Hair loss & scalp sores/scabs

By PeggyMargaret Latest Activity July 31, 2012 at 12:20 am Views 5,686 Replies 16

PeggyMargaret

The last 2-3 months my scalp is red; my hair is REALLY falling out; and I have all kinds of sores on my head as if I hit my head really bad and now its scabbed over (but I haven't hit my head). The end of August the dermatologist is going to biopsy one of the sores). I have Systemic Scleroderma as well as 7 other auto-immune diseases. I just had gastric bypass for severe and damaging reflux. So either this hair loss is from Lupus or the nutrition loss due to the gastric bypass. My hubby took me to a wig store and we found a good one but I'm so afraid people will know it's a wig. But the hair loss is getting hard to cover as the top is so thin. I don't have a definitive diagnosis that it's Lupus bug I'm pretty sure it will be. Any feedback would be so appreciated…advice/your story.etc. Thanks!

  • Report Report as inappropriate
  • Share
    Email Email
    Print Print Twitter Twitter
    Facebook Facebook

Replies (16 replies)

Add your reply Reply Down
  • PeggyMargaret
    PeggyMargaret September 6, 2012 at 5:45 pm   

    Well I had my biopsy last Wednesday and was blindsided with really bad news. I was told that it will either be Lupus or Lichen Planopilaris, which is an auto-immune disease where hair loss is permanent. The photos of it are hideous. The Dr said either one is bad news. Adding lupus to my other 9 diseases will really amp up what they do to me. Vanity as it is I am having a very hard time with the hair loss. All of this is so hard. When does it stop?

  • Kallen73
    Kallen73 August 15, 2012 at 10:16 pm   

    That sounds horrible. I'm so sorry your oing through this I have Lupus and every time I wash my hair, handfuls come out. I have also had the sores on my scalp but not as bad as u describe. I pray that you find relief.

  • Mamie1
    Mamie1 August 4, 2012 at 10:27 am   

    Not good I know. My hair loss is the hardest part. Don't have any sores, but redness and soreness around hair line during my flares. I use a a topical steroid spray, but only for a few weeks at a time , as it thins the skin. Like I need that more with aging. My hubby is very supportive too, but hard on him as well.
    People will probably know your wearing a wig, because you do.
    I haven't found a wig I love yet, but I'm still grieving my hair loss, so that get's in the way.

  • crystalcauldrons
    crystalcauldrons August 1, 2012 at 1:46 pm   

    I willl have to keep track of when I get my patches/sores…I never thought it might be sun related. I usually wear a bandana because of my hair loss and the fact it actually hurts for me to brush or comb my hair so I bascially cut it really short and just cover it as much as possible now when its looking funky. I tend not to wash my hair much either because that is when I notice the loss of it the most.

  • snowsgirl07
    snowsgirl07 July 31, 2012 at 9:52 pm   

    I had the same thing, but mine occurred during a flare and it seemed to be aggravated by sun exposure.

  • zoethefatcat
    zoethefatcat July 31, 2012 at 5:13 pm   

    One of the signs that contributed to my diagnosis was hair loss, sores, and scaly patches all over my scalp and ears. I didn't have a biopsy because I had so many other cardinal signs. Now I didn't had the other medical issues you have right now, but it sounds exactly like what I went through. I had such large patches of hair loss, coupled with big fluffy hair. I couldn't hide that, so I just decided to cut my hair super short and run with it. It eventually grew in like baby hair! So depending on how attached you are to your hair, that might be an option…

    It's back to normal now, pretty much, except there is still a bit less hair in the part where I lost more hair. Hope to hear more about the biopsy.

  • crystalcauldrons
    crystalcauldrons July 31, 2012 at 12:22 pm   

    I am sufferring from bleeding sores and scabs that you are describing. I have been diagnosed with Kidney Disease and this past March as a Seronegative Lupus patient. Next week I am getting a biopsy of the sores as well. My hair has been falling out in phases (seems to be every couple of months) so I would put it as a side effect of your meds (which is what my docs are telling me combo of Prednisone, Cellcept, and plaquenil) pending what you are taking. I haven't had the gastric bypass so that is not something we have in common. I have asked two friends if they lost any hair after their gastric bypasses and both told me they experienced no hair loss they have noticed. (one was a year ago and the other 5 years ago). Please keep me posted to what the results of your biopsy are and I will do the same if you would like to know about mine. I go in on Aug 7th.

