Some people had tried having steroid injections in areas affected by alopecia areata. This was usually for patches on the scalp, but Michael had these for his eyebrows. The idea of having injections was off-putting for some. Emily explains that she doesn’t think the process or risks would be worth it for her, and she would rather accept her alopecia as it is. Ben considered having steroid injections but decided against it in case it caused marks or scarring on his scalp.
Arti describes having steroid injections and what it was like afterwards.
Arti describes having steroid injections and what it was like afterwards.
Age at interview: 22
Sex: Female
Age at diagnosis: 22
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I had the steroid injections which was painful [laughs]. It was basically lots of injections. So when there’s a small patch, it’s like lots of several little injections throughout the whole patches. So yeah, it’s quite painful. And it, the dermatologist at the time, he did-, so I think I had seven patches at that point and I think he did, he did two patches and even that he said was quite a lot because they were relatively large, I mean for a bald spot, they were quite large at the time, considering I had quite a lot of my own hair at that point because I was sort of hiding my hair at that point. So there, I had quite a lot of my own hair. And yeah, so that was quite painful. And I think that probably took about 45 minutes. I, but my dermatologist was very friendly and talking to me throughout and sort of making sure that I felt comfortable and he actually brought a nurse in for me to hold their hands [laugh] just to sort of squeeze when it was painful. And it did hurt quite a bit afterwards as well. I remember sort of like arranging my head like when I was in bed so it wasn’t like I didn’t really have pressure on the head in the spots I’d had injections in, cos it was quite painful to lean on. And but obviously it does go away and I don’t know if they worked yet. I think there are little tufts of hair in the two spots that they-, he put injections into.
Steroid injections involve using a needle to direct a liquid steroid into an area of skin. The injections are repeated in the same area over and over, and the person usually goes back for the treatment regularly. Meghan was scared about the treatment when she was younger and so started having jet injections (using a high-pressure stream of air to pierce the skin) at age 12 before moving onto steroid injections with needles. Those who had steroid injections often said they were painful. Meghan described it as like “cat scratches” and her scalp would bleed a lot. Grace and Arti said their doctors were understanding that the treatment could be difficult to have. Michael says the steroid injections into his eyebrows hurt a lot “but it’s worth it in my opinion”.
Having steroid injection treatments can be emotionally draining and mean missing time off school or work to attend appointments. Meghan remembers going back for the treatment every 1 or 2 weeks. Michael decided against trying steroid injections for his scalp as it would have meant lots of time away from his studies for travelling to appointments. He has steroid injections in his eyebrow once every three months.
As well as the procedure itself hurting, the aftermath of steroid injections can include:
- soreness
- headaches and migraines
- scabs forming – Meghan worried about others seeing this, which added to her missing school
Some people we talked to were still having steroid injections, but others had stopped the treatment. Hannah stopped as her doctors said she had so many that they were worried her skin thinning. Although slightly different, Rosie also had another liquid steroid treatment which involved her being on a drip. She would stay in hospital for about 3 days. During this time, she had blood tests to check she was otherwise healthy and then was put on an IV drip (into the veins) containing steroids for 30-45 minutes daily.
Hannah talks about the side effects she had from steroid injections.
Hannah talks about the side effects she had from steroid injections.
Age at interview: 21
Sex: Female
Age at diagnosis: 16
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The steroid injections ended up thinning in my skin quite badly. And obviously the immediate side effects were like I had a really sore head and headaches and stuff. But other than that I think it was okay, I think. But I do have a skin condition where I get like boils and everything and the, the steroid things were kind of making them worse, so that wasn’t really good. And again, the dermatologist would always talk to me and say ‘are you sure you wanna try this because that will then make your, like skin condition worse?’ and so it was weighing it up really.
Grace doesn’t want to try topical immunotherapy. She thinks it would be more difficult for her than the steroid injections were.
Grace doesn’t want to try topical immunotherapy. She thinks it would be more difficult for her than the steroid injections were.
Age at interview: 18
Sex: Female
Age at diagnosis: 10
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There's only the really one that I haven’t and that was the irritant applied to the scalp. Because I have quite a high pain threshold, so I didn’t really mind the injections or anything like that, because it was kind of like ‘brace yourself, it's going to be worth it’. It's kind of a sharp scratch, isn't it? It's like getting a piercing or getting some blood taken, which I have quite regularly because they're like, “Oh yeah, your iron levels might have changed, we'll check these,” or like, “Your glucose levels.” So, I have loads of blood tests as well but nothing ever changes. But yes, so I was just like, “Oh, let's just do it, do it, yeah,” and then so, I didn’t mind that. So, the irritant I didn’t really fancy because it sounded really uncomfortable, which for me is so much different than pain if that makes sense?
OK
So, I knew that the injections would be kind of painful for a short amount of time, and that it might be a little bit sore afterwards, but if you kind of cover it up and we let it heal and stuff it will be fine. Whereas it sounded I don’t know whether I got completely the wrong end of the stick, but this irritant sounded really uncomfortable, and that I would be kind of un-, this sustained uncomfortableness for a long-long amount of time. So, I just really didn’t fancy that [laughs], and I kind of thought ‘is this worth it even if it doesn’t work?’ So, I think the short amount of time that the injections I thought ‘right, OK, I can do this’, compared to the irritant. Well I was like ‘nah, I don’t think this is for me’. The thought of these-, sitting there and being uncomfortable, I don’t think it would be worth it. I'd rather-, and then the steroids and stuff, they were fine because I didn’t react badly to them at all. I don’t even think I noticed kind of the side effects at all, which is very good for me, but obviously might be different for other people. But yeah, it's only really the irritant I've turned down.
Grace had steroid injections for her patches. Her doctor stopped these when the size of the bald areas continued to increase.
Grace had steroid injections for her patches. Her doctor stopped these when the size of the bald areas continued to increase.
Age at interview: 18
Sex: Female
Age at diagnosis: 10
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It must have been steroid injections into my scalp, which was kind of when it was more patches, so that was quite painful. And that was-, I can't remember how long the course was – probably not very handy. It must have been quite a short course cos that was when it started to kind of really fall out quite rapidly. I don’t think it was because of that steroid; I don’t think it was because of that treatment. And then, as we could kind of see it deteriorating, she was like, “Right, OK, I can't do this as much. I can't do as much scalp as you have bare.” So she couldn’t- she was like, “There's no more, I can't do that many steroid injections into your scalp,” it was only really when it was those kind of like digestive biscuit size patches, something like that, rather than patches that were kind of two digestive biscuits, something like that, that may have spread across the whole of the kind of the back of my head. She's like, “I can't do that.”
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