Well, after being well for a good period of time it all came to a grinding and painful halt.
I have what seems to be Chilblain Lupus. Has anyone else had this or similar? I've attached pictures below to show what it looks like. My apologies in advance as it all looks absolutely horrible 😔
I've never had this before on the hands and it came on all of a sudden 2 weeks following an Iliaprost infusion to treat Raynauds on my feet.
Right now, I can't walk, I can't grip anything, open jars, at times door handles - the list can go on. It's excruciating pain even if something just rubs against the hands or feet.
I was off work for 2 weeks, and my Xmas and New Year was a washout as I've not been able to do anything.
I've tried absolutely everything - warming my feet, steroid creams, Prednisolone, warmth, but nothing seems to work. If anyone else has experienced this, I would very much like to know what your treatment was please.
Thank you
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SurferGuy
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Hi again - personally I would ask your medical team to take a skin biopsy - that is the only way they can find out what is actually going on - whether it be an infection or defective immune system etc.
Hi, I too have chilblain lupus and was finally diagnosed with it late last year. I was referred to dermatology by my rheumatology consultant and have been prescribed tacrolimus ointment which really helps with the blisters. Steroid injections are another thing which can help.I currently have a flare up which I think is due to my hydroxychloroquine dosage being reduced because I have lost 2 stone but I am going to ask if I can increase it again.
My blisters are always in the same place so my hands are now scarred.
I saw a dermatologist in November who had no idea what this was. He was going to arrange an urgent combined appointment with my rheumatologist but even after chasing this several times, I've not heard anything.
TBH even now I only think this is chilblains Lupus going by pictures I've seen. And like you, the blisters and peeling skin is always in the same places.
I have a nephrology appointment in February and am going to ask for a rituximab or benilumab dose. I had this a good few years ago via infusion for my joint pains (I was on the trial) and it worked a treat. Hopefully will work.for this new thing.
Does anyone know if Benilumab is still admistered via infusion?
My sister has it. The doctors prescribed her viagra... and it WORKS! She always had issues with the blisters and the skin turning blue and then gangrene set in. They had to amputate the tips of her fingers. Once they got her on Viagra the blood flow was better. Her toes were doing the same thing as yours but the viagra stopped it. I hate that you are going through this. Ask your doctor. Praying this works for you if its an option.
Yes they do - so much is ignored on the medical front of the wide ranging symptoms that thyroid deficiency can cause - I know - I seem to have had all of them attacking the whole body - it would be good to get your thyroid function tested and if at the bottom of the range when they tell you everything is fine - it probably isn't - I went 15 years with sub clinical hypothyroidism and had terrible skin problems and a lot more. I will send you something.
Thank you. I have a rhumy appointment next month so will ask for the the thyroid test. The team are brilliant so will definitely be on the case to suss out what on earth is happening.
Hi there glad you have a good team supporting you - it must be horrible for you - by the way just been looking at some research and it would appear there are instances of a secondary bacterial infection within the skin - so might be worth seeing if there is a secondary going on which you obviously want to stamp on. Avoid Ciprofloxacin thought if you can as that can cause further thyroid issues and tendon problems and you don't want any more issues.
If you look up on internet thyroid disease and skin issues you will get an idea of what a slow circulatory system does to the skin. Good luck and keep us posted.
Yes, I’m on highest dose long term daily sildenafil aka Viagra (+ low dose losartan) for my Chilblain Lupus Erythematosus (CLE) too. & i also have Systemic Lupus (SLE) . So, I’m on combined immunosuppression meds for my SLE, which also help manage my CLE. But I am also prescribed a lot of specialist topical treatments to manage my CLE.
My CLE is relatively stable, but only if I am very conscientious about all these treatments & oral meds. I’m 70 and my lupus was infant onset, & consultants think it probably started with CLE and gradually segued into simultaneous SLE as the years passed. Due to going without adequate oral meds until relatively recently, the soft tissues throughout my hands & feet are so severely injured by the CLE that I am officially diagnosed with severe Raynaud’s ischemia reperfusion injury. I’d been on meds for my very early onset Raynaud’s, but these weren’t powerful enough to damp down my CLE enough to prevent this severe injury developing.
