Does anyone else get intermittent blisters which always appear in the same places and leave scars? After being passed between dermatology & rheumatology (both saying they are not caused by an issue covered by their department) a biopsy has shown that they are caused by my autoimmune disorder - name unknown. I say name unknown as I don't tick all the boxes for either lupus or sjogren's syndrome ( Rheumatology say I am "enigma) I do take hydroxychloroquine 200mg once a day but I had these blisters before I started taking it.
The blisters only appear on my hands and start as a small red spot which feels like a pin is being dug in to it when touched. They then develop in to blisters/lesions which are very painful. Some times the pain is that bad that I can only relieve it by plunging my hands in to hot water as my brain then focuses on that pain and not the blisters. I am still able to use my hands when I have the blisters thankfully.
I would love to know that I am not the only person who gets them so I don't feel so alone in my "enigma " status.
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pattypatchwork
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I had similar blisters early on in my polymyalgia rheumatica. The primary site was on the point of a shoulder blade but there were others. It always started as an itch which became intense and then the area blistered with tiny blisters which quickly sloughed off. It took a long time to find an association - but it always appearing after a holiday in Italy where I ate pizza and pasta a few times compared to at home where I wasn't because I ate low carb led to the suspicion it was something to do with wheat and a delayed reaction. It isn't gluten - it never happens if I have eaten foods with gluten: oats, spelt, kamut and rye are fine as long as they are pure with no added wheat. I also reacted to Juvela products made with their gluten-free flour made of washed wheat starch. I tested diligently and got rid of it by not eating anything with normal commerical wheat products in it.
There was a brief thought on the basis of the way the rash developed it might be dermatitis herpetiformis, the skin version of coeliac disease and a biopsy was arranged, The dermy that day was a very dismissive and unpleasant person - "it isn't cancer so it isn't serious". She refused to do it unless I had eaten loads of gluten for 2 months before - never been mentioned to me before. I discussed it with the local coeliac specialist and he asked was it worth the agony - the only difference would be getting bread and stuff on prescription and I didn't eat bread anyway! The edible gluten-free stuff wasn't available on script anyway!
Over time, I now react less to wheat - I can eat small amounts if there is something that I consider worth itching for. I can eat French bakery products (in France at least) and apparently that is not unusual - they make the dough differently and the flour is also different. I can also eat Maltese sourdough bread in moderate quantities - given the opportunity! It is definitely aomething to experiment with. If it doesn't work - nothing lost.
Hi there,I get these all the time when the weather turns cold.
They sometimes develop into chilblains/blisters and become very sore.
I often have to wear a plaster on them to stop me from catching them. Mine reoccur in the same places on the same fingers and never on my thumbs, strangely.
I have the official diagnosis of APS and Raynaud's. However, I do believe there's more to it, as my fingers are often swollen when I wake in the morning.
I am currently looked after by a haematologist, who focuses largely on anticoagulation; however, it would be nice to get a more detailed explanation for this.
I hope you get to the bottom of it - please let me know.
You're not alone patty 🤗I feel your pain as I too get something similar to what u describe!! I was diagnosed with subacute cutaneous lupus (SCLE) in 2017 and at that time my hands n feet were in a terrible state with chronic ulceration. The lesions with me however r usually on the palm of my hands n soles of my feet.
I get a burning feeling beforehand n my skin becomes very red n inflamed..n yes hot hot hot!!
I can't really say that they blister as such but the skin swells n then splits n I do get them on all of my fingers..in the cracks on the underside n down the sides of my fingers!! Cor this is really hard to explain in words!! 🙆It's probably best if u ask me questions tbh 😹
I was diagnosed eventually by dermatology via blood test n I'm on pretty heavy treatment which is helping although I have three lesions on my hands currently (on different fingers)
I am also prescribed Dermol 500 lotion which cools n soothes the itch n can be used as a soap substitute. Steroid ointment too..I'm using Dermovate. I also have some steroid tape that I use on my fingers..it's like a plaster that u wrap around n keep on overnight..removing it after twelve hours.
I take Piriton too when I'm itching..it works for me coz the worst thing u can do is scratch!!
