Platelet counts after splenectomy

Hi all,

I just underwent splenectomy a couple of weeks ago and am curious how others who have gotten the surgery (with successful ITP remission or not) have seen their platelet counts fluctuate afterwards.

I had been taking Promacta for 8 years with 45k-160k platelet counts and no major side effects, but in hopes of getting pregnant sometime soon I opted to try splenectomy to see if I could get off the drug (it's not safe in pregant women). I had been told by my doctor beforehand that high count directly after splenectomy indicated success. Happily I had some of the highest counts I'd ever had (in the 180s) directly after surgery, but over the past 2 weeks they've dropped back down to super low levels (12k today). Since Promacta is a relatively new drug, I was wondering if there were many folks out there that had tried splenectomy after Promacta or gone off Promacta for some other reason and saw an intial dip in platelets before recovering. I'm curious if it takes time for the body to ramp up platelet production on it's own, or if my splenectomy has just flat out failed.

Monitoring platelet count weekly in the meantime, but have to go back on the meds for safety.

Thanks for reading and sharing your stories.

When they say a high count is a good sign, they mean super high as in over 400 or 500. But some level off somewhere lower but still at a good safe count. Here's hoping it goes up to somewhere safe.

Zeka I'm just curious what your counts were and what treatments you tried before you went to Promacta?

Really the only thing sure about ITP is that there is nothing sure about ITP!

I really don't understand how it can be said if your count after a splenectomy is high then that indicates success. There are other places in the body besides the spleen that clean the blood. I really hope your count bounces back up to a good level soon!!

MelA,
My counts were 0-10 when I was diagnosed. No ITP symptoms, totally idiopathic.
First went on 50mg prednisone for a couple weeks and initially responded but platelets plummeted after first decrease in dose and then I didn't respond to upping the dose again. I didn't want to do splenectomy or any of the chemo-esque drugs right away in case there was spontaneous remission so I went on Promacta as a "bridge treatment" until I was ready. But it worked so well (45-150k counts) with no side effects that I just stayed on it through grad school and beyond. It wasn't until I started thinking about kids that I considered the other ITP treatments again. I wanted to avoid being on drugs/infusions through pregnancy if possible and the splenectomy outcomes looked a lot better than rituximab. Also wanted to get the surgery "young" if I was ever going to do it to give me the best chance of a good outcome. Of course now I'm second-guessing everything but based on my dr's advice and what I knew at the time I made an reasonable choice. I knew that there was a chance my liver etc. would be able to take on the job of platelet destruction at some point down the line, was just hoping I'd get a reprieve long enough to have some kiddos! At this point I'm hoping for even a limited improvement so I can take lower doses of promacta and maybe be able to span the gap between going off promacta and getting pregnant with a little less risk. Getting counts weekly for now to see what the story is. I don't know yet if I respond to IVIg or if steroids will work again after that first experience years ago.

MelA wrote: I really don't understand how it can be said if your count after a splenectomy is high then that indicates success. There are other places in the body besides the spleen that clean the blood. I really hope your count bounces back up to a good level soon!!

It's because what immediately happens to the count shows which organ was destroying the platelets. So if the count goes really high.. we've seen people here say their count went over 1000.. it indicates that only the spleen was involved in the destruction and so the chance of a remission is good, but of course not certain. If the count doesn't go very high it is more likely that destruction was already being carried out by the liver as well and it will likely carry on doing so. It's not perfect but Sandi used to say she'd observed it time and time again here.

JJ if I remember right - a person in the ITP group that used to meet here went to London for the indium test, it showed spleen was destroying, she came back here & had a splenectomy, her count went up (can't recall how high), then her count tanked and was staying around 5k. As I've said before- the only thing certain about ITP is there is nothing certain about ITP.

And do we know for sure that only one blood cleaning organ is destroying the anti-body coated platelets?

And do we know for sure that only one blood cleaning organ is destroying the anti-body coated platelets?
No Mel we do not because we all have a Reticuloendothelial System (RES) of which the spleen is just one component.
Others include the liver , bone marrow, lymph nodes and lungs which all contain phagocytic cells that do the same job as the spleen i.e. remove antibody coated platelets.
My indium scan showed splenic destruction of my platelets (fascinating to watch) but as no one would give me a cast iron guarantee that my RES would not take over the job of the spleen I refused point blank to part with it. Now Corona virus has joined the world I so am glad I still have it.
It appears that patients are not having the RES explained to them prior to splenectomy. In my opinion this is poor practice as they cannot make a fully informed choice regarding parting with an organ.

Thanks for all of your feedback. Yes indeed, I did understand that there was a real chance that splenectomy wouldn't work (which was why I put it off until after 8 years without remission). We don't have the indium scan as an option here but it does appear from the research I've seen that it gives you a better sense of your odds. No guarantee though. I guess my reason for posting wasn't to understand why splenectomy didn't work right away (clearly my body is destroying platelets in other locations) but to get some insight into the potential trajectories of platelet counts after splenectomy and what they might mean about my immune system and my special flavor of ITP. Since the surgery I have seen posts on the psda facebook with mentions of remission 2 months after splenectomy for example. I'm curious whether they were low and slowly creeped up, started high and then creeped down to a stable point, or something else entirely. Since it doesn't appear to have been a full remission in the cards for me I at least see this as an opportunity to understand my own body more now that I've removed one of the players in my ITP condition. Also on a covid note, I've been told by several docs now that viral immunity remains strong without a spleen. I guess pneumonia could still be a potential concern as a covid complication, but I'll be staying up on my vaccines for that so I'm not super worried about it increasing my susceptibility to coronavirus. Famous last words? I'm knocking on wood . I am not a covid denier or anything and am being very careful every day to avoid exposure and spread. Anyway I really appreciate your time in responding. Thank you