing on another forum that it should be at least 30 - they take some blood, isolate the platelets, tag them with radioactive indium and then put them back in for the scan, so I guess that if you don't have enough platelets, they can't do it.

Just found out my count today is 6, so I've got some serious increasing to do!

When I had the indium test the count had to be between 5 and 100. It may have changed as that was a few years ago now. Also you should know that it isn't always possible to do it as the indium doesn't always 'stick' to the platelets. Cameron who has posted here, travelled from Scotland to London twice for the test and both times it failed. He had very low counts all the time and was just living with low counts without treatment last I heard.

Thanks Ann - good to know that in advance ... if the test doesn't work, then I'll not be having a splenectomy for sure, as I'll only entertain it if my platelet sequestration is fully or mainly in the spleen - and if we can't find that out, then surgery is off the list of options for me ... well, as far as I'm concerned, anyway! May mean I don't get the romoplostin etc for the policy reasons described above, but then I don't have a major issue with living with low counts if everything has failed anyway. Still a few things to try before I get to that point though, so here's hoping something works at some stage.