Did either of you know that CLE can be genetic/familial - which is called Familial Chilblain Lupus, but the NHS isn’t testing me for the gene. Am wondering if your sister, Lupusfighter, or you, SurferGuy are having genetic testing. Am also wondering which type of consultant diagnosed your CLE…because it’s considered one of the rarest types of lupus, and even top rheumatologists seem unaware it exists. I was diagnosed by my dermatologist, with help from neurophysiology, and my rheumatologist is in charge of my oral meds for CLE: she has me with her clinic’s scleroderma specialist nurse because on the nhs the sort of high dose sildenafil protocol is seldom prescribed to patients without scleroderma, while my Dermatologist & GP Surgery Wounds Nurse prescribe all the topical meds
Am sad you’re having a very rough time, SurferGuy, & I hope your consultants help you find treatment that helps.
Am glad your sister is getting the care she needs, Lupusfighter!
Hi Barnclown thank you for such an informative reply.
I've not officially been diagnosed with this. It's just a possibility I have this. So far all that have sense it (rhumetologist, Dermatologist, nephrologist, GPS) are all confused as to what this is.
My Lupus is well under control and has been for quite some time. I was even surfing in the cold Welsh waters in September.
This all kicked in after my Ilaprost infusion and I'm pretty certain it's linked to a side effect of the infusion. Even the predisilone, steroid creams and increase in Mycophenolate hasn't helped.
I'm not aware of anyone in my family having Lupus or chilblains Lupus. So really strange I have all this stuff.
I'm at a total loss.as to what this is and how to resolve it.
Very very very worried as its effecting my home and work life, and is worrying my family. My kids are scared but I can see they're trying to not show it.
Yes: this is an appalling version of lupus. Hugely feeling for you & your family. Your kids sound really great. All my life I’ve struggle not to be worried about the horrible stuff CLE does to me…it upsets my family too.
Thank goodness for this wonderful forum. When my CLE was first diagnosed, I was the only one with CLE for quite awhile before phirestar & eventually pattypatchwork arrived & posted about their CLE diagnosis, which helped me feel less alone. & am very grateful to you for posting. But I wish none of us have to live with this. Each of us seem to have very individual versions of CLE…which is pretty typical of lupus generally, yes? So no wonder our docs struggle to get us on treatments that really help
Although the meds I take do help make my CLE more manageable, this is what I call micromanaging = I resent it…i do have to limit all my activities & wear special gear & spend quite a lot of time every day fussing over the topical treatments for this…& the horrible symptoms still flare depending on who knows what: seems to me this CLE thing is a lot more unpredictable than my SLE. I’m on myco & pred & hydroxy, but recently had to pause myco for a few weeks, which didn’t seem to make my CLE worse, so, although the official literature on CLE says systemic lupus meds can help, I wonder….
Hope you’ll keep us posted…wishing you every best wish 🤝✊✌️🍀
Absolutely spot on about the forum. A great place filled with lovely supportive friends. I've been here many times when I was first diagnosed and the support and information given as always was much needed.
Do you only get the chilblains in the cold? Or all year round?
I get this CLE stuff year round…am told this is because 70 years of my Raynaud’s segueing into so severe has done such damage to my blood vessels & nerves that basically my CLE reacts as badly to warmer as it does to cooler temps 🤷🏼♀️
PS maybe this topical OTC cream could be useful to you…it’s been helping me a lot since I tried it in desperation…reason I gave it a go, was that I get what seem to be secondary infection-like stuff going on in the inflammed CLE skin & lesions/papules…and this extra strong version of this famous much-loved gunk (you have kids, so probably know it well) takes enough of the edge of those harsh symptoms to mean I make sure my supply never runs out (I do not have shares 😉)
😆👍…I just saw poshthinkings reply above is also referring to possibility of infection co-existing…which is why I suspect the antibacterial in this topical helps me (I’m highly predisposed to infections of any kind anyway .- absolutely anywhere, due to a bone marrow illness, so immununology has had me on long term daily oral antibiotics for ages…just occurs to me now: maybe this is helping control any secondary infections my CLE may be gifting me)
I've been using Aveeno so far to try and ease the dry.and peeling skin. Alas not doing a good job at all. Nor did the steroid cream work. That's why th Dr's are baffled.
Going by my pictures, would you say the fingers and feet resemble what you have?
Do you use heat such as hot water bottles to ease the pain?
