Hello All,
First, thank you all for sharing so freely on this site. I've learned a great deal already and hope to be able to contribute by sharing my experiences.
The short version of my history is I suffered a severe blood clot 15 years ago and was diagnosed with antiphospholipid syndrome (APS) and have been on blood thinners since. Sometime after that I was also diagnosed with ITP, after monitoring for a while, decided to go with the 'wait and see approach'. This worked well for years. While not actively monitoring, during the last 4 years my platelets ranged from 100k to 40k, with the average at 60k.
In the past month however, I started suffering from spontaneous bleeding so additional action was needed. Platelets were tested at 25k, which apparently for me was too low when combined with my blood thinner. This bleeding also occurred after a relatively recent change in medication from warfarin to xeralto.
I have been taking 60 mg prednisone daily for several weeks. First test was encouraging as platelets increased to 90K, however, retested yesterday and they have dropped into 50's. My Hematologist feels additional action is needed as that doesn't give much of a safety net. We discussed 3 next best options in his opinion and he asked me to consider and research and he will await my decision. In the interim, he's keeping me on pred and off thinners so the clock is ticking. I feel very fortunate that so far I've tolerated the pred reasonably well.
I'm seeking another opinion and was relieved to see the doctor I contacted was listed in another thread here as THE ITP doctor in St. Louis (Dr. Blinder). I will of course wait on any final decision until consulting with him. For the record, I've been extremely happy with my current hematologist, but given the complexities and constantly changing treatment options I feel it would be responsible to talk to a recognized expert. My wife agrees
I’m probably where a lot of you are at, looking at all the options and trying to make an informed decision. ITP is complicated enough; tossing in APS and limited renal function due to 1 kidney further muddy the waters by adding risk and limiting options. Not that any of us have easy decisions to make with ITP that’s for sure.
My initial thoughts were leaning towards spleen removal. While it has risks, which APS adds to, it also seems to have the highest probability of success in the short and long run. I need to get back on blood thinners, the sooner the better. Plus, not getting any younger (50) and if surgery is an option sooner may make more sense, as my health has shown things can change rapidly. But offsetting that, no putting the spleen back after you remove and all other options you can discontinue. Also, I’ve only tried one other approach, might make sense to try one other non-surgical option to see how I do.
I’m sure this line of almost circular thinking sounds familiar to a lot of you. I just found out yesterday afternoon, a lot to think about.
So still looking at other options, reading here and keeping an open mind, which I think includes back to a wait and see approach. Though it seems necessary at this point to at least have a “what next” plan.
Thanks again for all your support and please let me know if you have additional questions that could help you. And of course, very interested in what you all might have to share, if anything.
Mike