Please someone Help

My hair are all going , medication not working I can't cope , I rather die that have no hair, sorry everyone x

Lupus run and ruined my life and now it's killing me slowly and painfully I HATE lupus!

[Natura]

Maria...I am so sorry that u r sad about hair loss. I don't have any suggestions. I am losing a lot of hair too, and now have a somewhat bald spot in front by my part. I try to keep my hair pulled back where I keep the hair down and not pulled up and back. I wonder if a different haircut would help. Not sure. I hope you can find an answer or accept this. Someone recently told me when I was feeling bad about my life, to practice gratitude. I am thankful for my legs, so that I can walk. I am thankful that I have a warm house to live in. I am thankful that I have food on my table. I am thankful that I can still drive, see, etc....I have a friend battling losing her eyesight in one eye completely from glaucoma. I cried to my husband the other day because of my muscle weakness...he said you just have to do things differently. It doesn't take away your pain, but maybe helps us to see other things that are good in our lives. Hope you feel better...

[Hidden]

My hair stylist changed my parting for me as I was going very thin on one side. This has helped and having naturally curly hair. I'm glad of a it of frizz nowadays...

[ShannonB]

I am really sorry for you and hope things improve for you soon. It sounds like things are really tough right now.

[Purpletop]

The loss of hair is connected to the disease activity, so finding the right treatment will improve the hair loss. You said that no medication is working - have you tried everything and still not working? Have you increased dosage of current medication or tried several drugs?

My hair is affected too when lupus is active. The hair loss doesn't fully stop even when most of the symptoms are gone but my rheumatologist doesn't want to increase the dosage of my immunosuppressants "just" for my hair. When he puts it that way, I agree that some hair loss is acceptable in that case.

Try and speak to your doctor and see if the treatnment can be tweaked to take care of the major symptoms. Once those are calmed down, the hair loss will slow down a lot too.

[misty14]

Hi Maria

Your obviously going thru a very tough time with your Lupus. Are you due to see your Rheumy?. If not could you try getting an appt either thru your GP or being on the cancellation list at the hospital?. In view of your hair loss you could do with treatment help. Lupus as an illness is the pits to deal with!. Hope I've helped?. X

[browneyedgal]

So sorry to hear that you are feeling so bad about your hair. With lupus this does happen. I lost alot of my hair and felt the same way you do and now its a third if its thicknesss and very fine too. Somethimes I use a dry hair shampoo to cover the thinning areas. It works for me, it might work for you. xx

[Wendy39]

Maria68 I'm so sorry to hear that your hair is still coming out. I think I replied to one of your posts about hair last week. You seem to be really struggling right now. I know it takes a long time to accept a Lupus diagnosis as well and depression for me was part of the Lupus but then also dealing with the diagnosis afterwards. Did you go to your GP and tell him honestly, how you are feeling? I would agree with the posts above that your medication may need tweaking to get you on the right path. Do you have any family or friends that you can talk to, for some extra support? Best wishes. Thinking of you.

[madmagz]

Hi Maria

I am so sorry that you feel this way about lupus and what it is doing to you, I have lost my hair now for the third time and quite honestly I embrace it! That might sound strange to you because you are not in a good place at the moment I can understand that as I was gutted the first time my hair fell out but once I realised how much money and time I saved by having no hair I started to view it differently. It did grow back beautifully thick and long, then when it started to fall out again I shaved my head and raised money for charity. It came back again beautifully long and a different colour again, it becomes almost a guessing game to me wondering what colour it will come back each time, it has fallen out again now and I have now been bald for a bout four years and have a wonderful variety of bandanas I wear these as they fit under my crash helmet and I can get hold of lovely fabrics to make nice ones to go with feminine outfits if that's what I want, I find them more comfortable and much cheaper than most other things - I can also put a spare in my pocket or bag in case it rains.