Re Aveeno…too bad it’s not helping…but, hey, best to try stuff & Aveeno helps my husband with his Crohns-related inflammatory skin horrors…he has several diff types of Aveeno for diff areas of his bod! I’ve tried them all: no use to me. We need stronger stuff
Re: do your photos resemble my version of this, yes they do, especially when mine is at its worst, sorry to say, my feet especially remain a 24/7/12 menace
Re hot water bottles (HWBs) & other self help: my version of Raynauds is now so severe that my Raynauds rubor (red, burning) phase has gone bonkers & won the competition for dominance over the ischemic (white, cold) & the cyanotic (blue) phases. So, after a life time of pain due to feeling frozen, trying to responsibly use HWBs etc, I am now Raynauds ischemic frozen all the time but actually happy with that, because the simultaneous diabolical Raynauds burning rubor redness hurts even more than the feeling mega cold does …so I rely on cool gel pads to stay sane. If I let a HWB near my feet of hands all my CLE symptoms flare even worse due to the rubor burning swelling inflammation taking off
It’s crazy to actually want to stay as frozen as poss because all the time I’m on fire! But the other day that Dr Michael Mosley was on radio going on about the wonderful analgesic properties of cold & boy was I agreeing!
Managing this constant conflict over which hurts most (my ischemia freezing of my rubor burning) without making my condition even worse is a fine balance, but i keep taking photos to make sure my rheumatologist & dermatologist know what’s happening in response to my self help tricks & they have okayed everything I do to survive this
I’ll never forget the concern + compassion in my rheumatologist’s voice during a pandemic tele review appt: I’d sent her photos of my feet which were really bad at the time…she said: the pain must be extraordinary! I’d NEVER in all my decades had a medic acknowledge the significance of any of my pain syndromes that way. I’m a real toughie, but she made me gulp & shed an involunary tear, no kidding 😆. After years working together, I was already devoted to her, but that made me actually love her!
Hi Lupus fighter thank you. I'm so sorry to hear what your sister went through. I was told about the serious complications when I first had this on my toes.
I too am on Sildanefil (viagra) but it doesn't work too well for me. I have also been on nilepladine which is a drug for the heart I believe but that gave me sever headaches so had to stop it. The Sildanefil followed.
Hi Loopyru, thank you. Yup, I'm on Sildanefil 25mg 3 times a day. Alas it's not working. And on top of that, I get the associated headaches that come with it.
hi there- apologies for jumping in the conversation- i initially was given sildanefil for ulcerating Raynaud's and i couldn't hack the headaches and didn't find it worked well enough so they switched me over to tadalafil which worked wonderfully for my ulcers and circulation in my feet/hands. a bonus, no headaches after the first week, and you only have to take it once a day.
i think it works better for me as it is longer acting. maybe something to consider?
hi. I to have been suffering with chilblains on my feet. To those who have never suffered they are truly painful. I saw my pharmacist about mine and they recommended a cream called Hirudoid cream. It seemed to calm them down. Good luck and you have my heartfelt sympathy. Xx
Hi 2ndgenluppy thank you for the tip on the cream. I'm going to the chemist later so will ask them.for this.
I've been on leave for the festive break and normally would've been out and about, but because of the pain have been unable to walk at a ll so been house bound and depressed.
Thanks for this. I know I posted about chilblains Lupus, but am also thinking long and hard about that infusion. It's all such a painful mystery right now 😂
Oh my that looks so painful SG 😖It makes me shudder as it brings back painful memories for me too. I don't have chilblain lupus but I do get severe ulceration on my hands and the soles of my feet rather than toes.You've already had lots of good replies and tips. I had ulceration on all ten of my fingers early on before I was properly medicated and my dermy at the time told me to wear vinyl gloves at night and wrap my feet in cling film after applying Dermovate ointment to the sore bits. The gloves worked a treat although I tried the cling film on my feet I didn't continue with that coz it made it impossible to walk (too slippery).
I was just thinking that might help to protect your fingers and enable your creams to stay on for longer. I still use the glove method when my ulcers need it and I cut off the fingers of the glove that don't need special treatment so my hands don't sweat too much.
Thanks Krazykat. I was advised to apply the creams recommended and then wear cotton gloves. Works at night but impossible.in the day due to the need to type.fot hours on end.
Right now I'm trying everything and anything. My latest is to put my feet on a hot water bottle and position my feet where all the blisters and sores are. Just started this so will.see how it goes.
