Anyone suffer from Pityriasis Roscea? - Thyroid UK

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Anyone suffer from Pityriasis Roscea?

Chancery profile image
29 Replies

Hi, I've had a rash for around 8 months now. At first I took it for ringworm, although I was mystified as to how I could have picked this up (no children, no pets) and my doc confirmed that's what it looked like. After a few months of treating it with anti-fungal creams, it just kept spreading. I mentioned it to my doc again and he said it looked like it might actually be Pityriasis Roscea. After looking it up on Dr Google, it did sound like a better fit, so I stopped using the cream and nothing happened. No better, no worse, so not ringworm after all, I'm guessing.

I had the 'herald patch' on my chest first then large red blotches appeared on my thigh, then my arm. I now have it from my shoulder to my knee, all down the right-hand side of my body. It's very localised to just that area. It is much worse after a shower and does have a slight scaly feel in places. If I scratch it inadvertently, (some patches do itch, others not), the skin comes off alarmingly easily.

However, the most significant thing about this is it's only supposed to last a few weeks. In bad cases it can last five months, maybe six. I have had it for at least 8 months, with no signs of abating. As I have several 'issues' (trigeminal neuralgia, subclinical hypothyroidism, anaemia and neutropenia, plus I am on Carbamazepine, which produces loads of drug-related illness), I have NO idea which one might be causing this. So I'm asking on each of my forums to see if it might go with one of these conditions.

I'm not absolutely sure it IS Pityriasis Roscea, of course, and my doc couldn't care less, so if you have something like this, or have had it, I'd be really grateful if you could give me any information on which condition, if any, might be to blame, and if there is anything that could be done to clear it up.

Many thanks!

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Chancery
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29 Replies
bantam12 profile image
bantam12

I had it badly about 2 years ago, i was covered in the rash, worst was my neck and body but also on legs and arms, it lasted 4-5 months, no idea why I got it. I was given a steroid cream for the worst areas and i used calamine lotion. If yours isn't going I would ask to see a dermatologist.

Chancery profile image
Chancery in reply to bantam12

Thanks, Hypohen. I've been considering asking for a referral to a dermatologist but can't face any more doctor appointments; I have too many as it is. Can I ask, do you have Hashimoto's?

bantam12 profile image
bantam12 in reply to Chancery

I had Graves now hypo due to surgery and RAI, also had hyperparathyroid disease.

Chancery profile image
Chancery in reply to bantam12

Do you feel there might have been an autoimmune connection with the rash (although Graves isn't autoimmune, I believe)? Do you remember it being connected in any way to any specific event, or anything else to do with your thyroid problems?

bantam12 profile image
bantam12 in reply to Chancery

Graves definately is autoimmune, no I don't think it was connected to thyroid at all, I first had Graves well over 40 years ago so have had thyroid disease of one sort or another most of my life, no skin or rash problems. I think this was just one of those random things that happen.

Chancery profile image
Chancery in reply to bantam12

Sorry, Hypohen. My knowledge of thyroid conditions starts and ends with hypothyroidism, and I'm still very new to that. Ironically, I only added that in about Graves afterwards because I suddenly thought, 'Wait a minute, maybe Graves isn't autoimmune'! I should have stuck with what I had and looked more knowledgeable!

I can't believe this rash is random for me because I seem to have a cascade effect going on all the time. I think it's because of taking Carbamazepine - the fun just doesn't stop with that drug - but what thing has bumped into what and caused it, I will probably never know!

bantam12 profile image
bantam12 in reply to Chancery

My rash started small and over time crept almost everywhere, it was insanely itchy as the patches became dry. I was left with slightly discoloured scars which have since faded away. If you think your rash is drug related then yes you need to know but sometimes there is no reason, these things just happen.

Hope you recover soon.

Chancery profile image
Chancery in reply to bantam12

Yes, my patches do the same, they fade to a pale peachy colour, then a sort of tan-ghost, but by then another two have sprung up!

Yeah, I do have an issue with having to know the reason for everything. I'm just worried this is part of a bigger picture. But sometimes yes, you just gotta be Zen..........

Hi I had this rash two summers ago it got very itchy when I was to warm . My doc knew right away it started on my hip the herald patch an then spread all over chest area legs behind knees etc I had it about 12 months with very faint rash for a while afterwards . Don't know how I got it either but my doc wasn't concerned either . I just wore cotton an kept cool as much as poss

Chancery profile image
Chancery in reply to

Hi Donna - good to hear you had it 12 months. Well, I mean good that there's not something drastically wrong with me having it for 8; typical medical sites, underestimating how long it lasts!

