Splenectomy with Promacta

My hemo wants to do a splenectomy even though my platelets are running in the 100-200 thousand range on 37.5 mg Promacta daily. It seems like just something they do. Anyone else have this experience?

My dr briefly mentioned it, but we both feel it's not a good idea since there other options we have yet to explore. Personally, I worry about doing it. There are issues you will have to deal with without one and why do surgery that does't even have a 50% guarantee of working.

Brizee:

I think you need a new doctor. First of all, Promacta should be dosed to keep counts around 50k. That is recommended by the manufacturer since blood clots can be a concern with TPO's if counts are too high. Second, I don't know of any doctor that would suggest a splenectomy to a patient with great counts and a good response to treatment.

Seriously, get a second opinion. Due to complications that can arise from not having a spleen, I have never heard any doctor remove one because "that's just what they do". Recent research has shown that spleen removal can cause more problems than just sepsis.

Here is the story. I came down with ITP on Sept 22. I had noticed some petechiae on my hands for some days before, but I didn't know what they were. The my wife notice what looked like broken blood vessels on my legs. I had blood in my urine, and blood blisters in my mouth on Sunday night. Went to my doctor Monday, and my count was <3000. Went to the emergency room, was eventually admitted to a general floor. Ha the steroids, Immunooglobulin, platelets, for six days. Then they started Promacta while still on 40 mg of prednisone. I began to respond to that, and went to the Oncology floor, which was much quieter. I was complaining about blurred vision, and an MRI revealed a brain bleed in the occipital lobe. The neurosurgeon said they would not operate on such an event, and it is resolving. I went home after 16 days taking Kepra, Prednisone, decadron, and some stomach medicine. I was weaning off the prednisone, home about 10 days, when I had some kind of siezure or psycotic break. I would try to speak, but gibberish came out of my mouth. I thought I was going insane. Back to emergency room and ICU. IO remember throwing up a couple times in the ER but no nausea. I don't remember much of that time because I was off my rocker. My wife said I became very religeous, and was praying, and talking to god. had an EEG, which was normal, another MRI. Spent days in the ICU with a person to watch over me. Was sent home, but was back in 3 days again with a DVT in my left leg. I was in and out of the hospital for about 6 weeks. They started talking about a splenectomy during my first hospital stay, asking if I had a favorite surgeon. My BIL was a surgical tech at the hospital so he knew who was best. That's what leads me to believe that that's the standard of care at their practice.

The top ITP doctors seem to moving away from splenectomy as a treatment. It was the standard of care 40 years ago, but not now. In the past few years, research has shown that splenectomy can cause an increased risk of blood clots in ITP patients. There are several reasons for that.

What was the cause of your DVT? Did the doctor do any tests to look for a reason? I'd be a bit concerned about that since some ITP patients have a tendency to clot, even with low counts. Certain treatments can raise that risk. What were your counts when you were in the hospital and were not speaking properly? Were they normal or low? That could be a cause for concern and I hope they looked into the reason for that.

These articles might help you to make a decision. A splenectomy is not a cure; it is a treatment that may or may not work. It has risks.

www.bloodjournal.org/content/98/6/1760?v...l-text&sso-checked=1

www.bloodjournal.org/content/121/23/4782...469454f243cd2b2bc543

Researchers in Spain measured and tested the clotting potential of microparticles (very small bits cells) in the blood of people with ITP and found that the microparticles in these patients were more prone to form blood clots than the microparticles in the control population. This was also true of those ITP patients who had a splenectomy and were in remission. The clotting potential of microparticles may be helpful in preventing bleeding, but this condition may also make people with ITP more prone to heart attacks, strokes, and clots in their veins than might be expected.

#3707 “Increased Microparticle-Linked Procoagulant Activity In Patients with Primary Immune Thrombocytopenia”

www.pdsa.org/products-a-publications/e-n...TO_THROMBOSIS_IN_ITP

This is a video by one of the top ITP specialists in the world. It is worth watching.

fhs.mcmaster.ca/medicine/hematology/ITP-2010/player.html

The DVT may have been caused by the fact I was bedridden so long. They did not put those leg puffers on me or a compression stocking till close to the end of my stay. Bad nursing. I was also still on 40 mg of prednisone. I have read about steroid induced psychosis. I also may have had a siezure. My observers noticed that I would stare into space for several minutes being unresponsive. That may be the way I seized.

Also vascular dementia. Very depressing.

It's possible you had the clot due to being immobile, but I don't think anyone should just assume that. Clotting disorders that can go along with ITP can also cause those symptoms.

The links to the articles aren't working, hmmm. A lot of help that was. Try these.

www.nhlbi.nih.gov/health/health-topics/topics/aps/signs

www.ncbi.nlm.nih.gov/pubmed/12565721

rheumatology.oxfordjournals.org/content/44/1/95.full

This can be treated if diagnosed properly.