Recently diagnosed, and frustrated

Hi everyone. I'm really glad I found this site tonight, because I've got a few questions regarding my recent experiences, and hope that others who have gone through this can help me with some answers.

First, a little background. (Bear with me, I know this site is for ITP, but there is a point.):

Last summer, I found myself suffering from frequent bouts of rapid breathing and heartrate, turning gray, massive fatigue, etc. After nearly passing out after walking about 10 feet, my co-workers rushed me to a doctor. In the end, my hemoglobin was found to be <7. I was diagnosed with idiopathic autoimmune hemolytic anemia. I was place on 120mg of prednisone a day (which caused massive fluid retention), and after about a month (with a hemoglobin of 10), I was given a 4-week cycle of Rituxin. As the hemoglobin came up, the prednisone was tapered down. Within 2.5 months of my initial diagnosis, my hemoglobin was up to 17, and has been there ever since (just over 1 year).

Now, here's where it gets interesting. After my hemoglobin had been around 17 for 3-4 months, I did something stupid. I stopped going for my monthly CBCs. A month ago, my girlfriend started to notice that I was bruising easily, with no recollection of what might have caused the bruises. Also, I noticed that even the smallest nicks and cuts would take 20 to 30 minutes to stop bleeding. Recognizing that this was probably a "blood problem", I made an appointment with my hemotologist. When I went in, he initially started to fuss about me not having a CBC in nearly 7 months, but stopped once he recieved my labwork. My platelet count was 4.

He told me I had idiopathic ITP (he's stessed the "idiopathic" part several times over the last few weeks). He placed me on what he called a "pulse" dose of dexamethasone. 40mg a day for 4 days. I went back to see him a week later, and my platelets were 6. He immediately prescribed 80mg of prednisone a day. Additionally, he set me up for another 4-week course of rituxin, to start at the end of that week.

Before my second treatment, I had another CBC. My platelet count was 4 again (there was no CBC ordered before my first treatment). Yesterday, I went in for my third treatment, and the count is still 4!!! And this is with me taking 80mg of prednisone a day for the last three weeks as well!!!

So that's the background. And here are my questions.

1) How many people have had both AIHA and ITP? My fear is that two "idiopathic" immune hemolysis dieseases may not be that "idiopathic" after all.

2) Should I be concerned about the fact that my count is still 4 after three weeks of prednisone and 2 Rituxin infusions?

I appreciate everyone taking the time to read this and really appreciate any replies. I'm just really frustrated, as this is now the second time in just over a year that I feel like my own immune system is trying to "take me out", as it were.

Hi - there are a few people with both AIHA and ITP. They don't post much any more, but maybe they will pop in. It can be a tough thing to balance. It shouldn't take you out (they can usually be managed). The word idiopathic just means "no known cause". They are both autoimmune disorders. That word has been used less and less over the years and the word "idiopathic" has been replaced with "immune".

There is always concern when counts are low, but there are still other treatments that you could respond to. I'd say that you don't respond to Prednisone, but it's still early to get a response from Rituxan. That usually takes 3 to 12 weeks after the first treatment.

Thanks Sandi. I guess some of my frustration (this time around) is that my hemoglobin numbers seemed to bounce back so quickly (up 2 points in just 2 weeks), while my platelet count continues to stay so low.

And I'm sure a good bit of my frustration comes from the "unknown" element. I want to know WHY my immune system decided to do what it's doing. Of course, I'm sure many here feel the same way. It's just frustrating.

With my count so low, my doc is "strongly recommending" that I not do the travel I'd planned for the holidays. It's also having a major impact on work, since that involves a lot of travel as well. To top it all off, I have a ten year old (I'd say rambunctious, but what 10 y/o isn't?) who wants to play football, wrestle, etc, and I'm too nervous to do those things.

Anyway, sorry to vent my frustrations here, but it feels good to get them off my chest.

I'll see if I can get the others to post. Some have found that if they get their hemoglobin up, the platelets fall and vice versa. It's like a see saw.

Yes, the unknown part is driving a lot of people crazy lately. The only explanation I know and believe is that there is a genetic predisposition to an autoimmune disorder, something comes along to trigger it, and your body begins to make antibodies. Those antibodies can come and go; they may not always be present and cause problems. Remissions are possible.

Yes, ITP can put a damper on your life, but at least the doctor didn't admit you and you can still enjoy family at home. As for your son...board games and video games would be great now. My son was about 10 when I was diagnosed but I was lucky that he didn't jump on me...I was the Mom!

I sent an e-mail to one of the members with both ITP and AIHA. Hopefully, she will respond.

Hi there.
I have both ITP and AIHA, and here's what I experience. My two conditions are like a see-saw. If the platelets are up, the hemoglobin is down. But I've been lucky because my ITP is usually in remission -- only bad sicknesses or who knows what crash them. My last crash was last summer, but they rebounded on their own, which was a first for me.

I had a splenectomy in 1995, and it gave me a remission for about 13 years. But knowing what I know now, I wouldn't have done it, because I still find myself on Prednisone from time to time, and without a spleen, that makes me nervous. Also, I have a deficiency in IGA and IGG - which are those proteins that help the immune system. Unfortunately, IVIG makes my AIHA kick into gear, so that always presents a pickle.

My current plan is that if platelets crash, I get one or two shots of N-Plate. I have an astonishing response to the med and I get sustained results with it. But with those great results come side effects. I get numb hands and fingers and dizziness and creepy crawly head. It also sometimes takes my counts to alarming levels (over a million).

For my AIHA, I take prescription folic acid, B12 shots every two weeks, iron twice a day and just watch my counts. If hemoglobin goes too low, I have to take Pred, there's no other recourse for me other than the more serious chemo-type drugs.

It is extrememly frustrating to have both conditions, but right now, things are going well.

I hope this helps! Let me know if I can shed anymore light.
Jill

Thanks Jill. Hearing from someone else with both does make me feel better.

My doc has mentioned the splenectomy, but I don't get the feeling he's all that eager about it. (And, honestly, neither am I!)

I guess I'll just have to ride out this Rituxin course, and see where I am in a few weeks. If my numbers aren't climbing, we'll have to try something else. But it is nice to know that there are other options between the Rituxin and the splenectomy. So that does give me some hope.

Thanks, Jill!

And thanks to you as well Sandi. You've both made me feel a little easier, which I definitely needed.