Immune Thrombocytopenia Purpura (ITP): What helps?

Sorry, but he has very little recollection of what they did prior to the splenectomy - the ITP came out of the blue and things happened pretty quickly; we also had 2 very young children at the time, so it is all a bit of a blur. We were also living in another province at the time so his medical records are not easily accessible, and frankly because he recovered so well and his ongoing condition has been so uneventful, there hasn't been any reason to look back.

My husband has been diagnosed at the age of 37, we have done a bone marrow biopsy, immune suppression infusions (those landed him in the hospital for a week due to a very rare but severe reaction), and now is on Promacta. I am curious if your husband had an ultrasound of his spleen done that showed that it was enlarged? The reason I ask is because mine did and they said it was not enlarged but since he had a bad reaction to the infusions, they said splenectomy was the next step. We discussed that we were 100% comfortable with this option and that is when we got put on Promacta. Problem is the Promacta is not working at the current dosage. They are going to up the dosage to the next level.

Hi, we had a similar situation with our daughter when she was very young (2 or 3). 21 days after getting her DPT shot she showed signs of spontaneous bruising called peteakai or small freckles on her skin. My wife a nurse recognized the need for immediate care. My daughter had a platelet count below 1,000
She was admitted, given IV immunoglobulin and her platelets were restored to greater than 50,000 within a few days.
She is 38 now with no reoccurrence. It was felt at the time that something in the DPT vaccination caused her immune system to attack her platelets give that one of the components of the DPT activated at the 21 day mark, the number of days following her vaccination when her platelet count cratered.

HI there. I don't mind you asking at all! My husband was 41 when he was diagnosed; he is now 69. He was otherwise very healthy. He doesn't remember whether he had any mediation before the surgery, but if he did it was not for long because they removed his spleen very soon after he was diagnosed - within 2 or 3 weeks or so. I seem to recall that the removal of his spleen was their first treatment option. He has continued to do well since then, no signs of any further problems - just had his annual visit with the hematologist yesterday and the numbers all look good; his neutrophils are a little low but nothing that has resulted in any medication or other treatment.

I am 60 years old and was diagnosed 7 months ago....if don't mind me asking, how old your husband was when he was diagnosed....and did doctor gave to him any pills before Deciding to remove the Spleen.

I was diagnosed in April 2024....taking Promacta, its was working for 6 month, but in November my platelets are slowly going down....and I still taking the medicine.
Couldn't find anyone who have a experience with that, i mean Patient

Thank you for your response. We’ve talked about it, but my doctor doesn’t seem to want to remove my spleen unless last resort. But from all the responses I have received, it seems the only successful eradication of the condition is with removal of the spleen.

My husband was diagnosed with ITP in 1996. Within a few weeks of his diagnosis, they removed his spleen. He was then on Prednisone for about 7 months and weaned off it over a few months thereafter. He was lucky - the removal of his spleen for the most part resolved his ITP. He has to be careful about exposure to certain viruses, but for the most part his ITP has resolved.

Welcome to Connect, @jennleeman. My goodness, your son’s condition must be so frustrating and worrisome for you. I swear there’s little worse than feeling helpless when it comes to taking care of our kids…no matter their age!

Hopefully someone with ITP experience will pop into the conversation and be able to offer you some assistance. It sounds as though your son has a good team behind him and giving him care with the Doptlelt to increase his platelets and IVIG infusions to help his weakened immune system. But you’re obviously concerned that he isn’t having as positive of a result as you’d hoped for.

Have you considered a 2nd opinion for him from a large medical/teaching facility like Mayo Clinic?
If you’re interested in requesting an appointment at any one of the 3 locations in Rochester, MN, Phoenix, AZ or Jacksonville, FL here is a link you can follow to get you started: http://mayocl.in/1mtmR63

It’s easy to lose hope when you feel like you’ve run out of options for your son, but please, never give up. The only thing stronger than fear, is hope. So try to stay postive while advocating for your son’s health.

From my understanding it’s important to distinguish ITP from other causes of thrombocytopenia, (low platelets). They can have similar presentations but may require different treatments. Has his doctors determined if this was primary or secondary to an underlying condition?

I’ve been on Promacta going on 3 weeks. My doctor called me at the end of the 2nd week to tell me that it is not working as he hoped. My platelets went down from 86 to 1 so he upped my dosage to 100mg from 50mg. I will be going in tomorrow for bloodwork and to discuss my path forward.