Splenectomy and Lupus

Hi All,

I've only recently found this great site and have been reading through the wealth of information on here. It's great to hear about everyone's different experiences and the general sense of optimism / support among the group is rather inspiring, so I'm really glad to have found you all.

I have a quick question - I'm wondering if anyone knows whether having lupus affects the success rate of a splenectomy for ITP?
I'm not sure if it's just a hunch I've always had or if it's something I've read somewhere, but I always thought that having lupus might reduce the success rate of a splenectomy...

Anyone else have views?

I don't know that Lupus affects the success rate, but I believe that having Lupus can cause more complications without a spleen. Some people with Lupus (and some with only ITP), have APS antibodies that can cause clotting. Recent research has shown that being asplenic can raise the risk of clots, so you have a double risk there. I've had the antibodies off and on, so testing for it does not always catch it.

Also, those with Lupus tend to have lower white cells and are on immunosuppressants often, so the risk of infection also goes up.

Those are my thoughts based on the research that I've done. I've always been very happy that I kept my spleen; I was diagnosed with Lupus 8 years after ITP.

I think you're asking a really good question. And I don't think the data is available. You'd think there would be some systematic variance in success of splenectomy and lupus could be a factor worth looking at.

It seems like most of the lupus people here have had good success with Rituxan and limited success with WinRho.
Erica

Yeah, I'm trying to hold onto my spleen...but a friend of mine (with Lupus and not ITP) recently had to have a double hip replacement due to the effects of pred. She's 28!
So all of the sudden it makes a splenectomy seem not too bad hehehe...

I've heard of splenectomy successes for non lupus ITP patients, but have no idea what it's like for those of us with Lupus (I guess that's probably because there's not that many of us)

I've been on Prednisone for the past five years due to Lupus, so having a splenectomy wouldn't have saved me from steroids anyway.

How are your counts? Have you tried Rituxan?

Hi Sandi,

Yes, that's a good point. I haven't needed long term pred for my lupus yet but who knows when that will happen.

My counts have been pred dependent. Without pred doses in excess of maybe 20mg a day (I weigh 45kg), they slowly drop below 30, then I bump up the dose again for a few days and they go back up.

I have tried Rituxan and it worked for like 1.5 years (was really good!). But I had a bad reaction to it so the doctors are reluctant to give it to me again. Actually, I'm pretty scared to get it again because it affected me for months afterwards...but then I get tempted when I think about the remission.

They've finally started me on this new drug - Nplate...I got my first dose last week and it looks pretty promising so far. But the headaches and fatigue are not very nice so I'm just thinking about my options.

What about you Sandi? What have you tried that's worked for you? How are you tolerating the pred?

Emily:

I had Rituxan twice and the second round gave me a remission - 6 years so far. I don't totally credit Rituxan though. I tolerate Prednisone just fine, no side effects. I take between 10 and 15 mg's a day; I don't think I'd do as well with 20. I feel so much better on it than off of it.

If you had a bad reaction to Rituxan that affected you so long, I wouldn't do it again either. I had a reaction like that (serum sickness) and can't do it again either.

Emily, ask your doctor about Imuran. I had a good remission to Rituxan and a bad reaction, like you. Dr. Liebman at conference told me never have Rituxan again, and that Imuran usually works well for people who respond to Rituxan.

Erica

I don't know about lupus and am learning...:-}

but I do know I lost my spleen as a direct result of ITP and it was succesful in that it raised my count back to normal levels.

Though I do still get odd bouts of ITP and recover with treatment where as previous to splenectomy in 1994, they weren't recovering so yes it is succesful on that score!

though life without a spleen does have its very scary moments though I have been lucky and survived meningitis and septic shock though am sure some of it was due to lack of information. Keep your spleen if you can is my advice but life is pretty normal afterwards though am ultra sensitive to body change after the 2 major illnesses but that be just me

Ive responded really well to Imuran. Ive also responded well to Rituxian--Ive used it 3 times. getting a yr to yr remission each time. Do you take plaquenil? I only treat my ITP when counts get below 20. Once up I taper off treatment. Ive done high dose pred off and on since my dx. one thing my doctors have pushed for is I used to do boniva and take calcium supplements to combat possible bone loss. So far its work my bone mass is normal for my age. So that might be something to look into.