Newly Re-Diagnosed 27 Yrs After Splenectomy

I had ITP back when I was 32, and it was treated back then with steroids and then a splenectomy. I have not had any issue with it since then, as far as I know, but now, just found out this past week that it has returned after 27 years.

My platelet count in the ER last Thursday night was 34000 and they gave me a steroid shot, and got me in to see an excellent hematologist the next day. I saw him last Friday morning, and at that point, I was down to 27000. He prescribed a dexamethasone pulse for the weekend, and then on Monday and Tuesday, he did a 2 day IVIG treatment. I have done fairly well with the IVIG because he was really careful to start the drip very slow, and monitor my response. I have had some chills and an ongoing headache, but all in all, I am sure it could have been worse.

I go back Friday for another CBC and once he sees what my platelet count is at that point, we will be discussing where treatment goes from here.

I must say I was really shocked to find that the ITP has returned. I am grateful to see that things have come such a long way since 1987, in terms of knowledge about ITP and its treatment, and that I have a really good hematologist who knows his stuff.

It is possible you've grown a spleen, so that might be something to have checked.

I have to agree it's great to have a hema you can trust!

Are you having symptoms at counts around 30? Because standards have changed a bit since you were first diagnosed, and 30k without symptoms or other medical complications can be considered a safe count.
Erica

That is interesting. I didn't know that was possible to grow another spleen, but I see the hematologist tomorrow and will ask him. Back in 1987, I was admitted to the hospital with a count of 4000, but this time, in just the past week, it has varied between 27,000 and 45,000. So far, I have not gone below 27,000. However, I have had bruising and the biggest reason it was discovered again was because I got a tiny tear in the vitreous lining of my retina, and I was bleeding excessively into my eye. (The tear was "spot-welded" by a retina specialist with a laser last Friday, and I think that will be OK.)

I suspect that you are correct that I may end up with a number between 30,000 and 50,000 for a while. I am really interested to find out what affect the IVIG will have on my numbers, and will know more after I see the hematologist tomorrow.

People sometimes have accessory spleens, or tissue that may have been left after splenectomy can grow. It's also possible that the liver took over the function of platelet destruction and in that case, another splenectomy will not help. Many people with ITP can also have production problems and there is no way to determine if that is occurring.

Things have changed a lot since you were diagnosed. There are many more treatment options available and many doctors have begun to relax when patients have low numbers. They will look at symptoms when determining hospitalization decisions and not counts as they have in the past. Not all doctors are like that though; and some are not as up to speed as they should be.

Having just gotten back from seeing the hematologist, I can tell you that mine does seem to be very up to speed on all of this. My numbers were 56,000 today, and since there do not appear to be any active bleeding problems, his recommendation was to stop any further drug therapies for the time being and monitor the platelets on an ongoing basis. I am so happy that I am going to have a week without any drug therapy!

I go back to see him again next Thursday morning, and he will check the numbers again, and we will see where we go from there. His basic approach is that as long as I do not dip down to 30,000 or below, I can do without any drug therapy. If I do dip to 30,000 or below, then he will probably try IVIG again and maybe something else to bump me back over 50,000 again. Rinse and Repeat. I like his approach of trying to stay as hands off as possible. And I will gratefully accept each week of no drug therapy that is given to me.

Glad to hear the good news. Hope you have a great week.

Sounds good! Good luck!