20 years with ITP, later developed SLE and APLS

I'm a bit nervous... so, here's the situation:

I was diagnosed with ITP when I was 14 with a platelet count of 20k. They prescribed me steroids, and my counts bounced back with no problem. After a couple of rounds, I was fine and hit a remission until I was 22. That again was resolved with steroids.

At 24 I was pregnant with my daughter and my doctor discovered I had Antiphospholipid syndrome. I had to give myself heparin shots throughout my pregnancies. However, my platelet count stayed in the 200's.

Then at 25, I had a horrible cold/flu thing, that when it went away finally, I went paralyzed from the waist down. At first they thought it was Guillame Barre, but it turned out to be transverse myelitis. I had a rheumatologist and infectious disease doc that told me I had lupus. Anyway, tons of steroids, cytoxan, and physical therapy, I'm relatively back to normal.

A couple of years later, I had aseptic meningitis. So, again, steroids.

The next year, my platelet count dropped to 5k, and they gave me Rituxan.

Found out there was nerve damage as a result of TM, developed Arthritis, finally docs accepted diagnosis of Lupus when I had Lupus Nephritis.

I was on Cell Cept for the Nephritis, and it seemed to have kicked it. My platelet count maintained around 80.

Then March of this year my platelets started dropping again. More steroids and Rituxan -- but then I got serum sickness. They tried to give me Rituxan, again. Unfortunately my body reacted poorly, so it looks like I am allergic to Rituxan.

Now, it seems like we are a revolving door of IVIG and platelets.

Because of insurance complications, we've been waiting until my platelet count is about 20k, go to the ER, get IVIG, platelet count goes to 70k, go home.

Now, it seems to me that the IVIG is not working as well as it used to. I went in once with a platelet count of 12. An hour after the IVIG my platelets were 13. They gave me platelets, sent me home with 30.

BTW - I've been averaging er visits every 3 weeks.

This past weekend, I went in at 24. They gave me IVIG and then my platelet count was 16. I received platelets and my count went to 25. Because it was Christmas weekend, my hematologist let me go with strict orders to get a count on Monday. My count is 17k right now.

The nurse at my hematologist's office said she talked to the on call doc (because my hematologist is on vacation to Tacoma) said I could wait until Thursday to repeat the blood test. I guess that may be wise, maybe the count will bounce back on its own?

She had been trying to get a hold of my hematologist, but in the meantime I could go to the ER if I wanted. In the past it was my doctor that admitted me. I'm not sure how thrilled I will be breaking in a new doctor. I've read other posts, and it seems that 17k isn't as big of a deal as I have thought.

I still have my spleen. There has been some discussion on whether they should remove it or not. It seems with all the autoimmune medications that it may not be a good idea. Also if may not be as effective because it could be secondary to Antiphospholipid Syndrome or Lupus.

I guess I'm curious if anybody has any suggestions or has anybody been in similar situations? I don't have any active bleeding, I have some bruising, but it's not quite scary looking.

The only other weird thing is that my sugars spiked in the 500s today. (Steroid induced diabetes) I've taken insulin to fix it, been PERFECT on my diet (yeah, I know, I should be perfect everyday)

I'm sorry if this turned into a crazy woman's ramblings. I guess I'm trying to figure out what I should do. I'm wondering if anybody has had problems with treatments not working as well -- or not at all. I know there are the drugs that stimulate platelet production, but is that something you can take with the Antiphospholipid syndrome (I just love spelling that out if you couldn't guess!!!)

Thanks in advance!

Hello. You're not alone, there are several of us with Lupus and ITP. I have ITP, Lupus and APS Antibodies. I developed Lupus 8 years after being diagnosed with ITP (1998), but the APS Antibodies were way before the other two.

I have been in ITP remission since I had Rituxan 6 years ago. I also had serum sickness and can't have Rituxan again. It seems that a lot of us with Lupus have bad reactions to Rituxan. Just an observation.

How are your symptoms when you go to the ER? Most of us don't go to the ER when we suspect counts are down unless it's an emergency. Do you respond to steroids?

There have been recent articles that suggest that splenectomy isn't a good idea for those with Lupus and ITP, and especially for those with APS. I can post them if you'd like.

Hi - I have lupus and ITP too. I'm in remission from Rituxan but I had an allergic reaction also and can't use it again.

I wonder if you have considered the drugs that increase platelet production - nPlate and Promacta? I don't think any of us on this board with lupus have tried them, it's worth a look and a think.

Can you manage without treating when your counts are very low? Some here go years and years with very low counts usually because no treatments work.
Erica

Sandi - I don't think my platelet count responds to the steroids, but the docs keep me on it. I'm sitting on a 25mg dose, even though it frustrates the interns because of my sugars going nuts.

I usually only go to ER if I have a bleed that doesn't stop - gums usually or a really significant bruise - big, purple. But lately the doctor's office sends me in at a 20k. I think that is over-reacting a bit, but I think he's a little paranoid in general.

eklein - is there any problems with Nplate or Promacta with the Antiphospholipid antibodies?

Thank you for your responses. I don't feel as alone!

Hmmm good question about the APLS and thrombopoetins, CiS. I don't have APS and my next treatment if I need one will probably be Imuran so haven't looked into it. I bet Sandi knows.
Erica

I don't know for sure, but I would certainly question that. I sort of ditched the idea for myself if ever needed because of that. I don't know if there have been any actual studies yet.

Have you tried Decadron? What's your name, by the way?