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08/09/2012 08:03 AM

New to the Lupus Support Group

pamiheart84
 
Posts: 5
New Member

I am so happy i've found a support group. I am 28 years old and was diagnosed with Lupus in April 2011. I don't have the type of Lupus that causes muscle and bone pain, I was experiencing red itchy marks on my face and alot of hair loss. The marks appeared when I was 23 years old, I had gotten a bad sunburn in Florida and was physically abused by an ex, so it was a very stressful time in my life. I had visited my dermatologist after the marks had not gone away, and she said I had psoriasis and prescribed me topical and oral steroids. This did not work and the red marks got progressivedly worse. I lost my health insurance and could not afford the doctors visits, and considering the medications did not work, i was not too concerned. Several years had gone by, the marks did not diminish and I was experiencing patchy hair loss, and a very itchy red scalp. I then went to a different dermatologist (actually a nurse practitioner) and she performed a biopsy and extensive lab work, this is when I got the news that I had Lupus, and probably had been living with it for several years. She referred me to a rheumatologist who put me on plaquenil and prednisone for several months and this did not work. The rheumatologist had no bedside manner and was just in a rush to get me out during my appointments, so I switched. The woman i presently go to is associated with University of Penn and referred me to a dermatologist that specializes in Lupus patients (Dr. Werth). She is world renowned and is a genius in her field. I did a Lupus study for several months for a new trial medication (unfortunately that didnt work), but i will do anything to help find something that works! I am experiencing excessive hair loss and it seems my "flare ups" never stop. She has changed my medications to quinacrine and hydrochoricphosphate, which still are not working. I am hoping a fellow Lupus groupie has similar symptoms and has suggestions of something that has worked for them. I am so happy that i've found this group,even though I have a boyfriend and family that is very supportive and understanding, but it's been a very difficult couple years for me and it's nice to know there are people out there that understand the emotions you endure living with Lupus.

Thank you,

Pam

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08/09/2012 08:37 AM
Iamhungry88
Iamhungry88  
Posts: 33
New Member

Welcome to the group! I personally mainly have lupus of the skin but not discoid. I also have joint pain so plaquneil has helped for that. I have only been on medication for five months and I have had great relieve. But this being said, my face is redder than ever Sad As for hair loss, I started taking prenatal vitamins as well as biotin and b-12 which helped greatly. I was losing handfuls a day for months until I began taking those vitamins so hopefully they will help you. (Ask your doctors permission first in case they clash with your meds) I wish you luck on your search and I am happy you have found this wonderful support groupSmile

08/09/2012 08:44 AM
pamiheart84
 
Posts: 5
New Member

Hi,

Thank you for the info! For several years I've been taking a daily multivitamin, fish oil, and biotin. My dermatologist said my hair may never grow back because the scar tissue is so severe. I actually looked into hair "implants" and there is a salon in NYC that specializes in people with Lupus!!! I just have to find the time and money to get there LOL. How long have you had Lupus?


08/09/2012 08:59 AM
Iamhungry88
Iamhungry88  
Posts: 33
New Member

I have only known that I have had it since March of this year but I have had problems on and off since I was 12 and it didn't get too intense until a little more than a year ago. I am 24 , but i started getting red patches on my face around the age of 19, which is when I started drinking socially and when I started my estrogen packed birth control. That is wonderful that you found a salon that specialized in Lupus patients... i hope they decide to create cheaper options Smile I am sure you will soon get wonderful advice from someone with a similar situation in this group!

08/09/2012 09:11 AM
pamiheart84
 
Posts: 5
New Member

Oh my goodness, it's crazy how long it can take to be diagnosed. Thank you so much for your positive words of wisdom!

Have a great day and I'm sure i'll talk to you soon on here!!!

Pam


08/09/2012 09:43 AM
redhairali
redhairali  
Posts: 3739
Group Leader

Hi and welcome to the group. I also have sever scarring on my scalp and the hair will never grow back. It really helps to have a place like this to come to, I hope you visit often.

Alison


08/09/2012 09:55 AM
pamiheart84
 
Posts: 5
New Member

Im so happy I found this group! How long have you had Lupus?

08/09/2012 11:12 AM
Hakuro
Hakuro  
Posts: 490
Member

Hello Pamiheart84. I are very welcome into this support group where you will find many answers for your multiple questions. And even when there is no answer, the support will help you go through our every day challenges.

Maryse


08/09/2012 11:34 AM
mumeva
mumeva  
Posts: 6143
Group Leader
I'm an Advocate

Hi Pam and welcome to this fantastic support site where you will meet some wonderful, caring and compassionate members. I started off with discoid Lupus mainly on my arms, hands and chest. I do get areas on my scalp at times but it doesn't seem to be that bad. I have had Lupus now for 19 years and I also have a wonderful Rheumatologist that is almost family now, I have been seeing her for so long. We really connect and she lets me in on everything right down to what meds I can take. I think it's important to have a good doctor patient relationship otherwise it won't work. Anytime you need to chat or vent please feel free to post often. I wish you all the best.

Eva


08/09/2012 01:00 PM
redhairali
redhairali  
Posts: 3739
Group Leader

If you are asking me how long I have had lupus, it is about 33 years.

Alison

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