Diagnosed in April, still have lots of questions

Hello everyone,

I'm so glad to find this support forum, I was diagnosed in April and just had my second bout of low platelets. The first count at diagnosis was 4 and this time was 14. The first bout I got checked when I noticed red blotches that suddenly appeared all over my legs and arms a couple of weeks after a bad dose of flu.

The doctors seem to put down ITP as having been triggered by the flu, but looking back I know I had a couple of smaller patches on my feet for many months before, I just hadn't realized what they were or thought to get them checked. And I had noticed broken blood vessels around my knees but I assumed that was what they were. When I mention it to any hematologist they say it's hard to tell without seeing them. I understand that must be true but it's frustrating as I'm left wondering what actually triggered the ITP long before I knew about it.

Happily I responded well the first time to a dose of IVIG and 3 days of dexamethosone plus tranaxemic acid, and my platelets were back up to normal (above 150 I think) before this last episode happened out of the blue, so I hope the same thing will work again this time.

This last episode which was apparently triggered by nothing has really brought it home to me that this ITP is (or may be) here to stay but I really have no idea what to expect or how it will shape my life. After the first bout I was so weak for about 6 weeks after. I am a graduate student and my work has really suffered. This time I am less tired (maybe because no preceding flu?) but my productivity was definitely impaired today, let alone my wellbeing. I was slow and my lower back aches, and I spent the whole of yesterday in emergency getting IVIG. Should I expect that my studies will be seriously affected? Is there any way to know at this point? And will I be spending the next however many years - or lifetime - in and out of hospitals?

I feel like I'm not getting all that many answers from my hematologist, it feels like she is not interested in discussing the bigger picture, just the mechanics... Maybe this is because there are no definitive answers but I feel really lost. I had just gone back to normal hours and cycling to university again last week and had also been tense and stressed for various reasons over the last week and part of me wonders if that triggered the low platelets. I will ask my hematologist about this but I don't feel hopeful about getting answers. I have only seen her a couple of times so I will wait and see for a bit but I'm finding the uncertainty frustrating and frightening. Maybe it's inevitable at this fairly early stage but I feel so ignorant of the bigger picture of how ITP is likely to pan out and affect my life. Any hematologist or nurse that I've asked says not to bother resting up although one mentioned that stress is sometimes considered to be a cause. The not bothering to rest advice doesn't ring true with me - especially since I was literally incapable of doing anything other than lie on the couch and talk in whispers for a week or two after the first epispode. But I also have an MFA to get and I don't want to take time away from it if it genuinely makes no difference. Any thoughts?

Also, can anyone give me an idea of how or if I will have to rethink my general lifestyle in the coming months and years? For example I was camping and doing long treks far out of reach of cell service and roads over this weekend just before the second low platelet count (actually I had seen a few petechiae prior to the trip but I chose to pretend it wasn't happening and go anyway). But if I had fallen and say cut open my head with a platelet count of 14 I'm guessing it could have been pretty dangerous, especially hours away from outside help or even a phone call. Does having ITP mean that I will always be at a high risk if I am far away from help? What if my platelets go down without me knowing or while I'm out there? It is so important to me to be able to keep doing these things.

Please excuse the long and detailed first post, I have so many questions and worries and I'm struggling to process the whole thing right now. This current episode had really brought it home to me that this isn't going away and the last couple of days have been a bit of a rollercoaster. Any insights or others in the same boat it would be really great to hear.

Maddie:

ITP can turn your life upside down at first, but it will get better. IVIG is usually a very temporary treatment and counts fall again after a few days or weeks. I never used IVIG for that reason, and was never hospitalized even with counts below 5k. There are other treatment options which you can become familiar with. They all have risks and side effects, but most find a treatment that allows a normal life. The trick is to learn as much as you can and make suggestions that better suit your lifestyle. I never missed a day of work because of ITP other than the days I had Rituxan treatments. It's possible to keep going.

ITP tends to be chronic in adults, but that does not mean that it can't be managed or that it won't remit. I've been in remission for ten years after dealing with it for seven. There are better treatment options now that make things a bit easier.

There aren't many answers as to the causes of ITP. It can be triggered by one thing or a combination of things. I do believe that stress affects the immune system and can trigger autoimmune disorders or exacerbate them. You will want to look at the big picture when it comes to treatments, because some of them can cause long-term side effects. Right now, you are healthy other than the platelet count and it's good to try to keep it that way.

Your activities will be centered around your count for a while, but when counts are up, you can do anything you want to do. Don't stress about that yet; many people are able to keep counts up although it might take time to find the treatment that works for you. It can be a roller coaster for a while.

It can be difficult to keep up with life while dealing with ITP, but it can be done. Steroids cause the worst side effects such as fatigue, weakness and joint/muscle pain. If a treatment is too hard for you, ask your doctor to stay away from that one. You can take control of this. Most people get to a point where they feel that ITP is just a pain in the butt.

It's important to know that a count of 30k is considered safe for daily life, counts do not have to be normal.

I was diagnosed in February, and so I'm not much further along the road than you, but what I've found (I've had three rounds of low-enough-to-treat platelets) is that when I'm lower than say 25K or so and/or being treated, then I do best if I lay low, and only do those things that are most important--my job, and being there to love my daughter and husband. All other extra-curricular, social, even house-cleaning and meal preparations beyond opening cans of soup or what-have-you, take a backseat during that time, and I spend a lot of time on the couch. But, so far the steroid treatments have always raised my platelets, and then I generally get between 3-5 weeks of feeling normal or close to normal. During those times, I live my normal life--which includes friends and activities and church and hiking and cooking and playing soccer and baseball in the backyard with my kid.

If I could choose, I think I would choose not to have ITP, but there's no doubt that having ITP has given me a greater appreciation for the times that I do feel good and do have good health. I've always taken my good health for granted in the past, but now I treasure it, and take advantage of it when I have it. I'm happier about having it when I do, and honestly, I think that might make me a happier person in general, at least most of the time.

I guess all this is to say that if your experience is anything like mine, and anything like the experiences of those who have counseled me here on this forum, you'll get it figured out after awhile, and you'll be able to live a life that is pretty normal, and very happy. So, my advice to you is just try not to stress about it too much, or look too far in the future, especially when you're feeling down. The future is bright. Much brighter than it looks when you're first starting on the ITP road.