ITP Updates

For those just tuning in, my husband was diagnosed with a rare blood-clotting disorder called ITP (Idiopathic Thrombocytopenic Purpura) back in November. You can read more about that experience here.

As for this post, I thought I’d give a few more updates on how things are going and explain a bit more about it, because it’s so mysterious and weird and we’re still figuring this all out.

The biggest symptom we noticed that prompted the doctor’s visit that day was what I previously called “a rash” of tiny red dots all over his body. The medical term for that is Petechiae, which isn’t technically a rash because it’s under the skin. Those red dots were little “bleeds” if you will, under his skin.  So when I said he wasn’t experiencing any bleeding, it wasn’t technically accurate BUT, there COULD’VE been a lot more bleeding (nosebleeds that won’t stop are a pretty common ITP problem for example, or blood in urine/stool, etc.) so that’s what I meant. His count was so low, that we were surprised there wasn’t MORE bleeding, which could’ve been life-threatening. Had he gotten into a car accident or something that day, even a minor one, it could’ve been a very dangerous situation.

So let’s fast-forward a bit. He’s had weekly blood draws since he was discharged from the hospital. He’s had 2 rounds of a high-dose, 4-day steroid treatment (Dexamethasone) which he responded really well to (his count goes up significantly right after treatment), however it hasn’t quite stabilized yet (it drops again), so he’ll likely get another round of it (depending on next week’s count).

Something we learned is that it’s unlikely that his platelet count will go back into “normal” range (150,000-450,000). His highest count so far was after his first dose- 95,000, and the doctor was super pleased with that and said it was a pretty high number for an ITP patient. Their goal is to keep it above 30,000.

For now, he’ll still have weekly blood draws and appointments every 4 weeks (bumped back from every 2 weeks, hooray), and as I said, probably another round of steriods if the count hasn’t stabilized yet. Eventually, if and when his count is stable and consistent, he should be done with the weekly blood draws and treatments, only getting occasional draws and check-ups, unless serious symptoms occur of course.

You may be wondering, “has this affected him in any other physical ways?”, and the answer is, not as much as it could be. I joined an ITP support group on facebook because I wanted to hear other people’s stories and experiences. From that group, it is clear to me that what the doctor said is accurate…. “ITP is unpredictable and affects everyone a little differently.” Some people experience a lot of other symptoms including fatigue, lots of bruising and nosebleeds, bad side effects from the treatments (and there are several besides the one Ivor is on) and not everyone responds as well or as quickly to treatment. So we are very thankful that he hasn’t experienced the worst of it. He had some fatigue in the very beginning, right after being dischaged from the hospital (but I think that had a lot to do with being stuck in a hospital for a few days and feeling blindsided by this diagnosis, etc.) It, understandably, took a mental/emotional toll at first. And the worst side-effect of the steroids were hiccups, which is weird (although that could be a coincidence…we’ll see if it happens again on the 3rd round, if he gets a 3rd round).

So, he’s doing well, all things considered. He’s still super active on his bike, and we’re about to start Rushfit together again soon. This diagnosis hasn’t slowed him down one bit 🙂 In fact, he has even more motivation now than ever before, to stay active and healthy (and making sure his family is too). His new motto is “Shut Up Blood”, inspired by a pro cyclist who started the “Shut Up Legs” thing lol.

We’re praying for stable numbers soon (well above 30,000 would be great!) Thanks for all your prayers and encouragment throughout this process <3


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