Alopecia Areata “treatments” – what did I try?

Hi there guys!

okay, so a lot of people often ask me if I tried any of the “treatments” available for my alopecia. This article is purely in regard to autoimmune alopecia  treatments – so not including the treatments for cicatricial, androgenetic, Anagen or telogen effluvium and other forms of alopecia. 

I shall write a wee summary at the beginning of basic alopecia areata info, and then some treatments available – then we get to hear all my chat about what I have tried and why or why not etceteras. I shall also give you some wee funny chat about suggestions i have been given by well meaning people i have met in life. Please hold – the funny comes soon…..

PLEASE REMEMBER – THE FOLLOWING IS NOT MEDICAL ADVICE.  IT IS NOT INTENDED TO BE USED AS SUCH – IT IS PURELY MY SHARING OF MY UNDERSTANDING AND VERY BASIC INFORMATION – ALWAYS SPEAK TO YOUR GP OR DERMATOLOGIST AND THEY WILL INFORM YOU OF WHAT / IF ANYTHING IS AVAILABLE FOR YOU

click HERE  for systematic review on efficacy of medical treatment for alopecia areata. 


ALOPECIA AREATA – what is it?

So, firstly, treatments available for hairloss are dependent on the type of alopecia.

I have alopecia areata – specifically alopecia Universalis – this means hairloss that is autoimmune in nature (alopecia areata). Alopecia Areata (AA) can be patchy loss for some on the scalp. Areata includes Alopecia Totalis (AT is full scalp hair loss),  and Universalis (AU is full body hair loss), as well as Alopecia Barbae (AB) which is beard loss in men!

Very basically, it is known that in Alopecia Areata (AA), the immune system fails to recognise the follicle as part of the body, and attacks it – this prevents hair from growing from the follicle in this area at this time. The exact mechanisms of action are not at this time known – further research is required.

It is important to bare in mind, that with AA; the follicle remains alive – it is just inactive, and an easy way to think of it – it is not “dead,” it is just “asleep.” This means that there is always the potential for hair regrowth.

Is hair regrowth likely? This is dependent on extent of loss, time of loss existence, pattern of loss (less likely regrowth in “ophiasis” and in AU). this could be a whole article in itself regarding types and growth patterns and loss.

 

PREGNANCY REGROWTH

A little quick bit of extra information (as this is a topic that I hear discussed and asked about regularly)………. many of you gorgeous ladies out there have regrowth in pregnancy, and often this will fall out post delivery – many wonder why.

So without going in to excessive detail, during pregnancy your immune response is lowered. This is a protective factor – it prevents your body from “attacking” your little gorgeous bambino as it is growing in utero!

The reason for loss post partum? Well, once you have delivered your little precious cargo……. your hormones and body will begin to return to its normal pre-pregnancy state. The immune system reactivates, and the majority of the time in us alopecians…….. the immune system sadly begins to attack the follicles again, and that regrowth begins to vanish. Some ladies will keep their hair – but the majority will experience a further loss.

This can be so upsetting, and many wonder why this happens. The above is an extremely basic little piece of information – just if it is of benefit to any of you beautiful girlies out there.

 

TREATMENT TYPES AVAILABLE

Ok, so at present there are various treatments available in the UK that can be given. I will give a little brief summary of these. Then i can let you know what my choice was.

Before we begin, I just want to state……. the evidence (Cochrane Library systematic review) states that NO TREATMENT option can be verified as effective. Some will experience regrowth with treatment eventually – but in regard to whether this is with the help of treatment, or whether it is natural regrowth is uncertain.

The aim of most treatment methods in AA is to suppress the immune response. Even if a treatment is effective, often on completion of treatment – hairloss can be re-experienced and growth was short lived. This can have a huge emotional impact upon those who have been through this.

  • TOPICAL CORTICOSTEROID ;

So often, a first line “trial” will be to apply a “very potent” corticosteroid cream / ointment or lotion to the affected areas. The aim of this……… to allow some absorption of steroid in that area to suppress immune response and stop the immune system attacking follicle in this area. Many GPs will prescribe this for patients until a dermatology specialist referral is given.

