Splenectomy and maybe Lupus

Sandi: I am responding to you from over on the splenectomy successes page.

So far the only labs I have had are the ANA screen which was positive with a 1:320 homogenous pattern. My ESR and CRP are only slightly elevated and I'm told this is due to inflammation. Seriously my knees swell up like balloons and they hurt like nothing I have ever felt before...they also feel dislocated...its very hard to describe. My white blood cell count has been anywhere between 13 and 18,000 since April and infection has been ruled out. I tested negative for lyme and the RF factor. I'm told that the rheumatologist will do more tests and there are mores specific lupus symptoms that I'm learning about. Some days are better than others but most days I am completely exhausted and all of my joint hurts but especially my knees. I also itch severely at times and break out in hives after getting out of the shower. Weird? I seriously feel like I'm 43 going on 85.

I've had some issues since I was a teenager and had ITP and I wonder if any of them have anything do do with not having a spleen, ITP, Lupus, or autoimmune disorders in general. I guess I have a lot of questions for the rheumatologist!

I've had cervical dysplasia for which I went through 2 cone biopsies. I had my right ovary and tube removed due to a borderline tumor. I've had a couple of bouts with kidney stones. I have degenerative disc disease and have had surgery on my back 3 times. One of those times was to clean out a strep B infection that I contracted during surgery...I was also on IV antibiotics for 6 weeks for this.

So I've always had issues here and there but I've always known what they were and they were and they were resolved. I have no idea this time. So if its not lupus, what else could it possibly be? I just really want to get back to as much of my old self as possible.

Thanks for listening.

Hi Janet:

My ANA was the same titer as yours but I have the speckled pattern. It was the first thing that showed up in my blood work. This was in 2004, I think. I saw a Rheumatologist who did the more extensive blood work, but everything else was negative then. Oh - I did have an elevated SED rate in the 60's. He assured me that I didn't have Lupus, but did continue to monitor me every 4 months and helped to manage symptoms. I was having a lot of muscle stiffness and pain, and felt flu-like all the time. Over the next year and a half, my blood work began to show more positives and elevations and in 2006, I got the Lupus diagnosis. My C3 and C4 were out of range and my dsDNA was elevated. I also had APS antibodies and that clinched the diagnosis.

It's odd how people describe Lupus pain; I have a friend who describes her leg pain as feeling "raw inside". You describe yours as "dislocated". I have always just said "stiff and painful" and "feels like I'm not getting circulation to muscles". It doesn't sound so bad when you say it, and there is no way to get people to understand how severe and debilitating it can be.

I also have degenerative disk disease and had spinal stenosis. I had ACDF surgery in April of this year. It was well worth it! It dramatically changed my neck pain and range of motion. Now I have a stress fracture in my foot that I'm dealing with.

Your question: So if its not lupus, what else could it possibly be? I don't know. There are many connective tissue disorders and they can overlap, so pinning it down isn't always easy. If you don't get any results this time that point to a diagnosis, it does not mean that nothing is wrong. Lupus can develop slowly, and you could be told that you don't have it. In that case, I hope you have a good Rheumatologist who does not blow you off, but monitors you and takes your complaints seriously. I had one that blew me off without doing any blood work. He just looked at me and told me I was fine. That ticked me off because I'd already had ITP and that is one of the symptoms. Anyway, the ANA alone doesn't carry much weight so you might not get any answers right away if labs come back okay. Some people feel relieved at getting a diagnosis; I did not. I always feared Lupus so when I did get the diagnosis, I was devastated. It's pretty life-changing for some people.

Let me know how the appointment goes.

Oh I will definitely let you know! I'm also going to see a hematologist to try to figure out what is up with my WBCs. MY GP seems to think that my high WBCs and ANA screen and inflammation are all unrelated. I've decided to go back to to see the hematologist that treated me for ITP when I was a kid and I'm hoping he will be able to answer some of my questions. He was really young (obviously) when he treated me for ITP but he's still around and actually has his own center for blood disorders in Bethesda, MD. I live in Baltimore and my husband thinks I'm crazy because we are next door to some of the best medical care in the world but I find comfort in going back to my hometown and seeing a doctor who I'm pretty sure won't blow me off!

I will keep you posted!

Janet

Okay. Usually with Lupus, white counts are low, but there are no definitives. Good luck!

Hi Sandi,

Sorry it has taken me some time to write. I've been trying to wrap my head around all of this and it has been scary and depressing. I met with the hematologist today and that gave me some peace. I had an appointment with a rheumatologist at Hopkins last week and had numerous labs done. The positive ANA was confirmed. I also tested positive for a host of other tests such as dsDNA (45 was the number) and all three antibodies for antiphospholipid syndrome. So, not only is it likely that I have lupus, but I also have this other clotting risk. I found this rather bizarre considering that when I was teenager, my problem was that my blood DIDN'T clot. The hematologist explained all of that to me today though and told me I needed to take an aspirin everyday as a precaution and that having the antibodies was a risk factor only. Although, he did say that my numbers are very high and I need to be monitored closely. My anti Coombs was negative as was the HLA B27 Antigen and the Complement C3 and C4 are within range right now.

There really is no reason for the high white count other than the inflammation in my knees and right now it just needs to be monitored. The rheumatologist is not ready to diagnose me with Lupus yet becasue the only definitives are the labs and my seriously sore and swollen joints. He is starting me on Plaquenil and seems to expect a lupus diagnosis sometime in the future. He said I definitely have APS. So thats where I am right now - not really sure how I feel.

Janet

Janet - I'm so sorry to hear this. I know exactly how you feel...I was hit with a Lupus diagnosis and an APS diagnosis on the same day. I got the call when I was at work. It does take some time to get used to it. I went from dealing with low platelets and treating ITP to taking aspirin, like you are. I had nightmares for weeks about clotting and dying from a stroke. Funny, I never had that sort of anxiety about ITP. Dealing with APS is much more difficult though and a lot scarier.

I think it's very wise to start Plaquenil now. It can calm down the antibodies and help symptoms, maybe even delay the diagnosis. It's also supposed to help protect against clots, so it has multiple purposes.

Having Lupus is not a bucket of sunshine; it can be difficult to deal with multiple symptoms and to try to get and keep things under control. I struggled to work for 7 years after the diagnosis and finally gave it up three weeks ago. I'd been at my job for 16 years, but was way past a burn-out point and could not function anymore. I was more of a detriment to the company than an asset. It can be life-altering in so many ways. You do learn to manage it though and take each thing as it comes. I stopped worrying about what might happen a long time ago. I found that symptoms can come and go, so once something begins, that doesn't mean you are stuck with it forever.

When I was diagnosed, there were two women with Lupus on here who became my life-line. They calmed me down when I felt overwhelmed and I clung to them like clothespins on a line. They got me through the worst of it. I'm here for you too if you need me.