There's a good website called DermnetNZ..it has loads of different skin problems with pictures so that u can see if u can find anything similar. I looked n realised that my SCLE rashes r typical of the condition..so unlike u..I'm not an enigma!! 😹
Ouch warrior that looks extremely sore . Like patty patchwork I get the same as her on two fingers and sometimes they don’t quite blister just get real sore under skin and same on palms. You really suffer I can see 🙏💪 Read about your wait for vehicle 🙈😡 hope they can catch up and bring forward 🙏🙏😘🤗xx
Oh KK! Crikey that's mega painful looking. Poor you. I hope you don't mind me saying as I am SURE you are up on all this... so.... anyway... Please don't use ANY perfume stuff in anything ie only use things such as Boots washing liquid for clothes for Sensitive Skin - it saved me! And make sure your washing machine is clean of all residue, and pull the draw out and clean it, put the whole thing on high temp wash with a natural cleaner in it. Also make sure your last rinse of clothes is suds free... if not put an extra rinse on the cycle and add water to the top of the washing machine draw to make sure you can see the water is clear of all detergent. I my whole bod went crazy when I bought a new washing machine and I didn't realise they just don't rinse properly any more so we are all walking around with detergent on us - in our sheets, on our towels and everything we wear. It probably isn't that but just in case thought I'd mention. Also.......... I take it you don't eat sugar and things with additives... or tons of salt? It really made a difference to me not to eat anything like that. Hard to keep to but the alternative reaction is a no brainer for me. Also IU drink about 4-5 litres of water a day apparently as due to my sjogrens (re diagnosed!) I'm so thirsty all the time... and this will help your skin too even if you only have say 2.5litres of water a day. I use Eucerin products that have urea (wee?) in and they are also life savers... and of course have no perfume! The Eucerin 10% Urea Intensive body lotion is the best for me! They do hand stuff to but I just get the Eucerin lotion on prescription now as it's about £14.50 a bottle. I use it twice a day or if have washed my hands. Poor KK - I'm just gobsmacked to see your hands like that. I had an ex colleague who had the same but I could never dare ask her what her diagnosis was. And another one also who clearly has sjogrens as her eyes are v poorly - she says it's all the nasty cleaning products the cleaners used on the tables and keyboards etc.. but I think it's more than that.. she just has her head in the sand a little, which I can understand too as that's how I used to be! Anyway, hope you don't mind me saying all that and truly hope it's not like that all the time... Big love xx
Aww bless ya D 🤗 thank u for your concern 🤗I have to say that I read your posts n have got many many tips from u..so thank u 🙏
After I read what you'd said about washing machines I do make sure that extra rinse cycle is always on n I do use extra sensitive washing tabs.
Eucerin I've wanted to try but it is expensive n I get Dermol on prescription so I tend to use that.
As for soap n perfumes..omg that's a definite no-no..thankfully I'm an eau natural woman so I don't bother with deodorants, make up, perfume etc!! 😯 I do seem to have developed a weird water allergy so I can't shower anymore I just wash with the Dermol!! 🤷
I have a reasonably healthy diet n I don't have processed foods..no salt in cooking..I don't snack although I do like a finger of twix as a treat!! Just the one finger mind..I save the other one for the next time!! 😉😹
Water now that's probably where I fall down thinking about it so will concentrate on hydration n up my water intake..thank u 🤗
The turning point for me was starting methotrexate in 2019 n my hands have improved significantly n r more manageable.
Sjogrens..I too have just been diagnosed with sicca symptoms based on bloods n shirmer test? Don't even know if I've spelt that right?!? I've got dryness..eyes n mouth so I'm definitely gonna go glugging water..off gassed of course!! 😉
hi, the 2 departments were blaming each other which didn't help as you can imagine. Dermatology were adamant it was the autoimmune disorder but Rheumatology kept batting back to them so Dermatology requested the biopsy. I think they were chuffed to be proven right!
Oh heck..there's nothing quite like being in a Lupie in the middle situation 🤦I've got a similar thing going on as rheumatology have just got involved in my care too!! I have to say I was reluctant but I had no choice..dermy referred without my knowledge!! 😤
While these two consultants r scratching their heads n passing the buck I think I would remind one of them if not both that I'm looking for some treatment n pronto if u please!! 🌈😽😽Xx
Fun for them maybe n let's face it we're just a patient!! 😤One of many!! 🤦I'm hoping that u have a symptom diary n you've got pics of these blisters.
I'm not sure what internal meds you're on but I think it's time if you're up to it to find some kinda coordination with your care. This is why we have to become peaceful warriors..battling for the right treatment..after all it is our quality of life that's impacted..not theirs!! 🌈😽😽Xx
Thank you for your reply. I’ve just read about it briefly on the NHS website. I have autoimmune diseases and associated from diseaseSo it’s possible I may have suffered from it. I am now on long term steroids and immunosuppressant which apparently are the recommended treatment. I haven’t had any problems 2 years,in this area.Thanks again for the information,
Forever scars? Mine tend to go (as far as I can tell as my hands are in a right state generally) after 6mths. Well, I'd take as many pics as you can and send them to your rheumy's or whoever pre review. It's presumably part of your holistic condition. What did your Complement 3 and 4 bloods show? And neutrophils? and all the immunological tests? Anti ro/la etc? So you are Undifferentiated Connective Tissue Disease then? Jeez, they need to give you more than being "an enigma". Not very helpful eh? Sorry Patty... I'd do a bit more rummaging around on the internet to see if you can find similar images (which I did and realised it was lupus - compared to what I found... or deffo vasculitis which my rheumy said too when he first met me). Think you should push them for more investigation. Do you have all the other symptoms ie mega bone, muscle, tendons pain? Exhaustion, headaches, gastro issues - the list goes on obviously.. I'm sure you have but I'd put it all together and ask for another go round of what it could be... Good luck Patty x
Yes but sadly I cannot help as I also have no diagnosis.🙏 also been told am enigma which is uncomfortable given many symptoms for so long , no answers and no treatment.Hope you can find answers.
Please look into Urticarial Vasculitis. UV or HUV usually happens in lower region of the body and hands at the beginning . If your doctors keep pushing it to other dept, perhaps best to get a new referral to another hospital. Hope you find the cause.
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Dismissed by Rheumatology department yet again, Erythromelalgia - lupus? hydroxchloroquine
Neurologist appointment 2nd September, but not sure what I’m meant to be saying. Been far too bogged down with rheumatologists 😐
Raynauds/ blisters 
Losing my Mind with this pain and not knowing what to do...feeling isolated in this world!
New Consultant advice please! 
