Lupus and Relaxers

[JJamiah]

Anyone with Lupus can tell me what you do to your hair as far as relaxer? My sister has had lupus for quite a few years and keeps getting lesions and wants to but doesn't know what to do as far as relaxing her hair again. Any suggestions

 

[msa]

I'm coming up on the third anniversary of my diagnosis with Lupus, and the number 1 thing I've learned is to listen to my body. Those lesions are a CLEAR and OBVIOUS sign that she needs to stop relaxing. There are some people who do it and are fine, Happily*Me comes to mind, but everyone's body is different.

I can't even give any advice on how to relax her hair in a healthy way because clearly her body is not happy with it. She needs to leave the relaxer alone.

 

[JJamiah]

She doesn't get the lesions from the relaxer, she get's lesions about every three months, she is scared right now because she doesn't know when they will come and she wanted to know if there was a way to relax safely without the risk of lesions. thanks for your reply.

 

[msa]

She doesn't get the lesions from the relaxer, she get's lesions about every three months, she is scared right now because she doesn't know when they will come and she wanted to know if there was a way to relax safely without the risk of lesions. thanks for your reply.

Has she figured out why she gets the lesions at those intervals? For example, when I get lesions in my mouth it's generally my body's reaction to something I've been doing (eating too many tomatoes/acidic foods over a certain period of time, for example). Does she relax and then get the lesions soon after? If so then clearly the relaxer is affecting her scalp in some way and she shouldn't continue.

I really think she's gambling with her hair and scalp health, and she's not going to win. Whether she relaxes before or after the lesions appear, the combination of caustic chemicals and a clearly unhealthy scalp is not going to work. I'm not even sure why she would want to take the chance.

 

[JJamiah]

I always told her I thought it was something she ate, she doesn't believe me.

But she hasn't relaxed her hair in about 5 years, but she keep chopping it off and looks very unhappy since, she has had MBL hair all her life and then when the lupus surfaced she kept getting the lesions and spots and chopped it off, stopped relaxing (not wanting to) but didn't want to deal with the pain.

I think she should converse more with others with lupus so that she can get a better understanding. I think she is sheltering herself. But I can see she is quite unhappy with her hair.

 

[msa]

I always told her I thought it was something she ate, she doesn't believe me.

But she hasn't relaxed her hair in about 5 years, but she keep chopping it off and looks very unhappy since, she has had MBL hair all her life and then when the lupus surfaced she kept getting the lesions and spots and chopped it off, stopped relaxing (not wanting to) but didn't want to deal with the pain.

I think she should converse more with others with lupus so that she can get a better understanding. I think she is sheltering herself. But I can see she is quite unhappy with her hair.

It sounds like either her medication isn't doing enough for her or she needs to really examine her diet/exercise habits. She should also look into getting on a good vitamin regimen because the medication really can't do everything. Healthy people are lacking in a lot of essential nutrients...for those of us with lupus it's even more important to get those nutrients especially if we want a healthy immune system (that will fight off lesions and those types of symptoms).

Here's a link to *HappilyMe*'s vitamin regimen...I used it as my starting point for reasearching which vitamins are good for lupus and what I might need to take. Pass it on to her .
http://www.longhaircareforum.com/showthread.php?p=8885174

Also, I just ordered some emu oil because it's supposed to help with healing the scalp (it goes deep into the layers of the skin and helps regenerate them). That might also be something she wants to look into to get her scalp back in tip top condition. I haven't started using it but I've seen a lot of good reviews on here.

Anyway, I think gentle hair care would do a world of good for her. Leave the harsh chemicals alone, focus on getting her internal healthy, and then having a simple regimen (maybe she can protective style for a while to get her hair off her mind while she gets her health together).

