change in diagnosis

I don't know if this means anything and the dr never said anything, but noticed on her paperwork, her diagnosis now says "Unspecified Diffuse Connective Tissue Disease" rather than Undifferentiated Connective Tissue Disease. We saw the rheumy last week for a follow-up appointment and since there is still no physical symptoms or new pain, they told her she did not have to come back for a full year!! That is great news for us considering how much these visits with the labs cost us! All labs are coming back the same. I keep hoping to see a change in the dsdna, but maybe that will never happen. Platelet count was great-158 and a little higher than usual due to the shot given maybe 12-14 hours earlier.

The only new thing we really discussed, was Caitlin's inability to wear sunscreen due to welts that form on her face. We really struggled with her getting sunburned really bad last summer and we couldn't figure out why when we were constantly making sure she had sunscreen on. Then we did the same about 6 weeks ago and she had not had a chance to go outside yet when we noticed the welts forming while we were still inside and it looked like she already had a severe sunburn. We washed it off and the welts faded away a few hours later. We have tried many different brands and so far, we have not found anything. It looks like she is allergic to it and she rarely has allergies to anything. The dr suggested we try just regular lotion with a minimal amount of spf in it and so far, it seems to be working. We will just have to limit the amount of time she spends in the sun. We asked again about the possibility of getting Lupus, and they still say she could possibly get it and she may never get it.

On another note, I posted earlier this year that Caitlin had done a solo. She competed again at the end of the season at the Dallas Cowboy stadium and ended up being the top scorer and she won a scholarship, jacket, huge trophy, and a championship ring! If only people knew the challenges she faced to get to this point! I think we'll keep this secret for a little while longer!

OMG my heart stopped when I read the subject! Well, it's not bad news I guess. I don't know the difference between the two; I just know that that is what is stated when there isn't a definitive diagnosis.

Yes, keeping her out of the sun as much as possible is the best thing you can do. I can't imagine how hard that would be on a child. It's sure hard for me and I'm an adult! I love the sun!

Congratulations to Caitlin for winning! That's one amazing child you have there. She continues to surprise me with all of her accomplishments!

Thank goodness, no progression to Lupus yet! I decided to compare all of her labs from Rheumatology and the only real difference I am seeing is a steady rise in her creatinine as well as the amount of protein in her urine. The protein is still very minimal so hopefully this doesn't continue to increase. (Creatinine started at a .2 at the beginning and now it is a .8...still normal, but if it gets above 1.1, then they will start to worry.) Hopefully it never goes higher, but it will be something that I will be watching.

Thanks for your compliments on Caitlin! Very special girl, indeed!

Is she still on Plaquenil? I hope so. Sounds like she has all of the labs that point to Lupus and is just missing the physical symptoms (which is great!). I think I've said that before. Not good about the creatinine and protein - is the creatinine still normal?

Sandi...yes, she is still on Plaquenil. I don't think the rheumatologist will take her off. It does not seem to have an effect on any of her bloodwork and we just had her field test exam on her eyes. Her creatinine is still in the normal range. I am only concerned because I have kidney disease myself and I hope this does not end up being the case for Caitlin since she went from the low normal range to the high normal range within a year. Yes, you are right...all labs point towards it and they're just waiting on the physical symptoms. (Rheumatologist has said that to us several times.) I always hate it when Caitlin tells me she is hurting because I have this at the back of my mind and I try to ignore it because it is usually a one-time thing or directly related to some kind of injury she has had. She does talk about her skin burning off and on but without me being able to see anything, it is hard to justify mentioning this to the dr. (I think it is a small side effect of the Nplate though.)

I also have burning skin and you can't see anything...it's nerve related. Caitlin's could be due to the meds though, hopefully!

