Hair loss ?

Posted , 2 users are following.

has anyone suffered hair loss with PR?

have had PR for a month now and first diagnosis was a fungal infection and given a shampoo to use as a body wash and boy did that cause the rash to erupt!

went back a week later and given a strong steroid cream for chest and hydrocortisone cream with antifungal to use on rest of body .

told to use these creams twice a day and persevered for a week but the hydrocortisone just seemed to make it redder and sore.

what did happen though after covering all if my body in these creams fir a few days is that my hair suddenly went very limp and lost its shine and started to shed a lot more than normal so back again to gp and diagnosed with PR and stopped the creams apart from emollient . i mentioned hair loss but he put it down to the amount of stress and anxiety i have been under lately.

has anyone else suffered hair loss with PR?

still falling out and added to rash is really upsetting believe me !

Hairdresser thinks linked to heavy use of creams so am praying it settles down soon !

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2 Replies

  • Posted

    First: Poor baby!!!! You are still going to the same bumbling doctor who misdiagnosed you twice????? Did this doctor finally give up on guessing and do a biopsy? I am a ranting advocate that patients who PAY (you or your insurance company) DESERVE to get a diagnosis, not an educated guess. A scrape biopsy should tell you exactly what you have. Mine did. (After being misdiagnosed with ringworm for over 6 months). Now, hair loss.... I had PR for over a year. I had it neck to ankles, in my mouth and on my scalp. Not hands, feet or face. I never had any hair loss from it. My hair never felt limp. I am not saying this does not happen. PR is weird, and so many people here experience stuff that is not in the "normal" course of the disease. Like weird toothaches.

    There is a cousin disease called lichen planus that does affect the scalp. It does make hair limp and then fall out. See lichen planopilaris. It is often confused with PR by doctors. Do not look at some pictures of the rash, look at a LOT of pictures of the rash. PR usually starts as bumps, then grows to rings, that are slightly raised on the outer edge, and dry (no liquid in them) with an almost flat part inside the rings. Lichen can LOOK identical. Lichen is a lifetime disease, whereas PR is a "one and done"- you get it, you get over it and it almost never comes back.

    If you have not had a biopsy go and demand one. You are paying. (or insurance is, but you are paying insurance so same thing). The doctor works for you. Tell him/her that your symptoms do not fall in the normal range of PR, but do fall in the normal range of LP, so you would like a definitive diagnosis. DO not get a core biopsy. A scrape biopsy is all they need to do.

    If said doctor then diagnoses you with eczema, fire him/her. Eczema is a catch all phrase for "we don't care enough to find out what you have". It includes at least 10 diseases that range from allergies, to fungal, to parasitic to viral.

    Anyway, keep us informed, and try PrrEze, that worked for me!

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