14 years with lupus.lots of hair gone after son was born. now just keeps getting worse. will it get worse from there?:(
I too started losing my hair in clumps nearly a year ago. It still looks like it's there, but my hairdresser definitely noticed. I was told to keep my hair short as it's less noticable, however someone on here told me that Horse Mane and Tail shampoo and conditioner work well. I found some at PetSmart, but I bet Wal-mart has it. Also, I was told to shampoo only ever 3 days rather than every day as I did.
Just a suggestion, but good luck.
DeAnne
As you get older your hair thins. So, I have both--from the lupus and from the drugs. I should try the horse's mane shampoo though. Mostly thinning on top, not bald yet but thinner. I just hope it all falls out so I can get one of the new wigs that you can't tell.
My hair is definitely thinning out, but thankfully was very thick before. Now it’s sort of just like a normal head of hair, but I don’t know how long it will stay that way. I’m only 6 months out from diagnosis with a very active year, though I had intermittent symptoms for many years prior. Too early to tell how it will affect me. I just started CellCept too, which means I may go back off of Plaquenil (which is known to make hair fall out or break easily; I don’t think I had much lupus hair-loss before taking Plaquenil…) Like everything with lupus, guess I’ll have to wait and see! Plus collect stories from LWLers 
Why wait to get the wig? I finally got a wig cap (more comfortable) and it has really helped me feel more like myself. I got a referral from a cancer patient and a Rx from my rhuemy (which at least made it deductible). I love it!!
USAGURL said:
As you get older your hair thins. So, I have both--from the lupus and from the drugs. I should try the horse's mane shampoo though. Mostly thinning on top, not bald yet but thinner. I just hope it all falls out so I can get one of the new wigs that you can't tell.
Plz tell me more about this wig cap....what is the diff btwn this and a traditional wig....I am so out of the loop ;( My hair is horrible. I had what I would call normal hair before....not thick, not thin. Well, I should say overall it wasn't thin. I had a lot of hair, but each strand of hair was not thick. Anyway, it has been falling our terribly for the last year and I am devastated, and have tried some wigs but gave them to my grandkids to play with...lol I have been on Cellcept for about a yr now, but I take many other meds and I do not know if any of them may cause hair loss..... I know that Methotrexate is supposed to cause hair loss but my Rheumy says he doesn't get reports fr others about hair loss....I keep thinking about getting it cut short...again, but I don't like the thought of it being so thin and then really short. I'm so afraid that you will be able to see my scalp! I keep it up in a pony tail most of the time...at least it makes me feel like I have some hair ;) Thank you for bringing this up.
had a great deal of it fall everyday for about 6 months now. Had slowed down. Only got diagnosis a month ago. Started plaquenil and falling again. So it is the medicine? Wasn’t told that it would do that.
I wish it had to do with age I’m 26 , I was diagnosed at 12. My wedding is coming up and I use cellcept for a rash that was full body , so it’s a rash or hair I guess lol. A wig is an option if it continues to get worse. I just don’t like people knowing I’m sick and lately between rash and hair they are noticing. I have had every symptom most can think of, I don’t know why I let silly things like hair and skin bug me when my kidneys are on the rocks. Just be nice to look and feel good for the wedding I guess.
Thanks every one.
Hello faithforlupus,
I know where your coming from even though like you say your kidneys are on the rocks and 26 is no age where all these issues are happening...my hair was really long and thick...growed it back several times pointless with chunks coming out when it gets a certain length ....so now i have the skin head and it's a good job it suites me.
Lupus can make we all no matter what age make we feel like we're losing our dignity but although you have people there to love you, that's more important.
These two links below may help you and other members on the subject where wigs are concerned and they're for lupus suffers, the first one is about helping cover bald patches with thinning hair and the 2nd a full transformation with a wig and looking good.
Love Terri :) xxx
I saw a dermatologist for my hair loss I was experiencing from the disease and medications. He recommended using men's rogaine foam. When I use it faithfully (2 times a day everyday) it helps a ton. My hairdresser tells me the areas that are thinning and I work on putting the rogaine in those spots. It REALLy helps! I notice new baby hairs everyday. It is definitely worth a try!
i wear my hair very short,pixie style or spiked, I have been trying some new products,the bosley shampoo and cond..and this new stuff called-powder play,by BIGSEXYHAIR,wow that stuff alone makes me feel and look like i have more hair...good luck...celeste
Well i lose white flakes off my head sometimes and that looks bad alone and tried different products and found Elvive suites my head and i would'nt alter now.
