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missy1975

Posted , 5 users are following.

missy1975
missy1975

hi I have never done this before. I just found out a couple weeks ago that i have lupus. my hair started thinning and falling out, doctors thought it was my thyroid because the levels were out of control, I knew it wasnt that. well im so upset about this because it has changed me completely, i dont look the same or feel the same. Im just so uncomfortable about myself. Im just hoping someone can help me, with any information on what i can do for my hair. ive tried so many things but nothing is helping. thank you for any advice, and for letting me exspress myself

4 likes, 14 replies

14 Replies

  • cheryl21625
    cheryl21625 missy1975

    Posted

    Hi Missy,

    I am so sorry to hear you are going through this. I know exactly how you feel so you are not alone. Have they determined what type of Lupus you have? There is no quick and easy fix for this. I was told it's a long process. I was diagnosed May 2013 and suffered hair loss also and because of the steroids and medication I had weight gain. You feel and look like crap. I finally had to bite the bullet and lost the weight and bought a wig. Also bought a baseball cap with a wig attached. If you're interested I'll give you the name of the company. Best thing I ever did. Got my self esteem back and felt like my old self. Your dermatologist I am sure has some type of treatment plan for you. I was told that it could grow back in a couple of years but there is no guarantee. Your doctor needs to give you a prescription for this and then it will be covered under your medical. It's important you follow your doctor's instructions too. Definitely stay out of the sun and/or cover up, even in the winter months. Try to stay positive I know it's hard. Keep me posted.

    • missy1975
      missy1975 cheryl21625

      Posted

      Thank u for responding Cheryl, they said it was sle lupus. I'm confused about everything. It really depresses me, I hate to think about wearing a wig even though I have thought about it. I really wish it would grow back but I doubt it.  What is the prescription that they would give you? They haven't given me anything except a cream to put on at night, I haven't tried it yet. Thanks again, for your response
    • cheryl21625
      cheryl21625 missy1975

      Posted

      My lupus is discoid which is on my scalp. I have to have injections into my scalp every 2 months. I am also on 2 different topical steroid creams as well as the prescription Plaquenil. This is to help the inflammation in your body which in turn will help your organs and joints. Don't delay on using the ointment. I know  you probably are thinking of those types of wigs that elderly people use and they can be quite obvious. Things have come along way in that department. The company is called Compassionate Beauty and they have a great selection, very trendy styles. I was very depressed when I lost my hair and I wouldn't even be around my friends and avoided everyone so I do understand how you're feeling. I felt like I had regained control over the situation so that was a positive feeling. At least this will help get you over the initial setback in losing your hair. As I said, this may only be temporary and it may grow back with treatment, every case is different.  Take care.
    • missy1975
      missy1975 cheryl21625

      Posted

      What is the difference with lupus? Maybe I don't understand? I will have to look into the wigs, thank u for listenening, it's so hard to find someone who understands when you don't even understand everything. 
  • peter27120
    peter27120 missy1975

    Posted

    Hi Missy

    Sorry to hear about your pedicament and as a male cannot imagine what it is like as a female but as I have had SLE since 2003 I find the hardest part to deal with is the depression and tirdness and took me a few years to get over the constant red face, often stopped by the police for drinking over the limit and people assuming I had been drinking, trust me they do not put any effort into this disease as all are given the same treatment by 3 different Rhuematologists Predisone, Methatrexhate and Niviquine so do not go to the specialists anymore and have learned to treat myself as know when an attack is coming, found the worst times were the first 3 years but please Missy stay positive and do me a favour and this goes to all Lupus sufferers, please google sevenpointfive, this was a natural treatment developed by a South African who has chronic SLE and make your mind up. I hope you don't mind advice from a males point of view but I suffer like all....Depression...Depression

    Let me know what what you think and if you ever need somebody to chat to write to me or the forum

    Take care and all the best

    Peter

    • missy1975
      missy1975 peter27120

      Posted

      Thanks for responding peter, I'm sorry that you have to go through this also. It's very hard to deal with, I will look up what you told me, I do appreciate any information I can get. Thanks again, and take care
  • jennifer94631
    jennifer94631 missy1975

    Posted

    Hi Missy

    I have had SLE Lupus since I was 16 but I wasn't diagnised until I was which is very common but it takes so long to diagnise correctly as it can mimick so many other conditions!  I am now 38 and I find I get very frustrated with the condition due to the fatigue/tiredness mostly but it is important to look after yourself and listen to your body, if you need to rest then you must rest otherwise you can make things worse - I lose my hair and at first I was worried about needing a wig etc but luckily I just have to pull what looks like a dead rat out of the bath plug after showers and I have a halo of new hair on my head making it look fuzzy all the time, but like someone else mentioned wigs are a lot better these days if you need one! If you have any questions please ask!

