Lupus and hairloss please help

Hi. I've had lupus since I was 14. Now I'm 24. The first symptom that I got was hairloss. After doctor found out it was lupus and gave the medications, the hairloss stopped. But it was coming back again about 2 years later. Then after having hairloss for 2 years, it stopped. Now, I'm experiencing this hairloss again. My hair is thinning and Im so afraid. Since Im a woman it is so frightened for me. I didn't really know how to control this because I always had my medication but it didn't help. I already tried olive oil to my scalp, and others hairloss products but it seems didn't help. The doctor's medication seems didn't work for hairloss too. Anyone had similiar experiences? Please share because Im afraid of losing my hair, and I have no clue why medications didn't really work for my hair. I already told the doctor but he just said my hair was okay. Yes it looks okay but I know it is thinning. Please help.

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66 Replies

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  • same problem here.I am also facing so trouble for my hair also.I am just 18 but my hair is so thin..and my doctor also says its ok.but I know it is not czuse my hair was so thick and silly but they are so thin and look like they have no moisture...can u tell me which products or herbal products u have used in your hair??

  • I used bertolli olive oil, actually it wasnt for hair but I searched online and some people said it helps, but it doesn't really help. Right now Im using baby shampoo and baby hair lotion from Zwitsal and still looking for the result. I heard some people using Nioxin shampoo but I don't know I haven't tried since it is so expensive.

    I know it's so frustating because I feel like everyday my hair is getting thinner and I dont know what to do.

  • same feeling.u know its a shame for a unmarried girl.don't mind we all know that selena gomez also has lupus.so how she controls all the hair falling.I haven't use Nioxin shampoo too.is Nioxin a world wide product??cause I am from a different country.

  • Im not from UK too but I think u still can buy it in your country. Yes selena is an inspiration but we dont really know if shes experiencing hairloss because her hair seems fabulous. Do u have another symptomps besides hairloss?

  • yes..I have ssome malar rash on my face.and have scars on my body.which left black marks.they come out sometimes in red shapes and they turn black.I am on steroid and my scars haven't gone properly.I have fatigue feeling also.sometimes I sleep wherever I am.don't think about anything cause I cant do work properly If I don"t take rest.and most irritating part is swoolen hands.I cant work properly for this.I don't feel energy sometimes.it hampers my studies.but nothing to doo cause I have lupus and I have to live like this.so I try to accept this.

  • For me sometimes I feel so dizzy, also my skin is so dry. But Im not so sure its from lupus or its just me that having dry skin. I was curious when selena gomez said shes having chemoteraphy because I never know that chemoteraphy is also for lupus. She seems so healthy. I wonder what medications that she got.

  • I also wonder how she is so cute and beautiful!!and there is no sign of weight gain in face.but I look like a fatty ball.

  • lol me too. with the hair thinning it makes my face looks even bigger..

  • yes same problem here.but I have dry skin also.nowdays I get angry nd don't know the reason.I always shout at others..I cant hold my frustration

  • I got dry skin too, but for skin I usually manage it with body cream, not body lotion. Body lotion isnt enough for me. Did u experience losing other hair such as eyebrows and eyelashes, because I experienced that, but for eyebrow and eyelashes I could manage it with argan oil

  • yes. I have less eyellashes. they arenot seem properly.they are thin.

  • U should try argan oil. It works for me. Still wondering why it doesnt work for hair. But my actual hair is already thin.

  • organ oil means??I think castar oil is good for hair.but don't know cause I didn't use it.but how about ur face??is it ik??I have gain weight in my face.my face look.like full moon.and its look sometimes fatty cutue baby.don't know what I shhould do??how to control this??I have stopped eating butter,egg,sweets and healthy food.I don't eat junk food also.but don't understamd how to control fat face??how u manage??my gp is not comcern about that bt t don't look good because of this fatty face.I cant take stylish picture u know at the age of 19 how a girls feel about the awkward looking.or fatty face.

  • Yes I mean castor oil, but it didn't work for my hair. My face look fat too. The thing is, my normal face is already round, then I got full moon too. It is a normal process because of the medicines. The drugs cause that. The full moon face came from the drugs, not from the disease. If we reduce our drugs, especially the one with steroid, our face could be better. In my experience, I have very fat face at first, then after I got better doctor reduce my dosage then my face looks thinner, but it can't really go back the way it was. What medications u use? I also learn that if I have thicker hair my face won't look that fat. But since my hair is thinning it will be a problem for me.

