Treatment Options

Hands up if you think there's a cure for alopecia!!!

Well I can't see any hands which means you are all geniuses and you are right :)

There is NO cure for alopecia.  Anyone who tells you there is is a damn liar and you better turn the other way and RUN!  Do NOT give them any of your money or time.  Pleaseeeeee.

This disease is a bit of an asshole.  Just when you think you've got it figured out and you're on your way to coping with what has happened, it throws you another curve ball.  For me, that means that some of my hair has started to grow back.  To everyone else, its not that noticeable, but to me, the fact that I now have to shave my head and armpits once a week is irritating.  Hahahaha.  Don't worry, I'm still good though.  I've made my peace with alopecia and I'm fine with whatever it throws at me.  Other people, not so much and that's ok.

One of the things I heard most often when I first lost all my hair was that 'At least its just your hair and not something more serious'.

Don't say that.

I feel like one Alopecian can say to the other Alopecian that 'its just hair' because they've experienced the emotional distress its caused.  Even then though, when people aren't coping, its the last thing you want to hear someone say.  (And if you said that to me, I'm cool with it.  But my handling of my alopecia is very different from other people's so its just something to be aware of.  And I know its hard to know what to say to people.  It's a mix of wanting to comfort and make light of a not so great situation and it is friggin hard to know what to say.  Especially when I didn't even know what I wanted or what I needed to hear.)

While I wholeheartedly agree with the sentiment (and now am very much of the mindset that it is just hair) to a person experiencing such drastic hair loss out of the blue, the effects of the disease are devastating.   I felt like I didn't even know who I was anymore.  I didn't recognize the person I saw in the mirror, I didn't feel pretty and I didn't feel normal.  It was awful and it's the reason why when my dermatologist suggested high dose steroids to make my hair grow back, I almost considered it.

Now, keep what I said earlier in mind, there is NO CURE for alopecia.  But there are treatment options.  I haven't done a lot of reading of the efficacy of all the different treatments but I am a bit skeptical of some things because alopecia is SO DAMN RANDOM.  Here you are just minding your own business and then BAM!  Out falls a patch of hair.  And you're like 'okay cool, I got this, no big deal' and then BAM! Out falls a bigger patch.  But then actually you start to notice some little white hairs growing in your first spot and you're like 'sweet, my hair's growing back. Good job body'.  And then all your hair grows back and you're all good and then BAM!  Half your hair falls out and you're spending an hour a day crying in front of the mirror trying to pin your hair juuuuust right so that none of your patches will show.

It's exhausting.

So basically what I'm trying to say is that the shedding/growth cycle is sooooo random and sooooo different for everyone, is it the treatment that's working or are you just in remission?  I don't really know.  (But obviously there are studies about the treatments and obviously it's working on some people, otherwise it wouldn't be an option anymore).

I will say this though, treatment options seem to be more successful the less hair loss you have.  So if you're like me, you're kind of hooped.  There's stuff you can try, it just doesn't seem to work (and you're hair could decide its going to grow back tomorrow anyway).  If you just have patchy spots, there's more options.  These options include........

(PS: I'm totally talking about non-scarring alopecia just FYI )

Steroids:

Not the 'look at my muscles, I'm so buff!' kind of 'roids but like the 'look at me, my body hates me' kind of stuff.  

Steroids can be really helpful sometimes.  Steroids can also be really harmful.

With alopecia, steroids are either given via topical creams that you rub into your spots, injections into the affected areas or via oral intake.  I want to say that the creams/lotions/shampoos and the injections are the 2 most common ways for alopecia patients and the oral dose is the least common but it may depend on your doctor and your degree of hair loss.

Now, this goes for everything in healthcare, it is VERY important to be your own advocate.  Please make sure you know the facts about the drugs the doctors are suggesting and ASK QUESTIONS.  I feel like steroids are pushed on a lot of alopecia patients (my doctor made me feel terrible for refusing treatment for my alopecia) but there can be some pretty serious side effects from these drugs.  (Not to say that seroids are always bad, when you need them you NEED them and you shouldn't mess around, however....)

