Hair today, gone tomorrow. Hair loss with autoimmune disease.

Hair loss with autoimmune diseaseAs far as autoimmune diseases go I think I’ve got my fair share and then some. Psoriatic arthritis (PsA), psoriasis, ITP (attacks the blood platelets), coeliacs, and fibromyalgia/ME. Although I think that fibro/ME are the same thing and autoimmune, the jury is still out on that one.

Not only are there problems with each of these conditions, such as migraines (severe), multiple chemical sensitivity, adrenal insufficiency, malabsorption of nutrients, etc. but also numerous and some nasty side effects of the drugs used to manage these conditions.

Between all these conditions and the side effects of years worth of chemo and biologics drugs, not to mention all the brain chemistry altering drugs to calm the fibro brain is it any wonder that I can’t say what exactly causes certain symptoms/side effects. Often I don’t even know if something is a symptom or a side effect!

About 10 years ago I started to notice that my hair was thinning and since I had scalp psoriasis that was out of control I also developed bald patches. This is very distressing as a woman, as often our hair is the first thing that we and others see. To say I was upset was an understatement.

I battled with lotions and potions for years but often my hair was breaking off with these harsh treatments. But as I had bald patches I kept my hair long where it wasn’t obvious that I had clumps missing.

Eventually, after making a case to NICE for biologics treatment, as it should work for PsA, psoriasis and was in clinical trials at the time for ITP (and I have failed all ITP treatments) I was granted the anti-TNF treatment that was fairly new at the time.

It took a good 18 months to clear up the psoriasis but was much faster with the arthritis and took about 2 weeks for me to have reduced pain in my tendons and joints. The swelling and bruising took about a year to go down as it was severe in places. Sadly, it did nothing for my platelet count with ITP. But hey, two out of three is still good. I’m still on biologics 8 years later and have done well “clinically” as most patients get an average of 5 years according to my rheumy.

Biologics are not all great though. There are some pretty severe side effects. I now have multiple chemical sensitivity and numerous allergies that are not reversible. I developed Coeliac’s disease while taking it and there might be a link. I would have a severe fibro migraine after each injection that lasted on average 3 days. I also had more hair thinning. Although I know this is not a severe side effect (as increased risk of cancer and high risk of lupus are listed) it is nonetheless distressing as it’s visible.

I have worked my way through 4 biologics over the years as new ones have become available and finally I’ve found one, Cimzia, which doesn’t give me those god damn awful migraine things. I think migraine is a huge understatement. I’ve had migraine since I was 14 but the fibro ones are 10 times worse and can result in a TIA, I know first hand. So I’m really pleased that Cimzia doesn’t do this to me.

Everything above though has hair loss as a common side effect. Great!

The conditions themselves are not helping me either. For instance, malabsorption of food means that I’m deficient in many things and now have supplements from the GP for vitamin D, magnesium, vitamin B injections, and I take a woman’s multivitamin each day and probiotics. I am intolerant to many foods in addition to gluten (pulses, lentils, onions, alcohol, green chillis, and am low FODMAP). This makes getting all the nutrition that I need very hard.

When the body struggles to get all the nutrition it needs often the first things to go are hair and nails as we are not reliant on them for survival. Yes, I lost several toe nails in the new year as well. 🙁 I’m literally falling apart!

Six months ago it all got much worse and I was very, very ill. As I said, my toe nails fell off, my hair is now coming out in clumps and thinning very fast, fatigue doesn’t even begin to cover it!! My muscles just don’t work anymore and walking is very hard.

I’ve been under an immense amount of physical, mental and emotional stress for the past year and it has caught up on me. My GP agrees that I need to see an endocrinologist about adrenal insufficiency. Yet another condition that results in hair loss and nail loss!

Even though I don’t have obvious bald patches my hair is so thin now that it won’t be long before you can see my scalp. It was long and lank, lacked any shine or lustre and made me look like an old lady. I couldn’t tie it back as it would fall out with the elastics. All I could do was look old with it. I’m only 39 yet I looked 60 plus. See!2016-04-12 10.50.08


I’m working hard on trying to find the root cause and keep on doing what I can to improve my lifestyle and diet, although I have already done a lot of that. I tried various supplements that are supposed to help but was intolerant to most of them. I swear I need to be IV fed to try and bypass my intestines!

While I’m trying to recover my hair loss and feel better all round I bit the bullet and asked my hairdresser to help me find a short style to encourage regrowth and keep what I have healthy.

I was really nervous as I’ve had long hair since I was 10 years old. I cut off all my hair once when I was in primary school and hated it so much that I couldn’t ever face doing it again. So this was a really big decision for me.

My hairdresser was great and she knows to be gentle with my scalp and hair. She did my hair in the photo I use as my gravitar. I’m not normally that well turned out!

I think that she did a great job with a difficult client. Here’s what it looks like now.

Cath with short hair20160703_141245crop

You can also see the wonders of make-up! I looked awful in the photo above and I’m being brave showing you what I look like behind closed doors. On the odd occasion I do go out I at least put powder and lip stick on. If only people knew what was behind these closed doors of ours, hey!

I still don’t have much hair but at least the new growth doesn’t have to grow for so long to catch up with the rest. I’m hoping that I might see some recovery by Christmas. If not, I’ll be asking Santa for hair scarves and extensions!

Do you know of anything that can help with hair loss? If so, I’m listening. Please pop your views in the comments below. I’m pretty much at a loss (pardon the pun) as to what else to do.

Love and spoons,

Cath xx

Things I am grateful for:

  • I have very few grey hairs!
  • I have a very kind and understanding hairdresser.
  • I have a hubby who would love me even if I was bald.
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