Yes I used cotton gloves to start with but the vinyl works better. If you wanted to wear them during the day as well you can cut the end of the fingertips off. I just did the treatment at night though. Hands are so hard to manage..Ive got two ulcers at the moment on my fingers n that's enough!! 😖Hot water bottle is good idea and if it's helping them/reliving the pain a bit..carry on I say 🌈xx
Synchronicity: thinking a lot about you too lately…maybe cause been having your sort of wild ride since that emergency major abdo surgery in Sept…a few weeks later managed to fracture my foot…& recently put on cancer 2wk fast/track due to mass in lower oesophagus (having gastroscopy on Monday)…but should be ok now, cause don’t bad things only come in 3s?😯😉…hope you’re not flooded & that things are cosy & calm at your end, all set up for a happy 2024💞🌈🍀🕊️
This is why I've been thinking of you..kinda been a bit afraid to ask 😹 Its good that your being on the cancer pathway coz at least that way we get seen quicker. I recently had one for a lesion in my mouth but all clear for me. Hope your gastroscopy goes well on Monday Coco 🧜🤡 💜🌈xx
It's so good to see you back! I've been wondering and hesitating to contact you, as well. It sounds as if you've had a really hard time recently, yet as usual, you take the time to respond sympathetically and fully to fellow sufferers on here. (Apologies for jumping in on your thread, SurferGuy and sending my deepest sympathies about what you are going through.)
Goodness me 🥺. I've never heard of chilblain lupus. It sounds incredibly painful and difficult to manage. I just have chilblains with my Raynaud's and am keeping my fingers crossed that I don't stub the most prominent and vulnerable affected toes. If the skin is broken, they take weeks and weeks to heal. They are much worse when my feet are hot, red and swollen. I presume this is still Erythromelalgia, as it affects my whole foot and half my lower leg, bilaterally. I agree with you on trying to keep my feet just on the cold side of cool, because the pain is bearable then and the feet aren't too swollen. The extremely sluggish capillary refill and the purplish discolouration is somewhat alarming, though.
I have a tele appointment booked for this week, with the pain consultant, about the EM. It may be to ask if I still want to have the Lidocaine infusion. I was put on the waiting list about 18 months ago...I will ask if he would prescribe Oramorph, even if only for use at night. Nortriptyline 30mg at night, Paracetamol (1g at night), codeine phosphate (60 mg at night) and Pregabalin totalling 450mg over 24 hours, don't seem to ameliorate the pain at all. I couldn't tolerate Sildenafil.
Skylark no need to apologise 🙂 I'm hoping my thread also helps others who are suffering with this too and provides them with all then useful information you all have given 😊
Hello dear skylark! You’re never far from my mind! It’s good to have your update.
Thanks SurferGuy for your understanding. After many years here on forum almost daily, am too old & frail now for active participation here so only get involved when someone like you posts about CLE, because this is now the rarest of my rare illnesses and I need to be here receiving & sharing every bit of info possible + offering up any support possible
Oh skylark, am very sad 🤦🏼♀️ at thought of you still waiting 18 months on for this lidocaine infusion, & hope you’ll let me know how this works out. I’m still on the waiting list for that cluneal nerve procedure with my Spine Team Pain Clinic, ordered last March… so not quite 12 months waiting yet🤷🏼♀️
Will add a link to solid official info on CLE, in case can help: it’s entirely possible CLE & FCL are simply under diagnosed due to clinicians remaining unaware they even exist. My feeling is that the combination of research into COVID TOE & rare genetic illnesses (FCL) has led to an increased degree of awareness amongst clinicians involved in these areas, like my Dermatologust & rheumatologist, hence my diagnosis with CLE
Thank you, dear Coco for the links: I'll check them out tomorrow. Today, I'm meeting 2 old friends from school, for our annual catch up. It's getting more difficult to avoid swapping medical problems, as we age! I hope your gastroscopy went ok. 🤗🤗🤗
cotton gloves…also silicone finger & toe stalks & heel cuffs! On my feet, my GP wounds nurse’s Medi derma S barrier cream & orahesive wound powder are life savers, both available OTC from Amazon
Re HWBs: by now you’ve probably seen my long detailed riff in that last reply above re HWBs & other self help tricks
No prob: cutting & paste that reply in here now..it’s long, I’m afraid…but I have so many many years experiencing this, trying stuff desperately looking for someth8ng that can possibly help even a bit:
Re Aveeno…too bad it’s not helping…but, hey, best to try stuff & Aveeno helps my husband with his Crohns-related inflammatory skin horrors…he has several diff types of Aveeno for diff areas of his bod! I’ve tried them all: no use to me. We need stronger stuff
Re: do your photos resemble my version of this, yes they do, especially when mine is at its worst, sorry to say, my feet especially remain a 24/7/12 menace
Re hot water bottles (HWBs) & other self help: my version of Raynauds is now so severe that my Raynauds rubor (red, burning) phase has gone bonkers & won the competition for dominance over the ischemic (white, cold) & the cyanotic (blue) phases. So, after a life time of pain due to feeling frozen, trying to responsibly use HWBs etc, I am now Raynauds ischemic frozen all the time but actually happy with that, because the simultaneous diabolical Raynauds burning rubor redness hurts even more than the feeling mega cold does …so I rely on cool gel pads to stay sane. If I let a HWB near my feet of hands all my CLE symptoms flare even worse due to the rubor burning swelling inflammation taking off
It’s crazy to actually want to stay as frozen as poss because all the time I’m on fire! But the other day that Dr Michael Mosley was on radio going on about the wonderful analgesic properties of cold & boy was I agreeing!
