I'm in shock. I've just been diagnosed with another auto-immune condition, just as my PMR seems under control.
I was diagnosed with PMR in April 2019, and with a few flares I'm now on 4.5mg prednisone.
Lichen sclerosus is an unpleasant condition, mostly post-menopausal women, no known cure, just topical steroids which 'may help with symptoms'.
My GP gave me no advice and little sympathy, other than the steroid cream and to come back in 3 months. And watch for any cancerous changes.
On Googling, I see that it can be linked to other auto-immune conditions. So, yet another diagnosis of something I'd never heard of. I'm a glass-half-full person, with many medical issues over the years, but I'm feeling so miserable.
Has anyone else had this, and are there any words of comfort?
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HelenDaisy
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Snap, we’ll sort of. My GP referred me for this but the dermatologist said they weren’t convinced because of certain areas that have been spared. I had 2 weeks on Trimovate (mild steroid, anti bac and anti fungal) which cleared it up in a jiffy. The moment I stopped it came back. I am now on a 6 week course to see if the scar tissue resolves and it behaves generally. It’s grim isn’t it? Blimmin painful.
I can concur with that. I was diagnosed with GCA in August 21 and final came off steroids completely in Jan this year. Now having investigations regarding symptoms which they believe may be another, as yet undiagnosed, autoimmune condition.
I am so very sorry you are dealing with yet another thing!!! My husband has lichen planus in his mouth and is pretty miserable with it. painful . treated with topical steroids ..it helps a bit comes and goes. I hope you find a treatment that will work wonders!!!!! NOT FAIR!!
I also have lichen plants so have to be careful I don’t eat sharpe food or too spicy as these trigger it. Maybe look at everything which may come in contact….🤔
Pred has kept my lichen planus nicely contained but goodness knows what it will do if I ever get off the pred. I am enjoying spicy foods more and more..............
Yep. I've got /had it. Sooooo itchy. After trying all the creams with no effect I went to surgery. I can't be doing with receptionist considering whether you deserve an appointment or not., so in a rather loud voice when she asked what was the matter....I've got a very itchy bum! 20 mins later I saw the nurse, quickly diagnosed and a prescription for dactacort. Cleared up in thev10 days I was told to use it. Couple of recurring episodes. The last time I'd run out of cream and it's only available on prescription. But. I found I could buy just the antifungal and the hydrocortisone over the counter....and mix my own. I had previously tried hydrocortisone on its own with no success. Nurse also prescribed Dermol wash on repeat. Said my skin was very dry and to use it in shower and as a body lotion.
May I ask what anti fungal and hydrocortisone you buy and mix for LS? I have to fight for a script each time even though the specialist said it’s incurable and recurring. It’s so painful.
With all this advance technology and talk of artificial intelligence in the news you’d think something would be developed that allowed drs to experience what we do, just for 5 minutes, so they could understand and prescribe sympathetically.
Was interested to read about other autoimmune conditions. I have had Lichen Planus several times and was told it was triggered by Quinine taken against Malaria in the 1970's. They took a biopsy from my torso skin. I have bad shin, feet and hand cramps but decided against Quinine and now it has been withdrawn apparently.
Then Granuloma Annulare in 1990's was diagnosed but the purple disseminated rash version. I was told it it was an autoimmune condition and was given some Ultra violet Light treatment which did not help. I have Mometasone Furoate 0.1% ointment, but since taking Pred the purple rashes are very reduced. I use it for crops of skin tags that come and go in the groins. They say I will have it for life.
It seems that several or many conditions are autoimmune related from what other members have flagged up here.
I recall that I was told around the age of 50 (80 now) that I had anti bodies and needed to take thyroxine for an under active thyroid. I wondered what antibodies were but was just told they were dangerous. Now I see that thyroid problems can cause neuropathy in the feet - but that is too late for me as the nerves are trashed for good according the the neurologist at UCL H.
I do hope all the people who have shared their stories here, manage their pains, with the help of caring GPs and specialists, more effectively. Kind thoughts to everyone.
Note my diagnosis is Stills Disease which for me manifests as RD, it starts with a blotchy salmon rash but over the 45 years since diagnosis I’ve slowly been growing brown grainy lumpy bumpy mole type things although some are flat and over a large area rather than raised. A few years ago one got infected and I was told NHS happy to prescribe cream ti treat but not willing to pay for removal. I went private to have a few awkward ones removed but they grew back. Some are now visible through thin dresses in colour and lumpyness. I loathe them. I feel like I’m turning into an alien. Dr not interested so I use the dermovate for LS on the worst ones and it holds them back. To my horror they have started under my hair line and on my face. I’m very anxious and depressed about them to be honest.
