8 years spleenless! ?Relapse

Hi, im 26 and had my spleen removed 8 years ago. I had my blood taken today because i had a rash on my leg and my platelets are 16
Has anyone else been in this situation? Loz x

Yes, unfortunately, an ITP relapse after splenectomy is fairly common.

It's possible though that after treating, you could get another nice, long remission.

thanks, what kind of treatment is left to try? i had immunosuppressants, steroids and immunoglobulin before all were unsuccessful.

I also relapsed after 9.5 years. Similar scenario, but I'm 58, but I didn't connect the "rash" to ITP for about 4 weeks. And since I still had CBC's every 9 weeks when it showed an usual drop and the "rash" got more expressive the dots started connecting. I contacted my hemo MD and he order another CBC which showed a significant drop and the picture was complete.

I dropped from 300ish to 10 in two weeks. A few weeks of pred was useless (as it was 9.5y years ago with my first serious bout of ITP took me to 0). IVIg was only helpful for about a week, as expected.

Rituxan infusions apparently did the trick for me. BUT it took 9 weeks before any material increase. I bounced between 10-50 and I had given up hope. I was preparing myself for its failure and the "what's next" discussion. I'm now around 270 for 6 of the past 7 weeks so looking good.

A relapse is frustrating after such a long time. I had virtually stopped thinking about ITP issues. The 2nd time around wasn't much easier emotionally than the first. ITP is still a rare disorder without a definitive cause or cure. Trial and error isn't much fun when you get into the low counts with no relief in sight.

All I can suggest is to stay positive, since getting depressed won't change a thing other than making you no fun to be around. It make take weeks to find an Rx that helps - I was a total of 12 weeks before Rituxan kicked in. Realistically for some people nothing works and they live quite well with low counts.

Stay positive and seek support and Q&A via this site often. There's a lot of nice, and very knowledgeable people here who have lived with ITP for years.

Thankyou, thats very helpful because when i had my spleen out they tell you thats a last resort, so when u relapse ur kind of thinking WHAT NEXT. Fingers crossed for you x

Loz - there are some new treatments in the last 8 years. Also, the ones that didn't work before might work now...things change with ITP.

The problem with ITP is that we don't actually know that much about it. Relapse sucks:( Fortunately, my ITP is mild, but it will probably never go away. Good luck.