hair loss, flares & iron deficiency - will it ever stop?

[Beau2016]

Hi I’ve had lupus for 15 yrs and diagnosed for 8.

I’ve had flares lasting months (or years before Drs took me seriously) were loads of my hair has fallen out, started to grow back and then fallen out again.

Last summer I started on prednisolone & mycophenolate which I’m tolerating well and generally feeling much better than in years.

In September I experienced quite a stressful event and after that my hair has been falling out massively, hair everywhere, it’s now very thin which I’m managing with headbands and winter has been great for wearing hats!

In December I started seeing new consultant who is great and found that I was very low on ferritin - gone from 97 to 8 over 12 months.

I’m taking iron tablets and some hair has started regrowing, some is still falling out.

just wondering does it ever stop?

[Maycontainnuts]

hello lovely, as someone who has been greatly bothered by hair loss I thought I’d let you know what i learned by seeing a trichologist privately. Vit D & B12, CPR, ESR and serum ferritin, even if at sufficient levels for general health, may not be at sufficient levels for hair health and can result in disruption to hair growth/shedding cycle. certain medical conditions affect the levels of these blood markers, often causing lower vit D and B12 and elevated CPR and ESR. Matters are further complicated in that for example a raised CPR reduces the serum ferritin reading by 50%. Also hair needs protein, so we need to make sure we are consuming the recommended daily amount. I am vegetarian, I just find it easier to supplement with protein shakes. Obviously stress as you have experienced is a factor and the blood markers fluctuate because of lupus so important to monitor. in my case I have both female pattern baldness and telogen effluvium, the latter being disruption to the growth/shedding cycle and that disruption becomes chronic when we have a long-standing underlying systemic medical condition. perhaps ask your GP to test the levels and take it from there. Hope the info helps. The trichologist was expensive, I had to make sacrifices to afford it but it was well-worth it - now I understand what’s happening I feel as though I can do something to help the situation instead of having no control. I never had good hair to start with so always had hair envy but to lose even that has been very upsetting. Take heart, if you’re noticing regrowth then it may be that your hair loss is down to telogen effluvium and if you can sustain the blood levels at required levels you may be able to get the growth/shedding cycle back on track and stabilised. good luck!

[Beau2016 in reply to Maycontainnuts]

thank you so much for your reply 🙂

I lost loads years ago & it hugely affected my self esteem, somehow the feeling ill and pain is bearable but as soon as the hair loss & face rash get involved I just want to hide. I suspect it is chronic TE as it does grow back after 3-6 months of shedding but it never stays long enough to make a noticeable difference. I think the low ferritin & vitamin D play a big part in it. Hadn’t really considered protein though. 3 months of iron and my ferritin is rising.

Doesn’t help that I’ve put on a stone since I started steroids and feeling down about that too.

Lupus really sucks !

[Maycontainnuts in reply to Beau2016]

Oh my lovely, I know that feeling. It has a profound psychological effect and with the steroid weight gain on top no wonder you’re feeling down. I hid away for 3 months because of state of my face and hair. I was unemployed & didn’t have the confidence to apply for jobs so the stress of that compounded matters. Never did manage to get back to work. Lupus sure does suck! it’s a vicious cycle, the hair regrows but because cycle is disrupted it sheds too early. fingers crossed you can get it back on track. Re protein the trichilogist explained that hair needs it but is right at the back of the queue so if you’re not consuming enough it never gets any. I managed to get my ferritin back up to required levels after 3 months of iron tablets but a year or so later I noticed all the markers had started to slide so time for me to get them checked and bumped up as needed. Oh something else trichologist mentioned, because I started taking high strength Vit D - too much can cause problems & have opposite effect on hair but everyone different so need find personal optimum level. So I reduced to minimum recommended daily Vit D and B12 doses so I suspect will need boosting. You can’t take your eye off the ball for a minute! all the best x