Rheumatology appointment today

Caitlin's appointment with her rheumatologist was this morning. We saw a different one than we usually see and I did not like him at all. (No people skills!) He asked so many questions about the trial drug and kept asking if I understood what this drug does. He went on to say that she may have Lupus but only meets 3 of the 4 criteria for the definitive diagnoses. (Positive ANA, ITP, Positive dsDNA) Reminded us to always apply sunscreen everytime she goes out. Anyways, he wrote us a prescription to get her started on Plaquenil.

We've gotten back most of the labs already. All looks good, but her wbc is pretty low again. Not going to worry about that at this time. ESR is higher than last time. C3 and C4 complements are within the normal range. I was reallly surprised her platelet count came back at 116 because Caitlin has had all kinds of bloody noses over the last two weeks, but the hematologist reminded us that this is probably weather-related and nothing more. She hasn't had any bruising or petechaie that would have warranted a platelet count sooner and that is usually what I watch for. (Petechaie in certain places more than bruising because she is so active that she gets normal bruising.)

I only have 3/4 criteria too, but the dsDNA plus ACA Antibodies clinched it for me. I'm glad she is going to start Plaquenil; that's a wise choice right now. It may prevent physical symptoms which is what you want. Those are the hardest part about Lupus.

What was her dsDNA?

The first time, it was only 1:20, I thinl and last time it went up just a little to 1:80. I was worried until I read on the Lupus website that many of the people see their dsDNA titers in the thousands. If the titer is higher/lower, does it mean anything? I think it takes a few days to a week to run the DsDNA so we havent gotten today's results back yet.

I was told by one of my Rheumatologists that positive was positive and that was all that was needed for a diagnosis (with the other criteria). I have read that the higher the titer, the greater the disease activity and risk of organ involvement. I think my highest ever was 88, and it has actually been negative the past three years. When it was at 88, I was having the most symptoms then - that's when the neuropathy began and I was starting to have autonomic problems as well (blood pressure drop when standing up and nearly passing out). I can't say I've been symptom free since it's been negative though, so I wouldn't say remissions occur when the dsDNA is normal. There can be correlations with the titer but not always.

I hope that answered your question. Not a very direct answer, but it's what I've read and experienced.

dsDNA is still positive, but they don't post the titers on MyChart so I won't find out until the end of next month when we go in to check her platelet count.

I wish I knew what was "normal" vs what was Lupus-related. I took her to a clinic Tuesday night after she stayed home from school and swore she had the flu. When her flu & strep test came back negative, I told her that she was going to school the next day. She took that as "I think you're faking it", but I really didn't mean it that way. She was crying really hard saying that I think she just wants to miss school and she really doesn't. Then she's been having alot of problems with extreme thirst and going to the bathroom all the time, with burning in her urine. So I had them run a test for a UTI and that came back negative as well. I've seen how much she's been going (sometimes it's 4-5 times an hour) so the doctor said he'd send of the urine to culture it and see if bacteria grows. She is still having a little bit of burning, but it's not as bad now and the bathroom trips seem to be normal now.

This is frustrating. I don't know when something is serious and when something is not. I was scared about the UTI because I get kidney infections almost within the hour that I realize I have a UTI. (It's that fast because I don't know I have one until it's too late.) I've also lost her prescription for her Plaquenil so I need to call the dr to call it in. But at the same time, I'm almost too scared to have her start it because she has perfect vision. And I have all the retinal problems. Then, another thing...how can it make me feel good when it says that Plaquenil can be fatal to children? (I know, I know...I'm reading too much into this!)

Oh Pauline. I'm so sorry you are going through all of this. I know it's so hard.

