TOPIC:

Hi
I have a question if anyone can help me with. My husband has been receiving treatment for ITP for over a year. He goes for blood draws every week and sometimes infusions and injections. He has been doing this every Friday for over a year. He has had Rituxin, Promacta, IVIG infusions, a splenectomy, Nplate injections, steroids and nothing helps. It all started a short time after he had a heart failure and ended up with a pacemaker. I keep going back to the pacemaker as the culprit because up to the time it was implanted his levels were always fine. I would appreciate any info or ideas you may have concerning this problem. Our oncologist seems to be baffled and so we have contacted a specialist in Boston and he doesn’t have any answers either. Am surfing the ITP community to see if there is anyone that may have a suggestion on how to proceed. Thank you and best of luck to you all.

Jptgaffney wrote:

Hi
I have a question if anyone can help me with. My husband has been receiving treatment for ITP for over a year. He goes for blood draws every week and sometimes infusions and injections. He has been doing this every Friday for over a year. He has had Rituxin, Promacta, IVIG infusions, a splenectomy, Nplate injections, steroids and nothing helps.

Hi Jpt. By 'nothing helps' do you mean none of these treatments have given him remission, or, that none of these have raised counts? IVIG did nothing?

It all started a short time after he had a heart failure and ended up with a pacemaker. I keep going back to the pacemaker as the culprit because up to the time it was implanted his levels were always fine. I would appreciate any info or ideas you may have concerning this problem. Our oncologist seems to be baffled and so we have contacted a specialist in Boston and he doesn’t have any answers either. Am surfing the ITP community to see if there is anyone that may have a suggestion on how to proceed. Thank you and best of luck to you all.

As I recall, there have been reports here of various surgeries as the cause of ITP. Did you happen to stumble across any similar story while searching on this website? In case you haven't seen it, here is the page to do that.
pdsa.org/discussion-group/search.html
Did the implantation of the pacemaker involve bone drilling or something like that? Did he come down with Flu symptoms soon after the implantation?

Hal a placemaker is inserted under the skin - at least for all those I know with one - so is a defib

www.hopkinsmedicine.org/health/treatment-tests-and-therapies/pacemaker-insertion
What is a pacemaker insertion?
A pacemaker insertion is the implantation of a small electronic device that is usually placed in the chest (just below the collarbone) to help regulate slow electrical problems with the heart. A pacemaker may be recommended to ensure that the heartbeat does not slow to a dangerously low rate.

www.hopkinsmedicine.org/heart_vascular_institute/conditions_treatments/treatments/implantable_cardioverter_defribrillators.html
Implantable Cardioverter-Defibrillators (ICDs)
The technique used to insert an ICD is almost identical to implanting a pacemaker. It is performed in the EP lab and takes two to three hours.
1. A two-inch incision is made beneath the collarbone and a small “pocket” under the skin is created for the pulse generator.

Melinda, thanks for that.
Take a look through these comments. In particular user 'Jptgaffney'
pdsa.org/discussion-group/search.html?query=pacemaker&searchdate=all&order=dec&childforums=1&start=0
Might try 'ICD' keyword too.
There does seem to be some evidence that an implant can be a trigger for ITP. But what aspect specifically? I think they are surface coated with chromium. Not sure. Maybe chromium invokes an immune response in some? Maybe try 'chromium' keyword? I was hoping to get an answer from her about having the Flu afterwards.