New to forum - after splenectomy questions

Hi folks

I am new here, I have been reading the website a lot as my partner (who is 34) was diagnosed 9 weeks ago with ITP. It has been a bit of a roller coaster, with failure of response to steroids, Ivg, slight response to n-plate for one week, then no response. A week and a half ago he had a splenectomy after he had a bleed on his retina, and immediately afterwards his count was 13, then 26, then 39, then 68.... that was last thursday (the op was on monday). This Monday, a week after the op, they had dropped back to 38, and on Tuesday they were down to 15. I am absolutely gutted and convinced this means it has failed - does anyone have any info on their counts after the op? I know that they give it 6 weeks of monitoring before deciding whether it has worked or not but I feel really negative about it. And if it doesn't work it will just be back to the drugs that haven't worked already. It is pretty hard as we have a 6 month old and a 4 year old, and his sick pay is going to run out soon.

Anyway.

Any thoughts would be much appreciated

All the best

L

It sounds as though the splenectomy has failed. How long was he on Nplate for? It took me several months to get totally stable on it, increasing the amount when my count fell and then finally getting stable. It isn't a quick one week result thing.

He was on it for 4 weeks after 3 weeks of steroids not working. Platelet counts was always pretty much between 1 and 5 but briefly went up to 15 after 2nd n-plate injection.

Gutted if it has failed.

Hi Laura, welcome.

It is normal for platelets to fluctuate a bit after a splenectomy. Mine worked for about a month before I was back in the same boat I was before it. He was only diagnosed 9 weeks ago? I think that was way too soon to have a splenectomy. Sometimes it can go away on its own. Has Rituxan been mentioned at all? That is a once a week for 4 weeks treatment. It's what put me into remission. Other than the bleed on his retina, did he have any other serious bleeding?

Give it time, his counts could still go up. Good luck and keep us posted on how he is making out.

Thanks so much for your reply.

He had bleeding in his gut for the first 5 weeks which resulted in him being hospitalised for over two weeks and needing several transfusions as he kept getting anaemic - but other than they eye nothing else significant, and that should clear up too. he was totally black and blue for the first 6 weeks, but now has no external bruising at the moment either. Just tired and a bit breathless. The retina was probably due to a horrible cough that he picked up while being run down.

I wish had asked more before the splenectomy now - but the consultants were very confident that it was the right thing to try.

L

It sounds as if he hasn't tried the Nplate for long enough. There are 10 doses to try and you are supposed to go up to the next dose each week until you get a response. It is usual to get a response one week and then on the same dose for the count to fall again, so the dose is raised and so on until you get stable.

But as Cindy says there's rituximab to try, or several other drugs.

Not sure if this helps but I got my spleen out in 2004 then in 2006 had a 3 year remission font know if it was related but it came back in 2010 full force unfortunately splenectomys are not guaranteed it really sucks but you will get through it patience is key in itp
If you don't have any you'll drive yourself nuts found that out the hard way

Yes, a lot of doctors are confident that splenectomy is the right thing to do. That is a treatment that has recently become a possible thing of the past, but the news hasn't trickled down yet.

I can't stop pushing this video on people, I think it's excellent. Try to watch it if you have time.

fhs.mcmaster.ca/medicine/hematology/ITP-2010/player.html

I had the surgery in March with no effect at all on my count. Did the whole spectrum of treatment so far and the only thing that has helped is the N/plate.

Well count on Monday was 5, so pretty sure it looks like it hasn't worked. Back on the N-plate now and being referred to the Dr who hosted the lecture that Sandi posted - very informative,m thanks. Really wishing that I had come on here before the splenectomy and had some more info then. Anyway. I think we are a bit more relaxed about it now - as so many have said we are in this for the long term so better relax or we will go mad. Thanks for all your posts.

Lx

Oh good. Drew is my doctor too. He's a really nice guy and has a lot of experience with Nplate.

You will be seeing the best!