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.
I have had my hair fall out in clumps, I have tried so many high end products with no avail. I have always had long healthy hair but now it had breakage and thinning. I just recently cut it all off, similar to a pixie style. I taking Plaquinil, but I not quite conviced its the drug, becase I had this problem befor take plaqinil for a year now.
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.
Thanks mate, i don't feel it with the process of creams etc i go through with the sjogren's that's high maintenance on it's own but people who know me say how it suites me it's abit spiky looking now through being ill :) xxx
Julie said:
Terri
How beautiful you are! I knew you would rock the short look :)
Hi I am new here but noticed your question. I was diagnosed with sle about 3 yrs ago. My first symptom was hair loss and I have been thru two bouts of it. What has helped me is a dermatoligist, who gives me cortisone injections as needed and some topical meds for my scalp. Also my Dr. recommended biotin, and a multi vitamin with selenium in it. I am also trying a product called hair essentials. It's a herbal pill. I was on Imuran which was making my hair fall out again, I am currently on Cellcept and haven't had any problems. Someone had also told me to avoid shampoos with sulfate in them. Hope it helps!
"Thank you" so much for the imput and info as it helps members in such a great way plus i'm pleased what your Dermo is doing is helping you also...nothing worse than our hair keep coming out. :)
Love Terri xxx
everhope said:
Hi I am new here but noticed your question. I was diagnosed with sle about 3 yrs ago. My first symptom was hair loss and I have been thru two bouts of it. What has helped me is a dermatoligist, who gives me cortisone injections as needed and some topical meds for my scalp. Also my Dr. recommended biotin, and a multi vitamin with selenium in it. I am also trying a product called hair essentials. It's a herbal pill. I was on Imuran which was making my hair fall out again, I am currently on Cellcept and haven't had any problems. Someone had also told me to avoid shampoos with sulfate in them. Hope it helps!
That was on Dr Oz a while back the shots in the scalp where the hair is thinning the girl on the show said it really works. I might give it a try thanks for reminding me
Tez, you are one of those ppl that could rock any look girl! You just have that kind of face. Your eyes are so pretty...they sparkle ;) Just wanted to let you know that. My shoulder and wrists are bad right now...so must quit typing. A friend of mine got me the Dragon, speech recognition software, but it takes time to set everything up and put and build your dialog into the system....Ahhhh.....always something, but I can't wait til it's ready....
I was put on cellcept a while ago and I had this problem. For me, the symptoms stopped a month or so after taking the med. once the body gets used to it, it should stop
Hey there, I'm new here. I was diagnosed with DLE last summer and my hair has just fallen out over the past few months. I'm like you, I have a TON of hair so its not obvious...yet. My derm just put me on plaquenil in hopes that is will stop any future occurrences. I also take 5000mcg of biotin daily and a prenatal. I may try the Nioxin shampoo if I can find it. Eating plenty of "healthy" fats (walnuts, almonds, avocado, and olive oil) will also help.
I hope u don't think I'm trying to hi-jack ur post, but I wanted to let u know that I got thru the first video and I loved it! It left me feeling like I might want to try to do something different with my hair and not be so intimidated. I love the scarf, but don't know if I would look right.....but nonetheless, Iwanted to say thanks for sharing this.
Tez_20 said:
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.
so glad that you decided to join our little "island of broken toys". You will find someone here to talk to for any reason, no matter the matter. This year hats are in, so in addition to a good wip if it is that bad, but a cute hat can make you feel good and is stylish. I have a couple that are adorable. You can email me directly if you wish or any other person on our group. I looked at several sites and this is my 2nd family...hope you feel welcome.
DeAnne
everhope said:
Hi I am new here but noticed your question. I was diagnosed with sle about 3 yrs ago. My first symptom was hair loss and I have been thru two bouts of it. What has helped me is a dermatoligist, who gives me cortisone injections as needed and some topical meds for my scalp. Also my Dr. recommended biotin, and a multi vitamin with selenium in it. I am also trying a product called hair essentials. It's a herbal pill. I was on Imuran which was making my hair fall out again, I am currently on Cellcept and haven't had any problems. Someone had also told me to avoid shampoos with sulfate in them. Hope it helps!
I have also just started to use men's Rogaine foam. Can you use it on dry hair? I only wash my hair about 2x per week. Also - how long did it take before you noticed that your hair was shedding less?
kenzz06 said:
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!
Stay focused on your blessings, don't beat yourself up. Your young, live and love don't let this disorder, pull you down, it has a tendency to do that.
faithforlupus said:
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.
Such a lovely comment to make and it helps cheer members up and while we're at it...ido hope your keepinging fine yourself besides. :) xxx
Unshoreandscared said:
Stay focused on your blessings, don't beat yourself up. Your young, live and love don't let this disorder, pull you down, it has a tendency to do that.
faithforlupus said:
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.
Thank you everyone. I feel kind of vien now with all of this support. How can something be so bad if so many great people are a part of it. I can buy hair for my wedding right! At least I am here to have one
Your welcome mate because if things help...it also gives we a boost but please keep we updated when you can as it would be nice to know how your going also :) xxx
