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10 year old daughter and HAIRLOSS has started back up!!

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Posted 11/13/2008 11:33 PM (GMT -5)

Hello Everyone,

My daughter was diagnosed with lupus in August (rash on face, + bloodwork, and then hairloss) she was placed on 200mg plaquenil and 40mg of prednisone,daily.

Her hair stopped falling out but we have been tapering her prednisone(~6 weeks) and about 3 weeks ago we were down to 20mg of prednisone every other day. about a week later her hair was starting to fall out again. So when we went to our rheumatologist he decided to keep her on the 20mg every other day (she also had a rash show up on the inside of her arm, opposite her elbow) Our peditrican and the 1st rheumatologist both thought this was maybe exzema(sp?) although she had never had any previous problems with skin issues but our new rheumatologist thought it was the lupus. Anyways this has showed back up after disappearing with her taking the medication.

Her hair is falling out like 10+ strands everytime you pull on it............!!!!!!!!!!!!!

Could someone PLEASE give me some insight on what might be happening?

She also did some bloodwork on the last doctor visit for thyroid function, he thought that may be a reason as to why she was losing her hair. When I called last week he said everything looked fine but he did question her results on a "thyroid uptake coming back a little low" he did not think there was anything to worry about and he was going to contact another doctor that dealt with thyroid issues to see if we need to continue to look at her results.

One other thing... she had bloodwork at the 1st rheumatologist that said her ANTI DS-DNA was at 1:40 and the 2nd rheumatologist ran the bloodwork and came back with her being negative for ANTI DS-DNA!!! I must have had a lost look on my face because he told me "THIS IS GOOD NEWS MAMA!!"

INSIGHT on these results?

Thank you for any help

Melissa

Posted 11/14/2008 2:25 AM (GMT -5)
It could be a number of things including the Pituitary Gland (the Master Gland) which can effect the thyroid and all the rest of the glands. Their are different tests for some glands i do believe. Did they tell you what her ANA level was or her CRP / ESR levels? I keep records of all my tests for comparisons. Keep asking for more blood work and insist on it if they don't want to do it until you know what it is. Good luck and i wish you all the best.
Posted 11/14/2008 3:05 AM (GMT -5)
Hi Melissa, I'm bumping up your previous topic because there were some detailed responses to your there, I think you should re-read. I would want the doctor to explain exactly why he is prescribing prednisone. There may be a really great reason for it . . . but it has some risky side affects if it isn't absolutely necessary. Again . . . I'm not saying she shouldn't be taking it . . . I would just want to know exactly why. I'm wondering if you meant 2 mg e/o/d. The 20 mg e/o/d sounds odd . . . why not 10 per day? I am NOT suggesting you to make any medication adjustment . . . just wondering why this dosing pattern and why she is on so much prednisone if her only symptoms are rash and hair loss. Keep pressing for more information. Also . . . Like BigBry said KEEP copies of ALL her blood work. You will need them later and they can be impossible to get as time goes on. Blessings!
Posted 11/14/2008 7:34 AM (GMT -5)
Good Morning,

Her ANA Direct was 830 and her ESR was 25. As of 9-14-08 bloodwork.

She is on 20mg every other day. We were at 40mg and every week we were to taper down. When she got to the 20mg every other day about a week later we noticed ther hair was starting to RE-fall out and then the rash on her arm showed back up. I was told by our rheumatologist that they were finding every other day doses were believed to cause less side effects.

Anti-DS DNA coming and going????

Thanks for your responses!
Posted 11/14/2008 8:30 AM (GMT -5)
Hi Melissa, Very interesting about the e/o/d prednisone dosing. I haven't seen that except in the very low end of a taper. Will be watching to see if other members are being prescribed a similar dosing pattern when using pred. I am really not familiar with the ways in which lupus treatment might be different in children . . . so my questions are largly out of curiosity. When I asked about 'symptoms' . . . I was aware of the hair and rash . . . but was surprised that the doc would chose prednisone to treat those issues. We don't usually treat a high ANA, its not a symptom. Lots of people have wacko ANA and have no symptoms at all. I just wondered if she had horrible joint pain or organ involvment that were being treated. Was she started on plaquenil ? Again, not sure how young this med is used. But it is a basic med, taken longterm, for most lupans. Most of us receive a fair amount of relief from just the plaquenil by itself. . . and it has way less side affects. It does take months to fully build in the system though. So sometimes pred is used short term while the plaquenil is building. It also helps with the hair loss issue and the rashes in many people. Curiosuly, prednisone and plaquenil. to a lesser extent, can actually 'cause' hair loss or hair thinning too. Just make sure you understand what the doctor is trying to accomplish when you allow your daughter to take prednisone. It IS a lifesaver, for sure, but it always demands a payback from the body. Used long term, it will thin the bones and do other damage . . . so make sure you know the trade-off when you are using this med. That being said, there really are some who need to use it long term. . . usually for debilitating issues and organ involvement. I hope things go well for your daughter. It seems that our cycles tend to affect the disease. So you might see some issues arise when she reaches puberty. It tends to increase inflammation. It's helpful to know what events will affect us. Hopefully, her disease will be minimal. Keep us posted!! Blessings!
Posted 11/14/2008 9:01 PM (GMT -5)
Hi Melissa, My daughter was also diagnosed with Lupus SLE with when she was 10 years old.  She is now 14. Here hair also fell out and was left with very few strains.  When you first get diagnosed your hair falls out from the shock of the illness and my daughter was not even on prednisone at the time but was then put on 20mg when she went into her first real flare up.  She had learned to keep her hair in a ponytail and wore thick headbands which helped cover up the bald spots.  Her hair will grow back and she will not lose it like the first time, but going forward she will shed every time she flares or even has a virus. She also broke out with a raised rash when she first started plaquenil    at age 10, was taken off it, it went away but then was put back on it and her system finally got used to it.  My daughter is on 2000 mg of Cellcept, 200 mg of plaquenil   and 3 mgs of prednisone, which has helped manage her since she has been diagnosed. If you have any questions, I would be happy to answer them as I know it is a lot to handle.
Posted 11/14/2008 9:45 PM (GMT -5)
(((((( Kyle )))))) Thank you so much for sharing. . . and welcome back to the forum. I'm so glad for mom's of youngsters with lupus to have each other to bounce things back and forth. I really do believe that knowledge is power and thru sharing, we sometimes find some helpful info. Its great for the newly dx'd moms to have some veteran mom's to lean on. Thanks again for your encouragement!! I'm so glad you've found a good strategy for your daughter's meds. I hope there is a cure in sight for these youngsters!! Blessings!
Posted 11/14/2008 11:25 PM (GMT -5)
Thank you Rosie and Kyle for your help!!