Managing this constant conflict over which hurts most (my ischemia freezing of my rubor burning) without making my condition even worse is a fine balance, but i keep taking photos to make sure my rheumatologist & dermatologist know what’s happening in response to my self help tricks & they have okayed everything I do to survive this
I’ll never forget the concern + compassion in my rheumatologist’s voice during a pandemic tele review appt: I’d sent her photos of my feet which were really bad at the time…she said: the pain must be extraordinary! I’d NEVER in all my decades had a medic acknowledge the significance of any of my pain syndromes that way. I’m a real toughie, but she made me gulp & shed an involunary tear, no kidding 😆. After years working together, I was already devoted to her, but that made me actually love her!
My goodness you've been through it... as has your husband 😟
I know exactly what you mean about the burning pain and the cold pain - and much rather having the cold pain! I explained to all the Dr's I've seen so far that my pains subsided when I put my hands under cold water, to which they said made no sense whatsoever.
I woke up this morning in absolute pain. Fingers were swollen and skinhead cracked and peeled all over. Oddly my little fingers are fine. And thumbs not too bad. It's just the fingers in between that are affected! Like you, I've been taking photos to show at appointments.
I somehow managed to get an emergency dermy appointment for the end of January. I can't wait. And I'm going to beg and plead for a Benilumab infusion. I urgently need this sorted for my sanity and to ease my wife's worries. She doesn't show it, but I know she's going outta her mind with worry 😟
Your poor wife…our other halves do suffer with us: and we wouldn’t wish that on anyone..it’s all very very hard
I sense, though, that this great discussion you got going here is helping all of us…as much as it’s helping you to stay ready to do everything more that’s poss to improve things
So am very grateful to you & everyone who has joined in…& I know for sure that your post will help many others as time goes by…there’s something redeeming in this, no? 💞
Barnclown and everyone else in this discussion, I can't even begin to tell you just how much this discussion (and all the others I've read since I joined) have helped me - and no doubt so many others. Not just for information, but also for the moral support given. 😊
So sorry to see what you have been going through. I used to have awful blistery chilblain related urticaria rashes all over. They are gone, controlled now with hydroxychloroquine and weekly Belimumab infusion (pen). I used to have a monthly Belimumab infusion which took half a day at the hospital. It didn't do that much for me then as I found the first week of infusion too tiring (my body didn't take to premed, especially steroids) and I couldn't function. Life got so much better when my doctor prescribed weekly dosage at home. I do it myself every week. Just a quick stab around my stomach region. A bit limiting for my movement as I cannot go away for more than 6 days. But I am not complaining. Rituximab was a disaster for me. I can never have it. However, Hydroxy does have bad side effects for me. Less energy, brain fog, sleep trouble, tinnitus...list goes on. Lesser of two evils.
Hope your doctor sorts it out for you in Feb. but meanwhile, it is important that you don't get too stressed out...I know it is almost impossible not to get stressed out in pain. But stress makes it so much worse. Find a way to distract yourself from the pain... All good wishes!
I must say, the Benilumab process was incredibly draining. I was in for 4 days and completely drainee at the end of each day. But the positive effect was immediate. I was like my old madly energetic self after it.
self injecting sounds great. But do the pens need to be refrigerated? If so, that would be a problem on several fronts - mainly my kids don't.know I have this horrible disease and I want to keep it that way - hopefully forever. If they see the pens, it's game over! (Although my eldest is a smart cookie and no doubt probably suspects summat ain't right with me).
