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Melissa D.
Regular Member

Date Joined Aug 2008
Total Posts : 451
   Posted 9/8/2016 10:28 PM (GMT -6)   
I have been dealing with losing hair for many years, I just chalked it up to another issue of having lupus. But here lately it has become extreme, to the point my hair is really, really thinning and looks straggly. I use tea tree oil shampoo and conditioner trying to stimulate my scalp. If there's a product anyone knows of that might help. I wear my hair shoulder length and I'm at a crossroads where I don't know if I should cut it short in hopes it would look thicker. Or I'm even seriously willing to try a hair piece, I know there are some clip in kinds, but I have never tried any. If there's a product someone knows about or has any suggestions of things they've tried I am open to any and all suggestions.

Let me add my current hairdresser, whom I love, does not do anything other than cuts and color. So, he is of no help unfortunately.

Hope you all are doing well,

Veteran Member

Date Joined Aug 2014
Total Posts : 1526
   Posted 9/8/2016 11:49 PM (GMT -6)   
I am struggling with extreme hailoss .Coloring can help as it thickens appearance overall.
Try increasing b12 and it can help.

I don't trust much anything else .
I try to be sulphate free but can't as my hair loves soap.

Try a hairstyle which hides hair loss or a wig which can cost a lot) eventually when I have budget will need one)


Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 9/9/2016 12:18 AM (GMT -6)   
I found out that biotin and folic acid helped my hairloss.
Also placing ice packs on the scalp can stimulate the folicles.
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 9/9/2016 1:53 PM (GMT 0)   
Are you taking any of the meds Imuran, Cellcept, and/or MTX? Once I was able to come off of those, I realized they were the actual source of my thinning hair, not Lupus itself. Hair has come back to at least 95% of what it was originally after thinning to maybe 75% original.

Another thought is menopause or hormone imbalance - get some thyroid tests done if you haven't, that can be the source of thin hair - same with menopause. Both of these can be thrown off by prednisone -- we need to take some supplemental vitamins when taking it.

Vitamin B helps, I think. Don't remember this early. Joy is probably right in suggesting biotin (B7) and folic acid (B9) - with Lupus we are very often low in B.

Hope this helps a little!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
"Life is far too important to be taken seriously." - Oscar Wilde

Melissa D.
Regular Member

Date Joined Aug 2008
Total Posts : 451
   Posted 9/9/2016 10:03 AM (GMT -6)   
Thank you ladies, some great thoughts and suggestions. I actually just stopped Cellcept after many years and started Arava (Leflunomide) 6 months ago. I also started IVIG at that time. I do take synthroid for low thyroid, perhaps I need to have my levels checked again. Another thing that I hadn't thought of is I'm almost 49 and while I've had a partial hysterectomy I do still have my ovaries so I assume I will still go through menopause. I guess that could be a factor I have not thought about, I do have my yearly appointment coming up I think I'll ask my doctor to run a hormone panel to see how things look. In the meantime I'll add some biotin and folic acid and hope it helps.

New Member

Date Joined Mar 2006
Total Posts : 11
   Posted 9/26/2016 2:26 AM (GMT -6)   
I was losing quite a bit of hair which I figured was from the MTX I am taking (rheumatologist agreed). They changed me from a folic acid supplement to a thing called Rheumate which is apparently for people who have trouble processing folic acid properly (turns out I am one of those people).
Since the swap to Rheumate the hair loss has slowed WAY down.

Just a suggestion, in case you have a similar medication situation or if maybe the Arava is doing it.
DX MCTD 2006, Pericardial Effusion 2006 (still there), Polycystic Kidney Disease 2006, Fibromyalgia, Microscopic Colitis, Asthma
Currently taking Methotrexate, Plaquenil 200mg 2x a day, Bystolic, Valsartan, Flonase, Lyrica, Rheumate, Cymbalta, Singulair, Breo
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