Labs from Rheumatology

Caitlin doesn't have Lupus but these were the labs from her rheumatology appt back in Feb to see if anything pointed towards Lupus. Caitlin had a Lupus panel run two years ago which revealed inconclusive results with an ANA titer of 1:1020. She had no symptoms whatsoever so they didn't do anything more. She had another panel run last Nov and her ANA was positive with 1:320. Then this most recent one was 1:40. That usually automatically means negative, right? The only other abnormalties out of 45 different tests were of course platelets, WBC, high LDH, dsDNA was detected, C4 Complement was low, ANA IgG was detected, IPF was real high, neutrophils were low, Thyroid Peroxidase Ab was high.

Overall, I just feel better seeing the ANA Titer go down because that was the only other thing they seemed to be watching other than her platelets and WBC. I know she will see the rheumatologist again in June but I'm not sure that they will continue to follow her unless some more obvious symptoms appear.

Pauline:

Three things concern me: the dsDNA, the low C4 and the Thyroid Peroxidase. With Lupus, the dsDNA is even more important than the ANA. 1:40 is negative or could be borderline, but is certainly low and if that were the only thing, it would be insignificant. It's great that the ANA went down, but that is only one part of the picture. Low C4 is another criteria and the Thyroid could indicate thyroid antibodies. Has she had her TSH tested?

I think the main thing that Caitlin is missing is obvious symptoms. She has had the malar rash, but is lacking most of the physical symptoms such as joint pain, muscle pain, fatigue, etc. It's wonderful that she doesn't have those and I hope it continues because that is what makes Lupus so miserable. The burning skin might be another thing to bring up to her doctor though.

It's good that she is being monitored so carefully. You are doing the right thing.

A high Thyroid Peroxidase Ab was one of the criteria for my Hashimoto's thyroiditis (autoimmune hypothryroism) diagnosis. The one thing I've found from the thyroid boards is that you can have a normal TSH, but still have symptoms if you have the antibodies. In addition to the typical adult symptoms, for children it can impact growth and development. I very much doubt that with all the attention to Caitlin's health that you have any issues, but it would be something to watch for. We have a lot of thyroid issues in both sides of my family. I have a cousin whose family lived very close to an EPA nuclear waste clean up site. Her thyroid stopped functioning when she was approximately 8 and they didn't diagnosis it until she was 12 when they did scans for bone growth.

Thanks for your replies. I haven't seen the rheumatologist to discuss the lab results so I really don't know what I'm supposed to be looking at. I don't think she has had her TSH tested so maybe this is what they will do in June. Thanks for mentioning that so I know what to "look for" or what questions to ask!

Caitlin's labs are similar to my daughters, but she has had only one ANA test done, it came back positive with 1:320, and dsDNA was 19, 10 and below is negative. Her compliment levels are normal, and very low anticardiolipin was detected. They said that she met 3 of the 4 criteria needed for Lupus. So it is not "technically" Lupus, but I think that they are assuming it is going that way. She is on Methotrexate now and tappering off steroids. Her platelets are hovering around 50k, but she just started the Methotrexate. I'm not sure what to think, because our rhumeatologist here decided he didn't need to see her anymore and told us to go back to the heamatologist after he told us it was Lupus. We have been going to Seattle Childrens to try to get more answers. But so far just kind of hoping it will go away within the next year. She is very active and plays select soccer, so it is very hard for her not to be able to play. They told us 50k was safe to play, now they want them to be higher. At what number do you let Caitlin compete?
Thanks, Emmy's mom

Whoa - the Rheumatologist said he didn't need to see her anymore? A patient who meets a few of the criteria for Lupus should never be brushed off and should be monitored at least once or twice a year. I'm not liking that decision.

Yes, we thought the same thing that is why we went to Seattle Childrens, (we are in Idaho and don't have a pediatric rheumatologist in our area). Do you know if Plaquinil can cause platelet loss? It says on this website to avoid it, so I'm not sure if my daughter should be on it or not. In Seattle they say yes, I just don't like her being on so many medications at such a young age and without a confirmed diagnosis... Thanks, Emmy's mom

Emmy's mom-I don't know what Caitlin's dsDNA number was. It just says it was "detected" on the papers I have. (25 pages of labs) I guess I will find out if there is anything to really be concerned about when I take her to see the pediatric Rheumatologist on June 15th.