Thanks! Another concern has come to mind...I never even associated this with a possibility of being Lupus until I came across something I was reading earlier today. Caitlin is very tan...too tan, really at the point where everyone asks her about it, daily! It didn't really bother either of us until recently, when parents and other kids have been asking her where she gets her spray tan. One mom even flat out accused me of lying and thought I just didn't want people to know I allowed her to spray tan at such a young age. (Silly, I know!) It just seems like her skin continues to get darker and darker and she's not even in the sun. I am starting to wonder if medication could be the cause. (Plaquenil, Nplate??) My older daughter has a light tan and she looks so pale next to Caitlin! I may be overthinking it and probably should tell Caitlin that she is blessed with such pretty skin, but after reading that "hyperpigmentation" could possibly mean other medical conditions (including Lupus), it got me thinking! I need to stop reading sometimes, lol! I feel like I did when I was in school studying pychiatric conditions and I started to overanalyze and think that maybe I had this and that, lol! But seriously...should I be asking for her to see a dermatologist just to make sure her tanning is a blessing rather than a symptom of something more? Or is this bound to have the dermatologist laughing in my face?

Pauline - that's weird. I'm trying to think what could cause that. Usually, hyperpigmentation is splotchy, not even like a tan would be. Some medications can cause darkening skin, but I don't think Plaquenil does. If it did, I'd love that side effect!

Is her liver function okay?

Hi Pauline

I have a friend who looks permanently tanned from taking Hydroxychloroquine. As side effects go, I think its quite a good one!

Side effects of treatment for lupus or and rheumatoid arthritis may include: abdominal cramps, change in eye color, vision problems (e.g., light flashes or streaks), acne, anemia, lightening of hair, blisters in mouth and eyes, blood disorders, convulsions, diarrhea, nausea, vomiting, diminished reflexes or muscle problems including paralysis, dizziness, emotional changes, darkening of skin, headache, hearing loss or ringing in ears, breathing difficulties, heart problems, hives, itching, light intolerance, liver problems or failure, hair loss, loss or lack of appetite, nightmares, psoriasis, skin rash or inflammation , dizziness, extreme fatigue, weight loss

Sandi-yes...her liver function is fine. I have seen someone with abnormal liver functions and their skin isn't pretty! I remember last summer going to Great Wolf Lodge and a woman there with small children had seriously greenish/gray skin! She really looked like she did not feel good and at one point, I did see her mom (grandma)wiping her forehead with washcloths. Caitlin's skin, on the other hand, really is beautiful, but if she doesn't stop soon...people are going to think she's from the mailman!

Ali-thank you for that information! I just couldn't understand why she keeps getting darker and darker and my husband and I keep thinking she's secretly tanning behind our backs, but then she proved it to us by showing that she has almost zero tan lines.

Kind of strange that none of the doctors ever seem to say anything about it...all they do is lecture her about putting on sunscreen and we always try to explain that she is not in the sun much. I really think they don't believe us one bit! Maybe now...for the peace of mind, I will ask for that dermatology referral because after paying attention to her more, she has like normal skin on her cheeks, but darker everywhere else.

Pauline,

Have they ruled out Addison's disease? That's what made John F. Kennedy always look so tanned.
Being as it's also an autoimmune disease, and can have some rather vague symptoms, I'd want them to at least rule it out. Slightly raised Creatinine and protein in the urine are both symptoms as well. It's basically adrenal insufficiency, and can come on after severe or prolonged stress. I'm just thinking about what is the long-term impact to her body, being forced to hyper-produce platelets for so long, with the Promacta (or is it Nplate she's on?)?
And, she pushes herself so hard, too.

The medications, though, could also be causing it. I know when my FIL was going through chemo, as well as literally being on 50 different medications, his skin on his arms, hands, feet and legs turned almost a purplish black, though his face remained it's normal color. Being as he's caucasian of Irish descent, it stood out strongly. (Also, somewhat ironic, as he's always been a bit of a racist!). When he began homeopathic treatment, he did decide to stop the chemo for awhile, as it was making him feel so bad. The coloration went away-not sure if it was just from stopping or if the homeopathics helped it to go-but it came right back when the doctors wanted him to go back on the chemo again as he was suddenly doing better. (Before they were okay with him stopping, as they thought he only had a few days left to live.). You should look at the side effects of everything she's taking.

April