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Hi everyone, over the past few weeks i've found this site really useful. My lovely, beautiful and kind daughter of 18 is just being diagnosed now, they are 99% certain and just waiting for latest bloods to come back. This past week things seemed to have just got worse, bad pain, mostly ankles, hips and hands (wrists and fingers), a couple of nights ago she noticed a bald patch, about the size of a 50p and a fair amount of hair on her pillow every morning since, i wonder if anyone knows if it is usual to lose all your hair or does it just get thin with the odd bald patch, any comments gratefully received as understably she is very concerned. We have an appointment with the dr tomorrow so hopefully will learn a bit more then.
 

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Hello Kazi and welcome :)

I'm sorry to hear of your daughter's troubles. This site is a great place to look for information, support and advice :)

The degree of hair loss with lupus can vary significantly from patient to patient. Most people won't lose "all" their hair but bald patches can occur, however hair usually grows back well once adequate treatment has started.

It is understandably worrying when illness affects your looks as well as everything else and can be a huge dent in morale.

Hope to hear more from you soon and keep us posted on how your daughter is doing.

hugs :hug:
Katharine
 

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Hi Kazi

Welcome to the forum - I'm sure you will find much useful information here to get you and your daughter through this difficult period.

Thinning hair is a fairly common symptom and I have found that this has improved with medication (plaquenil). However, it is also possible to have alopecia.

The experience of Lupus is so varied that it is very difficult to predict what symptoms will be experienced and how severe any will be. The secret of living and dealing with Lupus is thoroughly educate yourselves on the condition and then to take each day as it comes without trying to anticipate what the future may or may not bring.

Best of luck for the doctors appointment tomorrow and be sure to let us know how it goes.

Take care.

Merle
 

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Hi Kazi, I wish you well for the appointment. It will be a topsy turvy ride for a while to get things back on an even keel for your daughter, she sounds lovely. It may be that if it is auto immune you will be referred to a Rheumy, preferably one that is knowledgeable in auto immune diseases. Hair loss can be a feature but this varies and not a problem at all for some. Starting her on treatment should help all her symptoms hopefully... take care and sort one thing out at a time, you sound very supportive of her... which is so helpful for her and her health journey... all the best
Claire X
 

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thank you so much for the support, it seems to unfair that this condition effects the most loveliest of people!

Claire, we are already seeing a rheumy at the sussex county in brighton, who we referred to after about 3 years of allergy testing as it all started with bad knees which they thought was osgood schlatters (dont know if i spelt that correctly) followed by 10 visits by ambulance to a&e with anaphylactic shock together with facial swellings, who did the last lot of bloods, next appt end of July when they should hopefully be back, he said they would take some time to complete. just recently it all seems to have got so much worse. drs appt tomorrow is just for more antibiotics for her kidney infection and to see if he can help at all with the hair loss. shes not on any meds at the moment which worries me slightly as she appears to be in so much pain.

Once again, thank you all and i wish each and everyone of you a peaceful nights sleep

Karen x
 

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Hi Karen,

I know how hard it is to see our children sick and in pain.

It is a good idea to write down new symptoms. Take pictures of new rashes, write down the day it started and how long did it last.

Hopefully at the doctors appointment tomorrow they can give you more help with her pain.

Love,
Lyn
 

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Hi Karen

Welcome to the Forum. Im sorry to hear about your daughters poor health and I hope she can get started on appropriate treatment as soon as possible. Its very difficult to be struck down with this illness at any stage but it must be so hard at your daughters age :worried:

Could you talk to her doctor tomorrow about some pain relief for her? It sounds like she could do with something to help with the pain and it can make a big difference to her overall wellbeing while she is waiting for results and treatment. Speaking of results, July is very far away to wait on results and possible treatment. Depending on the results her Rheumy might want to see her sooner or might be able to advise her GP on some treatment options for her. I would be thinking of either getting your doctor to ring the hospital for advice on this or try ringing them yourself especially as she seems to be getting worse. Dont be afraid of pushing this - sometimes it takes a bit of noise for them to respond.

Like the others have said, hair loss sometimes goes along with flare ups and once the flare is controlled her hair loss should be controlled as well.

Do let us know how she gets on and feel free to ask any questions

Take care for now
Joan:rose:
 

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Hello again... I am with Joan on the 'making a noise' issue... end of July is a long time for her to wait and be in pain. Think it very reasonable to ask for a cancellation etc etc and to push your case forwards, after all she is young and has been suffering a long time... she could be started on some meds hopefully sooner and may get some relief sooner, so worth a push...
I wish you both all the best,
Claire X
 

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kazi,
Hi and welcome to the site. I am sorry about your daughter it can be hard but remember one day at a time and do what you can and let the rest go for her. As for the hair loss it is common if on meds, but not sure if she is not on meds for lupus. It can thin and in some cases there is a lot of hair loss. I know she is young and subconsious of her looks but at this point her health is much more important. She will be just as beautiful with hair or with a little hair. Encourage her whenever you can, to keep her spirits up. I am glad that you found the site and are wanting to help her with this. I hope you both are doing well and feeling well.
 

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Hi and welcome to the site.

Sorry for what brings you here yet so glad you found a good place to hang your hat, get support, good information and understanding from a great group of folks.

I often suggest to people to go out and buy "The Lupus Book" by Dr. Danile Wallace. It is a must have book for anyone with Lupus written in laymans terms.

I do hope your daughter gets on medicine to start her on the road to good health. Let us know how she makes out moving ahead.
 
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