  • INTRADERMAL STEROID INJECTIONS:

In the UK, intra dermal steroid injections are a very common first line of treatment in scalp loss which is less than 50%. A corticosteroid is injected to the “lesions” (bald patches) – same aim as above – prevent immune attack to this area.

This involves many injections to the area. If this is done for a sustained period of time, it can lead to little “dents” in appearance as the skin can be thinned in this area.

  • TOPICAL IMMUNOTHERAPY;

Topical immunotherapy is another common treatment and is often tried in those with more than 50% scalp hair loss. This involves a solution being “painted” on to the bald areas. You might hear people talk about having DCP / DPCP (Diphencyprone)…… what this does, is to aim to irritate the scalp and cause a local reaction (eczema and blistering can occur in the area temporarily)

  • SYSTEMIC STEROID AND IMMUNE SUPPRESSION

OKAY, so with this – this is basically taking tablets to suppress the immune system response. Often, PREDNISOLONE is the steroid prescribed. The dose and duration of trial is dependent on your prescription.

Steroids will suppress the immune system response over the full body. This also reduces your ability to “fight off” infection and viruses / abnormal cells. There are risks involved with taking oral steroids – it is not a treatment that is offered to all, and please ensure that you are aware of ALL risks prior to taking if you are offered this. Also, if you are taking prednisolone for any period of time…… always ask your prescriber if the dose will be weaned to prevent complications on cessation of treatment.

Other drugs which can be offered orally are Ciclosporin and Mycofenolate MofetilSometimes, topical Tacrolimus is offered – remember even with topical drugs (creams / lotions) – there is still a small amount absorbed systemically. These drugs are not commonly offered. However, I know that some people have been offered these for alopecia areata- ALWAYS ensure you are fully aware of what you are taking…

I am not going to write much on the above mentioned drugs, as they are very rarely offered and they have serious side effects.

WITH ANY TREATMENT – ALWAYS ENSURE YOU ARE AWARE OF BENEFITS AND RISKS – YOU MUST KNOW THESE IN ORDER TO MAKE AN INFORMED CHOICE ON TREATMENT. Your GP / Dermatologist is the person to give advice. 

 

SOOOOOOO WHAT DID I DO?

Alrighty guys. So if you are still here and reading – well done! I am even bored writing it, so you poor guys will be like snooze fest! haha! So I shall insert these photos for those of you who haven’t seen before – and to show some stages of my hair loss. Basically, my AA began 31st July 2015, and progressed to AU by around 20th September 2015.

 

 

So, initially, I saw a locus GP. The GP was so kind and so understanding – my experience was amazing – i had so much support at home / in work / from my GP practice. The locus prescribed me a “very potent” steroid cream to apply to my patches daily until I had an appointment with my Dermatologist for formal diagnosis.

I did use this cream for about 3 or 4 weeks – then i stopped. i had itched my head one day, and a large area of skin tore from my head – my skin had thinned so quickly (this is NOT the norm). I had no regrowth and was experiencing further loss – i actively chose not to use this any longer.

DERMATOLOGY

So, it did take a few weeks for me to see dermatology. My initial GP Referral stated that I had 3 patches of circular hair loss on my head and patchy body loss. By the time I attended the Dermatologist – i had lost all of my scalp hair…… and the majority of my body hair! He was amazing and so kind.

So, I told the dermatologist that I had read the systematic review on the cochrane library with the evidence stating that no treatment can be said to be medical effective.

Following a long chat with the consultant, I made the informed choice not to pursue further treatment. I was emotionally in turmoil with attempting to accept my condition and rapid change of appearance. I decided that acceptance was what I had to aim for.

I had become addicted to trying out new wigs! Diagnosis AU with wigaholic tendencies.

I had discovered the SIMPLY WIGS website. They are an amazing company, and the service I received there was just phenomenal. Not only were the brands sold fantastic (and amazing pricing), but the staff were just so lovely and helpful. Nothing was a bother when I asked questions – they were just perfect! My only problem at this time – i could not afford to buy wigs regularly, and at this time in my life – they were what I considered to be MY TREATMENT OPTION.

