Some Support Needed

Hey guys,

I don't know what happened but I placed a post here last night and now it's gone. I wonder what I did wrong?

Anyway, I had my follow up appointment with my hematologist on Thursday to get the results of my bone marrow biopsy and a series of blood tests. Everything turned up normal from the biopsy but the blood tests showed that I'm positive for Lupus Anticoagulant. I have no idea what to think of this new diagnosis. Does anyone here have ITP and Lupus Anticoagulant?

My platelets have been under 10K for the last 9 or 10 years and I start my first treatment of Rituxan this Wednesday.

Kelly

Kelly - it's at the bottom in the APS section.

Sorry Sandi, I don't see an APS section. I did a search with my user name and I still can't find it.

www.pdsa.org/forum/21-antiphospholipid-syndrome.html

Very bottom of the main page - Antiphospholipid Syndrome

Sandi, it isn't there for all of us. I don't see it and when I click on your link it says that I don't have permission to see that page.

I just clicked on the link too and was told I don't have permission to see the page.

Hi Sandi,

I was just searching through some old posts and found where you mention that you have APS. Is what I have the same thing?

You had mentioned that perhaps smaller doses of Rituxan or less doses may be more beneficial so as the platelets don't get too high, is this something that you still believe and you feel I should mention? What are your platelets at now and when did you start your treatment (aspirin)? Or should I ask, is there a risky number of platelets to have with APS? I also read that being without a spleen can cause clotting issues which is now another concern. I'm wondering if my IUD should be removed, or should I wait to see if I respond to Rituxan first?

Sorry for all of the questions but this really has me freaked out. My hema told me that she has patients with ITP or APS(?) but none with both so this is new to her as well. I would truly appreciate any information or even just support with this new diagnosis. I know that all of this needs to be discussed with my hema but I've really valued your opinion and knowledge Sandi over these last however many years.

Thanks so much,

Kelly

Hmmm - I don't know why no one can see the APS section. Oh well, nevermind, we can talk here.

Kelly - smaller doses of Rituxan may not necessarily result in a lower count...the studies state that the results for full doses and smaller doses can be the same.

Yes, the Lupus Anticoagulant is one of the antibodies for APS.

I was diagnosed with Lupus right around the same time I went into ITP remission from Rituxan, and that was also when the APS antibodies were tested and elevated, so I got that diagnosis as well. At that point, I started aspirin. My counts have pretty much been over 200k since then, and that was in 2005.

People with APS antibodies can clot with low platelet counts, so it may not be true that the higher the count, the greater the risk, although it seems like common sense that that could be true. Personally, I prefer lower counts for that reason, but there isn't anything I can really do to change that. I have two hematologists; one for ITP and one for APS. My ITP hemo was not familiar enough with APS to deal with it, so he referred me to someone else. I rarely see that doctor since I haven't had any problems.

As for you, you do have several risk factors such as the splenectomy. You're right, that can add to the risk of clotting. Does your IUD have hormones? If so, you might want to discuss having that removed with your doctor because BC involves a clotting risk as well.

APS freaked me out too big time; much more than ITP ever did. Knowing about APS was one reason I kept refusing splenectomy, and little did I know I'd actually end up with APS antibodies. I kept asking my hemo to test me for it, but all he ever said was that my counts go too low to have APS -people with the APS antibodies tend to stay in the 60's and mine went down to under 5k. Apparently, wrong on that one.

Good luck with your Rituxan - and good job on the research! You really have to be your own advocate here, so keep going with that. I'll help in any way I can.

Thank you Sandi!

Why does it always feel better knowing that there is someone else out there going through the same thing? It's not like I would ever wish this on anyone.

Kelly

Kelly:

Before I was diagnosed, there were two women here who had the APS antibodies and I saw what they went through. One of them really had a tough time balancing low counts and blood thinners, and she still clotted. I always felt so bad for them because the juggling seemed impossible to me and I don't know how they did it. They were a big reason that I began to feel that ITP could be easy compared to some of the things people can go through.

Anyway, when I did find out that I had APS antibodies, I was devastated. Those two were the ones that talked me through it and were there every time I needed them. So yes, it DOES help to know that there are other people out there who know what you are going through. I haven't had to really deal with APS and for that I am thankful. It was mostly the fear in the beginning that got me and I've calmed down a lot. You will too. It can be very scary. If you do your research and become familiar with the warning signs of clots, it can really help if you are ever in a situation where you need medical help and they have no idea what is going on.

Hopefully you won't have any problems, but you need to really be aware that you could.

Sandi, who should be tested for APS?

Karen:

If it were up to me (which it isn't, of course), everyone with chronic ITP and/or Lupus symptoms should be tested.

Right now, if I've read it correctly, the Guidelines state that it's not necessary to test an ITP patient. People usually find out only if they clot or miscarry, or if their doctors decide to run the tests for some odd reason. I had to ask a few times to be tested and finally my Rheumatologist agreed. What was so hard about that? Just a little more blood than usual....

The problem with testing everyone is that even if positive they don't want to treat so it simply causes worry. So basically no point until there's a reason.

There's also been a report out recently which says that those with ITP and a few other autoimmune disorders have a propensity to clot anyway and that's without APS.

No, they don't treat anyway. I'd still rather know. I think it could make a difference in treatment decisions, if anything.