My 19 year old daughter just go diagnosed with ITP

My daughter just got diagnosed in April after having a strep throat the was still bothering her after being on antibiotics. She did also have some unexplainable bruising prior to the strep throat. They did some blood work and found out her platelets were at 6000. She started on 70mg prednisone platelet count went up to 168 and meds have been reduced down to 40mg. Her platelets have also gone down to 158. We are going to see a rheumatology doctor tomorrow to try and get some more answers. She also did a "ANA" test which came back borderline positive. She has no signs of lupus and over all feels fine.
What are some questions I should be asking the rheumatologist? We are at a lost as to what is causing this. All her other blood work is normal.

As far as i know ANA test only indicates Autoimmune conditions though it does show positive for lupus it also shows positive in 40% of Auto Immune Hepatitis and as far as i can find out ITP can also give a positive response on ANA. So i would not jump to thinking your daughter has lupus as well straight away.

Also 158K it in the normal range so thats good and it is normal for platelet count to go down when on reducing dose.

I am no expert on ITP as i was diagnosed about the same time as your daughter but i know about ANA having ran then in the lab.

Only advice i have is having a conversation about the treatment plan, obviously steroids are not everyones favourite treatment but if they can get her down to a low steady state dose that would be great unless steroids disagree with her (I have been on steriods for 10 years for other autoimmune conditions). But basically i think knowing what they are planning on doing helps so you and your daughter know if a doesn't work then b is what ever second line treatment your area uses it also helps you to get to know a bit about what that might be and get educated on it and that might ease both your minds if they time came. Also stops either of you getting blindsided my medical mumbo jumbo at a later stage.

As i said i am still new at this too so i am no expert but i researched all the meds my doc spoke to me about and it helped me to know what to expect and made me feel better when they gave me them.

Hope this ramble of incoherent thoughts helped

Mark

Jojo:

A borderline positive ANA is nothing to be concerned about. I'm even surprised that she is being sent to a Rheumatologist with no symptoms and a low titer ANA. An ANA can be borderline positive in people without autoimmune disorders. I assume it was 1:40 or 1:80?

Mark is right though, it can indicate that there is an autoimmune disorder, but it does not necessarily mean Lupus. Normally you'd see a higher titer though, such as 1:320 and up.

ITP can be the first symptom of Lupus and the ANA can change in time. For now though, if all other blood work is good, there is no reason to think there is anything wrong other than ITP.

Thank you for all the advice.
She is a college freshman & the steroids are making her puffy & she says just makes her feel not good. She is very active & exercises consistently. Wish we knew why this happening to her.
Her "ANA" test numbers are 1:160 speckled. Doctors had said this is a borderline positive. So is this? These numbers are all new to us. I know with Lupus they say 4 out of the 11 symptoms she just has the platelet count being low. I guess im just scared that her platelets have consistently dropped as steroids gets reduced. Thank god all other of her blood numbers are normal.

1:160 is a bit more than borderline, but it isn't considered high. There are many other tests that also determine Lupus, so they will probably run some more blood work to check things out. The ANA can be elevated just because of ITP.

Platelet counts usually do drop as the steroids are tapered, and has nothing to do with anything other than ITP. Sometimes the counts will plateau and stay up. It can take some time to find the treatment that will hopefully, cause remission.

You may never know why this is happening. None of us do. It's just a genetic predisposition. My daughter has Graves Disease and I don't know why that happened either. I have Lupus and ITP. It stinks, I'll tell you that!

Sandi did you have any lupus symptoms before being diagnosed? Thank you for the clarification on the "ANA" numbers. Do you lead a fairly normal live? How long have you had this?

Yes, I had ITP for 6 years before I developed physical Lupus symptoms. Two years after that, I was diagnosed. It took two years to diagnose because all I'd had at that point was an ANA of 1:320. That, along with the physical symptoms, did not meet the criteria. I was being monitored by a Rheumatologist every four months and slowly over time, I began to have more positive blood work. I've had Lupus for 6 years.

I still work, but I wouldn't consider my life normal. I rarely go anywhere other than my job. Between the symptoms and medications, it's not been easy. Lots of people with Lupus do well though and lead normal lives.

How did it go with the doctor?

Doctor visit went well. He too says her "ANA" is moderate and that having "ITP" can make the "ANA" test show positive.
He has ordered 3 more blood tests. We will get these back in two weeks. If these come up negative then we just have the "ITP" to deal with.
Since she is showing no physical signs of Lupus he is confident tests will be negative but there is that chance.
Doctors all agree that she got a viral infection that is causing this.
She moved in to college dorms in September and has been sick ever since then. Then she got strep throat.
The strep could have been there for months. She just brushed it off as a bad sore throat before finally going to doctor.

My thought & prayers are for you Sandi

I figured that's how it would go. He sounds like a decent Rheumatologist. A bad one would have sent her on her way without doing additional labs. I had one like that. Some Rheumatolgists dismiss patients if they don't come in with a limp, swollen joints, a red face and bald spots. Okay, slight exaggeration, but you get my point. Let me know how the results are!

Yes, an infection could have triggered this. It happens all the time.

He seem like a nice Doctor. I will let you know test results when they come in about two weeks.
So if it is a viral ITP can this still take time & lots of different meds to stabilize?

Yes. It can take time no matter what the cause/trigger/reason.

Good news. All my daughters blood work for Lupus came back negative.
I started her three days ago on 2 tablespoons of Papaya leaf extract.
Her numbers last week were 152 today they were 235.
So happy I don't know if the papaya had anything to do with her numbers going up, since she has only been on it three days.

That's good news! Keep us posted.

Update. My daughter has been off steroids for a month just did another cbc and her platelets are down to 64K.
They are taking about doing a round of Rituximab if they drop to 50K.
Does anyone know the pros & cons of this Drug?

There are a few pros and cons.

Pros:

When it works, a person can have a remission of a year or more.
Very few people have side effects.
Four infusions in a month and it's over.

Cons:

It may not work.
If a person does have side effects, they can be nasty (this is rare).
It's expensive.

Thank you.
Start first treatment tomorrow.