  • I am on 7.5mg steroid and taking methotrexate10mg and on 200mg hydroxychloroquine.also taking vitamin e capsul for hairfall and vitamin d.my face wasnot fully round it was not so fat or not so long like I cant explain bt not so round.bt nowdays my face looks bigger nand look fatty also.what excercise I shhould do for this?I am terribly tensed

  • My doctor told me that what makes our face fat is steroid. Right now I'm on 4mg steroid to, for once two days. Vitamin doesn't cause full moon. I don't know about the exercise, but I read that walking, and cycling is good for us, but not jogging. Once you got lupus handled, doctor will reduce the dosage and you will get better. I know for our age its so difficult to handle. How long have u been having this disease?

  • just 7month having this incurable disease.I have to sttruggle with it all of my life.thankz for answering so nicely.hope so your hair will grow thicker.and all your problem will solve.

  • thank you. i was 14 when I got this so I knew your situation. Im assuming u are in college now. Did u experience getting better after u got medication? If you got that u can mention to ur doctor so he could reduce your dosage.

  • hmm I am getting better and now on 7.5mg which is normal for a person my doctor said.hmm I am now on versity.ita so difficult for a person to coppe with this disease at this age

  • It is frustrating to hurt all the time. We do the best we can☺

  • My understanding is that both the Autoimmunne process and the drugs causes hairloss, I tried everything on the market (including Nioxin) but nothing worked so I was left with very thin fine hair.

    So for me I use a halo hair extention that was cut to my own length by my hairdresser you fit it in a minute and its yours forever its lightweight and you forget its in, in fact everyone comments on how nice my hair looks.

    My hair is in a sassy bob and it looks thick and so natural - you can get them in real hair for about £30 (get the one with the 2 clips but Not the clip in hair as that is heavy and it hurts!!!)

  • Yes I heard that some medications cause hairloss too. But I think for me the trigger is stress because I started to get hairloss since I got a really stressing problem. But then I got stressed because of this hairloss so it is like being in a circle. I've tried biotin for a week but for me it didnt work instead my eyes got swollen.

  • I was getting some serious bald spots and thinning to the point of seeing my scalp. Ugh. Healing my gut and eating certain foods, fixing the thyroid seemed to help.

  • Thanks for the reply. Actually Im surprised with all the replies because I realized there are so many people having this experience too. I thought it is just me who cant handle that hairloss even though I already got medication. I search it online, some sites say that lupus hair loss isnt permanent but some say it could be permanent. I believe its not because I already experienced not having hair loss. And I hope there will be a solution to solve this because actually so many people with lupus experiencing this.

  • Hi May I know what food u usually eat to prevent hairloss? Also I don't know about the thyroid, do you mean u checked your thyroid hormon?

  • My sister has hashimotos. My thyroid doesn't show anything . I just found a program that fixes the thyroid with food and supplements. It was claimed to be anti inflammatory, so that is why I chose to do it. I believe lupus is an inflammatory response.

    I found the hair stopped growing so thick on my chin ( started taking off with an electric tweezer), and my hair stopped thinning. Its basically a food cleanse so your body stops attacking what you ingest. And I had to heal my gut and liver (which is where your body processes thyroid hormones from t3 to t4. Or is it the other way around) Making chicken bone broth once a week and drinkIng everyday is healing my gut. I was getting colitis type symptoms before i started this program.

    The hump i had on my back up by my neck between shoulder blades also went away. I believe that hump was from overproduction of cortisol. Not sure why this was corrected.

    I am still healing my liver which I knew was not good from the large liver spot I have had on my cheek 15 years ago. After i had my 2nd daughter.

    You can probably look online for some anti inflammatory diets. This program also told us to remove toxins from our home and care products. And no dairy, no gluten, no grains. Fermented foods are like natural probiotics. No pork. Beef , chicken and fish are good. No night shade veggies to begin with. I cant bend my fingers if i eat tomatoes or potatoes. But most veggies good.

    Look up and make smoothies as often as you can. Incorporate avocados for healthy fat.