I got mine at the end of last summer - maybe it's heat or sun related. can I ask you too, do you have autoimmune issues, like Hashimoto's?

in reply to Chancery

Yea I was at hospital last week for Ultrascan an told I've very little tyroid left . Havnt been well from march have never been referred to an endo . I'm really tired of all of this . But guess I'm not the only one . Sometimes I often wonder about that rash it's supposed to only effect young adults don't know what age u r but I was 49 lol

Chancery profile image
Chancery in reply to

Yeah, Donna, I can see your 49 and raise you almost ten years. I was 57 when I got mine! (Now 58 and it's still going strong, bless it). I don't suppose you remember you getting it being connected to any specific event, health-wise?

in reply to Chancery

The only thing I can think of was that I had moved to a new department an wasn't very happy . The other thing was I noticed it after grooming my dog so I thought it was like a bite at first . Flew to Portugal the next day an it didn't spread till I got home my doc said the sun has done that . But sure who knows . Mabe a stress thing cause I really wasn't happy at my new job

Chancery profile image
Chancery in reply to

Stress seems as good a reason as any. It certainly does seem to cause skin break-outs. Likewise, I think the doc might be right about the sun. I suffer from chronic urticaria, brought on by the sun, and I got this at the tail-end of the summer, when my urticaria was in full swing, so possibly something in that one. Thanks for all your help!

in reply to Chancery

It will go away in its own time but mine went like a peachy colour then faint brown an then gradually disappeared . Horrible weird thing tho . Hopefully yours will go soon but just to let u know mine spread everywhere first only place I didn't have it was my face . Hopefully this will put ur mind at rest you to will be free of it :) :)

Chancery profile image
Chancery in reply to

No, Donna, it doesn't put my mind at rest to know it's going to spread everywhere!!!

Only teasing, I know what you meant, and thank you for trying to cheer me up. I'll just keep saying 'this too will pass' and remind myself that I might be 'as unlucky as Donna and have it everywhere'! X

in reply to Chancery

Ha ha ha . Glad you understand me .

Barrister profile image
Barrister

I had it many years ago when I was 18. It started just before I started my nurse training and my GP told me it would last a week! It lasted many months. The herald patch was where my bra strap sat and eventually it covered me from just under my chin, my arms, my chest, stomach, all the way down to my thighs. At times it was very sore and I was given cream which I think was a steroid but it was a very long time ago so I can't be sure. It cleared eventually. Clemmie

Chancery profile image
Chancery in reply to Barrister

Hi Clemmie, yeah, I got my herald patch, a nice neat little circle that did look like ringworm, on my breast, near my bra strap area too. However, the next spots appeared on my right thigh and then down to my knee, then at the top of my right arm and it's now working its way down to my wrist.

Apparently it's normal to get the herald patch on your chest or sometimes underarm. I've seen pics on the web of people with the rash all over their chests and stomachs and backs, like yours was, but mine's has this really weird all down one side thing. Also my patches are big and red, pale and dark, not small spots like most people seem to have. Trust me to get a weird variety!

Barrister profile image
Barrister in reply to Chancery

I didn't have small patches, they were big and red and spread over a large area. And made my skin so dry that it felt like it was going to tear. Very sore at times. But it did clear up eventually. Clemmie

Chancery profile image
Chancery in reply to Barrister

Yes, Clemmie, exactly - I have that too. That's what I mean, they feel very fragile, slightest scratch and they bleed and get all grazed looking, like you've clawed them. And yes, mine's are sore sometimes; tender, like raw abraded skin. They look unsightly too. I got a revisitation just beside where the herald patch had been and I have a big red blotch that shows on my chest, then all the others up my right arm. Fortunately as long as I don't go out dressed as a geisha girl, no-one sees the ones on my thigh!

lilliput profile image
lilliput

I had it when I was about 45. It only lasted for about 6 weeks so maybe I was lucky. The itching drove me crazy,I used calomine lotion for it. Wasn't diagnosed hypothyroid at the time though I had had a bad cold just before it appeared.

I too thoughtit was ring worm and asked a chemist tolook at it. About 2 weeks later the rash appeared.

My rash was very Christmas Tree and symmetrical.

Chancery profile image
Chancery in reply to lilliput

Hi Lilliput. Yeah, mine's isn't really itchy. Or, to be more accurate, only certain patches are itchy. Or they only itch very intermittently. It's weird. During the night I must have scratched a patch that has been consistently itchy since it first appeared - the first patch at the top of my arm - and didn't spot my arm was smeared with blood till I felt this sharp sting under the shower. When I looked at it the skin was hanging off in strips. The skin seems to be VERY fragile on the patches and bleeds really easily if you do scratch it by accident. I've taken to checking my body before I scratch anything on my right side!

