Any experience with crash 9.5 years post spleen

2001 admitted to hospital and within 2-3 days platlet count was 0. Non responsive to all protocols (pred, winthro) so eventual spleenectomy. For the past 9.5 y CBC's generally in 300 range until today. I experienced symptoms for past 3-4 weeks but in past 4-5 lots of brusing.

Today CBC was 50, the lowest since I gave up my spleen. MD tomorrow and we'll see. Treatments look to be same today as in 2001

Wondering if anyone has or know of similiar experience post spleen?

Steve - it's fairly common for a splenectomy to fail at some point. The initial success rate is quoted at 60 to 80%, with that number falling as the years go by.

There is a new treatment called N-Plate that is a weekly maintenance drug. It boosts platelet production instead of targeting destruction. It works well for many people. Rituxan was around in 2001, but wasn't used often. Have you tried that?

You might be more responsive to treatments now than you were before, and could achieve another remission.

There is a chance that it's one of the annomoly's we all see once in a while. My cousin recently chose the spleenectomy route and dropped significantly with a bad cold, as soon as it cleared up and she was off antiboitics, her count came back. Every once in a while, we have someone post who has an accessory spleen that has grow large enough to take over again.

If you can hold in the 50K range, then you may have some time to look at all the options. Sorry you had such a bad day, even if you suspected it from the symptoms.

Where did my "quick reply" go?? Hmmmm repeating my thanks again. You calmed my overeaction with your reply. Due to my original ITP where I presented with 1K and got to 0 within a day or two, I was misinterpreting my 50 as "50" vs 50K (and I understand the difference). Now I know why my hemo MD didn't want to see me immediately. Coincidently have a MD appt today and obviously this will now be my main topic. Certainly another CBC to confirm count and monitor direction but 50K I can live with.

Thanks for helping all of us deal with the uncertainty and fear of ITP.

Hmmmm. Now you have me confused. 1k and 0 are pretty much the same thing. The margin of error with platelet counts is 5, so anything under that is basically the same thing. Counts fluctuate constantly too, so it's normal to see counts differ from one CBC to the next, even if they are only a few minutes apart.

Also, 50 and 50k are the same thing. They both mean 50,000 in the platelet world.

I think I know what happened to your "quick reply". You probably hit that instead of "submit" and it disappeared. I do that all the time too.

Sorry to confuse you re counts, I shouldn't rely upon memory, especially during this stressful period. Went back to my diary and my count day before admin was 24, the next day was 3K. days 2,3 &4 were 3K and day 5 was 0 per MD verbal. So the 3K to 0 is hard to explain but the 0 was pretty clear.

Mentally and emotionally much better tonight. Rather overwhelmed the past two days. It took 5y post spleen before I sorta stopped worry every week re CBC results. Last 5y really didn't think about it as consistent monthly CBC 300ish. I sort of ignored symptoms until I couldn't hide from it any more but wasn't prepared for 50K - but that's clearly liveable.

On good ole pred plan for next 4 months - didn't work last time @ 1000mg so not likely to do much good this time imho and IVIg was only temp, 7 treatments of winrho didn't even register but hey who knows? Back to weekly CBC and we'll see what happens.

Had a spiritual breakthrought this PM cuz emotionally I was hiding from my wife and myself. Now I'm comfortable with whatever happens, but doesn't mean try options and will be praying for good counts again! Won't see my ole vampire MD until two weeks but the two weekly CBC's before then will tell me the story before then.

Will need to decide soon regarding 3 week vac trip to Northern NY State from GA scheduled in 2 weeks. Big trip with 4 grandkids, daugher and wife and camping in our family cabin on the river but... It's all in God's hands and the CBC.

Blessing to you and all you do. I spent a lot of time here in 2001. The pred kept me wide awake needing only 2-3 h of sleep/night (even with Benydril). I left because it seemed to be mainly opponents of Rx and surgery for the natural route - hope it's more diverse now - with 0 I just didn't have much choice. I'll be checking it out to see.

I'm curious why the rush to pred immediately at 50K. Most of us and the experienced hemos don't treat until we're under 30K and many 20K. It's definitely good to have a plan, so you are ready to execute it, but unless you have bleeding symptoms or the CBC's are telling a story of rapid drops you have time to work through the options to developing the plan.

If you can hold in the 50K or above range, most of us would definitely say keep the vacation plans. You might make arrangements for a count while your away if you're uncomfortable going that long without checking. That was my "normal" for 15 years and I'd be dancing with joy if I could keep a stable count in that range now.

Do you think from 225 to 50 in 4 weeks is drastic? I don't know cycles and changes but previous changes were generally steady with change of < 25 +/-.

Sorry, from your original post, I made the assumption that you were only doing counts every 3-6 months. Yes, 225 to 50 in 4 weeks is concerning. I'm not a medical professional, and you know your own body, so you and your physician should always make the calls that are comfortable to both of you. Those of us with ITP are always more concerned when we see large changes, but I try to remember that for "normal" people is not out of the ordinary to see changes of 30K in a single day and unless I'm below 20-30K or bleeding I try to take it stride, because next weeks count may improve.

Tomorrow will be another BIG day, but seems each CBC is now a BIG day. Tuesday count 27 so down 23 in 7 days. Don't want to want til next week to find 0 again - been there done that 10y ago. Early Fri I'll test in case < 20 and hospital admit required and avoid the late PM scramble.

Got today's CBC and dropped from 27K on Tues to 18K Fri AM. Wondering what Doc will do now?

Doc says stay the course which for now is prednisone. I'll do another CBC Tuesday AM and see him Wed PM and he'll "pull it all together" for me. Waiting is the hardest part. I know there aren't any absolute Rx paths but I really didn't want to hit 0 again as I did 10y ago.

Dear Lord, calm me, sustain me, guide me - Amen.

What dose of prednisone did doctor prescribe? Is this the same doctor you had before? Karen R

I'm on the usual dose for prednisone/weight which puts me @ 100mg/day. I'm only in my second week of protocol so I'm currently taking 95mg. I don't remember being impacted so strongly last time (2001) and they even did 1000mg pulse when I counted zero. Irritable, headache, restless... all that fun stuff! :woohoo:

Yes, my MD is the same as 2001. I'm in an HMO and while there are other MDs, I felt comfortable with him then and I know they share and backup each other so I really have multiple Hemo MDs. He doesn't have much visible bedside manner so I hope he makes up for it with skill and knowledge, but then given the limited treatment protocols I'm not sure how much skill is necessary?

I'm sorry your spleenectomy didn't work - I know I was blessed that for me it did remove the problem point for 10y.

In 2001 I didn't have any awareness, warning or knowledge. Annual physical one day, hospitalized that night @ 3 and dropped to 0 by day 4. Unresponsive to the various protocols and after 2 months elected spleenectomy. This time my routine CBC provided some warning but dropped from 215 to 50 in 4 weeks (during which I started bruising), down to 27 in another week and now @ 18 in another week. Apparently when I fall, I fall fast.