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Living with Psoriatic Arthritis (PsA)

Let’s add alopecia areata to the list


#1

A few weeks ago I found bald patches on my head and was diagnosed with alopecia areata, also autoimmune. My Enbrel failed just prior to the bald patches and I’m in the awful gap until I can get the PsA under control again. I’m crying a lot but trying to stay optimistic.

Here’s a vent though. I seem to be getting more support and sympathy from the people in my life regarding the alopecia areata than the psoriatic arthritis. I show my swollen fingers and walk around with pain and plasters on my body and no one seems to get it. But bald patches (yes, also scary and hard to control) practically bring tears to their eyes. People offer to help me more now than when I have PsA flares. Is it the visibility of the hair loss that makes them so sympathetic?

Also, has anyone by chance had alopecia areata and had regrowth? I’m going to look up some support forums for that as well. Thanks!


#2

That’s a bummer. My husband had one patch of alopecia a couple years ago. I can’t remember whether he just used topical steroids or steroid shots. Regardless, he did regrow hair, and it hasn’t happened again. Not a huge deal for him because he keeps his hair shaved super short. But if you have longer hair, it’s more of an issue, the regrowing stage.


#3

Good to know @Stoney, thank you. I’m planning to start cortisone shots next week as it seems to be the most effective treatment. I’m lucky the bald spots are somewhat hidden in my long hair at least for now.


#4

It is frustrating that nobody seems to understand about the psoriatic arthritis. I guess they think, arthritis–well, almost everyone gets that sometime in their life! And, they don’t seem to understand the difference between inflammatory arthritis and osteoarthritis!!!
AA is really annoying and I can sure understand how it makes you sad. I would be devastated, too, but there is hope your hair will grow back!

I know of a few people who lost their hair completely–one was a 20-some-year-old friend of our daughter…hers grew back really fast. It basically fell out and a few months later came back in full force! I think it’s more common than not for it to grow back. :slightly_smiling_face:


#5

Hi sha.

3 years ago I stopped Methotrexate due to high liver enzymes. Prior to that I’d had many years of inverse psoriasis followed by clear skin for at least 10 years. Almost as soon as I stopped the Mtx I started getting a rash on my scalp, legs, feet and it spread to cover most of my body except arms and face.

The rash on my head wasn’t extensive, though there were very thick scaly patches, like concrete. Around the first patch, hair just plain disappeared … and then more bald patches appeared in rapid succession. They were big & definitely completely bald, not ‘thinning’. Yes, you do get more sympathy … my husband nearly had a nervous breakdown when he spotted the first one, though probably in anticipation of me going completely doolally.

So, although I have PsA, there was much confusion as to the nature of this rash and the cause of the baldness. The following were considered in addition to psoriasis: eczema, discoid lupus, fungal infections, dermatitis, skin cancer, alopecia areata plus a couple of really obscure things I can’t remember. Ultimately the conclusion was … da da: Psoriasis!

The way the baldness was eventually explained to me, unsatisfactory as it may seem, was that the psoriasis had sent my follicles into shock. Or something like that. I know you don’t mention psoriasis but it seems to me that your bald patches might just, maybe, be related to a similar ‘shock’ reaction. Anyway, about 9 months later I re-started Methotrexate and within weeks my hair started to grow back and the psoriasis cleared up almost completely.

Obvious question is, have you stopped any other meds e.g. Mtx? Or it could be that the sudden withdrawal of Enbrel has had the same effect on your body as stopping Mtx had on mine. I would say that my OTT reaction to stopping Mtx and the rapid recovery once I re-started have been the oddest things that have happened since I was diagnosed with PsA.

Strangers would hug me when they saw the bald patches. Some people were indifferent. I did a lot of crying. My rheumy, who was not Mr Softy, simply said ‘I take hair loss in women very seriously’. He nailed it, there’s a psychological hit that comes with women losing hair, it doesn’t make much sense but that is how it is. I don’t know what I hate most: fawning sympathy or total lack of sympathy, they both suck.

Obviously, given my experience I’d urge you to relay my story to your rheumy / derm and see what they say about possible involvement of cessation of meds.

My hair grew back just fine, I really, really hope that’s how it is for you too.


#6

Thank you @Grandma_J. I’m trying to stay optimistic!


#7

@Sybil thank you, this detailed information is so helpful! It must have been so stressful to have the rashes and to go through all of the back and forth around why you were losing your hair. But the explanation about follicles going into shock makes sense. I was also worried about lupus and other things but so far two dermatologists have called it alopecia areata. I’m not currently having psoriasis although I have a rash on my face which I need to get the derm to look at.

What I wasn’t clear about in my original post is that our first step in getting my PsA back under control is adding MTX to Enbrel, which I never stopped. The rheumy’s theory is that we may get the synergistic effect of the two together. I took Enbrel alone because I couldn’t handle oral MTX so we stopped the pills early on and stayed with Enbrel alone. This time around we’re adding Otrexup (MTX in injection form). So, the good news is that I’ve been on MTX for 5 weeks now. If it can possibly help the hair loss I’m already on it for my PsA.

Having two acute conditions now makes me feel like everything’s just completely out of control. I’m trying to be positive and imagine my hair growing back and my joints not being swollen and hurting, but yesterday I found a new bald spot so I’m distressed again.

I will mention your story to my doctors. There’s a lot in there and I may learn something by asking. I love what you said about fawning sympathy and lack of sympathy and I agree completely, they both suck! Thanks so much for sharing.


#8

I absolutely know the feeling.

How long since you stopped the first round of Mtx?


#9

“alopecia areata and regrowth” ---- I know of two people who had/have alopecia and had regrowth, one lost all his hair on his body but then had it all come back in within about 18 months, although it went from straight to curly! And as I understand it he’s in danger of it happening again, there’s no way to tell. The other person struggled with various degrees of alopecia for about 10 years but eventually the vast majority of her hair came back, you would never know there had been a problem.

I do know stress can play a huge factor. My cousin (third person I’ve thought of!) gets bald spots when she’s under stress, it hasn’t been officially Dx as alopecia but it flares just like alopecia can and the bald spots are perfectly smooth and perfectly round just like aplopecia. She gets her stress under better control and the patches go away.

So I would say there’s hope!

azurelle


#10

@Sybil almost a year and a half since stopping the MTX pills. We hadn’t yet gotten to a full dosage.


#11

I knew about yours, too, Sybil, and I remember how disappointed you were when your husband noticed your first bald patch. I sort of remember yours started coming back fairly quickly!

Sha, I think you can be optimistic that your hair will come back. :hugs:


#12

It was a good few months @Grandma_J. I think when hair falls out (as opposed to breaking off) that means that the natural growth cycle has been disrupted, so there may be a bit of delay before you see re-growth, even after whatever caused it is no longer a problem.


#13

Just an update. I’ve done three rounds of scalp injections and have regrowth on the first and largest bald patch. Light regrowth on the second patch. My other bald patches are still growing in size and I just got a new one, but I’ve removed as much stress from my life as I can and I have a new treatment for my PsA. Just started Humira last week. Still optimistic! Thanks everyone for your support here.