Splenectomy or not - need suggestions

Hello folks.
My name is Jag and I am from TX . In the early 2014 I was diagnosed with ITP. Just like many others I was prescribed ‘Prednisone’ and it didn’t work out after couple of weeks. So my doctor started suggesting Splenectomy as the best option.
I was reluctant to go with Splenectomy immediately as I read that there were chances that after sometime ITP may just go away on its own. So after discussing with my doctor and friends I decided to delay it. Instead I opted for NPlate – weekly injections. This was working great but it started to get painful due to blood draws. Then my doctor recommended Promacta (25mg tablet, one a day) which I can take it orally at home. This is working well for me with my platelet count around 50-60 and I have no side effect at all.

Since it’s been a year I am wondering if it’s a good idea to continue on this medication as they all come with side effects (in the long term) and now I am thinking if I should go for splenectomy.

If you or someone you know was in a similar situation like me, I would like understand:
1. Is it a better option to go for splenectomy or just wait for few more months on Promacta. Any benefits in doing so?
2. Did splenectomy help you or you ended up again on these medications?
3. I read about Indium labeled platelet spleen scan (done in UK). Do you recommend it before going for splenectomy. Can anyone provide me with the approx. cost of this.

Please let me know if you need any more details. Looking forward to your suggestions, appreciate your help

Cheers,
Jag.

I am very new to ITP, but if the promacta is working I am not sure why you would opt to have your spleen removed. It might not work, surgery has risks of complications and there are risks in having no spleen but that is a decision only you can make. I had the indium scan in april and wrote a detailed report. Look for that thread and if you still have questions let me know.

Keep your spleen..there is absolutely no guarantee having it removed will 'cure' ITP..Have a look at this
emedicine.medscape.com/article/202158-treatment#d8

Jag:

Articles have been reporting remissions from the TPO's after a period of time. It might be worth it to stick with Promacta which is working for you rather than going for a more drastic approach which may not.

The splenectomy option is always there if Promacta stops working or you begin to have adverse effects.

Jag - one thought. Blood draws are much easier if they use a butterfly needle. If they are not using one, you can ask for it.

Emily,
Thank you so much for sharing details about your Indium Scan. If you don't mind can I ask you a question? Based on your scanning results, did you get the splenectomy done or you are still continuing on some medication.
Also, do you know in addition to Barts which other hospitals offer the Indium Scanning in UK.

Thanks.
Jag.

I know the indium scan is offered in Manchester and Plymouth, not sure if there are others. If you're considering it you might want to check with the hospitals first to see how they do it. I found this leaflet from Plymouth and it seems to take far more days than at Barts. Also I heard that Manchester takes 5 or 6 days too. I had it at Barts over just 3 days.

www.plymouthhospitals.nhs.uk/ourservices/clinicaldepartments/nuclearmedicine/Documents/Your_platelet_study.pdf

They also tell you to avoid contact with children afterwards in this leaflet, I was told at Barts that that wasn't necessary. So that's a bit odd.

Edit: Apparently they also do it in Aberdeen, Scotland.

Jag,
I did not have my spleen out. I am 51 and was diagnosed in January 2015. I would prefer to see if I can find some other treatment before I would have my otherwise healthy spleen removed. My understanding is the older you are (from 40 onwards), the less successful the spleenectomy would be. I am also concerned about missing alot of work for the recovery. I own my own business which would make it difficult to be out for any length of time. The scan was painless, other than the normal blood draws. I would never consider a spleenectomy without the scan, although I understand not everyone can afford to go to England to have it done! Best of luck with your decision. I just started promacta and am hopeful for a good response.
Emily

Jag..my indium scan was in Leicester over 2 days

Ah Leicester too, that's good. Seems to be being done in more and more places.

So yours took just 2 days. I read somewhere that it looks as though it can be done far more quickly than some places do it. That would bring the cost down for sure.

Jag, you might want to check out the film that Sandi posted today on General.

I had a splenectomy in 2004, at age 63, and it didn't work. If I knew then, what I know now, I would not have opted for the splenectomy. I have not suffered, to my knowledge, any bad effects from the splenectomy, but it does raise the risk for problems. To counteract those problems, I work hard to stay physically active and maintain a healthy weight.

I have been lucky thus far though. I've controlled my ITP quite well with relatively small doses of prednisone since 2000, so I'm not tempted to try N-Plate or Promacta.

You've not had ITP very long. I'd advise you not to make any quick decisions about treatment. Good luck.