ETA: She may also want to pick up THe Prescription for Nutritional Healing...it has a lot of great info about foods, vitamins, etc. that are good and bad for those with lupus (and other autoimmune disorders). And tell her to check out the Lupus Foundation of America site because they have a lot of great literature on there about managing the condition.
http://www.lupus.org/newsite/index.html

 

[finickyone]

Thanks Msa for providing the link to the vitamin regimen & I am also going to look into the literature you suggested. I am into the 2nd year of my diagnosis & I pretty much stay in denial until a flare occurs. Right now I have several raised lesions across my chest & across my back. I don't usually start freaking out until it effects my face. Silly, huh? I am highly sensitive to the sun & can get a sunburn just riding in a car on a hot, summer day. Life with lupus has been an adjustment. Mine attacks my skin, so my rheumatologist applauded my decision to no longer use chemicals on my scalp. I have a friend who also has lupus & when her lupus flares, her normally thick hair gets so thin that you can easily see her scalp. Of course she doesn't relax her hair. Watching her go through this, when I got diagnosed, I made my decision to transition several months later.

JJamiah, I think your sister should just continue to not relax. Its no telling what is triggering the flares. I wish I know what I am doing wrong to make my sudden red lesions to appear. My local dermatologist is a black woman & she is so honest with me. She said until this disease starts affecting the majority then we won't see a lot of money available for research like cancer. Until I was diagnosed, I had no idea that lupus seems to affect people of color more then any others. I was referred to the specialty clinics at the University of North Carolina so their dermatology & rheumatology residents could practice on me. Just kidding, but sometimes it does feel like that. I think lupus patients have to be very proactive about their health. I can mention something to my doctors that I read on the lupus.org site & usually they are unaware.

 

[Nayna]

I agree with the other ladies. My cousin has been dealing with lupus for 11 years
now. She's 25. She kept going back and forth with relaxers and eventually she just cut them out totally. From what I've seen of her scalp it's the best thing she couldve ever done for her hair. Is she heavily on medication? The relaxer doesn't directly cause lesions but it definitely doesn't help!

 

[Honey Bee]

I don't know anything about lupus and perms, I just wanted to send hugs and love to your sister.

Now that I think about it, though, maybe she could try one of those natural 'looseners', like yogurt, or- what was it?- buttermilk??? (Do a search, I don't know too much about that either, lol) Henna also has the same effect sometimes.

 

[peony]

I am sort of a lupus veteran. I was diagnosed with lupus 13 years ago. I have controlled my disease extremely well and am currently on no medications for it. I have a very strong family history of lupus and other autoimmune disease. I believe that the reason I have been able to maintain greater health than other family members with the disease probably has something to do with the fact that from the very beginning I learned everything I could about the disease and was very serious about taking care of myself. I also didn't have responsibility for taking care of anyone else but me for my first 7 years of having lupus which made it easier.

Hormones, allergies/food sensitivities, and lifestyle habits that increase or decrease inflammation all have a dramatic impact on the disease. For me: acupuncture, a largely plant based diet, IgG food hypersensitivity testing (which showed lots of foods I shouldn't eat), and significantly reducing consumption of sugar, have all been central to my successful management of the disease.

There are lots of things you can do to manage symptoms, in addition to taking medication, as well. But ultimately it is best to take control of the disease. It is also really important to read a lot about the disease and pay careful attention to your bloodtesting and the way you feel day to day so that you learn your triggers. ersed in the state of their health than anyone else.

And lupus both affects hair and is affected by hair care. I stopped being able to wear extension braids without a horrible allergic reaction. I used no chemicals in my hair when I was first diagnosed, and only started mild texturizing about a year ago (twice a year) which hasn't bothered me. Haircare products with Burdock will make me flare, and of course ones with Alfalfa since Alfalfa is like the worst thing in the world for people with Lupus. One thing to think about also is this: For me, burns cause flares. I mean, if I get a burn, I will have arthritis, mouth sores, etc. within 2 days. There is no way I could wear hairstyles that require flat irons or hot combs. I don't know how common this is, but it might be relevant.

 

[Muse]

I am sort of a lupus veteran. I was diagnosed with lupus 13 years ago. I have controlled my disease extremely well and am currently on no medications for it. I have a very strong family history of lupus and other autoimmune disease. I believe that the reason I have been able to maintain greater health than other family members with the disease probably has something to do with the fact that from the very beginning I learned everything I could about the disease and was very serious about taking care of myself. I also didn't have responsibility for taking care of anyone else but me for my first 7 years of having lupus which made it easier.