It really is a shame that you are in a place where you have not got acceptance of lupus and you hate it, as once I accepted it lived with it without it making too much difference to me I had much better quality of life. I now lead a full and active life, yes ok I have pain and a great deal of discomfort and my stick gets in the way but I live with that at least I am here to enjoy seeing my kids grow up. I know I spend long periods in hospital but I get some good books in and get the kids to bring them in for me if necessary.

I sincerely hope that you can reach a place in your life soon where you can accept lupus and then get on with living the life you have and make the most of it,

Good luck and all the best

Madmagz x

[kyliesinead in reply to madmagz]

Madmagz, I love your philosophy! I have lost a breast but the thought of losing my hair had always been a fear. You have inspired me and I'm sure I would do some crying if it happens, but, like you, I will then see how I can best deal with it and move on. Shell, you've almost made me want my hair to fall out so I can get a nice wig! Joking apart, thanks !

[jeevan05]

Hi,Maria

Please don't panic as lupus can be a rolercoastr of symtoms. As previouse comments. We have all experience hair loss and everything that goes with it..may be its not managed properly and meds needto be changed . I was on hydroxc had itchy eyes.do U have a direct line 2 speak to the nurses if so ring them c if U can get early appointment.

Like nutura said we. Have all our bodey parts..i lost my sister 10 weeks ago she was 48 and had.no illness leaving behind 2 children. At the moment that is the worst thing for me.

This can be sorted good luck..

[MargaretGail]

Hi Maria, If there is one thing I have had to learn this year it is that my hair does not define me. It has always been my crowning glory but alas no more. Then I rationalised that I would rather lose it through Lupus than chemotherapy. It helps.

[Light_for_Jesus]

Hi Maria,

I have never experienced hair loss, and so I cannot address that. Well, I think maybe I was losing some hair at times, but not in large amounts. I just remember in my early 20s I sometimes had hair sticking up on the top of my head like it was new hair growth. It was strange, but this was before I realized I had lupus.

I'll tell you my little story in a nutshell. I started feeling really fatigued and depressed around age 13. I had aches in my knees and when I'd go out in the sun I would break out in a rash. I had the butterfly rash across my nose every summer. Well, I won't get into all my personal family problems, but it wasn't good. I think stress and chemicals and overexposure to sunlight caused the lupus in me. Don't know for sure, but identical twins do not always have lupus even though they have identical genes, so this is not purely genetic, even though genetics are certainly a part of this.

I lived in a nightmare until I was 28, not realizing how very ill I really was. I was even homeless for a few years. I would get a job and work a week or maybe even three weeks and then get very ill. I dropped out of college after one year. I would just feel terrible and not be able to get out of bed. The doctors were saying it was "psychological" which really infuriates me now to remember. I try not to think about it, it makes me so angry with them.

I was diagnosed in 1983, when I was 28 years old. FINALLY, I knew what was wrong with me! I was so relieved to finally know the truth. I wasn't lazy or crazy, I had a disease. Whew, it was good to know what had been happening to me wasn't my imagination. This was not the end of my problems though, not by a long shot.

So then the doctors started giving me prednisone and some other drugs and they almost killed me. My body swelled up like a balloon, and I had a rash over my entire body. My heart would beat so hard every night I thought I would die in my sleep. That was the worst time I have ever had with lupus. I believe it was the drugs that mainly caused it. Drugs they were giving to me that were supposed to help me, but had brought on my worst WORST near death experience. This went on for months until I decided to treat myself. The doctors were making me much worse than I had ever been. One of them even laughed right in my face when I cried about my pain. That was a dead give away that they did not care if I lived or died. What was it to them? Nothing.

So, I began to think and realized that I had had this disease for 16 years without their "help" and without their drugs and was not nearly so ill. I thought I would treat myself the way my grandmother would have treated me if she had been alive and taking care of me. I went to home remedies like taking baths in baking soda or epsom salt. I remember when I was a girl my grandmother would say to me when I was sick, "You go lay down and rest and sleep and stop worrying". So, I would give myself those same instructions in my mind. Ahhh, to rest my mind and not worry. I quit the doctors drugs and quit depending on them for help, as they were useless and just making things worse. That was so obvious.