Thank you, I thought that was the case and dermovate is what gyne ordered for it. I do have to fight to get a repeat script though for some reason. Interestingly I’ve had “gyne” issues all my life and a very bad bout of cystitis the year before Stills arrived. During my 30s-50s I was constantly treated for supposed thrush/cystitis that never quite seemed to go away and it’s interesting that when in pred for Stills 17-25 I had no symptoms of thrush or cystitis so guess pred held it at bay.
I'm so sorry you have this to deal with. Life can be tough. I try and think of myself as a Warrior Woman. I've had breast cancer, 2 knee replacements, spinal decompression, shoulder surgeries, hyperparathyroid disease, PMR and now this. My exercise classes and recently my painting keep me sane.
Sometimes Lichen schlerosis just goes away on its own. I developed this about 4 years prior to having polymyalgia. It is most unpleasant. I had an annual check at the hospital plus the steroid creams. Once under control it was cope able with. Then I developed pmr and weirdly the Lichen Sclerosis seems to have gone away. I was checked last just before covid and they said there were no traces. I keep an eye on it but there has been no recurrence. I wondered if it was the pred that got rid of it or just my immune system bored with that part of my body transferring its attention to my muscles. All designed to keep us on our toes. 🤦♀️😅
Snap. Interesting isn’t it. I had it prior to pmr too, diagnosed by GP (never referred to hospital). Steroid cream fixed it but since being on pred I haven’t needed it. Disappeared completely. On 6.5 mg and still clear so far. 🤞🏻
I’m in shock now too . I just saw an intimate photo of it on line . What little hair is left on my head is still standing on end . 🥴 You have my sympathy.
I have had Lichen Planus for 36 years . It is similar too , but appears in different places . It attacked within hours of having a hysterectomy. Six weeks later I was seeing a Specialist about this problem in my mouth (like thrush). He said he had 1 question to ask me . What drugs did they give me post op . The only drug I had was a brand new anti inflammatory recently introduced in the country . I took it for one month. He raised his arms in the air , said , say no more . He went on to explain that in the very short time this drug was here , he had been flooded with patients with Lichen Planus . He went on to say that he would not back his statement up in public .! 😳 (back then I was young and silly). He advised me to never ever take another antinflamatory in my life . I havnt!!!
‘He’ told me to figure what foods upset my burning mouth condition. Sadly chocolate , honey and chilli are main culprits .
Don’t despair tho. A friend got it about a similar time . Her Dr gave her an asthma thing to spray in her mouth and problem was solved fairly quickly . She rarely gets a flare up . I constantly get a flare up even tho I am on pred.
Yes he should have . We didn’t have info at our finger tips like we do today . I knew it was wrong at the time, but I didn’t question things back then .
Yes I have LS and it’s controlled by Dermovate from Dr. Diagnosed by gyne clinic at hospital and I have to fight for the script every time I run out. Note my diagnosis is Stills Disease which for me manifests as RD. I have Dupuytrens Contracture, Interstitial Cystitis and skin covered in brown lumpy grainy moles which is probably connected. I believe these are all AI diseases or friends of. I have dry eyes snd constant sore throats so possibly all the same thing, GP is clueless and always out of office! I have noticed trigger foods the flares the LS by keeping a diary and spinach leaves are a culprit!
I really don't think food intolerances alone are consideration- its a whole person problem, like any auto immune. They do think an underactive thyroid may be to blame though...
It mainly affects women during and after the menopause, but it can even affect children (very rarely).
Like several others I developed LS several years before being diagnosed with PMR though I have always felt it is more complicated?
Dermatologist said “well controlled” with Dermovate which coincides with starting Pred. Also advised to use Vagifem twice weekly - improvement in dark smelly vaginal discharge - no diagnosis given.
Autoimmune collection - life long Raynaud’s, PMR. LS, Vitiligo, dry eye - deranged immune system ?? working on what to come up with next😅
I have had this condition, treated like you with steroid cream, when I was in my late sixties, it caused problems with the my love life!!! I got PMR shortly before my 70th which was 6 years ago and it seems to have gone, I always thought it was oral steroids that got rid of it.
I was diagnosed with Lichen Sclerosus about 1 1/2 years ago. I've had PMR since July 2021. Yes. It was upsetting at the time. The Clobetasol has made it go away, after some months, but I am told to use it once a week to keep the LS at bay. I do associate the LS with my auto-immune condition, PMR. I now get yearly check-ups for the LS at a Vulvar Clinic.
That’s interesting about the clinic check ups. I was just told it’s incurable and I had to live with it. It’s made intimacy painful and affects what clothes I wear too, jeans are a no no. It’s a miserable condition but I’m pleased you have good care.
I have chronic RD which is rare but some overlap with RA PMR hence I find this site useful. Stills is considered AI, I also have LS, IC and DC, I note lots of members have other AI conditions too, it’s ax if we attract them , Stills was diagnosed when I was 17 but the others all arrived in my 50s during menopause so I’m wondering what my 60s will deliver. Currently having ovarian cancer investigations but could be another AI condition I guess.
