Hair Loss and what helps it--and a question

[Kaila575]

Thanks my hair is kind of improving I recently comtemplated buying a wig off of ebay...but I think I'll wait a while...I will do whatever it takes to keep on Living...It's not always easy but we need to fight with all we've got...and we are in this together....so let's encourage one another...my friends...I wish their was a like just like on fb it would be pretty cool, huh?

[Daisy1234]

There are many treatments for hair loss, but I would suggest that the first thing is to get a diagnosis as to what is causing the problem.  Its best not to just assume that its Sjs related.  For instance, I have severe Sjs, with many extra-glandular complications as well as MALT lymphoma from Sjs and don't have any hair loss at all.

It is also possible that you could have a hormonal imbalance at the root of this problem.  Too much testosterone in our systems will cause male pattern balding.  A blood test for testosterone could help determine if your hormones were at play here. 

There is also another type of hair loss called Autoimmune alopecia issue (specifically the name of this condition is Autoimmune Areata).  A dermatologist who is experienced in the treament of hair loss would give you scalp injections of cortizone which typically improve hair loss due to this condition and there is very good success with this. 

Also could be related to the types of prescriptions you are taking.  I would suggest talking to your pharmacist about the meds that you are taking to see if any could cause hair loss and if so, perhaps have them suggest alternative prescription drugs for you and get your drs to change your prescriptions accordingly.

Hope some of this helps,
Daisy

[mshistory]

I agree, Daisy, that we shouldn't just assume our hair loss is from SS. Mine may be exacerbated by it, but I also have androgenic alopecia. I just wanted to point out that women don't need high levels of testosterone for female pattern hair loss. In fact, my testosterone levels are on the lower side of normal. What causes the hair loss, miniaturization and eventual non-production of hair in certain follicles is a genetic predisposition for sensitivity to those androgens.

[waterbby100]

I had long hair and had to have it all cut off to about 1 1/2 inches due to massive hair loss. I thought it might have been plaquinel but it ended up being my thyroid. I have had low thyroid for 25 years and been fine with levothyroxine all of a sudden the hair loss. The doctor put me on T3 Cytomel and my hair loss stopped. My hair is thicker now than it has been in a long time and I am starting to let it grow out again.

I don't think there is much that is more distressing for a woman than loosing your hair in massive amounts daily! I hope you find the reason for your loss and get massive hair back!

Hugs,
Kimber

[Kerrikins]

Definitely see a doctor and a dermatologist before assuming it's sjs! It could save you a lot of grief. I can only guess mine is AI related as every other possible cause has been ruled out. When my first child was a baby I developed annular rashes on my arms and went and lost more than 1/2 my hair within just a few month. I have ups and downs now but it's definitely never been the same since the first episode. That was over 10 years ago now so I'm sure the cause would have been found if it were something else.

[Bella]

Hi Jackie,

I am like you -- had TONS of hair all my life.  But I've lost half or more in the last couple of years, and look kind of "normal" now.  If I lose any more though, I'm really going to start looking scraggly.

I saw in your signature that your bloodwork was normal, but another major cause of hair loss is thyroid issues.  Two GP's, a neurologist, and rheumatologist said my thyroid was "normal".  Thanks to the folks on this website, I was directed to learn more about how to interpret thyroid results, and I suspected my thyroid was coming into play despite what the docs were saying.  So I did the appropriate testing to prove it.  The endocrinologist confirmed it, and all my docs now agree they missed it.

Anyway -- I am very early on in my treatment course, and it's too soon to tell how far I'll go with this, but -- for the first time this past week, I am not getting fistfuls of hair in the shower or in the brush or comb!  Also -- I had severely dry eyes (STT =0) and sinuses -- my eyes are still dry but have improved quite a bit (I literally noticed the improvement with second dose -- I thought I was crying, but no, it was just moistness with blinking, very strange!).  Most consistently though are my sinuses -- they were VERY dry, and for the past couple of weeks it's felt so much better, and my nose is running again, very strange to be blowing it!   The "tightness" in my face, and the neuro symptoms are decreasing as well.

Anyway -- I just wanted to mention it because I am so grateful to this site for the info I learned.  I could go on and on about it (as the people here probably realize), but if you are interested in more info, please feel free to PM me about it.

Whatever you decide to do, good luck with your hair loss.  It's a mild symptom compared to everything else that can go wrong, but I guess I still have room for a little vanity, and was missing all that hair I had!

Oops, just noticed waterbby's post, so I guess I'm seconding the thyroid thing.

[kellyptyler]

Biotin and Alpha Lipoic Acid have really help my hair loss.

[4Kids]

Thank you everyone for the input.

I have PCOS and apparently hair loss can be attributed to that. I see the dr for that Tuesday. THANK GOD. He didn't want to treat the PCOS until my Sjogren's thing "played out"  as the PCOS appt was Thursday and I got sick the following Sunday.  My follow-up was May or something and he woulnd't treat it.

Half a head later he better give me something! I noticed too that my B-complex has 45mg of B7. so am taking that. Is that enough?Should I see my rheumy sooner than october? I am leaning to yes.

[williak]

Plaquenil stopped my hair from falling out.  Can't hurt to try it!


Kim

[Daisy1234]

Hi 4Kids:

So sorry to hear about the PCOS and yes that can certainly cause Male-pattern baldness as you mention due to an imbalance of hormones, in particular testosterone.  Your rheumy wouldn't likely be the physician that treats that condition though as you may be aware but if your SJs is acting up, a visit to the Rheumy may be in order. 

For the PCOS however, I would suggest that you may be better off seeing a good Gyno to help in that regard.  This issue is usually outside of a PCP's area of expertise unless they have some specific experience with it.  Treatment of PCOS (Polycystic Ovary Syndrome) may include several options like various hormone supplements or even birth control pills, Anti-androgen (testosterone) medications amongst other treatments and that can often help to reduce hair loss on your head amongst the other symptoms of this condition.

Best of luck,
Daisy

[Nat]

4kids, I have been making some posts on the connection to Sjogrens and lack of B12, which is only found in dietary animal proteins. You can check out my posts for more info if you like. There is also a connection to lack of B12 and hair loss.  B12 is necessary for the formation of  red blood cells. Without it, red blood cells become oversized and poorly shaped, and began to function ineffectively. Hair needs a constant supply of blood and oxygen. A deficiency in B12 can lead to slow hair growth, shedding and overall hair loss.

PCOS could also be a factor of course. PCOS is associated with insulin resistance. Sjogren's, PCOS and insulin resistance are all associated with  elevated levels of tumor necrosis factor or TNF. TNF is just a normal part of your immune system, but it is  elevated in PCOS. Here is a study that states it is" significantly higher" in patients with PCOS.http://www.ncbi.nlm.nih.gov/pubmed/10206434

 

[stephL]

If you have PCOS, a low dose of estrogen like a birth control pill, Metformin (Glucophage), and an antiandrogen medication called Spironolactone would be a typical treatment. An obgyn may be able to help, but PCOS falls into the specialty of endocrinology. It's worth treating aggressively, not only for the hair loss but it's a disease that can lead to other illnesses and complications.

[4Kids]

I should have specified I am seeing my GYN tomorrow. I will be requesting aggressive treatment yes.

And as I recall, one weird thing on June's bloodwork was or could be trouble with B-Vitamins. Low or high. I will go check.

[bigb00]

when i got sick with sjs i lost so much hair i had to buy clip in extensions and wigs. Then i was put on plaquenil and after about 2 years my hair is back to normal