Yes, they need to be refrigerated which is why I limit my travel to five, six nights at the most when I need to go away. But I don't go away often as I don't sleep well at all in different environment. It is none of my business but may I mention that your perseverance and strength to maintain yourself despite the constant pain you must have could and would be a source of great inspiration for your mature child. Life is never easy and it is not helpful to grow up thinking there is no hardship. Your condition is part of your reality and life and your children are in your life. If your doctor does offer you home therapy which could possibly make a huge difference to your daily activity and condition, why wouldn't you take that? Isn't it better for your children to live with you in better health with more energy and less pain? If you can have more light in your room, why choose to keep the room dark? I do hope you will reconsider. How you have managed to shield your condition from them so far is quite something. It could have a very positive effect for your children when they face difficulties in the future and also they will learn to have empathy and sympathy for others. They will remember how brave you have been. I do completely understand your desire to protect them from anything difficult. But please give it another thought.
Hope you get better soon!
ps My condition was completely triggered by damp, cold weather. In summer I was so much better and It still remains that way.
Thank you for such a lovely and positive reply. I fully appreciate what you said and have been thinking the same thing - that by taking the kids they will grow to be stronger and feel positive and confident to deal with anything that may come their way.
Unfortunately, my youngest has ADHD and is incredibly sensitive and doesn't deal very well with anything that is sad or negative. She also can't deal with the suffering of anyone. Even in films or tv programmes. If she knew about me, she would be devastated and in turn this would worsen her mental state.
I must admit, it's such a difficult situation to handle. I've considered many a time and discussed this with my wife. She wants me to tell them but understands it's a risky move due to the youngest's situation.
If things get worse to the point I can no longer mask it, I've agreed I will tell all.
Hello, Surfer Guy. I have great sympathy for you as I have suffered with chilblains all my life (I’m 72) and only a few years ago a dermatologist confirmed they were related to my SCLE! I’d tried every remedy going and nothing worked but now I find they are eased greatly with dermovate ointment. With me it’s more my feet that are affected but I have had chilblains on my hands and even my ears! Although they have never been as bad as yours. When my skin is very tender I use dermol as a shower gel and moisturiser.
Hi SurferGuy, yes this is super common. I had what appeared to be chillblains, originally treated with Adalat, but they stopped responding to that after a few years. The sores are severly itchy (enough to reduce me to tears) and then they burn like hell. I’ve been so bad I can’t stand on my feet. I too tried all the creams, warm socks, warm wet dressings etc. to no avail.
I saw a dermatologist who took a biopsy of a fresh sore and diagnosed me with vasculitis. So I recommend getting that done, if you haven’t already. I take hydroxy 400mg which has taken care of 90% of the sores, and for the breakthrough ones, I use a haemorrhoid cream called Anusol. I have to apply it several times, but it’s the only thing that stops the mind-bending itching and burning. All the best to you!
I did mention vasculitis to my rhumy. He said that chilblains Lupus and vasculitis are almost similar as its the capillaries that are affected due to the same reason. But when I see my nephrologist (they are the ones who actually get things done) I will ask for a biopsy.
I’ve been told this too…& before my CLE was diagnosed, I’d already been diagnosed with small vessel vasculitis for years. My Dermatologist also thinks our symptoms have stuff in common with what she sees in her “ COVID TOES” patients
I haven’t heard of covid fingers, my understanding is it’s a toes-only phenomenon…but to answer your other question, I think the only way to test for covid toes is to do a standard covid test. If it’s negative, it’s not caused by covid! Best of luck 🤞👍
Yes, they are similar. I forgot to mention I also have antiphospholipid antibodies, which means my blood is overly prone to clotting. So that was a factor my doc took into account. Good plan re: nephrologist; glad you have a helpful and proactive doctor looking after you!
I've just got back from visiting my cousin who's had a baby. Gutted I wasn't able to pick her up (my niece not my cuz), but her smiley face cheered me up ☺️
Anyways, I was telling her about my hands and she told me she had something just like this a few years back - rashes, blisters, sores etc and on a more severe level to mine. The doc prescribed her Dermovate ointment which cleared it up for her within a couple of weeks.
Now I'm quite certain she and I don't have the same thing, but I might give the Dermovate another try tonight. I have a feeling when I used it it made things worse, but am now thinking it might have been getting worse anyway regardless of whether I used it or not! And I'm desperate right now so what do I have to lose!!!
Good plan! Am on dermovate long term for another condition & did try that at first on my CLE without success, but a while later when I was doing ok on sildenafil we decided to try dermovate agsin & it did help - especially in my finger lesions/papules. Good luck
Thanks Pattypatchwork. All the Dr's I've seen think im mad when I tell them it doesn't work for me. In fact I think it makes the skin worse as it goes tender, red and sensitive.