Celeste my hair goes into the spike look if it's not skinned but i have noticed keeping my hair short, there's hardly any come out.
Terri :)
My hair is about 1/3rd as thick as it use to be and still falling out a little. I recently learned that Lupus patients hair growth cycles get all buttered up because of the medications. Usually hair grows and rest in cycles that are in tune with the seasons in your environment So your hair beefs up in winter and thins down for summer but the meds for the disease confuses the hair cycle and viola your head thinks its constant summer. Of course the drugs themselves have side effects of hair loss so that makes it all worse. I think the best you can do is support the hair you have with healthy eating a good multivitamin ( If you can) and whatever topical works for you. I found a shampoo and conditioner call Nioxin that has been working well to slow my hair loss down and it smells like peppermint so bonus.
Hi Julie,
Before i touched any meds for Lupus my hair was coming out previous...i lost hair i could nearly sit on to a shaven look and when it was cut i had bald patches besides.
Lupus does cause our hair to come out although meds don't help but with what your doing it sounds like it's helping you so "Nice one" :) xxx
Hey Terri I bet you rock the short look :)
Tez_20 said:
Hi Julie,
Before i touched any meds for Lupus my hair was coming out previous...i lost hair i could nearly sit on to a shaven look and when it was cut i had bald patches besides.
Lupus does cause our hair to come out although meds don't help but with what your doing it sounds like it's helping you so "Nice one" :) xxx
Julie said:
My hair is about 1/3rd as thick as it use to be and still falling out a little. I recently learned that Lupus patients hair growth cycles get all buttered up because of the medications. Usually hair grows and rest in cycles that are in tune with the seasons in your environment So your hair beefs up in winter and thins down for summer but the meds for the disease confuses the hair cycle and viola your head thinks its constant summer. Of course the drugs themselves have side effects of hair loss so that makes it all worse. I think the best you can do is support the hair you have with healthy eating a good multivitamin ( If you can) and whatever topical works for you. I found a shampoo and conditioner call Nioxin that has been working well to slow my hair loss down and it smells like peppermint so bonus.
Julie i've had many members ask me what it looks like..well at the moment it's growed abit mate but needs cutting but this is how it always is now besides 7 scares showing off my epilepsy. lol
I'm lucky it suites me besides being the same thinness :) xxx
Julie said:
Hey Terri I bet you rock the short look :)
Tez_20 said:Hi Julie,
Before i touched any meds for Lupus my hair was coming out previous...i lost hair i could nearly sit on to a shaven look and when it was cut i had bald patches besides.
Lupus does cause our hair to come out although meds don't help but with what your doing it sounds like it's helping you so "Nice one" :) xxx
Beautiful! You look beautiful. Thanks sometimes just need reassurance I’m not alone to move on and do something about it!
Terri, is that you? I am telling you that you look simply awesome and so gorgeous like this . Not many of us could wear this and get away w/it! It looks like a pic of a model …high class…in a magazine Terri! You are so lucky you just have such pretty features in your face that you can sport this look naturally. Ya know all my ife I was this and had my hair every which way, light, highlighted, dark, short, medium,and long. I typically looked okay with a medium length(layered)and my natural color…auburn. Now, I would give anything to have my hair back. You’re right about these meds too. Along w/all the other side-effects hair loss began to become somewhat of an issue, now that I look back, when I first hurt my neck at work in 92…ugh! Now? Omg, I honestly do not even know what to do w/it. I have ade appts w/the hairdresser, and explained to them what was going on before I came in. They just never seemed to get it right…except for ONE time. Now, I’m too scared and embarrassed to go in. Grrrrr. Yes, I’m whining and complaining…no fair and now to add insult to injury, I have these stupid scabs all over my scalp. I have tried several methods to attempt to alleviate them, but to no avail. Oh well, just something else to “learn to live with.” Good luck to all of you that are struggling w/this issue as well.
I am so sorry faithforlupus. I really meant to address you as well…brain fog. You also look so pretty w/your hair the way it is as well ! Your face is shaped so cute and honestly from the pic you have it does not look thin and your haircolor and cut is so pretty too.