I have seen pictures of the Xmas tree pattern, but mine's is absolutely NOTHING like that. Mine might pass for a flagpole, straight up and down, but never a Xmas tree. Also I seem to have much bigger patches. I did wonder if I have another type of Pityriasis; there does seem to be several varieties.

Marz profile image
Marz

Our skin is our biggest organ and can often reflect WIGO - what is going on - in the gut. I expect when you start your Gluten Free eating plan on Monday your problem will quickly resolve. There is Dermatitis Herpetiformis that is linked to Coeliac and Gluten sensitivity. Also you may find this is yet another issue related to your untreated thyroid. Sub-clinical - a bit like being a little bit pregnant - how can that be ?

ncbi.nlm.nih.gov/pubmed/193...

Chancery profile image
Chancery in reply to Marz

Thanks for that, Marz. really interesting. I knew skin disorders are a feature of thyroid problems because most of the books/sites mention them, plus you see so many people talking about them on here. But it does make you wonder about my chronic urticaria. I told my doc about it as a possible autoimmune issue, especially as I've had it for so VERY long, but he didn't want to know and didn't take it seriously. I reckon you could ask him if I had it now and he wouldn't have a clue. But if mine's IS connected then the thyroid problems have been around a long time, and if they have been around a long time then my thyroid results getting 'better' may indeed only be a fluke caused by coming off carbamazepine - however briefly. But more important than any of that, it means that there IS an autoimmune thing going on, somewhere, 'no antibodies' be damned (well no TPO, or whichever one it is the NHS measures, since they don't check the rest). And that's serious, at least to me.

I only suspect three things with the rash: 1. It's a Carbamazepine drug-induced-illness. I've got so many of those, what's one more? 2. It's because of the neutropenia and is actually an infection of some kind. Or 3. It's related to autoimmune/thyroid. But like everything else, how can I tell?

I won't be going gluten free this Monday because I've decided to go completely sugar-free instead. Up until now I haven't eaten any added sugars, as in sucrose, but I do have dried fruit, fruit between meals, and the odd bit of sucrose when it's 'unavoidable'. I've been doing more reading on the subject and feel that sugar is such a dangerous endocrine disruptor via insulin, leptin, obesity etc that I want to remove them all, so I've been cleaning house. I realised I was feeling overwhelmed with doing sugar and gluten together (I wanted to eat every confection known to man; a sure sign of overwhelm), so I've decided to stagger them. Once I am through sugar withdrawal (God, I hate it), I am going to tackle gluten.

That said, I eat very little of it at the moment. Most days, only one slice of toast in the morning, that's it. My only other indulgences are wholewheat pasta and the odd meal in wholemeal wraps. I am not a big wheat eater. But I've binned all my rye products and I no longer eat wheat cereals, I did away with them a while ago. I'm not being chicken-sh*t here. I realised that if my health did improve, and I hope it will, I wouldn't know if it was because I'd cleaned my diet of sugar or because I had stopped gluten. This way I'm hoping I'll be able to make better judgements of what's working for me.

But I am really going to miss snacking on fresh fruit (I never snack on dried, just use it in cooking). I rely on it to get me through the day. I had just done a big dried fruit shop too, and bought a small fortune in expensive fruits, and now it's all going to the food bank! I also fed the ants out the back with about 2kg in old half-done sugar packets that have been kept 'just in case'. I never used them anyway, so that's no loss.

So that's me. Sugar out tomorrow/Tuesday (using a couple of things up - helps stop me feeling deprived!) and then I'm going cold turkey. But I promise you I will be doing gluten too, as soon as I stop climbing up the walls from insulin withdrawal! Wish me luck; I'm going to need it!

fxp182 profile image
fxp182

I had it early May of 2014, I was then diagnosed in early July with Hyper, then hypo then hyper then finally hypothyroidism. Nightmare but all is ok now.

Chancery profile image
Chancery in reply to fxp182

That's interesting, fxp. So yours did actually coincide with you being diagnosed? That's what I was wondering, if my subclinical hypothyroidism had occurred at the same time, roughly. I just feel sure it's connected, I'm just not entirely sure what to!

fxp182 profile image
fxp182

It was a few months before I was diagnosed, it was bizarre, that being said once you get your levo to the right dosage which takes some time then you will begin to see the light at the end of the tunnel. I have not managed to lose any weight which is not good, but things could be worse. Good luck!

Chancery profile image
Chancery in reply to fxp182

Thanks! I'm not on medication at present. I was diagnosed as subclinical but my last blood tests were 'improved' so I reckon my doc will not want to give me medication. I'll see him in a fortnight and I'll find out how things stand then. Not well, I'm guessing.

It was ever thus......

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