    Everyone is different. Listen to your body. Pay attention to how you react when you eat something. If you get a headache, you may be allergic. Which will cause inflammation.

    Take care

  • I am in disbelief as I read these posts. :0 You see, I've been progressively sick for years (age 45) and been tested for Lupus at least twice with negative results. But I have all these symptoms (i.e. Hairloss, Swolen hands, fatique, actually on low dose Synthroid, hump at neck, severe joint joint pain, chronic migraines, 'sensitive liver, etc etc etc). I see so many specialists that I could cry. I tell my husband when I get the flu I dont even notice bc I feel like I have it all the time already. Advice?

  • Yup..slcoppedge....same here.. test was positive once, and then negative. So, I dont have it, but a lot of the symptoms.

    My best advice, since no doctor has been able to help me, heal your gut naturally. Look up diets for liver healing. Better than sitting around with no help from doctors.

    I take digest enzymes and probiotics too because my body doesnt digest anymore. Put a heating pad over your abdomen after you eat or when your liver is bothering you. I get discomfort in my liver often.

    I am using oils too. Look into oils. The program I did told me to put rose hip oil and castor oil on my liver everynight. I dont know if its working, and I really dont care..it makes me feel like I am trying at least. I have been doing that for 5 months. Good to have on when you use your heating pad too.

    Sadly it doesnt fix all of our problems, but if I can get one thing to work for me, I am happy. (My hands are terrible the past two days)

    Hope this helps.

  • Thank you. I will never give up bc it's not my nature. It's just frustrating to not bave answers. We are in tune with our bodies and KNOW something is wrong but doctors won't listen. The worst part is my memory is so bad I won't remember my symptoms until after I leave the doctor or the get bad again. For example, I can't remember to tell them how bad my memory is. :(. I'm not sure they believe me snyway. I have TERRIBLE sores on my scalp right now, but I don't even know if I've ever told a doctor about that. I won't remember by the time I get there. And besides, I have so many specialists that I'm not sure which doctor cares about which problems. It's SO frustrating.

  • My scabbing stopped. Try to look up bone broth. For some reason,that healed my scalp from the inside. It lines your intestines like a glue.

    My scalp is still a little itchy, but nothing like it was. I had scabs, bald patches, my scalp was pink. (Less pink now). And I couldnt stop the itching. The hair has grown back in the left front. Very thin, but its hair. Lol.

    Basically bone broth is a chicken in water with carrots, celery and onions. Cook 24 hrs. 2 tbl vinegar in the water for 1/2 hr before cooking. Suppose to take chicken meat out after 3 hrs. And organic chicken if you can afford.

  • Although I'm fairly new to them (since September 2016) I do love my essential oils. Peppermint really helps with my migraines and headaches. I have also tried frankincense. But those are the only two I've tried so far. I really like the heating pad idea, though! Thanks!!

  • Hi. Please dont give up. The reason I wrote this post is Im seeking for advice from others and even though Im so stressed I didnt want to give up. The fact that you ended up here means you are not giving up. I believe there will be medications that works. I think we all could try natura's advice for the diet.

  • I think I replied to you but put my reply after the previous person's post, sorry!!

  • I had a Gut Permability Test by biolab.co.uk/print.php/cmsi... and that was perfect, fixed my thyroid on T3 for Hashi's

    Luppy doc says its the autoimmune process that attacks the hair follicles for a lot of us, just as it does the face if you get discoid or rash

  • Interesting. I still put my organic cold pressed sesame oil on from time to time. Anti bacterial, anti viral, anti fungus. Relieves my itchy scalp. Not sure of it helps with hair loss. But, some speculate it makes the hair thicker.

  • You poor girl. I am much older and the bald patch I have and thinning upset me. Some Drs do inject Steroid into the scalp - painful but works. I take a spoonful of Coconut Oil a day as someone recommended. It hasn't been too long yet but I have my fingers crossed that at 3 months I will see hair growth. Good luck

  • Do u mean u drink a spoonful of coconut oil?Ive tried drunk a spoonful of olive oil but it didnt work. I have read about injections but Im afraid. Also I dont really have bald patch it looks like mine is more diffuse. Do you also use coconut oil for hair mask too?

