I’m definitely not an expert on ITP or autoimmune diseases in any way. I can’t answer all the questions, especially since I still have so many myself. The Platelet Disorder Support Association does a tremendously good job answering frequently asked questions on their Web site. So if you’re feeling curious, head on over and check it out.
On the other hand, I can probably speak semi-expertly on my own situation. I’ve had a lot of the same questions, especially after starting a new job and trying to keep myself safe from infection.
So, here are some of the questions I’ve heard recently:
- Why are you avoiding hand shakes and door handles?
I laugh a little about this. I have always been a bit of a germaphobe, but now it’s actually necessary. I’m trying to lower my chances of getting another infection. The longer I battle infection, the longer any treatment takes. With prednisone, infections seem to reset the clock. I need to be healthy (infection-free) for the prednisone to work properly and the blood work to reflect the treatment’s effectiveness. Infection complicates treatments for autoimmune issues because most treatments involve suppressing the immune system, which fights infection. And the immune system can’t fight if it’s asleep.
- How did you get ITP? Does it run in your family?
From what I understand, ITP is not genetic. Anyone could develop ITP because doctors believe it begins with an immune response that results in confusion. It’s difficult to know for sure what causes each case of ITP, but I believe mine began with a severe viral infection. Somewhere in the battle, the wires of the immune system got crossed and the system started attacking its own allies. I have never felt the same since recovering from that infection, which was fairly severe.
That being said, I do have a distant cousin who also has ITP. He has had it for several years and never reached remission. His platelet counts, unlike mine, seem to hold steady at a certain number while my counts ride a roller coaster. So it’s not impossible for family members to also have ITP, but it’s not something connected to your genes.
- What made your doctor decide to treat you? Was it getting worse?
No, there was no breaking point for me. We discovered my condition by accident. We tested my blood weekly for probably 12 weeks before determining that my lowest platelet counts were borderline dangerous. My doctor suggested we begin treatment instead of crossing our fingers and hoping my counts don’t drop any lower. Treating right now is giving me a better chance of remission without all the drastic measures of hospitalization. While I am healthy and young, I can handle the treatments better, reach a point of remission, and hope that ITP will not be a lifelong battle. At this time, we are going on six months of treatment without much success, but that doesn’t mean these treatments will never work. In the meantime, they are doing what they were meant to do, and that is to relieve symptoms if only temporarily.
- What kind of treatments are available for you?
There are a few treatment options ranging from corticosteroids to immunoglobulin infusions (IVIG) to chemotherapy. There are some drug options in there, too. From what I’ve read, they are expensive and relatively new. We tried corticosteroids and determined they are not a good long-term treatment option for me. I have had three sessions of IVIG, but I do not think IVIG will ultimately achieve remission. My doctor recently discussion the chemotherapy option with me, but he says it’s in the back of his mind (even if it’s in the front of mine).
- How do you feel? Before and now?
I slept a lot before starting treatment. I sleep much more normally now, around 7-8 hours a day but now with the help of Benadryl. Before, I would sleep 7-8 hours a night plus a 1-2 hour nap in the afternoon or evening. I was intimidated by road trips, travel, long events, even the grocery store. I was just so tired. I am still pretty tired, but I don’t feel the need to nap when I get home from work. It’s nice to know now why I was exhausted. I used to do P90X and immediately go to bed afterward. The fatigue was crushing. I also had some pretty significant tenderness in my side (from the spleen, I suspect), which has been mostly relieved by the prednisone.
Piece of advice on this one: don’t tell chronically ill people you hope they’ll feel better soon. This is a long battle–one that will last the rest of our lives. This comment just creates an awkward moment where I want to re-educate my friend on what it means to have a chronic illness. This isn’t the flu–it won’t go away.
Do you have another question? Let me know and I’ll try to shed light on it from my ITP experience.
Happy ITP Awareness Week!