It does the same to me and I also get strange looks when I tell them it doesn't work for me. My specialist as admitted that he is learning more about lupus and its variants as we go along. he refers to me as his resilient anigma!
Guys, can I ask for recommendations for suitable super warm gloves and socks please?
I spent a fortune on some silver lined socks and gloves and found them to be absolutely useless. My M&S bought socks are better than the extortionate silver lined ones.
personally I find leather gloves the best for me as I have tiny hands and the leather is snug . Most supermarkets sell the hand warmers 99p packet but I haven’t tried them x
Alas, leathers no good for me as I'm one of those hemp wearing, vegetable eating, tree hugging types 🤣 My kids did buy me the hand and feet warmers from Tesco but they didn't work for me. Probably because it's my fingers that need warming and not the palms.
I read your post ,and subsequent 90 replies with great interest .I am 85 years old , and have had lupus for almost 60 years ,but not diagnosed for 30 years ,despite being very unwell during that time ,but it was the dismissive ,uncaring attitudes of much of the medical world (so often discussed here )that delayed the diagnosis . The onset of my symptoms started after the birth of my 3rd child ,who was born with a heart block , this in itself should have indicated lupus . Last winter I had very bad chilblains for around 6 months, they ulcerated e ,bled and became infected ,to the point where I became housebound . At one point my gp sent photos of my toes to an online dermatologist ,who made a "probable " diagnosis of Chilblain Lupus ,and suggested my gp made an appointment to see a dermatologist .The appointment came through ,10 months later , I turned up and was told they were not the right people to advise on this condition , I see that many people who replied actually WERE treated by dermatologists ,so I am more confused than ever . I had seen my rheumatologist during this period of 10 months waiting , and his opinion was that I would get answers from the dermatologist ,which of course I didn't. So meanwhile my feet are incredibly sore again ,and time passes ,and at 85 ,realistically ,time is not on my side !!.Does anyone know of a consultant,of any species ,with a knowledge of CL ,who perhaps I could see privately.I live in Norfolk Thank you
I feel and share your pain - both physically and in terms of being pushed from pillar to post. Dermy says not for me to deal with. Rhumy says not for me. GP says I've done all I can do so not for me!!! Grrrrr!
I don't know of any private rhumys near your sides, but if you don't mind a short travel to London you can try these guys - no need to say they know their stuff
I hope you're all well and keeping out of trouble 😁
After being some advice on warm sock and gloves, a lot of guys on the scleraderma forum recommended Merino wool socks and gloves.
My lovely wife went to mountain warehouse this afternoon and picked up some merino exlorer socks for me. And they currently have a top sale on. These socks are currently on half price sale. Originally £19.99. On sale for £9.99. But after speaking to the guy in the shop to ask suitability and warmth levels, he gave her another 20% off. She came home and realised she should've bought another pair 🤦
Hi! I have chilblain lupus, I was diagnosed about a year ago after having a biopsy. Hydroxychloroquine has improved my symptoms and it is way less severe in the warmer months. I wear cotton gloves when I sleep after putting on epimax lotion, I also always wear socks and quite often will wear mittens while at home if not actively using my hands. The medication has made the most significant impact, but keeping my affected flesh covered seems to help too.
I promised an update after my appointment with my dermatologist so here I am.
Unfortunately it didn't go too well.
I'd originally seen him in late October, where he'd taken photos of my hands and feet and said he'd arrange an urgent joint appointment with himself and my rheumatologist within 2 weeks.
Two weeks came and went. Two months came and went. Three months came and went. Several emails and calls to his receptionist were made. But nothing came back from him.
I let it be know how disappointed I was and just how much pain I've been over the last 3+ months, which I've lost as have not been able to do anything. Couldn't walk, so been stuck indoors. Couldn't open doors, jars, toothpaste, bottles etc. This is not a life! Thank goodness for an understanding wife, who's been doing all the school runs, house work, shops, kids clubs and the list can go on, along with a super stressful job.
He examined my hands and feet and told me it's definitely chilblain lupus. Something he didn't mention at all in October. Nor any of the other Dr's I'd seen, except for the private dermatologist.
He told me the dreaded thing I didn't want to hear - this will happen every year.
I'd also asked him then if this was then a side-effect of the Iloprost infusion, which again he said there was no chance of.
He's asked me to increase my Prednisolone to 30mg and continue using Dermovate ointment. The problem is, I think the dermovate ointment is making my skin worse. I'd stopped it recently and things seemed to improve ever so slightly. But I started it again on Monday and things feel worse again - even with the 30mg prednisolone. The skin has gone red and is super sensitive and painful.