    • missy1975
      missy1975 jennifer94631

      Posted

      Hi Jennifer sorry to hear that you have this, and it is very frustrating, I really wish no one had to get this. It makes me so sad and uncomfortable around anyone, I look and feel so different, I'm hoping some of the hair will come back, but I've tried so many things and I don't think anything will help. I never thought I would feel so unhappy with myself. Thanks for your reply. Take care
    • cheryl21625
      cheryl21625 missy1975

      Posted

      Hi Missy,

      My doctor told me that there was a chance that my hair could grow back after a couple of years. Right now I have to put Rograine on my scalp to 2x a day to see if it will stimulate some hair growth. I am trying to stay positive but I don't want to be disappointed if it doesn't work out so that's why I bought the wig. I still have my own hair down when I am at home but it's just easier this way when you're out and about especially in the sun. I got tired of carrying an umbrella in the sun and everyone looks at you like you've lost your marbles. I honestly know exactly what you're going through as I went through this in January/February but I feel a lot better now. To take my mind off the situation, I plan events such as travel, lunches or dinners, just enough so I am not totally focusing on the lupus. I am still working full time so that also helps keeping my mind occupied on something else. Try to stay positive, I know it's hard but after a few months, hopefully you won't feel quite so sad.  Take care.

    • missy1975
      missy1975 cheryl21625

      Posted

      hi Cheryl, I have used the rogaine too, it doesn't really seem to help for me. I hope it helps you. Thank you for your kind words, I'm just hoping that I can find something to help. Take care
    • tanya96195
      tanya96195 cheryl21625

      Posted

      Hi Cheryl,

      It's been a while since we last spoke. How are you feeling ? I am feeling fine; just a little annoyed that the Desonide cream is causing pimples in my forehead/eyebrow area. I go back to the doctor on 9/30/14; I am going to ask if there is something else I can use. I am still taking the Plaqenil (1x day) and the Prednisone (1 x day). The nausea has subsided a bit; since I started taking the Plaquenil in the morning after breakfast. My spots on my forehead sometimes appear to be getting lighter. Overall, I am feeling fine, just trying to stay busy and focus on other things rather than this condition that I have going on.

      I hope all is well with you, keep in touch..........

    • cheryl21625
      cheryl21625 tanya96195

      Posted

      Hi Tanya,

      Glad to hear your feeling better. What is the Desonide cream for?? Glad to hear the nausea has quietened down for you. Is your plaquenil 400 mg?? Maybe you should split it up. I am taking mine 2x a day and it's only 200 mg each dose..Maybe easier on the stomach this way. I just visited my dermatalogist last week for my 2 month visit and didn't have to have any injections, yippee!!. I see him again in December so that sounds promising. I am still applying the ointment 2x a day plus the rogaine 2x a day to try and stimulate some hair growth. I see the other specialist next week. Right now I am experiencing numbness in my pinky finger and the one next to it. Not sure what that is relating to plus I am still having the odd headache although last night I had one so bad I had to go to bed. It lasted most of the night. I see my regular doctor Friday so I will ask him about the numbness and headaches. I have a urinary tract infection (common with lupus) so not sure if that's the reason my protein in my urine was elevated. Other than that, I am ok. Definitely looking forward to the cooler weather. I'll keep you posted.

      Take care!

    • tanya96195
      tanya96195 cheryl21625

      Posted

      Hi Cheryl,

      The Desonide cream is for the dark spots on my face (forehead area only). I have been using it for a lil over a month now. I am planning on asking for something else; as I can't take these clusters of pimples. Some of them are big and really hurt. I was taking the Plaquenil 2x day until I started experiencing severe nausea. I am now taking it 1x day with Prednisone 1x day as well. The nausea is alot better; although yesterday and today I am feeling nausea.

      I will keep you posted. Have a great day !

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