Hair Fall!!!

[rose_butterfly]

I am an sle patient,lupus nephritis,19yrs. I was diagnosed with it last year. Ever since then I have been on medication's like mycophelene mofetil,hydroxychloroquine,steroids..steroids was tapered from 70 mg to currently 12.5 mg. I was also under 6 cycles of cyclophosmide. It's been 6 months after the cyclophosmide. .but my hair still falls terribly..like clumps..pls help sort out this issue before I go completely bald.. in india, a girl of my age can't be bald.. people stare at u...They might speak behind ur backs telling.."ah.guess she is having cancer.." Pls help..what should I do for my hair..?Also I have put on excess weight due to steroids, severe stretch marks everywhere making my skin look like lizards..I feel terrible being in this situation. Pls help me..

I have also undergone 6 plasmapheresis as part of this lupus nephritis treatment ,had severe complications when excess fluid filled into my lungs,been in the ICU.

[lupus-support1 Administrator]

I understand how distressing losing your hair is for you. The drugs include chemotherapy, used to treat cancer, but used in lower doses in lupus. Nevertheless, they are "toxic".

Corticosteroids are life saving, but at high doses, weight gain occurs. I know this is depressing for you and while it does not help knowing you are not alone, I think it may be helpful to talk to other people. This is especially difficult because you are only 19 years old. Is there a support group locally? Can you ask your doctor about getting psychotherapy? This can help you deal with what is happening to you.

As you live in India, you must see your lupus specialist, that is, your doctor who is treating you about your hair loss. There are doctors who specialise in this area.

You can also go to our other website: LUpus Patients Understanding & Support (LUPUS) where you can also post questions and talk. It is here: lupus-support.org

You will need to register as a Member which can take 24 hours, depending on time difference.

With good wishes,

Ros

[rose_butterfly in reply to lupus-support1]

Actually the doctor who diagnosed me with lupus is specialised in nephrology. Since I am having lupus nephritis, sle. He found it out through kidney biopsy &my other symptoms. When I told him about my hair Fall ,he said it might be because of cyclophosmide, it would grow back . Don't worry". But now 6 months have passed since I have changed from cyclophosmide to mycophelene mofetil drug (500 mg morning +750 mg evening). But hair Fall has not come down. He said I should meet a dermatologist. He is not sure why my hair falls so terribly.

Please can you help me on how to treat my hair? Or please let me know if there are other doctors who specialise in this field of lupus &hairfall issues so that I can contact them.

Over here in India, the locality which I live there are no local support group for lupus patients. People have never heard of the term lupus &sle. There are very rare cases of lupus.

[rose_butterfly in reply to lupus-support1]

I tried signing up in luous -support.org but I can't access it.Don't know why ..

[lupus-support1 Administrator in reply to rose_butterfly]

You need to register first. You will see at the top right. You will have to fill out a form to register. When you get to the date of birth, use the following:

nn-nn-nnnn

Where n=number.

If you have any problems, email me: roz [at] [lupus] [-] [support] [dot] [org] [dot] [uk]

Send me your details and I will register you myself.

Registration means you will have access to everything - everything is FREE.

I think you must see a dermatologist. Even a lupus specialist would send you to a dermatologist.

I also think you need someone to talk to - you are only 19 years old. You are bound to have all kinds of feelings - do you have family/friends who support you? Sometimes, we need to talk to a therapist because it can be difficult saying what we really do feel and we may not want to "burden" family or friends?

Please let me know if you have a problem registering and whether you would like psychological support.

With good wishes,

Ros

I have written a "Pinned" post on LUpus Patients Understanding & Support (LUPUS) and the LuPUS Message Board.

[rose_butterfly in reply to lupus-support1]

I'm very grateful that I have got a great family to support me in all my bad times coz for them I'm still their little girl. But i do get upset for very silly reasons & start crying lately. Maybe becoz in my innerconciuos mind I'm aware of the fact that i'll be alone if my parents are not around in the future.

please do enlighten me & my family on what are the consequences of this disease on our lives. Would this lupus never go out of my body? Does sunlight affect my life? I'm studying civil engineering. .so? My parents wanted to know will it affect me..

@ Ros: I will mail u my details coz I still cudnt sign in..

Thank u so much for ur concern &support.

[lupus-support1 Administrator in reply to rose_butterfly]

Please do email me your details.

Although lupus is incurable, most people lead a normal life, get married, have children. You need to have a good team of doctors, especially as lupus has affected your kidneys.

It is also normal to feel anxious and depressed at times!

With good wishes,

Ros