I started going to the health food stores and learning about herbs and nutrition. They told me some things I'll try to summarize for you. They said to try and eat 1/2 to 1 cup of seven different vegetables each day, and corn and potatoes don't count. It may sound like a big order, but they said anyway you can get them is fine. Juice them, steam them, raw is best, but it was really vital to your health to get the vitamins and nutrition from these vegetables. Fruits are good too.

They said no packaged meats like bologna, hot dogs, none of that stuff, as it was deadly and full of nitrites and nitrates, which is just poison. They said to start reading the labels on my foods. To stop eating junk and processed food. It is just not good for you. No white flour or white sugar. Cut down on meat, and try to get grass fed beef. Just try to eat food that was as close to what God created as possible. Man has contaminated our food. Very sad. Anyway, all we can do is do the best we can to eat right. In the world we live in, that is not easy. I try to buy organic when I can.

They also told me to drink distilled water. I did this for awhile, but now I drink bottled spring water mostly. I never drink cokes. I drink spring water with fresh lemon or lime juice squeezed in. Lemons are especially known to detox the body. Cokes and sodas make your body acid and an acidic body is a body prone to disease.

The way they explained it to me, is that our body can only deal with so many toxins, and then the immune system will break down. By toxins they meant the chemicals all around us, in our foods, water, air, and even in our home. They said after a certain level is reached we get sick. Our bodies just can't cope. I was definitely SICK! I was very sick. They really helped me get better. It took me two years of working on my health to get completely pain free. I was in incredible pain prior, but they helped me and I did get better.

I completely quit taking pharmaceutical drugs. I haven't taken a single pharmaceutical in 24 years. I take acidophilus and eat raw garlic cloves, and I try many other health food products. Garlic has probably saved my life. Oh, I should also mention that the herb "uva ursi" has saved my kidneys. When I was so sick I had kidney problems so bad the skin and flesh around my ankles almost touched the floor. Uva ursi cleanses the kidney and bladder and removes the water from my body. I can't say enough about this precious herb! I know it saved my life. UVA URSI ! !

I guess I should mention I get uva ursi at the vitaminshop online or vitacost. I buy the vitaminshoppe brand. It is important to get good quality herbs.

Also, the book called, "The Yeast Connection" was a big life saver for my daughter and myself. I believe lupus is Candida, a yeast overgrowth in the body. So, acidophilus and garlic and other natural products that kill fungus has always proven helpful to me.

So, Maria, please don't give up. You can feel better. Take responsibility for your own health. Figure out what makes you feel better and what makes you feel worse. Detox. Pay attention. Your body is talking to you. Listen to it.

I can tell you from experience this is a tough disease. I am not cured, but I do live with it and I cope, and I am no longer is severe pain. Things have improved for me, and they can for you as well. I know to stay out of the sun in the summer, but the winter I am able to tolerate more sun. I am very sensitive to the sun and also chemicals. I've eliminated most chemicals from my house. No perfumed sprays or cleaners for me. My immune system was completely shot for years, where I couldn't even walk down the detergent isle in the grocery store. Now, I am better, but I know to be cautious. Even getting new carpet in my house concerns me.

Don't lose hope. There are things you can do to improve your health. Things that work. You may never be completely well, but you can get better, much better. Your hair will probably grow back once the lupus settles down a bit. Sounds like you are in a flare at the moment. Sometimes I get in these moods and start feeling really sorry for myself and say "things will never get better". When I see myself starting to think that way, I TRY, I TRY to remind myself that I may feel bad a few days, but in a day or two I'll feel better. Sometimes I wallow in the self pity, but sure enough a few days later things aren't looking so bad.

Activated charcoal is also a detoxifier that helps me. It is supposed to pull the impurities out of your intestines and stomach. It does seem to help me.