You asked what number I let Caitlin compete at...well, I have let her compete before when her count was 13, but I wouldn't do it again. Her doctors really don't want her doing any kind of tumbling unless her counts are at 50 or higher. I am a little more lenient and let her do things as long as it is 30 or higher. She does run the risk of getting hurt, but most of the time, they don't really "run into" each other. Soccer is a little more tricky because they are constantly bumping into each other trying to get the ball or block other players. I definitely know how it feels to watch your child be restricted though! It isn't fun and Caitlin and I had some arguments because she felt like I was the one who made the final decisions, not the doctor.

I am not familiar with Methotrexate. What is it for? Her "possible" Lupus or her ITP? If they are treating her for "possible" Lupus, then I agree with Sandi, that they should not have dismissed her. Caitlin's hematologist (also an ITP specialist) consults often with her rheumatologist with labs and specific symptoms that Caitlin has.

Hi, Methotrexate is a low dose chemotherapy drug, (immunosupressive) usually used for RA, it is what the Hematologist suggested in Seattle to help to get her off the steroids, she can't handle the way they make her feel, not to mention the weight gain. They are treating her because her team may travel to New Mexico this summer and she doesn't want to miss it, otherwise they would not treat he. It sounds like you have been dealing with ITP for awhile, it's been 6 months for Emmy this month How did you realize Caitlin had ITP? Did she have a virus prior to symptoms? Emmy had a virus and vaccinations. We have no autoimmune issues in our family.
Thanks for all your help,
Emmy's mom

Yes, we have been dealing with it for a while. It has gotten much easier as time has gone on. We are tired of the dr's visits though so we're ready for her to go into remission. I personally would like to see it go into remission before she starts her period, but we will see if that happens. My other daughter (13 years old) started a few months after she turned 13 so if Caitlin follows the same pattern, she has a little over a year to go.

Caitlin had symptoms long before she was diagnosed. She was diagnosed in April of 2007 after she was sick and had a horrible bloody nose. One of her close friends had the flu so we had an appointment scheduled to see her pediatrician to get a flu test done. She tested positive and I explained about the bloody noses and bruising, and the pediatrician still wasn't concerned because Caitlin was so active. (We had taken her in several times prior with the same complaint.) Finally, I demanded that something be done because I knew something wasn't right and her school nurse had been telling me for a few years that she was concerned about her. The pediatrician decided to look at her all over to see the bruising and she noticed petechaie all over her neck and sent in another dr, who said we needed to get a blood test done. We were told we'd get the results in two weeks and we were called the next morning to get her to Children's Hospital immediately. The dr there told us that they were concerned not only because she had a low platelet count, but because her wbc was so low too and they needed to rule out leukemia. (Scary moment that many of the parents on her have gone through.) They didn't see anything "funny" with her wbc, just that it was low and her platelets were very large so they knew it was just ITP.

Our hematologist has always felt like something else is going on, but has never been able to pinpoint what it is. But until something new pops up, we are just going to treat the ITP and hope that nothing else ever happens. Nplate works for Caitlin, but I hope it brings her to a stable dose very soon. I don't like dealing with roller coaster counts, but I know it's normal with ITP. I hope that your daughter is able to go on her trip with her team. I also hope she will fall within the 80% of the acute cases (most drs don't call it chronic until they've had it a year, and even then...it isn't always a true chronic case).

Scrunge:

Plaquenil is quinine based, which is usually not good for ITP. However, most of us with both Lupus and ITP take Plaquenil with no problems. My counts have actually been normal since I started Plaquenil. Since ITP can be a symptom of Lupus, treating Lupus can also help ITP. Not in all cases, but some of the time.

I've read several articles that state that prescribing Plaquenil for a suspected Lupus patient can prolong or prevent the diagnosis. I believe that. Plaquenil is known to inhibit antibody production, such as the ANA or dsDNA and can cause negative results or lower antibody levels. Since antibodies are what do damage to organs and tissue, taking Plaquenil can really help. I wouldn't worry about her taking Plaquenil at her age unless her doctors are concerned about it. Plaquenil is a pretty benign drug and well tolerated for most, with few side effects. The main thing to worry about are her eyes, and I'm sure you already know about that. Twice yearly exams are a must and will show any problems. I'm all for early intervention with Plaquenil.

some of you might remember me from the old forum. I'm a father that is pretty much in the same boat as some of you. My daughter now 14 was diagnose with ITP about 3.5 years ago. she's had a positive ana from the very beguining,1:1250 in the last labs four months ago. positive dsdna(lowest titter) for about a year now. low C4 for about two years. her plateles have been holding at around 75 for almost a year now(prednison), she is in 5mg of prednisone every other day. no other symptoms, very active, she has never been a bleeder. as i said, the only issue has been her platelets.