I was diagnosed with ITP in July, 2012. It came as a complete shock. It also came on the heels of another shock: Just three months previous, I was found to have a complete blockage of one of my main heart arteries. This was pretty stunning because I've spent my entire adult life (I am currently 65) participating in sports such as cycling, cross country skiing, hiking, running, canoeing, etc. Nevertheless, I had serious heart disease and required open heart surgery in May, 2012.
Two months after the surgery, a routine blood test revealed low platelets - around 40,000. I was assigned a hematologist, and thus began a pretty scary rollercoaster ride, one that a lot of you are probably familiar with. In the first conversation with her, I remember the hemo ordered me to use an electric shaver, not one with blades. And stay away from knives! No cutting veggies! Sheesh....
Treatment started immediately. First, there was prednisone. My platelets responded well at first, but then dropped over a few weeks as the prednisone was tapered. I then received IVIG, again raising my platelets close to the normal range. Temporarily. A month later, more IVIG. I had tolerated the first round very well. Second round, not so much. I became really, really ill. By far the worst headache I'd ever experienced, along with a lot of vomiting. I finally recovered after about 5 days in bed, pretty much unable to move. My platelets were up, but again they pretty quickly tanked. Another round of IVIG followed, along with the same gnarly side effects. My hemo decided I'd suffered enough, so she tried other stuff. More rounds of prednisone. She tried anti-D. More nasty side effects. Once, my platelets dropped to an alarming 11,000. I was admitted to the hospital and given another round of anti-D, which again made me sick but raised my platelets out of the danger zone.
By this time, a couple of years in, I was getting kind of discouraged. The prednisone was starting to affect me in some pretty "interesting" ways. I had a ton of energy! I really didn't seem to need much sleep. I felt really good. BUT. I was starting to develop cataracts. My blood testosterone levels were in the tank, which sadly has certain implications for ones libido and energy levels (when not on prednisone). And in 2015, I fractured a vertebrae while skiing and was subsequently found to have much lower bone density than someone my age should have.
In the spring of 2014, I was given Rituxan. I was aware that this can be very effective, but takes some time - often months. Well, nothing happened. My platelets hovered in the 40,000 range, sometimes a bit lower, sometimes a bit higher, as they had the previous few months before the Rituxan. Not exactly dangerous platelet levels, but not too encouraging either. The hemo kept talking about my spleen. I wasn't keen to lose that, and not really very excited about more surgery.
Finally, after I broke my back in the spring of 2015, I decided no more prednisone, and to just see what happened. I felt that the cure, in this case, was worse than the disease. I remember accidentally cutting my hand pretty deeply once when my platelets were in the low 20,000s. Nothing horrible happened. It stopped bleeding pretty quickly and normally. I never really bruised easily, nor did I ever develop the little spots on my ankles.
And then, more than a year after the Rituxan, I was surprised to see my platelets gradually on the rise. By fits and starts, they started to move toward a normal level. My hemo feels that this was not related to the Rituxan - well over a year had passed. But last check, my platelets were well over 100,000. I've done nothing differently. I eat well, I exercise regularly, I get plenty of sleep.
As we know, the causes of ITP are pretty unknown for most of us. I can only think of one possibility for my own case: very long term (20 years) of ibuprofin. I'd injured my back in the late 1980's, and used ibuprofin ever since. I had stopped using it a couple years before my diagnosis, but I wonder if long term use was a causal factor. Who knows....
There are a few things I know now that I wish I'd known back when I was first diagnosed. First, don't completely freak out about this. From what I understand, hardly anyone dies from this, for one thing. Secondly, as my latest hemo told me, he doesn't get too excited as long as platelets remain over 30,000. And maybe even lower is okay, depending on the patient. Looking back, I feel that I became needlessly way too stressed out. I mean, when my hemo tells me to quit using blades to shave lest I nick myself and bleed to death, who can blame me?
Regarding prednisone, I'd be pretty careful about that and really press your hemo and ask a ton of questions if that is prescribed more than once or twice. The long-term side effects are real and pretty negative.
Anyway, I have no idea what the future holds for me. Perhaps ITP will again raise its ugly head. But I'm optimistic. Please remember that there is hope for the long-term. I believe there are a lot of people out there like me who are in remission. I have a lot of empathy for those with ITP and how it feels to be diagnosed. It sucks. But don't give up! Learn all you can. And use the PDSA resources and read others' stories as well. It really made me feel a lot better when I was pretty down about stuff.
Oh, one more note: I was, and remain, needle-phobic! I hate needles! If you're new to this and feel the same way: I never lost my needle-phobia. But after being poked the first hundred times or so, I got used to it. If that makes any sense.
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