[artemis5]

Can you write what are your lupus symptoms and why dermatologist told you your hair would not grow back? What meds are you on? If hairloss is due to meds, change them. If it's due to lupus, change drugs to manage the disease just like some of the others said. Try to write some more details about your lupus so we have a full picture.

[lynzard]

Good morning

I have no answers but just wanted to say how sorry I am that you are feeling so bad about things. It is so hard to 'stay above it'. I hope you start to feel better. As others have said maybe the gp could help.

Take care. Lyn x

[Hidden]

You have all my thoughts maria68 it's really hard I know I had my vitamin D checked 12 months ago down to zero had high supplement from Rheumy and have kept it in check since has improved things for me hair nails and fatigue etc improved just a thought if u had it checked out May help - try to keep your self up know its hard please try and lets know how you go thinking of you

[Silvergilt]

All my empathy; I am still undiagnosed, I keep making progress only to lose it. I used to have glorious hair and now I am on a medication which will make it fall out, on top of the fact it may not even work, and I have to wait for a committee who I've never met, who doesn't know me, who will never be actively affected by their decision to decide whether or not I have the right for a chance at disease free.

I used to be a goth-y chick, dyed my hair every colour of the rainbow. It was my crowning glory. To lose it is a huge blow, but I'm setting my jaw and I have found freaky, wild, expressive, crazy coloured dreadfalls,, hair wraps, glittering hair sticks and wigs. I swear to my various gods that while my hair may be gone, I'm going to look fabulous! And if people stare, so what? It's considered perfectly normal for a person to go and get plastic fingernails applied to their hands every few weeks and I have never understood that! Different strokes,

My hair and appearance does define me because I choose how I want to look, for my benefit, no one else's. Have a weep, then get up, and find your fabulous.

Good luck

[Paul_Howard Partner LUPUS UK]

Hi Maria. I'm sorry to hear that you are so distressed at the moment. Please seek help from your medical team urgently. Please talk to your GP about your low mood and the distress that your hair loss is causing. If your current medication isn't working, there are other alternatives. Your GP can hopefully refer you back for an emergency appointment with your consultant to discuss your treatment.

What are you currently on and how long have you been taking it?

If you need somebody to talk to, feel free to send me an email at [e-mail] or call the office on 01708 731251. I can talk to you myself, or give you the number for one of our Contacts, who are people with lupus that volunteer to listen and chat. Alternatively, you can also call someone like Samaritans if you'd like to talk more generally. They are available 24/7 on 08457 90 90 90

Please keep us up to date on how you are doing and access the support that is available for you.

[Hidden in reply to Paul_Howard]

I'm on qunoric 400 mg , losartan 25 mg, Viagra? For my blood circulation of hands and feet , the dr gave me an injection of steroid who will last 2 months , I've been on qunoric for 12 years recently increase the dose to help with the hair but doesn't work . Than you guys you are wonderful xox

[sylviaweller_79]

I haven't had any hair for about 10 years. It has grown a little but I have huge bald spots. So I wear wigs. The good thing about wigs is when you get hot just pop it off I was devastated when my hair fell out too. So it was my doctor who get me in touch with the wig people.

[kyliesinead]

Hi Maria and everyone else who has replied. Maria please know that this abysmal episode will not last forever even though you cannot see a way out at the moment. It's good that you're was angry with lupus , it will give you the resolve to fight it. One valuable lesson I have learned is that we can't control what life throws at us but we can control how we deal with it. If life throws you lemons sweetheart, make a bloody big gin and tonic. Madmgz, your comments on hair loss follow that philosophy to a T and have certainly given me something to consider. Things are very thin on top for me, what with female baldness in the family AND CTD, it's a wonder my crowning glory hasn't deserted me completely. If it does, I will certainly be following some of the advice from the wonderful people on here and will wave my bandana with pride. Incidentally, when I lost my breast, I looked on it as a surgical opportunity to get a better pair. Keep going Jun, we're all rooting for you.

