ITP then Pre-Lupus??

Hi Everyone,
My daughter was diagnosed with ITP at 19yrs old-Hospital stay of 11 days-nothing working-platelets 1,000. Desperation lead to Doc's trying large dosing of steroids in IV. It stemmed the attack, finally. She's 23 now and complaining of joint pain and can't hold onto things or press palm & fingers together as if praying-due to inflammation. Rheumatoid doctor has her on a malaria drug for "Pre-Lupus". Is that a diagnosis of Lupus, or not? She is doing well on the meds-swelling gone, joint pain very infrequent now. Thanks to anyone who answers with some insight. Marilyn

Sandi is our moderator, and really knows her stuff regarding Lupus, but since she is not online I will share what little I know.

Regarding your question whether it is Lupus or not, I think the "pre-lupus" diagnosis means your daughter does not have quite all of the criteria for Lupus. Often the symptoms come first, and the antibodies show up later, and can even come and go.

I am guessing that your daughter is taking hydroxychloroquine (Plaquenil), which is effective in treating a number of autoimmune conditions (including ITP!). The fact that it is helping your daughter probably does not indicate whether she has Lupus.

Her inability to press palm and fingers together is called "ten-finger flexor synovitis" and is a common feature of Lupus.

This is an interesting clinical article regarding diagnosing Lupus when some of the symptoms are incomplete or vague:

www.thelupussite.com/altcriteria.html

Hi Marsy. I'm sorry to hear about your daughter. I can explain what I know; I have both ITP and Lupus (although the ITP has been in remission).

As Rob said, symptoms of Lupus can appear sometimes before it can be diagnosed. The reason for that is that it can develop slowly and although physical symptoms may be present, the antibodies/required labs are not present yet. Do you know what labs she has had and what the results were? I had symptoms a year and a half before I was diagnosed. I had a good Rheumatologist who monitored me and he did recognize the symptoms as possible Lupus. I was also prescribed Plaquenil before diagnosis. As you have seen, it can help the symptoms and can possibly even prolong a diagnosis since it can inhibit antibody production. That is a good thing.

I know it is hard to be in between - you see Lupus symptoms and are receiving Lupus treatment with no definitive diagnosis. This is really all that can be done right now and you don't want a diagnosis until the doctor is sure that it is Lupus. That will require certain elevated labs that meet a certain criteria. As I said, it took me a while to get there too and it was a devastating day when I did finally get diagnosed. I was one who was happier to not have to hear that word. Lupus can be difficult to live with.

It's possible that your daughter may never get a Lupus diagnosis, or it could take years. Sometimes it remits and never develops enough to be diagnosed. That does not happen often, but it is possible. There are some things your daughter can do to prevent triggering it. Those things are: Avoid sun exposure as much as possible, stay out of tanning beds, avoid excess stress, avoid sulfa antibiotics and avoid getting sick (as much as possible). Those are all known Lupus triggers.

ITP can be a symptom of Lupus and at times, it can be the first symptom. It's on the list of criteria. I was diagnosed with ITP 8 years before I was diagnosed with Lupus, so it can take a long time.

I can answer any other questions that you have so please just ask if you have any.

Rob, Thank you for this informative information. Having more information is better for me than my imagination is! The whole thing is scary. I would prefer this be me and not my daughter. With knowledge we will manage. Thanks again, Marilyn

Sandy, Thank you for this wonderful insight. It has indeed helped calm my nerves a bit. I do not have her test results with me but she just told me her blood work is improving so the doctor is "happy he decided to keep me on the malaria drug". I will remain hopeful that she may never develop Lupus. I guess I am suspicious as she presented with ITP in an acute state. That was scary enough when the known treatments weren't stopping the attack. i am sending you wishes to stay healthy and on top of this thing!
Thanks again, Marilyn

Feel free to check in any time. Keep us updated on your daughter. Plaquenil can calm Lupus symptoms and labs.

Most do present with ITP like that. Sometimes counts go down slowly but we don't know it until they get really low and symptoms appear. Then all heck breaks loose and panic ensues. It is rare that people are aware that counts are dropping slowly. It happens, but most of the time it seems to be a sudden thing.