  • I started taking 5,000 mcg of Biotin a day about 4 or 5 years ago and noticed a remarkable decrease in my hair loss (takes about a month to notice it working). If I run out of my Biotin and take a couple weeks to get more, I notice more hair in my shower drain. It really makes a difference. I order mine online in bulk at puritan.com but run down to to closest drugstore and start today!!

  • Biotin didnt work for me. I tried for 5 days but my eyes got swollen and even more hairloss. I use argan oil it works for my eyelashes and eyebrows but not for hair. Im also trying fish oil, my doctor said its okay for our health even my doctor he used fish oil for himself. Im still having hairloss but since its good for health I will continue it.

  • What is Biotin can we buy it over the counter?

  • Biotin is a supplement, you can buy it in watsons or guardian. It could help hairgrow for some people. U could try that.

  • Coconut oil ingesting is excellent for brain healing. Even alzheimers association recommends it. I cook with it. I have trouble getting the high fat through my liver, so i dont actually eat a tsp a day anymore. I know someone who eats 2 tbl a day.

  • My hairdresser commented on a clients hair improvement and she told him she took a teaspoon a day ! He passes it on to every lady who suffers. My sister who is very knowledgeable had been nagging me for ages to try it - she got me to use Turmeric too - look at their website Turmeric4Health.

  • Thanks for all the answers. So, there are 2 things new I learn from here. Coconut oil and anti inflammatory diets. What coconut oil brand did u use? I will try to look it in my country because im not from uk.

  • Try your supermarket or health store - they keep it in the oil section here. Where are you?

  • Im from indonesia. Yes sometimes I saw that in supermarket but maybe u use special brands. I will try it.

  • Hi Babymilo,

    Do not feel disheartened, hair loss is a common symptom of lupus and is known to happen in some people on antimalarials, methotrexate or steroid treatment and in most cases when cytoxic drugs such as cyclophosphamide are used. We published a factsheet on ‘LUPUS: The Skin and Hair’ which I hope if of help to you: lupusuk.org.uk/wp-content/u...

    In some cases, people experience periods of remission where their lupus is controlled and they feel relatively better. However, this can vary from person to person as lupus presents differently in everybody.

    You may like to check out our blog article on the topic 'hair loss' here: lupusuk.org.uk/coping-with-...

    Wishing you the best of luck, let us know how you get on.

  • Thanks for the Reply. I will keep my update here. Wish I could get the answer soon.

  • Today im having such a breakdown after taking a bath because I notice I got more hairlosss. Just want to know, do you become easier to get mood swing when u have lupus? Because i think that happens to me.

  • I began to search anything about anti inflammatory diet. I also found out that actually theres an anti inflammatory shampoo, named Regenepure and Revita. Anyone ever tried this?

  • Hi - not sure of the shampoos but I use baby shampoo because it must be gentle? Don't wash your hair too often my hairdresser says. The mood swings are normal because of what you suffer. I take an anti depressant which I never thought I would - it really really helps me. Good luck

  • I use baby shampoo but I still got hairloss. Yes I wash my hair once two days. I don't want to take anti depressant. I'm looking forward to diet. Do u eat special food diet?

  • Babymilo....if you dont want to take anti depressants, like me, i would recommend reading up on lemon balm. The herb. I personally use it, with no side effects. It helps me with depression. I get bouts of anxiety/ depression.

  • Hi Babymilo, I would recommend that you discuss any complementary therapies with your consultant before starting them. It is important to bear in mind that what works for one person with lupus may not for someone else or could be potentially harmful. It is important to be warned of any possible adverse effects of interactions with other treatments.

  • Baby shampoo is just kinder for your hair - I eat lots of fish and vegetables. I only eat gluten free bread, biscuits etc. Gluten free is supposed to help us. A good way to push the sadness away - walking and looking at nature, keeping very busy and helping others. I am sole carer for my sick husband and it was very hard before I took antidepressant - I cope better now. I do count my blessings every day.

  • I use a coconut oil shampoo and conditioner natural from vitamin shop. Seems to help.

  • Right now im tying revita shampoo. Anyone knows? I just found out that its anti inflammatory shampoo. I dont know it will work or not but at least Im trying.

  • Ive run into a lot of articles on the internet about anti inflammatory diet. I think it will be a great news for us because a lot of people found that its working for their hair.

