That would be a scary thought because I had a biopsy done! I do hope it was wrong or somehow I broke the mold in the belief that terminal means permanent
Wonderful news about your hair. Could well be the pred dampening down your flare!. Interesting to see what the docs say. Hope you enjoyed the Christmas party. X
Great news - really delighted for you! I had alopecia from the age of 9-11 but it grew back. Then about 9-12 months after giving birth to my third son, I had post gestational alopecia and my GP thought it was terminal too. I was put on steroids because of severe eczema as well and my scalp looked rather like yours at this time only with eczema rather than lupus rash.
But one day I realised that there were bristles all over the bald patch and felt just as you describe - euphoric! I must say I've never looked back so I really hope the same applies to you. I never take my hair for granted these days -I treat it like it's gold!
Thank you Twitchytoes. I am so hoping it will grow back. I don't care if it takes 5 years. It has been a real test of my self confidence. Makes me so angry I cry, threaten to end my life over it then there are days when I walk with my hair down or out of a hat and don't give a darn what other people's reactions are to it when they see it (but then the wind gets to it and it stings).
I know I would feel the same now too. I can't recall being as distressed by it when I was a younger woman but I think I was so used to hair and skin being terrible that I just expected hair loss etc in those days. Now it's thick and I love it and always check with the hairdresser but all fine for 19 years now. I recall getting terribly worried about starting on methotrexate in case it caused hair loss five years ago but it never did. My eczema also went away after a lifetime when my menopause started and has never come back either. All my problems now are invisible and your post has reminded me that this has many merits because I look much better in my 50s than I did in my 30s! Hoping same applies to you perhaps (minus all the invisible nonsense of course!). Hopefully it won't take five years to grow back. X
Great news! My mum had bald patches she was told were permanent, then they grew back. Looked like tufts of cotton wool to begin with, then full normal hair, usual colour, grew back.
hi Lupiknits. THANKS FOR THE NEWS ABOUT YOUR MOTHER, I AM A FEMALE AGED 74 AND HAVE HAD LUPUS SINCE MY 20'S BUT THE LAST 4 YEARS THE BALD PATCHES HAVE BEEN THE WORST EVER SO YOU HAVE GIVEN ME NEW HOPE
DEAR Lupiknits THANK YOU SOOO MUCH I HAVE PRINTED YOUR MUM'S SCALP & COMMENTS & WILL SHOW IT TO MY GP ALTHOUGH I DON'T THINK HE KNOWS MUCH ABOUT LUPUS. GIVE YOUR MOM BY VERY BEST WISHES. REGARDS GERY
Feel so happy for you. Just keep believing that doctors aren't gods and they only have limited knowledge to our "enigma" the loop. So good on u & congratulations to both of u! Here's to more hair & better health to u. God bless xx
I agree, I was so happy to find this link, by accident, lol 😂 it's nice, but sad that there are other people with the same symptoms, I also suffer from alopecia areata, and have found so many people suffering with the same illnesses, every time I log on, I see something that I am going thru, or something I've been thru... 😉😇 sad to say, but it's comforting ☺️
Betrayal.com is a podcast or perhaps Utube. It consists of many medically associated people discussing the autoimmune diseases which are rampant. The point being that our typically trained allopathic physicians have no clue about getting to the causes of autoimmunity. Thus if one doesn't know the cause, one can only give drugs to surpress the signs and symptoms., not effecting a cure but a cover up. I cured myself of life long bronchial asthma, but it took five years of intense study and listening to my body. I also had a VERY supportive doctor who finds my success almost unbelievable as I was extremely ill when I found her. What drove me? It became obvious that the drugs were only masking and not making me better other than those which allowed breathing during emergencies. Some of the drugs were actually causing more damage. Science proved this many years later. I pray that all of you will be pro active and find out what is sending your body into distress. I am now seventy three years old and do not take any drugs. No asthma. Hopefully you can locate this program, but if not read everything you can get your hands on and listen to your body. This website confirms what these medical professionals are saying. Blessings.
That is wonderful!!! It was pointed out to me a month or so ago that my bald spots are also starting to grow back in. It was SO uplifting! That means the treatments are starting to work and the body is starting to heal.
Lara4228 omg thts brilliant news ! So happy for you I can't imagine how U must be feeling but I too hope I will feel as elated as u are one day!!! Bless you 😚😚
Hi, I had a lot of hair loss going on recently by the handfuls. My endrocrinologist told me about Biotin it can help hair grow back an stop the hair loss. I've been taking it for 2 weeks now an my hair isn't breaking of falling out like it was. I just bought the shampoo an conditioner too with that in it to help more. Maybe you can try this to help your hair grow back in the bald spot even more.
I know Miracle happens i was partially paralyzed as a 19 yr old an was told it was due to Scoliosis . They would have to put a metal cage around my spine. Well that weekend before surgery my church prayed an anointed me all weekend. That Monday I went back to the Dr. He said your spine has straighten out for the most part an you no longer need the surgery. He said if he hadn't seen the xrays done an read them himself he would swear someone screwed up majorly but that wasn't the case .. He said we got a Miracle at work here! I've also survived cancer 4 times.
My home town is about a 6 hour drive from Montreal, my boyfriend 'suggested' we go there tomorrow for a visit, as he has never seen Hamilton. I agreed, then he asked about seeing my mom.
I called her and we had a wonderful conversation! The last one she damned me to Hell. Every call is like a box of chocolates, you never know if your going to get the you fancy or the one you hate. Today was a nut cluster chocolate (one of my favs lol).
We spoke for over an hour. She might even meet us tomorrow!
They decided it was in my best interest (and I do agree) that they could not help me.
They told me I don't have SLE (which blood work has always said that and they go only by blood work) but my discoid is definitely in desperate need of critical attention, which with me living in Edmonton and I would need to see their dermatologist often, it wasn't a very feasible solution for me.
I was advised to go back to my GP and have him refer me to a dermatologist who works with auto-innmume diseases (which is something I've been doing for almost 3 yrs now).
But....they do definitely agree, my hair is growing back! Woot woot.
It comes back white then in time will develop pigmentation.
What frustrates me the most is all my weird and odd pains, twangs and things are going back to being dismissed. Something is not right in my body.
Anyway, I'm glad I came to Montreal, even though I walked out knowing nothing different, at least I know I tried
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
told i have lupus then i dont then i do, driving me crazy, why does this keep happening
What is happening? 
what on earth do I do?