He also said he'd call me on Thursday after meeting with his senior to give me an update on what to do next. Guess what??? Yup, no call!
Now to digress a touch from the appointment, but there is a point 😆
I was talking to my cousin over the weekend. She was telling me about her husband, who's a super fit and healthy physio and trainer. His life revolves around keeping fit and healthy to be able to keep his clients fit and healthy.
They were planning a trip to Spain but to go they'd need to take a Covid jab, something he's never taken as he had doubts about its safety. But to go on holiday, he took it. a few days later, he was sitting down and gradually could feel a tingling sensation down his left arm. This then went down to his leg and couldn't pick up anything and was in pain. They went to A&E thinking it was a stroke. After examination thankfully it wasn't. Then over the next few days, he noticed his hands and feet were super cold. Something he's not ever experienced. He was walking on crutches for a few weeks and now walks around the house with 2 pairs of socks. An under layer and then ski socks on top. All of this after a covid jab.
My cousin abroad had a stroke 2 days after he had his jab.
This got me thinking so I checked when I had my last jab... Beginning of October. And that reminded my wife that when I had my first signs of this was a few years ago but this was just my feet. I'd mentioned then that I was certain it was after my covid jab. I'd asked Dr's then if this was due to the covid jab and they'd all said absolutely no way.
I put this to my consultant during my appointment. He said absolutely possible and he's heard a lot of people have experienced this after their covid jab. Now, do I take future jabs!!!! A very difficult decision....
I have another appointment in a few weeks with a specialist dermatologist so will put this to them to gauge their opinions.
Thanks v much for keeping us posted…this really is no picnic & your detective work is crucial to getting through to convincing diagnosis & a plausible narrative! Every detail is helpful to us all …Hope you’ll continue iving us updates
I've asked the covid jab queso many times and until now itbeen batted back as rubbish. This is the first time a Dr has said yes it's a POSSIBILITY as he heard so many say things.
Yep: I’m reading studies all the time now confirming various manifestations science is admitting seem COVID jab &/or Long COVID related. Seems AID patients maybe seem more suspectable. I think the fact doctors themselves are manifesting & officially reporting such probs means any responsible objective doctor &/or researcher into this subject is having to side step gaslighting their colleagues 🤷🏼♀️, and that means they’ve got to be very cautious about gaslighting patients reporting these manifestations too 👍
That’s THE question…because I’m Dx with the primary immunodeficiency disease panhypogammaglobulinaemia aka Antibody Deficiency Disease, I can’t make antibodies to fight infections of any sort & can’t even make antibodies in response to vaccines. Also I’m 70 so immunosenescent anyway + clinically extremely vulnerable aka immunocompromised due to my heavy duty AID meds & chronic lymphopenia. But I get sound advice from my immunologist @ our Univ Hosp: she acknowledges the ‘known unknowns’ re COVID vacs…& says the decision is up to me. So far i’ve had 8 COVID jabs & noticed no bad effects, so 🤷🏼♀️
After so much woe from me above, finally a few bits of good news.
I had 2 appointments this week - on the same day. One with my rhumy and one with my dermy.
The rhumy was just a routine check up. My Lupus markers were high but that was expected with all that's happened over the last few months. But after consulting with her colleague, they'll consult with my dermy to see if another Beliumab infusion could help.
The dermy then prescribed me Tildiem for the chilblains. 1 a day. Wow! That along with the 25mg predinisolone seems to be working.
I'm far from over it, but can finally grip things without too much pain. Open doors. Open jars that aren't to tightly closed. Things can brush against my hands without me gritting my teeth with pain. And I can finally walk without too much pain and can get into my trainers.
The skin on hands and feet is still peeling, red, and hands a touch swollen. And both still look deformed, but hopefully this too will improve over time 🤞
A bit of a minor update. Even though my hands are a little sore, scarred, and skin blotchy and bumpy, things have got a lot better.
My feet though are still super sore and walking is very difficult. I think this is mainly to do with the sores on my toes and when I walk with shoes, they rub and make things a lot worse, and toes swell up.
So my consultant agreed to going down the Belimumab route. I had this a few years back when I volunteered to go on the trial.
I had my infusion yesterday. I thought it was only a one-off infusion, but I received emails stating several appointment dates, so am assuming I'll be having one dose for several more months. Ouch! Wasn't expecting that. Was hoping it would have been a one off. But so long as it works, I'm happy.
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