So, my amazing amazing dermatologist gave me a prescription for 4 synthetic wigs – and away I went with a smile on my face and realising – I can do this! Life is going to be ok! This is me with a formal diagnosis, and now I can move on with my life and start this road to acceptance of my new appearance.

 

WHY NO TREATMENT?

sooooo many people would say to me “why don’t you go get treatment – it is worth a try, surely?” for me, i did not want to try anything that was not medically proven to be considered as an effective option. I did not think that emotionally I was equipped to placing my hope in a treatment which in all likelihood was not going to be effective in me.

Had i experienced growth and a further loss, I felt my mental health would have taken such a huge hit – I know i was not mentally fit for this. And my rational brain would tell me “it may not work, be prepared” while my emotions would be causing me to be filled with hope…… and i could not handle the heartbreak associated with failure to be effective.

 

ACCEPTANCE

so for me, i decided that accept “THIS IS ME,” is my plan and aim. I could not live checking my head every day for signs of growth and having none. While many feel that knowing there is hope it may return fills them with contentment, for me – I am very much a person who hates the unknown. I can handle the worst – I can not handle unknown, as I feel trapped in limbo. Does that make sense? ‘Tis how the Miche brain works!

So it is October 2015, and I am bald as an egg on my wee head. I was ok in public – at home i was still a total wreck! I would cry constantly and avoid all mirrors. I would apply make up by purely looking at that area only of my face. No-one other than family knew how I was feeling or saw me upset. I tend to hide out from the world when I feel so down.

Everyone knew I had alopecia – I shared photos via my Facebook for all to see. I wanted people to see for the first time when I was not present – I didn’t want to see the look of shocks or sadness and sympathy on their faces. I could not handle seeing that. If i ever chose to show my bald………. it wasn’t going to be a surprise to anyone and i did not need to see that first look on their faces.

I was introduced to the Scottish Alopecia Support group via Facebook, and then the ALOPECIA UK charity, and closed Facebook group. The Alopecia UK Facebook support group was just PHENOMENAL for supporting me. Before long, I found myself in such a positive place and accepting of my alopecia……. this will be a whole other article!

 

FUNNY SUGGESTIONS

So as time progressed, I began to realise – act ok has become be ok and i realised that one day I just seemed more positive. I can say now that i LOVE my wee bald tattoo’d head (tattoo article will be another yet to come)…..

So, for this of you who know me – you know that sometimes I wear something on my head (wig or headwear), and sometimes I just like to go out au naturale and bald……. it is dependent on the mood.

People I meet for the first time often as “why are you bald?” or “have you had chemo?” and I love to talk to people. I am a bit of a social monkey……. and I appreciate people being honest and direct. I would rather someone ask me anything than talk behind my back.

I am a very open book, and happy to share almost anything about myself with most. I find it more difficult to discuss negative emotions in myself or admit i struggle emotionally until that phase has passed. I always can talk after though.

So some people have had such funny ideas. I shall list some below – you have to tell me if you have experienced any funny ideas. I always have a giggle…… people do mean so well. The truth for me now, I don’t particularly want my hair to grow back. Yes, I have days i think ” ah it would be so lovely to have hair” but many benefits come with being bald! (another article will come on that)

