How's your hair with SS?

[Pinkfish]

My hair has been so dry over the last years and I've been shedding a lot. I can probably go 3 days without washing my hair without it getting greasy. Is this because of SS too, or is it just me?

[Gingersnap]

Sjogrens can do that, and lupus can have that effect too. Changes in my hair were unfortunately the first symptom I ever had, and I've been dealing with it for 15 years now. I lost over half my hair in a really short period of time, 4-6 months, and the texture became really dry and brittle. It grows out of my head so-so but breaks off easily plus I have these shed-grow cycles with flares so between all of that I have hair of all different legnths so it gets thinner as it gets toward the ends. I discovered extensions a couple of years ago and they are my best friend, I don't leave the house without them. They are cut into my hair to be the same length and also are the same color so they give volume and since they blend so well with my hair they really help with the appearance of the condition of my hair because of course, the extension hair is in better condition than my own hair. But recently I started taking a really good omega 3 supplement and I'm hoping to see improvement in the dry appearance of my hair after a few months. Honestly though I'm not holding my breath because nothing I've tried over the past 15 years has helped and I've tried a lot.

[1722Mich]

Have you had your thyroid checked & do you know your numbers if you did?  My hair has always been dryish but the Sjogrens really gave it an excuse to be drier & brittle.  Add low thyroid & it was a disaster! Had my internist & my rheumy both check my thyroid. Both insisted I was normal. I was at 3.55 & they said since I was under 5 it was fine.  I am a nurse & thought they were wrong.  In addition to dry awful hair I was freezing all the time, exhaustedore than was safe during my long commutes to/from work, I couldn't remember details & was itchy as heck! I had a bunch of other stuff too.  Anyway I scheduled myself with an endocrinologist. As I always do I wrote her a letter detailing my complaints & faxed it to her a couple days prior to my appointment. Docs are busy & many won't sit & listen but they will sometimes read a letter if you keep it concise. I was lucky in this lovely woman did both!  She started me on levothyroxin plus she checked my vit D level. I had been supplementing on my own because again my docs brushed that off when I asked to have it checked. She upped my vit D dose & that helped as well. At my 1st thyroid recheck my level was better & I felt a lot better. She was going to leave the med at that dose but I thought I could still improve & asked for a higher dose. She bumped me up again & I feel markedly better.  Over time my hair has thickened back up. It is still dry & brittle but more like it used to be when I was younger & "healthy"

[Cindy]

theres a natural recipe of applying mayo to the hair, cover with a platic bag or shower cap and leave it for 1 hour, then wash normally. Google it, it has excellent reviews. I have done it in the past because I also suffer from dry hair

[stillinshockwithsjogrens]

My hair is dry and brittle.  It breaks easily.  I've lost about 1/3 of my hair since menopause.  No thyroid problems.  I've used Rogaine for a year, with minimal results, but I'm afraid to stop because I don't want to lose even one hair extra if I cease to use it!

[machenza]

My last thyroid results are with low TSH. I think my progressively dry and drier hair is the Sjo. Lost my signature curls....

Nellie

[litliwlowa]

My hair started getting dry and falling out when I developed Hashi's. So it's been a few years for me that way. I can't connect it to Sjogrens specifically.

As for the dry hair part, I'm getting decent results using Aveeno shampoo and conditioner products plus after that spraying in Ion leave-in conditioner.

But when I have an increase in hair loss, typically my thyroid hormone levels have gone out of wack again. It could be that my Sjogrens is contributing to thyroid hormones messing up. I am status post total thyroidectomy, so am completely reliant on replacement hormones. My levels are checked every three months, and dose adjusted accordingly

[finallyadx]

My hair is super dry and it waxes and wanes in respect to falling out - sometimes I have a wall of hair in the shower by the time I am done, other times the hair loss is minimal.  I have had my thyroid checked and told it was normal as well.

I say, and this is just a personal opinion, any AI can cause hair loss and brittleness but I would agree to have your thyroid checked as well, just to be safe.

I also use keratin, ginger and coconut shampoos and conditioners - the keratin really seems to help.

Keep us posted.

Take care.

[Gingersnap]

Yes, I've had my thyroid checked as well, I've had other thyroid problems involving a nodule and had half removed but still my thyroid function has always been fine. This started for me when I was 20 so naturally I didn't take it well and spent years going to various doctors hoping for someone to find a magical cure. I've had many a work-up by specialists trying to find the root of the issue. For me it's autoimmune. I got annular rashes all over my arms at the same time I had the drastic hair loss and texture change and the rashes went away but the hair never recovered. Unfortunately I didn't see a dr for the rashes so I wasn't diagnosed with AI until many years later. This all started for me during the post partum period after my first child birth. I've never been the same health-wise since then

[Thea]

I have noticed in the last six months (as my SS and infl. arthritis has gone into full force)  that my scalp is dry and itchy, and my hair feels--well, different. Soft but dry. I have very thick hair, and have not yet noticed more than usual falling out. But the itchy scalp is driving me nuts!

I was just about to go on the hunt for something to help with that.