[NeeNaw]

Hi Maria, I would doubt that there is one of the members here who cannot relate to your situation. I too was in your situation & it seemed that there were endless ads where girls tossed their flowing locks on my tv screen making me feel even worse - we are told that a woman's hair is her crowning glory - this was what I was led to believe. Then during a moment of lucidity I realised that I am much more than a head of hair, people shave their heads for charity, cancer patients shave their heads & to them it is a small price to pay for continued life. Worrying about your hair will cause you stress and the stress in turn will add to the pain, and the increased pain will lead to an unbearable level of feeling of not being able to cope. If someone was to say to you, take this drug, it will cure your lupus but while it works you will lose your hair. There are few of us that would turn down the chance to be "cured". Whilst this treatment will not totally cure your lupus, it may help to put your lupus into management and a greater chance of less pain & perhaps even a return to a somewhat normal life. It is also possible that the added stress of feeling that you cannot cope with this latest development will also increase the hair loss. What to do?? Start with the things that you can control. A different hairstyle that may camouflage your hair loss? Shave your head completely - I'm sure you have seen the women who really look much more glamorous without hair. Would you recognise Sinead O'Connor with hair? The drugs change our bodies, & this also makes us think that we are no longer the beautiful person we were before the drugs, but does your body make conversation? does your hair hold a child, that so needs your cuddles? or does your hair provide the shoulder that a friend needs? During one of my horrible episodes I was hospitalised & I met the loveliest young guy who had 2 small children (one of which was special needs), he had already had to have his 2 legs amputated, and a problem with one of the remaining stumps was causing problems that required further amputation. My heart went out to him, but during one of our conversations, he told me that losing his legs was a small price to pay as he could still hold his children, he could cuddle them & soothe them, play with them, nurse them to sleep. I then realised how hollow I was, he truly humbled me. My hair grew back, his legs did not and when I am tempted to feel sorry for myself I think of him and how he fights for life. This will pass, but your thoughts are currently being controlled by pain & feelings of loss which make them disorderly and it is hard to make sense of the chaos. Take life one day at a time, on a good day I end it with thanking lupus for being co-operative, on a bad day, I end with "ok mate, you acted up today lets try this again tomorrow and we will try working together". I don't always get a succession of good days, but lupus has robbed me of so much, I am not going to allow it to steal the person than I am and who I can be. With or without hair you are beautiful and lots of gentle hugs for the days ahead

[Hidden in reply to NeeNaw]

Guys, you are really helping me, thank you so much , lots of love, and to lupus lol x

[ebril]

I'm sorry and I think a lot of us are in the same boat everyone keeps buying me hats and scarves and I am tempted to shave the little bit I have left. And I was like you but now I think I may have lupus but I'm not going to worry about things I used to take for granted one being my hair because even though the hair has gone I'm still here with my children and grandchildren so to me hair is nothing now and I try not to let it define who I am. How about funky hats, scarves or even a new haircut which may help I tried wigs but they itch. I know it's hard but try and I mean try not to let you get upset too much just work around it that's all we can do . I'm sorry if this isn't what you wanted xxxx

[Hidden]

Thank you xox

[NeeNaw]

I think sometimes it helps to know that others have been in the unchartered waters that you are in at the moment, it gives you hope that it is possible to navigate them, and asking for help is a good place to start. Remember This too shall pass

[Triscichick]

Maria...

I was diagnosed with Lupus 18 months ago. I was allergic to Plaquenil, and methotrexate failed to do anything after nine months at increased doses. I felt like crap, and depression, acute fatigue, and joint pain plagued me constantly. I started on a glut pen-free diet last November, and then went on a strict anti-inflammatory paleo diet in January. I stopped all meds (20mg methotrexate and folic acid) in March. I feel better and have more energy now, I've lost 20 pounds, but my hair is getting thinner and my joint pain continues. I'll will take this over the way I felt on the meds but worry about the progression of the disease. I'm hoping that the diet will eventually reduce the joint inflammation, but I don't see it reversing the osteoarthritis that the Lupus has exacerbated. I've been seeing my rheumatologist every six weeks, and she and my PCP fully support my diet and exercise routine (walking 15-20 miles per week, cardio+weights+yoga twice/week). Both df my docs are Indian women who strongly believe in the therapeutic value of diet and yoga, especially Bickram's (heated) yoga.