I'll try to help as much as I can. To be honest, feeling flu-like was one of my very first symptoms. It would happen every few weeks and last a few days. I kept thinking I was getting sick, but it seemed to occur way too often. At that point, I wasn't even thinking about the possibility of Lupus and wasn't seeing a Rheumatologist. When I was finally started on Plaquenil, that symptom did get better. I still have those days, but it's not as severe. Did Caitlin have a fever? All I can tell you is to listen to her. Just ask her how she feels and listen. There isn't any way to prove Lupus symptoms so you can only go by what she is telling you. If she is crying, I'd tend to think she feels bad. It sounds like she usually pushes herself with her sports and activities no matter how she feels, so if she stops pushing, maybe something is wrong. Make the rule no school, no sports that day.

As for UTI's, I also go through that all the time. I feel like I have a UTI but tests cannot confirm it. They usually find a few white cells and a bit of blood, but the cultures never show anything. That can also be a common Lupus problem and it's most likely due to inflammation rather than an infection. Cranberry juice and Cranberry pills can help, as well as an OTC called AZO. It will turn the urine bright orange, but does help the symptoms. You might already know about it.

As for Plaquenil, it has not affected my vision at all. It is generally a safe drug for most and I think the good that it can do can really outweigh the possible harm. I've read that it can be harmful to children but I don't think they would prescribe it if she were not old enough. You did say they were pediatric rheumatologists?

Sometimes Lupus can cause a person to feel really bad. If Caitlin does in fact have Lupus symptoms, it can be just as bad as having the flu. That's the thing that people don't understand. Normal people stay home when they have the flu. People with Lupus don't have that luxury because it happens too often to give in to it. Life has to keep going on if you want to graduate and keep your job or raise your kids. It can be difficult. All I can say is take it one day at a time for now.

Thanks Sandi for explaining that! It makes sense. Now that I think about it, this is the 2nd time in a few weeks that she s complained about feeling like she has the flu so I will keep my eyes open for that. She does have a fever but its almost always low grade (99-100.5). I dont worry about fevers until they're 102 or over.

You are right...she pushes herself no matter how bad she feels and she did have me write her coach a note allowing her to sit out and I never have to do that. And thanks for calming my fears about the Plaquenil. I know deep down, I need to get her started so I will make sure I do that this weekend. Thanks again!

Hi Pauline, My daughter Emmy's health has been similar to Caitlin's this past year. Though, she has been completely healthy except for the ITP. Right now she is in a bit of a remission from Rituxan. But the doctor at Seattle Childrens (who is considered to be a guru on Lupus) put her on Plaquenil last Feb 2010 and told us she thought is was "safe enough to be in the drinking water" She has since tested negative for any Lupus antibodies but still has a ANA of 1:320 (in July 2010) Could be because of the Plaqueni??? The doctor also told us that Plaquenil could possibly prevent Lupus from actually occurring or getting worse. When we decided to start the Rituxan I chose to take her off the Plaquinil because I am of the thought that less is more and my sister is a Physicians Assistant and didn't like what she read about it. We are waiting for another series of tests before I decide to start her on it again. She still has perfect vision after being on it for 6 months and no signs of Lupus.

I've read that also - that Plaquenil can delay or prevent a Lupus diagnosis. It is known to hinder antibody production.

Your sister didn't like what she read about Plaquenil? I take about 8 medications and I consider Plaquenil to be the safest of them all. I do go to the Ophthalmologist every six months faithfully and get the tests they recommend. The thought of ever having to go off of it scares me, because I really believe it keeps things under control.

I do hope the Plaquenil will help some of her antibodies disappear! That would be nice!

Caitlin DOES have the flu now. Her fever went up to 104 yesterday so I knew she had to have more than just a cold. Took her back in and she tested positive. Due to her being on the Tamiflu, I decided to hold off the Plaquenil but I have filled it. I will start her on this when she feels better. My other daughter has the flu as well, but her fever is staying right around 100-101, so not too bad. Both girls feel miserable, but they said the headache seems to be the worse part. Hope both feel well enough to go to school tomorrow, but I wouldn't be surprised if they miss tomorrow and Tuesday.

I'm sorry they have the flu, but glad to know Caitlin has a real reason for feeling sick. Hope they get better soon!