Wow this is so overwhelming!!

Melissa
Posted 11/15/2008 1:57 AM (GMT -5)
Hi Melissa

Is she having any other symptoms? Have they checked her for psoriasis or discoid lupus? Thats terrible she is sooo young going through this. I hope she grows out of it! From what I have seen they are a little more aggressive with children to try to get them into remission. I have a friend whos daughter has juvenille arthritis. She sees a rhemie that specializes in children. We live pretty close to Chicago though. I am not sure how many of them (ped rhemies) exist but hes doing a great job with managing her.

Good luck!

Melissa

Posted 11/22/2008 8:11 AM (GMT -5)
Thanks for welcoming me back.  I live in Boston, so my daughter's care is under Children's Hospital.  Her Rheumy has been very agressive with her since day one and I think that has helped in keeping her managed (as she was very sick when she was first diagnosed).  She is also sun sensative and gets fatigued, but otherwise is a pretty normal teenager as she has learned to live with SLE (still gets angry about it) but I she has every right to.
Posted 11/22/2008 11:58 AM (GMT -5)
Hi! I just wanted to say my heart goes out to all who have children suffering with Lupus! I can't imagine. I have been put on the every other day prednisone schedule, I was on 120mg eod acouple times and then again at 60mg. You guys and you babies will be in my prayers. God bless you, Judy
Posted 11/22/2008 9:42 PM (GMT -5)
Hi Melissa--
I have an autoimmune polyglandular dysfunction as part of my illness and hairloss is part of it. When I lost hair like you described, my FSH (follicle stimulating hormone) was out of whack along with other stuff. While prednisone helps, I would try to get a single consult with a pediatric endocrinologist (or an endocrinologist who also sees lots of children). Many people with severe autoimmune endocrine problems have unremarkable bloodwork and a good endocrinologist will look at everything, her skin, reflexes, meds, everything and can order very specific tests. Endocrine disorders can be very disfiguring if let go too long, and I wouldn't wish that on anyone. At the very least, I would ask for the FSH bloodwork to be done. You don't have to have bad bloodwork to see an endo, at least not a good one. Physical symptoms like vitiligo, alopecia (hairloss), neuropathy, diabetes, and other things your doctor may note can be enough to have an endo check out your child. My childhood was miserable due to undx hypothyroidism because I was tired and puffy and just felt lousy.

I'm glad your doc is keeping her on the pred. And I'm so sorry that you and your child are going through this and I'm sure you'll get it sorted out soon and things get better soon. One thing to note is whether the follicle is coming out with the hair. Also, if you want the referral to the endo just to make sure there isn't anything odd going on, a dermatologist might be more quick to refer you to an endo (bring some hair in a baggy) while other docs may feel they can handle it themselves or just lump it in to another disorder. Whether or not the follicle comes out with it is something my docs always wanted to see, to know if it was breaking or was temporary hairloss vs permanent. Most of my hair grew back but it is only half as thick as it was. At least it covers my head now. I also developed pigment problems,which is why Isuggested the endo and derm, and those unfortunately are permanent because the endo and dermatological aspects were not treated in a timely fashion.

I'm sorry tosound so gloomy, just worried. Take care.
Posted 11/22/2008 9:44 PM (GMT -5)
You know it was around when I was on and off the pred that my hair started thinning. But it does not come out when you pull on it... That was something the dermatologist just checked. He said my hair loss was not due to lupus because my "pull" test was normal. So this makes me this this is a side effect from the lupus. Maybe it will come and go with flares? Man, I hope its stops, I am upset at 40 losing my hair, its gotta be so much worse for a 10 year old! I hope you find some answers.
Posted 11/23/2008 10:41 PM (GMT -5)
When my FSH was out of whack, my hair came out when I brushed or pulled it. It just fell out in clumps when I ran my hands over it. It was horrifying. I have the regular thinning due to my prostate. My FSH is due to pituitary problems due to my polyglandular condition. Mayo has told methat a mild TB infection attacked my adrenals and some of my other endocrine glands and that once they fail, stuff messes up for along time without treatment. They believe it triggered the onsetof my polyglandular autoimmmune condition and my autoimmune and liver disease, which is quite serious. I was asymptomatic for TB, though I had a positive chest xraywith a single spot of TB, it had already spread. I'm now being treated for latent TB in the hopes that some of my autoimmune problems and damage will resolves themselves. So I got my answers for now. Hopefully they are the right ones.

I hope your daughter gets her fsh tested sometime and maybe gets to see an endo sometime. Pred really messes with adult endocrine systems, I can't imagine what it does to kids. I need it so it actually doesn't give me the side effects, but I also need cortisone.
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