[Sleepy In Seattle]

I've had the same kinds of problems - dry, brittle, thinning - since the Lupus/Sjs/etc came on. Got really bad when i went on Mtx, although the Mtx helped tremendously with everything else!

Recently had to switch Rheumies (old one went into research and isn't seeing patients anymore) and the new Rheum upped my folic acid intake considerably - that has helped a TON with the thinning, although the texture is still weird.

I really like Moroccanoil products....they are expensive but a tiny bit goes a LONG way.

[sassygal]

About a year before my SS dx. my hair started getting dry and brittle with breakage near the scalp.
Three years later is is worse than ever and now I am a frizz head and for some reason my hair is getting really wavy!? I have been through menopause too as well as have hypothyroidism.

Exactly which is the worst of the culprints I can only guess. I will say I have been havining more hypothyroid symptoms and am due for my doctor visit next week. I take prescription Vit-D every week

Months ago I started taking Thera Tears nutrition hoping to improve eye dryness and in turn hoping it might help my hair and dry skin as well. I've not noticed any difference in dry skin, but my hair now gets oily at the scalp, which requires me to wash my hair frequently. My eyes have felt about 50% better since the omega-3's (Thera Tears).

I have a bathroom full of all kinds of hair products to cure any hair problem, but have only noticed minimal results with any of them. Sometimes I even sleep with a heavy conditioner on my hair all night which does make my hair look a bit better till the next time I wash it!

Oh what to do, what to do....!

sassygal

[SjoDry]

I'm in...joining the Hair Today & Gone Tomorrow Club that is.. 

I have noticed that I am losing my hair more & it feels dry & more brittle to me. I take Biotin (2 capsules) a day & that has really been helping both my hair & nails.

Now as for the non-conformist grey hairs...they are doing their own crazy, wiry thing. Not too long ago, a lady on the radio station we listen to on the way to work, was giving out beauty tips.
She said that she had learned a trick that has helped her hair. Now what the original purpose of this "trick" was, I have no idea, but I now do it.

I actually put the creme rinse on first. After it is all rinsed out, I then use the shampoo. It really seems to make my hair feel better or lay down better for some crazy reason. Maybe our Cosmetologist (Andrea) can explain why this seems to help. Or heck..maybe I just think it helps because of my wishful thinking. It reminds me of the same effect I had when I used Wen Conditioner. I loved that product, but it is not in my budget.

My hands are hurting so badly now when I try to dry my hair each morning, that I will be getting a body wave today. At this point, I don't care what it looks like when it's done as long as I don't have to spend a long time styling it. Interestingly, my hairdresser keeps telling my what great shape my hair is in...hmmm.

I will keep monitoring these posts for any miracles that are mentioned.

SjoDry and Brittle

[keecats]

My hair has also become drier and I only wash it every other day. I used to be crazy-greasy after one day.

Extreme hair loss over a short period of time, accompanied by scales and itchiness, was what finally brought me to the doctor (Sjogrens was discovered because I complained of dryness and the internist ran every test under the sun), but my rheumy insists it is unrelated to AI. I'm 39 (this started 2 1/2 years ago), so technically I'm too young for age-related thinning.

I have experienced loss over my entire body, including legs, eyelashes, eyebrows, underarms, etc. The loss itself comes and goes but what is lost does not grow back. I missed an appointment with a derm who was going to do a biopsy and I know I need to follow up with that.

My thyroid has always been normal (between 0.9 and 1.7) even though I experience every endo-related symptom in the book.

I tired Rogaine for a few months but only noticed more thinning. I started taking Biotin about a year ago, and while I'm not sure it has helped, I'm afraid to stop using it just in case. I started using Nioxin a few months ago and have not had a crazy head-thinning incident since. Can't say they're related, but it is the best shampoo & conditioner I have tried to make my hair look shiny and fuller.

It's funny what I now accept as decent-looking hair. Previously I wouldn't have been caught dead outside with hair so flat, but now now it's the best I can do.

I also use Latisse but that has only slowed the eyelash loss; I have about 25% of the lashes I used to have. I wish it were available for head hair!

[Nymph]

My hair has fallen out twice in two major sheds since the start of my SS symptoms, once in late 2011 and once last spring. I had a good amount of hair to begin with and it had plenty of texture, but still the loss was noticeable. There is now a place at the back of my head where you can clearly see my scalp if my hair falls the way it wants to there.      I am worried it might start again since I just had a big flare and that's when it has happened in the past. There is less hair now to fall out. I don't know how I'm going to style it if I lose any more. Also, my hair used to have nice waves and curls but now it is so limp and hradly curls at all. I think think I really need to make an appointment with this great ($$$) stylist I know this summer and find a better cut for what it's doing now. I wonder if the Plaquenil has affected the way it grows. I dread ever starting methotrexate for that reason. Good to know that plenty of folate can help in that regard. Sometimes I take Biotin. I can't tell if it helps my hair but it sure makes my nails grow! I also use a clarifying shampoo to remove hard water buildup once a week and try to deep-condition regularly. Sometimes I use an apple cider vinegar rinse with a drop of tea tree oil to get the gunky buildup off my scalp. I am waiting for the summer humidity to see if it gets back to its old perky self.