  • PeggyMargaret
    PeggyMargaret August 2, 2012 at 12:04 am   
    Edited August 2, 2012 at 12:12 am by PeggyMargaret

    So you also take Cellcept? I have been on it for so long & never had the hair issue so I'm really concerned that its lupus. This morning my scalp was so red and the water hitting it from the shower actually hurt. My hair is soooo thin & so many bald spots. I remember going & Gb ch.

  • crystalcauldrons
    crystalcauldrons August 2, 2012 at 8:01 am   

    Yep I take 6 pills a day of the Cellcept (3grams /3000mg). My head hurts so much all the time that I seldomly wash it anymore I just cover it up with a bandana, scarf, or hat. Last night another handful fell out because I needed to wash it, it was starting to smell pretty funky. LOL

  • PeggyMargaret
    PeggyMargaret August 6, 2012 at 10:54 pm   

    You and I are on the same dose. This isn't causing hair loss does it? Is your hair thin everywhere? I wore the wig to church & was so self-conscious. Its my husband that wants me to wear it. I'd rather do the bandanna. I shower every day & couldn't stand not to. But again today alot of hair again. Good luck on your biopsy. Please let me know how you are if you wouldn't mind.

  • crystalcauldrons
    crystalcauldrons August 7, 2012 at 5:51 am   

    From what my docs think it could be either a side effect of the medicine or a symptom of my Lupus as well. Not exactly sure. Eric (my hubby) doesn't care what is on top (or not) of my head just that I don't shave my head balds. He would rather see me with spots everywhere than no hair at all. I think its his last form of denial that I am sick. He's extremely supportive of everything I am going thru he just does not want me to shave my head.

    Today is the biopsy, will post results as soon as I know them.

  • PeggyMargaret
    PeggyMargaret August 7, 2012 at 8:21 pm   

    I am sending prayers and good thoughts that all went well today. My hubby is the same. He calls me at least 4 times a day to check on me. When he took the vow "in sickness and in health" he had no idea what he was in for. The last 9 months with my diseases have been horrible. I have had numerous surgeries, hospitalizations, treatments and procedures, and now this gastric bypass to get rid of the reflux (it did) and what that is doing to me. So I think my hair loss is a combination of a bunch of different things…meds/nutrition/and if I have Lupus. Where do you find the best scarves to wear. I have ordered some in the past and they are just too big and I'm not good at all in how to put them on.

  • snowsgirl07
    snowsgirl07 August 8, 2012 at 8:17 am   

    PeggyMargaret…look up on youtube "How to tie a Tribal BellyDance Turban" it will show you how to take those too big scarfs and tie them up attractively like you see in Crystalcauldrons photo

  • PeggyMargaret
    PeggyMargaret August 11, 2012 at 10:16 pm   

    Just checking in with you to see how you are doing. Any results from the biopsy? Hugs to you.

  • crystalcauldrons
    crystalcauldrons September 5, 2012 at 9:56 am   

    Sorry its taken me so long, haven't been feeling good. When I went in for my original appointment, the sores had healed so she could not do the biopsy. Last week I had another set start up and went in on Thursday before the holiday. I am hoping to know something by this Friday (Sept 7th).

  • PeggyMargaret
    PeggyMargaret September 6, 2012 at 7:28 pm   

    I had my biopsy last Wednesday and it didn't go well at all. I was
    told that it would be 1 of 2 diagnoses…Lupus or Lichen Planopilaris. If it's Lupus she said it would be really hard as it would escalate the involvement I already have from the Scleroderma. If it's the other the hair loss that I have (and a handful every day) would be permanent. This disease stops any new hair growth so you lose all of your hair, including the eyelashes and eyebrows. When I went online and looked at the photos you don't look like people who have chemo loss of hair it's right out of the horror shows. It's downright hideous. Vanity being what it is I'm almost hoping for the Lupus but I know in my heart its probably the other just by the volume by which I'm losing my hair. Just all-around depressing. So I get the results in 2-3 weeks. The hits just keep right on coming for me is all I can say. I hope your news is better than mine and I will be saying a prayer for you. Hugs.