Author Topic: frontal and bitemporal hairloss in sjogren's?  (Read 143 times)

waif

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frontal and bitemporal hairloss in sjogren's?
« on: December 07, 2017, 08:54:42 AM »
hi all

not sure if this place is active.  please excuse my typing, im in the midst of a BAD flare...my arms burn badly..shouldnt even be typing
anyways, is sjogren's associated with pattern hairloss?

i don't have high androgens, my free testosterone is EXTREMELY low (total testosterone is not..does that make a difference?) and my dht is within the lower end of normal also


i have low ferritin levels but my ability to bind iron is also low, indicates some sort of disease (sjogren's???)
c3 and c4 are in the absolute bottom of the normal range but i have all the sx of sjoren's including horrible neuropathy.
esr normal, ana negative....
i've had extensive lupus tests they're all negative and i don't get rashes ever.

thanks!
« Last Edit: December 07, 2017, 09:02:31 AM by waif »

Carolina

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Re: frontal and bitemporal hairloss in sjogren's?
« Reply #1 on: December 07, 2017, 06:36:50 PM »
Yes, this site is very active.

Welcome, waif!

I haven't noticed any pattern hair loss.  I use a bio-identical topical estrogen gel and have for years and years (at least 20), I also take DHEA daily,  100 mg.  So that may be helping?

I had a horrible time with anemia (low ferretins) and now I take iron tablets twice a day, and have done so for over 10 years.  I have a near perfect diet vis a vis iron, but I guess I just don't store it normally.

I have profound Peripheral Neuropathy and walk with braces and a walker.  I also have small fiber neuropathy.

For years I was tested for AUTOIMMUNE conditions, since I presented with all the symptoms.  I do not have autoantibodies, however.

Finally I was diagnosed with a Primary Immune DEFICIENCY, for which I am treated with IVIG every four weeks.

My Immune System attacks my organs and systems with some substance other than autoantibodies, maybe cytokines?  Medical Science hasn't developed to the point where this can be defined however.

My husband is a research Immunologist and my medical immunologist does her research at Duke Medical Center.  So I have good support, as far as can be expected.

Hang in there, waif.  You are in the right place with us.

Hugs,  Elaine
Female-75-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-IBS-Knee/Shoulder Degeneration-Intertrigo,Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-IVIG-Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-Copper-Amitriptyline-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-FishOil

SjoDry

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Re: frontal and bitemporal hairloss in sjogren's?
« Reply #2 on: December 08, 2017, 07:31:15 AM »
Waif,

I do have hair loss, but not necessarily pattern hair loss. I lose a large clump of hair each time I shower. The problem is that I have no clue what to attribute it to. Is it my meds? Is is a Lupus type symptom? Is it natural aging? Is is related to my medical conditions at all? Hmmm...not sure I will ever have the answer.

Take Care.
SjoDry
Sjodry
http://sjodry.wordpress.com/

Female 55 y/o; SJS Primary; CVID; Autonomic Neuropathy: Chronic Digestive/G.I. issues; Leukopenia;Tachycardia; Bronchiectasis; High Blood Pres; R.A.;Chronic Pain; Sub~Q IVIG infusions~Hizentra; Plaquenil; Restasis; Gapapentin; Breathing/nebulizer meds; Pain meds;

araminta

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Re: frontal and bitemporal hairloss in sjogren's?
« Reply #3 on: December 08, 2017, 08:42:43 AM »
For what it's worth - as I haven't managed up to now to get a Sjogrens diagnosis - I have this same problem, and I'm sure it only started when all the other symptoms started.   But I don't know if there's a direct link.
Dry eyes (MGD),dry nose, dry mouth, labyrinthitis, rashes, dry skin, mouth ulcers, constant but fluctuating fatigue.  Blood tests and Schirmers negative and no Sjogrens dx yet.   Flax oil, multivitamins,  saline nasal spray, Hylo forte, Lacrilube, organic castor oil for eyes.

Liz D.

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Re: frontal and bitemporal hairloss in sjogren's?
« Reply #4 on: December 09, 2017, 04:43:52 AM »
I also have female pattern baldness with major hair thinning.  I generally have thin hair, but my belief is that the Sjogrens, the meds and my anemia added to it.  I finally broke down this summer and started wearing a wig.  Best thing I ever did! My confidence level is up and everyone says I look 15 years younger.

Liz D.
54 year old female
Sjogrens Syndrome (diagnosed 2004, but problems started in 2000), Hypothryoidism, Asthma, Osteoporosis
Meds:  Plaquenil 400 mg; Synthroid 100mcg; Evoxac, Flovent, Flonase, Protonix 40 mg.,  Prozac 40 mg. Naproxen 500 mg., Vitamins, calcium, flaxseed oil

Carolina

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Re: frontal and bitemporal hairloss in sjogren's?
« Reply #5 on: December 09, 2017, 07:02:53 AM »
Brave for you Liz.

We do what we are able to do, to improve our self confidence.  Part of that is related to how others react to us.

We read not just words, but body language and micro expressions (too fast to process consciously, but clear none the less), from others around us.  These responses affect how we see ourselves in the eyes of others.

So wear your wig with pride, girl!   

I have my own hair cut and and colored (platinum now) every 6 weeks.  And my nails (gel) done every 3-4 weeks.  When I look in the mirror, or look at my hands (which are truly 75 years old) my hair and my nails give me pleasure.   We have the right to these pleasures where we can find them, AND afford them.

"You don't look sick" are words that inspire me.  I'm glad I don't look as sick as I feel most days, and truly am by diagnosis.

I used to think "live fast, die young, and have a beautiful corpse' was a foolish saying.  And it is.  I have spent some time 'living fast' (not sex drugs and alcohol, but first college degree at age 19), and at 75 I'm not going to 'die young', but I hope to die looking like I 'don't look sick'.  But at that point (dying) I probably won't care.

Until then, I will care for my appearance because that gives me pleasure.

Since I'm always hot, I'm not sure I could manage a wig....but if I felt happier wearing one, I would go for it. 

I have worn clip-on hair pieces from Paula Young, by the way.

You can get sample hair colors free, and you can return the products if they don't suit you.

Hugs,  Elaine
Female-75-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-IBS-Knee/Shoulder Degeneration-Intertrigo,Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-IVIG-Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-Copper-Amitriptyline-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-FishOil