  1. Rub onion juice on your head; firstly, no thank you – i love onions….. but just to eat….. i do not want to rub any on myself….. waste of an onion, and “eau de onion girl” is not my fave scent!
  2. Coconut Oil; I actually do use coconut oil on my scalp and dry skin – it is very good when my eczema becomes problematic, and the smell is amaaaazing! No regrowth though! If you have problematic skin, this is lovely to use – the smell if nothing else is just lovely jubbly!!!
  3. Do a headstand 3 times a day for 5 minutes; I don’t really understand the rationale of this. Force the hair by imposing gravity on yourself in an upside down fashion? Can you imagine me doing a headstand? hahahaha I should do it for fun just for a photo to make you guys laugh!
  4. SLAP your head before bed: NO! JUST NO! This is crazy, and I don’t even know why this was said to me – don’t slap yourself. If you ever have this suggestion…… tell the person to slap themselves for saying this! i was about to take a drink of pepsi max as i was told this, and i spat it out everywhere laughing (and some came out of my nose – attractive, I know)
  5. HERBS and chinese medicine: This is not anything that I have tried. I believe in complimentary therapy…… and i believe that if people want to try anything – informed choice is the way forward. I don’t tend to use complimentary therapies that are not cruelty free…….. so i tend not to use this method for many things. Again though, if you want to give it a try – let me know what you think.

 

AVOID BEING HOOKED BY FALSE ADVERTISEMENTS FROM COMPANIES

I KNOW that it can be so hard to accept hair loss. Some will never accept it fully, but just learn to live with the condition. Sometimes, people are so desperate to try various therapies that they will spend so much money. I did spend so much – that i could not afford…….. but my treatment choice was ACCEPTANCE – for me, i did not have counselling……. I wore wigs and they played a massive part in me “finding myself” again.

Some companies will claim that their shampoos etc are beneficial in alopecia….. that they can help with growth. PLEASE listen to me….SHAMPOOS made by well known hairdressers DO NOT penetrate the epidermis and do not affect your immune response. If you have AA….. nothing you use (hair products) will make the condition better or worse for you.

I recently heard a girl with alopecia try a shampoo and conditioning range which is available in supermarkets – it says it helps with hair growth and thickening. SO MANY people then bought this. I hate when brands give people false hope. If this was effective……. there would be research to back up these claims, and medics would advise you use it. If you want to try – then I am not saying do not…… I am aware that marketing is for sales purposes – and i hate when vulnerable people are “duped” is all.

What I recommend…… and what I have done…… look at the ingredients on your shampoos…… are they full of silicone based polymers? this will deposit a fine layer on the hair shaft and it will cause it to look better conditioned and thicker…… it will be lovely and shining initially…. after time as the deposits build up, your hair can become lack-lustre and thick with product…… you will use a clarifying shampoo possible and strip all that product away – your hair is no better than it was initially.

Learn what some of the products are in the products you use (make up and hair products)….. and decide which is best for you.

 

If you have had treatments for your AA and they have been successful, tat is amazing! I do know people who have had short term regrowth following treatments. It is all very individual – what some swear by, has no effect on others.

I do not advocate that anyone “copies” what I have done – I actively chose no treatment, and that was what is best FOR ME. It does not mean it is what is best for you. What is best for yourself, only YOU know – and this is a conversation that I believe you need to have with your Dermatology consultant. Be advised of all benefit and risk, and make an INFORMED choice in your care and treatment.

I love to see stories of people having regrowth – it is lovely when someone is happy. I love that! whether it is with hair growth or anything…… i may be very odd, but regrowth for me i would struggle with – as my new acceptance of me is of bald miche!x

If you choose no treatment and opt for wigs or headwear or bald and struggle emotionally – some people have counselling available to them. Please do speak to your GP and be totally open and honest with them about how you are managing.

The emotional side of alopecia areata is what is often the most difficult. The physical effects may not be serious in a life threatening way…… but they are serious in the way that they can affect mental health and exacerbate existing mental ill health.

I am going to sign off now, as I realise this has become excessively long!!!!

I will attach a link the the Cochrane Library with the Systematic Review on Alopecia Areata Treatments here. it is gold standard evidence and worth a read .

I am aware that there is much research currently being undertaken on the use of JanusKinase Inhibitors (JAK inhibitors) in AA, AT, AU in the USA. That would be a whole article in itself if I begin with my thoughts on such!

 

Time to sign off, and send you guys all of my love and hugs,

Miche (AKA BaldBarbie)

x

 PS. The systematic review on TREATMENT FOR ALOPECIA AREATA, TOTALIS AND UNIVERSALIS  is the gold standard of evidence – have a read x 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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