[FunkyMumma]

I got referred to David Fenton at St Thomas' Hospital. I live in Norfolk, so it was a bit of a hike. He will prescribe you Minoxidil. It does work. It's £16 a bottle and you will get a lifetime prescription. Much cheaper than the stuff they sell in Boots. I've often thought about buying a natural hair wig, for the days when you want to look nice, but your hair lets you down. We all know how you feel. Make sure you take vitamins/minerals as some of the drugs for Lupus deplete your body of these.

[Cann]

I remember the feeling well, Maria, but the physical illness was so draining, I had to deal with the hair loss and get on with it because I wanted to live; I shaved my head and got a wig - not ideal especially in this hot weather, but at least I could go out and not worry.

I felt too young to die, but at the same time I wanted to die as my hair was falling out and I was going bald. So many have no hair - we are not so unusual and if we think about it, it is better than to lose other parts as others have said on here.

Don't let it kill you; deal with it in the best way you can. I had to go to sleep from 11.30am today to 1.30pm which I hate doing as I want to do other things, but I have no choice; when I need to rest, that's it.

Go with what your body needs and tells you rather than fighting it and hating it. I felt so much better after 2 hours sleep, but I just run down again and know it will happen again.

We all have to deal with it in the best way we can and by accepting that, we can save our self a great deal of pain and anxiety.

You are not alone and remembering that can help.

[Hidden]

Yes, but I'm feeling on my own, my husband died last October, my son moved away, my mother she lives in Italy , I'm going to see her next Sunday,and she's in hospital if I loose her I'm going to kill myself. Sunday it's 9 days away and seems a life times, mentally and physically I'm down I can't find help lines , the dr áre not help , I'm looking women my age and I'm so jealous , tonight it's such a bad night I don't know how I can get at tomorrow and i never sleep . Thank you x

[1000faces in reply to Hidden]

Maria68youll get throught it. The good thing about bab days and moments they don't stay. We get to start fresh the next moment or day. I wish you well with your mom. I experienced thst in 2001. Sad but yoyr strength helps her every minute of the day trust me on that you are her greatest gift. Sometimes we have to vent thst ill die if(whatever). But then we remember all the people we love and love us and you are to strong and loving to hurt them. Safe trip to your mom. Although I'm new to this blog I get that we are all family. This is not silly I've done it for others and myself it works. Please put a time in a pocket or simewhere in your purse. When you need some extra strength or faith. Grab it hold it thinks of us and we will all be there with you. Safe trip.

[Hidden]

Oh thank you xox, I will do what you suggest it , I don't know anyone with lupus, well now I know all of you haha x

[Hidden]

I totally understand where you are coming from. After my lupus had been in remission for two years and hair finally growing back, lupus has reared its head again and the first sign was my hairloss. Right at the front and very obvious. I have bleached my hair to match my scalp *not healthy I know but damage already done* and have had it layered to look a little fuller. I get annoyed at myself for being vain but when lupus attacks sometimes being vain is a distraction to all the other pain and side effects. I feel as lupus sufferers we do miss out on a great deal of everyday life but we learn to really appreciate our good days! Lupus sucks for sure, but we have a very wonderful and supportive lupus community that do not judge

[jojo-lianne]

I have to say that I've noticed mine starting to go too. It's soul destroying! A good friend of mine who suffers from trichotillomania (compulsion to pull your hair out) recommended going to see a good wig maker. She has some completely amazing ones that you would never be able to tell apart from real hair and depending on your local NHS trust they may help you towards to cost!

I hope you're doing ok.