Cutaneous lupus

I've had lupus maybe 6 years or so but only properly diagnosed 14 months and have been on PlaquNil 12 months now. It has kept the rashes and outbreaks at bay only one or two outbreaks since and not as severe. In the last four weeks I've lost so much hair you can almost see my scalp through it, mw whole body is tearing itchy and my scalp feels like there is something crawling all over it it sounds mad but I can almost feel the hair falling out strand by strand if that makes sense. I'm always tired (though I do have four kids) plus every time I stand I'm gettin dizzy and my eyes go for a few seconds before the dizziness stops and I'm ok then. Does anyone know if this all this means anything or have you had this before? I'm n't due back to specialist until November. Thanks in advance.

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  • Sounds like you need your meds adjusting, you should be able to phone your Rheumy / Nurse to get advice. Most of my Lupus control is done over the phone :)

  • Hi, Sorry to hear you're having such a bad time at the moment.

    I used to suffer with such an awful itchy scalp and found that the body shop ginger ant-dandruff shampoo (I didn't have dandruff) really helped to soothe it. I have lost a lot of hair too (now I shave the little I have left off and wear scarves) but still use the ginger shampoo and rarely suffer with the itching.

    I can also empathise with the dizziness. Its such a horrible feeling and completely debilitating. I have 3 kids and found the dizziness stopped me doing so much with them. I had many tests done which all came back negative. I now take a vitamin B12 (methylcobalamin 1000ug) every day which I get from my local health food shop. Its perfectly safe to take and any that your body doesn't need gets expelled in your urine. I found this really helped my dizziness.

    ....My initial B12 result that was done at the GP came back low but within normal range however the 'normal' range in this country is much higher than the 'normal' levels in Japan or the US . If I lived over there then my levels would have been scarily low which is why after much research on the internet I decided to just try taking it from my health food shop. Within the space of a week I was noticing improvements.

    I hope that helps a bit and I hope things improve for you soon

    xxx

  • I used the ginger shampoo for awhile. Helped get me back on a healthier scalp. I have been putting sesame oil on my scalp every day for 1/2 hr, and the itching has improved tremendously. I can see my scalp through my hair. I hate it. And I seem to have a scab on the back top of my head.....tiredness ... Ugh! I have a lot on and off. I take b12, complex and vit d everyday. I am not sure it helps with the tiredness. I have dizziness on and off and terrible today. Walked into a couple of walls in the middle of the night. I get out of bed, and lose my balance. Ugh! Hope you feel better!

  • Hi Natura,

    you mentioned that you have a scab on your scalp....did it just appear one day?.... Im asking because I have a scab which has just appeared on my scalp over the last couple of days. Its not particularly sore but looks really unsightly.

  • Thanks all, I don't have any scabs etc on my scalp its totally clear jus sore and itchy. Went to my own doc yesterday she done bloods she thinks maybe thyroid or iron etc but I defo think its somethin to do wit the lupus, if these tests come back clear I'll get onto the specialist again try get an earlier appointment. Doc gave me a special shampoo to use once a week and a steroid ointment to rub on scalp twice a day which I don't know why as they are both for conditions tat I don't have. Who knows at this stage.

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