My Story Thus Far

I wouldn't say I am newly diagnosed, but I would like to share my story up until now and ask a couple of questions.

I was traveling in Europe for work back in October and had a fever and headache that wouldn't go away that I was treating with aspirin and then ibuprofen. A week or so after I got back, on my way out of work I noticed something on the inside of my cheek. It was a blood blister. I took the bus home and told my partner to look me over as I took off my shirt. He didn't notice anything, so I finished undressing to take a shower and my legs were covered in petechia which immediately started forming on my arms and whole body. I started to have a nose bleed.

I wound up in the emergency room that night with no detectable platelets. They did a lot of testing for infectious diseases, but my ITP was treated with immediate IVIG and dexamethasone. I started to respond over the next few days while they tested me for every infectious disease they could think of. Once they cleared me of infectious diseases they released me and put me on 140 mg prednisone a day. They did detect a recent CMV infection which most people have no symptoms of but would explain my fever and headaches. They also asked me if I had been drinking at all - oddly, I rarely ever drink even a beer but over that trip and the one I took a month earlier, I started drinking gin and tonics, at most 2 or 3 in a day during our week-long business trips!

So leading up to my platelet drop-out, I was intaking quinine in moderate levels - something I normally never did. I had a CMV infection. I was taking aspirin and ibuprofen, both known to "thin" the blood.

As my treatment on prednisone began to raise my platelet levels, I started to do my research on the disease and the prognosis for adults with ITP. From what I read, I learned that most adult cases are chronic, and most have no identifiable cause. I was and am still hoping that mine was caused by one of the above factors or a combination of them. My platelets continued to rise and hover around 150 which is excellent.



Coming off the prednisone was a nightmare I have been completely off of it for over 3 months now and I still have pain in my joints and muscles. This leads me to one of my questions: How long did others have symptoms of pain from prednisone therapy? I was on 140/day in Oct and tapered about 10% / week and then slower at lower dosages. The pain has subsided quite a bit but it is still there. I wonder how long others had to deal with it after treatment.

I also wonder if anyone else out there thinks their ITP was attributable to an infection or intake of quinine or something of that nature and if they had a full remission ever since being treated.

A week ago I had emergency appendectomy and luckily my platelets were at 150 for the surgery, but I recently discovered that I will have to have a very serious open heart surgery in a year or two to repair a congenital defect before I get too old (I'm 41 now). As I don't know what will happen with my platelets, I wonder under what conditions others have had surgery with low platelets.

I have enjoyed reading the threads on here and wanted to contribute my story and see what others thought about my questions.

Shaz:

ITP could have been triggered by anything. Aspirin and Ibuprofen usually don't cause platelets to drop, but they sure can add to the symptoms if counts are low. Quinine-induced ITP is caused by a specific antibody that a person has, and once quinine is stopped, counts usually go right back up. There is a test that can determine whether or not quinine was the culprit. If it was quinine and you never drink it again, your counts should stay up.

It's possible that CMV was the trigger, but you will probably never know for sure. Although adult ITP can be chronic, that does not mean that you will have it for life. Many people struggle with ITP for years and then it suddenly remits and never returns. I've been in remission for 10 years now after dealing with it for 7. Some people only have a one time drop and then it goes away.

As for surgery, you'd only need intervention if counts are down. If they are, treatment may be necessary before surgery is performed. Counts may not have to be normal though, you'd be surprised to know that surgeries can be done with counts of 50k, but of course that depends on the type of surgery and the comfort level of the surgeon. I wouldn't worry about that unless you have to. Your counts seem to be very good right now. If you do have to treat, there are other options besides Prednisone.

Prednisone is wicked and you were on a pretty high dose. Many people have joint and muscle pain for months after stopping the drug but it eventually goes away. I can't really give you a time frame since everyone is different.

Thanks Sandi. It's good to have the forum to discuss and share.