Hormones, allergies/food sensitivities, and lifestyle habits that increase or decrease inflammation all have a dramatic impact on the disease. For me: acupuncture, a largely plant based diet, IgG food hypersensitivity testing (which showed lots of foods I shouldn't eat), and significantly reducing consumption of sugar, have all been central to my successful management of the disease.

There are lots of things you can do to manage symptoms, in addition to taking medication, as well. But ultimately it is best to take control of the disease. It is also really important to read a lot about the disease and pay careful attention to your bloodtesting and the way you feel day to day so that you learn your triggers. ersed in the state of their health than anyone else.

And lupus both affects hair and is affected by hair care. I stopped being able to wear extension braids without a horrible allergic reaction. I used no chemicals in my hair when I was first diagnosed, and only started mild texturizing about a year ago (twice a year) which hasn't bothered me. Haircare products with Burdock will make me flare, and of course ones with Alfalfa since Alfalfa is like the worst thing in the world for people with Lupus. One thing to think about also is this: For me, burns cause flares. I mean, if I get a burn, I will have arthritis, mouth sores, etc. within 2 days. There is no way I could wear hairstyles that require flat irons or hot combs. I don't know how common this is, but it might be relevant.

Thanks for this Peony. I am desperately trying to get off meds for my autoimmune disease and what you said helps a lot! Especially about the sugar and finding out what foods work for us and which ones don't. The hair thing is hard when you are sick because it seems if the disease doesn't trash your hair the meds will. I keep trying though and I believe that we all can reach our goals despite our illness we just have to make some changes to our routines/diets,etc. and stick with them.

 

[peony]

Yeah, getting off meds is hard, especially the steroids. You ALWAYS feel back when you taper off steroids. Whenever I tapered, I had regular acupuncture treatments and made tons of time to rest as my body's own systems got back in order.

 

[janeemat]

PM Donna Sylla. I think she stated on here once that she had lupus. She is natural now but was once relaxed.

 

[JJamiah]

I don't know anything about lupus and perms, I just wanted to send hugs and love to your sister.

Now that I think about it, though, maybe she could try one of those natural 'looseners', like yogurt, or- what was it?- buttermilk??? (Do a search, I don't know too much about that either, lol) Henna also has the same effect sometimes.

Late But I still wanted to say thanks to you and all who responded, I have to do some more research, she finally is letting her hair grow back.

Her last flare up was a few months ago, so I will have to read this thread over again and give her a few websites to go to.


Thanks ladies

 

[TLC1020]

My sister has been diagnosed with Lupus for a few years now and she relax her hair, however she don't need to relax it often. When she does she use Precise No-Lye Relaxer and it works for her..

 

[ladyfay]

It's going on 7 yrs since I was diagnose with systemic Lupus. I had a relaxer for the first 3yrs with the lupus. I had sores in the scalp, my scalp bleed through my satin night cap which stuck to my head and hair almost every night. It took a long time for my sores to heal. (like over 6wks). I would get a relaxer every 3 months and clumps of hair kept falling out-I used a mild revlon relaxer that always worked for me prior to my diagnosis- but not anymore. All of sudden my hair acted as though it was overprocessed. I was on lots of meds and my body was also releasing chemicals in my hair that reacted with the relaxer.

So needless to say, I stopped relaxing, and I have been a straighten natural for 4 years now with lots of bouncy and long hair.

By the way, my doctor had me to take vitamin d and biotin 5000mg. My fingernails and toenails starting splitting all the way to the cuticle.

 

[ladyfay]

I would also like to add that many people with Lupus have allergies to Lanlolin, petroleum and some mineral oils. This could also contribute to the scalp sores and skin irritation. I never could use oil on my scalp, but I found out when I wore braids by oiling my scalp. A lot of lotions have this ingredient in it as well. So I use curel lotions and cetaphil bar soaps.