Most of the time side effects are minimal.  Especially considering that the steroids are usually only used short term and in an isolated spot (unless your taking oral steroids in which case your whole body is getting the goods).  Some things to consider are:  thinning of the skin where the injections/creams are being placed, changes in weight (due to fluid retention), 'brain fog', and a higher risk of infections.  Again, these are worse when you are on oral steroids, but it is still something to consider.

DPCP:

This stands for diphenylcyclopropenone.  It's basically a chemical that you apply to your head that triggers an immune response from your body.  Like 'ack!  What is this?!!  Must respond!'  I think the basic idea is that your body gets distracted by attacking this new thing that it forgets to attack your hair.  

Does it work?  Well it must for some people because it is still prescribed.  However, it is sometimes super painful and irritating and hard to find the right dosage. (And, no one is really sure of the long term effects from constant use, so there's that).

Rogaine:

No longer just for men!!  You can buy women's Rogaine in a fancy pink box!

Yayyyyyyyyyyyyyyyy

This is something I almost tried because it is non-invasive and doesn't seem to have any side effects except for irriation, rash and FACIAL HAIR.  Not always, but on occasion, Rogaine might increase your facial hair growth.  That made me go 'hellll no!  I already have a Ukrainian stache going on, I don't need a beard too!  I'm out.'

PRP:

I want to say that this is a relatively newer treatment for alopecia but it's been used for some other things for a while.  PRP stands for 'platelet rich plasma' and basically what they do is take some of your own blood, spin it in a centrifuge and then take all the plasma and inject in back in to your head.  Somehow this is supposed to stimulate your hair to grow back.  I'm not sure how so you'd have to ask about that if you wanted to know.  There's supposed to be very little side effects to this since you are using your own blood.  However, it is mucho mucho expensive.

JAK inhibitors:

There's been a ton of talk about this recently in the alopecia community.  The story goes that there was this guy in the States who had Alopecia Universalis for a long time.  He got started on this drug for another medical condition and all his hair grew back.  Quite crazy really.  But make no mistake, this is not a cure.  There's studies going on in the States right now and I think the drug has recently become available in Canada as well.  It comes with its fair share of side effects though including unusual bleeding, light headedness, increase in heart rate, tightness in the chest, etc.  If you're interested, chat with your Doc and see if you want to give it a try.  I think the drug that most people are using is called Xeljanz.

There are other treatment options out there too that some people try but are a bit less common.  They include; UV treatment, biotin or other vitamins, other creams and shampoos and dietary changes.

One treatment that I think is grossly underused is this:  Go talk to someone.  But actually.  If you have alopecia and you're having a hard time dealing with it, find a therapist or a counselor or head to a support group and talk to other people with alopecia.  Oftentimes knowing that you're not alone can make a huge difference in how you approach your disease.  And it's always nice to meet fellow baldies :)

Last but not least, I do think it's important to know that NO treatment is also a completely legitimate option.  I think that people sometimes feel pressure to try something just because the doctor wants them to or their family and friends want them to.  If you don't want to try any of the treatment options, THAT IS OK.  Especially when it's estimated that as high as 80% of people with alopecia areata will have spontaneous remission of the disease.  So you just never know.  Oh ya, and by the way...seems to be that as soon as you stop whatever treatment you've been using for your alopecia, there is a very high chance that your hair will fall out again and you're back at square one.  Lame.

Now, I am not a doctor and my blog posts should not be taken as medical advice.  It's just a bit of info for you to mull over.  It's very important that you speak to your own doctor about your treatment options (if you so wish).

I've opted for no treatment and I'm very happy with my decision.  I didn't really feel like treatments were an option for me since my hairloss was so extensive and rapid.  I also made a decision early on that I was better off learning to cope with the disease rather than let it take over my life.  The thought of trying treatment after treatment and having them fail or cause me pain was too exhausting and I couldn't do it.  I do however understand why people try out their options because it is absolutely heart breaking.

The most important part is that you don't let alopecia take over your life.  It's not worth it.  There are so many things that you are missing out on if you do.  Deep breath in, deep breath out and let it go.

You got this x