    Not only people with lupus, but I found out people with alopecia also getting better using this diet. You could search on youtube. I think this could be a good thing because alopecia is also an autoimmune disease so my guess we're not so different.

  • As my post title I got hair problems. I have hair loss. And I loss not only hair on head, but also hair on all my body. It's all thinning out, but in a slow way. I am still having hair loss which is still a problem to me, but since I used castor oil my eyebrows and eyelashes looks thicker. I have been using olive oil for my eyebrows for about 3 months, then for the past 1 month I use castor oil for eyebrows. I'm not sure which oil that works for me, but my guess is castor oil because the last a month, I use castor oil and I notice my eyebrows looks thicker.

    First week I use, my eyebrows even have more falling. I don't know if it called shedding or not. I was afraid at that time but I just went for it because I think it just eyebrows so I could use it as experiment for my hair. I started notice changes in a month, my eyebrows looks thicker and more black (color of my eyebrows). I use castor oil every night before I go to bed, sometimes I use it for hair but only a little because castor oil is sticky and I'm afraid my pillow will be dirty. Since castor oil works for my eyebrow I want to use it for hair to test if it's working.

    I know that everybody has different reaction for this but I just want to share my story. Maybe it could work for you too. However, if I found what's finally working for my hair loss I will post it here too.

  • Hi, I have been newly diagnosed with lupus but have had alopecia (hair loss) for over three years - I think my hair loss is almost certainly connected to my lupus.

    I lost all my hair within two months initially which was incredibly hard. I have had some patchy regrowth but now still mainly wear head scarves and wigs very occasionally but have learnt to cope with hair loss over the years and accept the way I now look and to some extent celebrate it, though I still have the odd bad day! Now I'm going through the acceptance process with lupus which has its ups and downs as many folks here will know well.

    May I recommend Alopecia UK as a most excellent source of support for anyone with hair loss and coping with this very difficult condition. It's a charity run by people with alopecia for people with alopecia. They also have a lovely closed Facebook group which is incredibly supportive and full of men, women and young people who live with alopecia (not all due to lupus but some members have mentioned this & other autoimmune conditions).

    I hope this helps someone. Happy to talk about my experience with alopecia with anyone who might find it useful.

    S

  • Hi, perhaps try the supplement that I've been using to support the hair generally with collagen and minerals that promote hair growth. The thought is that our body due to Lupus is undernourished and very toxic so we are not getting the necessary nutrients. I too had alopecia and resorted to cutting my hair and getting a wig just in case and now I have long healthy hair and I wouldn't change my regimen for anything.

  • Hi, I'm interested in which supplements your using for your hair?

  • I use a Collagen formula and a mineral formula, you have to have a practitioner code to purchase and I promise, my hair is down to my waist and as healthy as they've ever been. I lost lots of hair to a point of cutting and getting a wig in the past when I was first diagnosed with Lupus and found this to be the best. It's not that expensive but it's a process of registering on xymogen site and then purchasing from them. Still interested? I still use nioxin treatment to the crown of my head, don't know if that helps too but I sure have lots of healthy hair now.

  • Hi y'all..

    I have the same problem with hair loss.. However, I'm taking 1, 000 folic acid 2x a day.. And for some reason although thin and falling out it has grown in length more than ever in my life??

    I did my own test where I stopped taking folic for a month and surprisingly my hair fell out more and looked worse? Went back on and started looking better and although thin feels thicker and keeps growing? Strange. But just a suggestion.. My hair under my arms and legs are completely gone?

    Hope this helps.. Ox

  • Thanks for the reply. Will try to look on that. I'm also taking fish oil 1000mg but I don't think it helps my hairloss.

  • Just want to write a short update :

    I'm still having hairloss, but I think emotionally I'm getting better. Like I don't really stress anymore about it, and try to keep my mind busy with work stuff. Also I tried to eat healthy food, but sometimes I still eat gluten and dairy products. I drink smoothies everyday, which I think it helps me a lot. I also found out that I have more hairloss when Im on my period. So it makes me think that my hairloss is because of hormonal thing. I use DHEA cream and I feel it works on me although Im still having hairloss but it makes my skin better. And for people who have lupus that also experienced dry skin, try to eat a lot of vegetables and fruit, it works on my skin.

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