Spleen removal and and counts

Hello everyone,
I have a question for anyone that has had ITP for a while. I Had bloodwork done in Sept 2010 (before DX) and platelets were 210000. In Nov I tore a calf muscle and Dr told me to take Aleve/asprin and I was on a a BP med that can cause low platelets and I was taking an antibiotic for a UTI. Lots going on LOL. ANYWAY...I started bruising in Dec and Jan is when I got back a low count. I have been on steroids since Jan 26th and now I am about to taper off. My counts are 180000.
My first question is this, I know that most adults are chronic but is it possible for an adult to have an acute attack. Especially since my counts were good just 2 months prior and all other bloodwork is fine?
My second question is: My hema mentioned spleen removal the other day if I relapse. First of all I have only been treated the past 3 weeks and second is it not really soon to be mentioning spleen removal? I mean with prednisone my counts are normal and I just think that after only 3 weeks that spleen removal should not be even thought about yet.
What are your thoughts on my two questions? And I so appreciate this forum it has given me more information than my dr has been able to give. He is good, dont get me wrong it is just he will not stick his neck out and say anything specific hardly ever. I know that is to save himself but still....
SHannon

Shannon,

I have had ITP for four years and each time I have low counts my physician also states that a splenectomy (spleen removal) may be necessary. Each time I have been treated with Prednisone (Blah!)and have had one course of IVIG. Each time my platelets go up, then I stablize and only have to be monitored. I know what signs to watch for, the bruising and the petichiae rash and have sought treatment quickly. I've never had a bleeding incident at all, but every case is different and every case is an individual one. I have fought splenectomy from the beginning, perhaps because I have had surgeries in the past that took me forever to recover from. From what I understand, a splenectomy only has a 60% sucess rate and that it is merely another form of treatment for ITP, not a cure. In other words, you could have your spleen removed, and still end up with low platelet counts. The "sucess rate" for that surgery goes down when you get to be over 40 years of age. You would also be more likely to succumb to illness as the spleen helps the body fight off infections. Can you live without a spleen, yes. Will you be slightly immunosuppressed afterwards and still have ITP. Possibly. You could be fine for a while, you may respond beautifully to the proceedure and never have another ITP flare up, or you could be in the same boat again without your spleen. No one knows for sure, that is the pros and cons of it. Read about the Indium study, only done in England, on the PDSA website for more information. It may provide some information to see if a splenectomy might benefit you.

I hope this helps!

Kathy

Hi Shannon,

Yes it is possible for adults to have acute episodes of ITP. I am one of those that suffer from acute episodes of ITP. I have had a total of 5 episodes and each case, my hema says is acute. I get treated with steroids for a few months (usually 3 months) and that seems to "reset" my immune system and I can be off steroids or any treatment with normal platelets until my next acute episode. Steroid treatment is not an overnight magic pill though so it will take a looooot of patience. The first month, my platelets usually bounce up and down and then they stablize around 5-8 weeks. Then when my hema and I are happy with it and think it has stablize, I taper very slowly.

Since you have been treated for only a few weeks, I say hang in there and stick with steroids if they are working. A lot of hematologists will mention splenectomy as a possible next treatment, mine did too but since we found that I have responded to steroids, she has always gone the steroids route for treatment for me first.

Keep us posted and I hope you will be one of those that have acute episodes :laugh: but as my hema always tells me, if it is not acute, she still has lots of tricks up her sleeve and the goal really is to achieve safe platelet counts

Pawee

Shannon:

Quick and to the point:

Yes, adults can have acute ITP. I've known of three people personally who did, and there have been many on this board who were acute.

In my opinion, it is waaaaay too soon to discuss splenectomy. I consider that a "when all else fails" route to take. It's just another treatment and an invasive and drastic one at that.

Sandi, I agree with you!! Waaaayyyy too soon to talk spleenectomy. I just wanted to hear it form someone else. I just looked at him like he was crazy I am sure since I am on steroids anyway and everything.tends to sound a little crazy to me right now LOL

I told him no thank you and that I will wait and see what my platelets do the next several weeks and months.

I am glad to know there are some adult acute cases. You do not see that much on the internet about it and the Dr really will not even give it a thought even though he has not a clue what my platelets will be doing a week from now. I know they are the dr and I am not but If He has no more clue than I do except stats then I could be in the acute group or chronic. But this dr I think kinda puts all ITP patients in the chronic group. But anyway enough of my venting...

Thank you Sandi again for just confirming what I thought...
Shannon

Shannon:

He is the doctor but it's your body. You have a right to decide what goes on with it.

I want to jump on the It's your body thought from Sandi. I to think many MD's simply react to the counts because they have no more insight than we do. Medical knowledge, imo is simply to weak or non existent to allow much more than that. They do have access to a collective and scientific body of knowledge that we don't and wouldn't understand if we did.

I believe the collective knowledge of experiences of people here is significant and should empower each of us to be active in our treatments. Unfortunately not all docs share that point of view and it can be difficult for some of us (me included) to stand against an assertive MD. But if they're only assertive and not willing to allow discussion what are the afraid of? Can they not accept we have questions or are they to busy with their other patients to allow us time? Or perhaps it's because they can't admit they have so little knowledge of ITP?

Wow - where did this rant come from - think I'll go and play with the grandkids

I have fired at least 4 doctors in the past ten years for not doing it my way. Including my son's ITP doctor. When it comes to family healthcare, I appreciate and consider all of their expertise, and then it's my way or the highway. If you can't stand up to a hemo pushing something as drastic as a splenectomy at this point in your care, find someone who can go with you and do it for you. We had one guy totally do what we wanted because he didn't want to lose the money. And we weren't asking for the moon.

Chronic - acute. Never heard either of those words in the almost 22 years I've had ITP.

As to splenectomy - as Sandi said it is our body and we should do with it what we want.
I never considered a splenectomy because I was never given a positive "it will cure you". My brother in law the surgeon told me I should have my spleen removed - as my sister in law said, it is a surgeon's job to remove an offending organ so of course he would want it removed. Now in a case of life or death of course I would have it removed.

Kichter wrote: Read about the Indium study, only done in England, on the PDSA website for more information. It may provide some information to see if a splenectomy might benefit you.

Kathy we had a small group of ITPers in town that would meet every few months - unfortunately that has gone by the wayside - one of the ladies did that study and it "said" a splenectomy was right for her. She came back here, had a splenectomy, did fine for a while and then her count dropped back to the thousands.

Melinda wrote: Chronic - acute. Never heard either of those words in the almost 22 years I've had ITP.

Melinda, you're scaring me! Those words are used alllll the time here. Do you mean not heard from your doctors?