Spleen removal fail

Two months ago I found out I had ITP with my platelet level at ZERO. I took Prednisone for couple days and had Rhutuximab and IVIG treatments.. Was taking off the Prednisone cold turkey stop at one time from 100mg a day to 0 at once. My levels nver held from the treatment and kept fallin, My spleen was taking out 5 weeks ago. And this past week the Dr told me it didnt help as they thought it would, My platelets are back at 8,000. I had a treatment last week and gonna do 3 more rounds just as i did before the surgery... Stiil not on any home meds and my platelets wont build up and be stable... Any suggestions as to what I need to do or consider at this point...

My first thought is that you need to find a haematologist who is experienced with treating ITP.

To be given steroids for such a short time and believe that three days is enough to say it doesn't work is ridiculous. Protocol says to try it for 4 to 6 weeks before giving up. To come off 'cold turkey' after such a short time is fine by the way.

There are other treatments to try so don't worry. I wouldn't bother doing more rituxan. I'd just find a doctor who will work with you and try something else. We've all had low counts like yours too so don't feel so alone, I had a count of 8 earlier this year myself even though I'm usually pretty stable on Nplate.

Here in the netherlands theyre not allowed to remove the spleen for 6 months after being diagnosed. Maybe finding a doctor with ITP experience is a good idea.

Ive had ITP for almost 6 weeks now and the only medication that has helped is Nplate.

I'm confused about your time frame. You were diagnosed two months ago, and five weeks ago you had your spleen out... so you had your spleen removed 3 weeks after being diagnosed? Is that correct?

I think it is slightly odd that you cycled through treatments so quickly. Personally, I was on prednisone for over six months -- even though we learned that it wasn't working for my within the first two weeks. My Hemo wanted me to taper off very slowly, due to the negative effects that can happen if you stop too quickly. With Rituxin, which is why I am in remission, you shouldn't be able to tell whether or not it works after a short period of time. My Hemo repeatedly told me it would take several weeks to determine whether or not the Rituxin was successful.

You might consider Dexamethasone. That was another steroid I was on. That is a very common treatment option as well.

I agree with the others, though. You should seek out a second opinion. It doesn't sound like your doctor is very familiar with ITP, and you would benefit from a more experienced doctor. My Hemo has treated many, many ITP patients over his career, and I am thankful that I can trust in his knowledge. When I was in treatment for ITP, we discussed every treatment option -- pros and cons -- in depth before jointly deciding the next move.

Best of luck. Let me know if I can help.

Thanks .. ok on Aug 30th I found out I had ITP.. on Sept 23rd they removed my spleen after the IVIG and Rutuximab didnt work.. I was on 100mg of Prednisone for 4 days and it didnt help any as they said....
I do think it was too soon too to do surgey, now they say it was a waste of time --it didnt help.

All of that is making my head spin around. Your doctor didn't give any of those treatments time to work. Yikes - does he want to get rid of you that badly?

Yes, another opinion would be good about now.

lol Thanks Sandi
Today i found out he has LOST 3 patients--meaning they died..!!!! I only saw him once in the office. All the other times Ive seen his partner who is a nurse practishiner ..opps think i spelled that wrong lol.. but yeah I told em last week I wanted to see someone else..I got back on Wednesday for another treatment of Rutuximab

Wow. Ok, while I'm not a doctor, it definitely sounds like you are not working with someone who is very knowledgeable about ITP. To have your spleen removed less than one month after diagnosis is really, really fast. Your Hemo did not give those treatments enough time to work. I can say that with certainty.

You need to get a second opinion right away. There are a lot of people up on here who have a great Hemo -- myself included. If you don't mind sharing your location, I'd recommend you make another post asking for suggestions on great Hemos in your area.

My Hemo reassured me, time and time again, the possibility of dying from ITP is very unlikely. So, while your Hemo has lost patients, the possibility of him losing you is slim.

You need to take control of your situation. The idea of patient advocacy is really important to me, especially since the ITP diagnosis, and it makes me so angry for you that you haven't had the kind of experience with your Hemo that you should have. At the very least, your Hemo should be explaining treatment options to you, and it doesn't sound like he is doing that. Patients can fire doctors, and I think it is about time that you fire yours.

@ jessmeyer THANKS !!!! Im plannin on again on Wed to see a different Dr... I just still dont under stand why Im not on Meds anymore when my platelets are at 8,000

Given that you are recently diagnosed, I agree that it is strange to not be on meds with such a low platelet count. I've heard of ITP "veterans" if you will, who have had ITP for a long time and have not achieved remission after many, many treatment options, deciding to stop treatment and self-monitor their symptoms while maintaining very low platelet counts.

However, that decision is usually made by the patient, probably against doctor's advice, after a lot of knowledge has been acquired. You are definitely not at that point yet.

Search around on this site, not just the forum part, or online even and find a doctor in your area who specializes in ITP or who has at least treated someone with ITP before.

Best of luck!

Hi same thing happened to me when i was seventeen found out i had itp a month later got my spleen out if i knew what i knew now lol but now we just gotta deal with not having one i guess. When i was new to itp i was told this was protocol. but anyway if your not having any symptoms at 8,000 thats probably why your not being treated. Ive had a few dorctors in my experience theres two types ones that worry to much tryong to put me in the hospital at 9 or ten when im not bleeding or no petechiae, yeah right ill be fine at home lol and the other kind who dont pay close enough attention like a platelets count coming back at 7 oh not to bad thenwhen i look at my print out my hemoglobin was at 5 in other words only paying attention to the count. 8 is not the best number but if your not bleeding anywhere and feel fine i wouldnt and dont ever push treatment your new to itp and alot of us have had it for years ive had it for 9 years stay away from meds if you can sometimes their worse then itp and you being on rituxin give it a little bit to work it still might. Just to let you know i had a three year remission a year after my spenectomy and no one could explain why so maybe thats a little hope? good luck

Thanks for sharing your story Jchrism8! You certainly seem to be on a fast track without much success. Being in the game for just two weeks it helps to be able to "compare notes." Hang in there!

Where are you located and getting treatment? It seems they went awfully fast! There are plenty of other options. Rituxin takes time and works well...good luck