Is it time to have spleen removed?

When do you know it's time for a splenectomy? I'm a 55 year old man under treatment for four years and only thing I can take that works is IVIG. It works for 6-7 weeks before counts fall under 15K. Having spleen removed is only other option left and while I've had no problems with IVIG and time and cost is not a problem, I do know the longer I wait for surgery, risks increase. So I have been thinking the time is coming - part of me feels like I have to try it. I would love even 4-5 years without treatment but worry some about short and long term risks (even if small) of surgery. But what is worse as you get older - continuing IVIG indefinitely or having splenectomy? Seems like it is worth a try. Any thoughts, advice, or experience would be appreciated. Thanks.

Have you tried N-Plate or Promacta?

I would not want to do IVIG on a long-term basis either.

What risks are there from waiting to have a splenectomy? I don't know of any.

I've had two hematologists recommend not taking these drugs because of an existing MGUS condition (potential precursor to multiple myeloma). With that said, and with the conventional idea that IVIG is not a long term drug, then there's no choice but to have splenectomy. I've read studies that older people have a higher risk of complications, but suppose that's true of any surgery.

Well, I guess it's time to consider splenectomy when you are out of options or when you are tired of the treatments. Tough decision. If it doesn't work, I guess you go back to IVIG.

Have you tried Rituxan?

I was older than you when I had a splenectomy. It didn't work, but I had no complications. (The laproscopic version is relatively easy compared to most surgeries.)

I think the remission rate for splenectomies worsens with age.

ca2al11

I agree that the dangers of waiting are that surgery gets riskier as one ages and the chances of a successful splenectomy worsens as one older (although I would look at that paper again- this insight gets repeated a lot but I vaguely recall the original study was based not on a large data set).

You asked for folk's experience. I maintained platelets around 20 -30 w daily prednisone for about 10 years - and never wanted the surgery- seemed easier to take a pill. I also ignored the side effects of prednisone to my detriment. In retrospect they were kinda big (weight gain, diabetes), but I think I was like the proverbial frog in the pot of water that gets warmer and warmer...


THen, one day my numbers plummeted to zero , and nothing, including IVIG, and, it seemed, Nplate, would help. Finally I did respond to repeated and doubling doses of Nplate. I decided to use the higher numbers for a safer splenectomy- and have been in remission since. This coming Nov will be 2 years - a few weeks ago my numbers were in the 300s.

I've been off prednisone all that time and my diabetes has reversed. If my ITP "comes back" I'll use Nplate as a backup. I had the surgery about a month after my 52nd birthday.

There are risks to being asplenic, but, for me, I consider them less than the alternatives.

I wish you the best of luck making your decision -
Mark

Yes, had two separate rounds of Rituxan a year apart with no response.

Totally your decision but I think its worth a shot. I had a splenectomy 9 years ago at 17 it didnt work for me but I know it has worked for alot of people. Worse case scenario it doesnt work and you dont have a spleen best case scenario you go into remission.

Good luck
Keli