Yes, I've got it! I had several misdiagnoses, during which time it got much worse and lots of damage was done to my vulva. Awful thing to have! Eventually I got referred to the gynae clinic and saw a wonderful nurse there- she was my saviour! The only treatment is strong steroid cream - this worked very quickly for me. I also used homeopathy which helped a lot.In younger women they offer surgery, but as it loves scar tissue it often comes back.
It comes and goes. It was in remission when I got Pmr, but it came back when I cut down on the Pred. You are supposed to use a maintenance dose of the cream twice a week.
Do ask to be referred to the gynae clinic at the hospital as Gps don't have much of a clue about it I found.
Oh my God. You've been through hell. All starting at the young age of 52! I don't know what to say..... I just really hope you have healthier days SOON. xo
Yes, I have. My PCP told me it was recurring yeast infections for years. A routine dermatologist skin check uncovered it. I have to use clobetasol ointment on the area...a pain in the neck...and she checks regularly. There has been much improvement but still use it three times a week on a small area that is still red. Have had no symptoms since starting the ointment.I was alarmed at first. Now I rarely think about it. My dermatologist is pretty rigid about 3 month appointments to check it.
Wow, thank goodness you brought this up! I think I have it! But the mouth type. I have what looks like Lichen Plantus in my mouth! I felt a raised bumpy part just 2 days ago and it looks like what this is. I swear I would never have known where to start had you not brought this up and everyone's responses have really helped too. Thank you so much.
What type of doctor treats it? General Practitioner or a dermatologist?
I saw my GP on Friday and she diagnosed it immediately. I’m not sure if seeing a dermatologist or gynaecologist will make a difference as I seem to be on the correct medication. I’ve joined a Facebook group which has been useful. I hope you get yours sorted. Such a pain to have yet another AI condition. Good luck
I've had Lichen Sclerosis for several years before I got PMR and GCA. At that time I didn't realise it was an autoimmune condition. It's treated with Dermovate ointment. Reducing the frequency as it calms down. I was advised to use this once a week even when I had no symptoms, to guard against a flare up. However when I was on high doses of pred I didn't need it at all until I got below 8mg. It's painful if you get a flare, so keeping up the treatment is important, but once under control I don't think about it much, apart from remembering to use the cream each week.
Hello, I was diagnosed at Addenbrookes Hospital which was brand new then. I was bed ridden for 3 months and as ok my 17 was cared for by my Mum but I recall meds as , iron, aspirin, Indocid (now discontinued ), pain relief, steroids and some anti inflammatory stuff. I wore wrist splints for several years and was drug free by about 25. So I conclude it was one attack but the joint damage remains and I have daily fevers and sessions of malaise. Pain is ever present and I take codeine (and prunes 😀). I still use joint supports and gadgets to make life easier. The worst thing has been the debilitating constant sore throats which was the herald of Stills. LS is nasty and IC uncomfortable and the sling growths horrid horrid horrid. You’ll be sorry you asked now but thank you for your interest and I’m wishing you good days 😊
I was diagnosed with LS at 52. I'm now 64 and never notice it any more, except no sex life for 12 years! Dermovate applied as directed did the job and now I rarely use it (once or twice a year). NO soap, NO baths. Only showers and using Dermol to wash down below then apply another type of moisture cream whose name escapes me. I follow this regime, only showering once a week and get no trouble now.
However one bath will set me back - we are currently on holiday and no shower where we're staying, only a bath. I'm already getting sore.
Actually I’m sure there’s a HU page/section dedicated to skin issues like Sclerosis but not sure now how to find it . (Had dreadful headaches and anxiety recently so struggling to sleep making my memory fuzzy, sorry)
I just used the Search facility at the top right but it doesn't bring up a specific communitym just posts in various communities. It seems to be treated more as an add-on by most people - if you see what I mean.
Good morning, l have picked up you post a few days late. I have had L.S. it was diagnosed about four years ago and I was sent to gyny at our local hospital as an outpatient. They gave me dermovate steroid cream which is good. Vagifem pessary and cetromacrogol cream to wash in and use as a moisturizer several times a day. They said it's very important to keep moisturised. Also to not use anything with a scent in it, sprays etc. Also to wear loose cotton underwear. There's loads of YouTube videos available that seem very good. Hope this is of some help.
Thank you. This is all new to me but I’m learning fast: yet another condition I’d never heard of before! It seems these autoimmune disorders like to gather together.
I am so very very sorry. So unfair. My husband has Oral lichen planus in his mouth which is quite painful. Hope yours is not so painful. he is on topical cortison and we trying aloe vera and starting turmeric tablets. HOPE yours clears up quickly. I have heard that lowlight laser helps. who knows. always searching for the cures!! Who knew in 2019 we would still be here with our PMR PLUS!! (although I arrived here in 2017.) GOOD GOOD luck. big energy your way.
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