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LUPUS UK
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Is this a butterfly rash?

Hi all, Thankyou for having me here!

I’d just like to give some back ground ... I have suffered from Raynauds for a good few years I have three children I gave birth to my third 11weeks ago.. after the birth of my second child whom is 17months old I had terrible joint pains especially in my knees and suffer from migraines, I had went to my gp showed him some pictures of my circulation attacks and he said it’s vasculitus I had an ANA and it was “normal”, I then fell pregnant with my 3rd and I didn’t have any more investigating regarding the vasculitis “diagnosis” fast forward to now my son is 11 weeks and the past few weeks I have noticed several concerning symptoms a pain in my back left side it feels like it’s internal, the corner of my jaw is painful and clicking, my knees have been waking me up in the night from being stiff and painful, I had a migraine attack witch made my arms go tingly and numb and I couldn’t speak properly, I’m incredibly fatigued I feel like a dead weight ache all over and I cannot stand the heating it makes me feel sick and being on a migraine now I’ve noticed my face goes incredibly red and feels like I’ve got sunburn however I am actually not hot my hands feet will be freezing , the face flushing lasts for hours it’s not constantly there but it is noticeable even if I have make up on. I’m going to go back to my gp for further investigation regarding these symptoms however I’d like to know if this a butterfly rash or some reassurance that nothing sinister is going on I’m very anxious about it all. Thankyou for listening.

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I can hear you are struggling. No one here can diagnose a rash by a photo, but it is good you have the documentation. You definitely should be keeping in touch with your GP. The most concerning thing you said was that you had difficulty speaking with a migraine. Please ask your doctor about this, but I think any time there is numbness or difficulty speaking, you should go to the A & E. Take care.

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Thankyou so much for your reply. It was a very scary experience I couldn’t even pick up my phone my vision was terrible I had to sleep that off, I will mention that episode to my gp the thing is I have so many odd things going on he often Just asks me to pick one thing to deal with however I think they are all related, hopefully I get some answers soon my babies need me well!

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I am sure he will want to know about the episode. I have had the numbness before and, yes, it is scary. The problem is they have to give you guidance. I have been told to call an ambulance and not try to figure out if it is a migraine. You need to ask your doctor what to do if you have another episode. Write down your symptoms in bullet points for your next appointment. Be brief. That gives the doctor the opportunity to focus and ask questions about the symptoms important to diagnosis. You can always get support and advice here.

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Make sure you take your temperature regularly. That is important information for the doctor.

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Thankyou so much for your time, I defo will be taking that advice there with calling for help I had gone previously to the AnE department for another “episode” however they done a physical examination and said they was not concerned as I thought I was having a stroke luckily the symptoms had subsided by the time I was seen so I was just dishcharged with it’s probably anxiety. If I could tell you how many times someone’s told me I’m just paranoid. Realistically I’m anxious because of these strange things going on it’s exhausting isn’t! Il defo buy a thermometer can you reccoment which one would be best to use? Again Thankyou so much!

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It is still good you went to the A&E. You were there to rule out certain things. It does not mean you are “paranoid” because they rule out these problems. Migraines do cause all sorts of strange symptoms. The point is you need guidance as to when to go to A & E to make sure it is actually a migraine. It is complicated. Your doctor will be helpful with this. The digital thermometers, I think, are pretty accurate. Take your temperature in the morning and in the afternoon, particularly when you are symptomatic. Do you have fever with your rash?

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Thankyou il defo go back if I have those scary symptoms again! Il buy a digital one and start logging it down, I haven’t thought to take my temperature when I’ve had the rash, however I’ve noticed that it starts with a wave of heat / burning sensation on my face and slightly itchy/tingly so look in a mirror and see I’m bright red also my knees burn up at the same time it happens a lot mostly every evening now.

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Hello Chaz1226

Well, the photo is not exactly screaming "malar rash!" to me, but obviously, we can't diagnose anything here, not least because everyone tends to have their own version of the butterfly rash - and lots don't get it at all. As you know, lupus/SLE is not the only type of systemic auto-immune condition that might cause symptoms like joint pain, fatigue and migraines. And it's also possible that it could be something comparitively innocuous. The LUK leaflet on symptoms and diagnosis is quite handy if you haven't seen it.

lupusuk.org.uk/wp-content/u...

There are other leaflets covering other aspects of lupus and related conditions on the Home page. Hope you get some answers soon, and these problems are quickly resolved. Let us know how you get on anyhow x

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Thankyou so much for your reply and I appreciate the link you have provided me with I shall read that next, I understand these things are rather complex and can take some time to get a diagnosis, I shall continue to note down any symptoms so I can tell my gp gosh I feel like I need the day booked in there I only get a chance to talk about one problem which can get frustrating ! Thankyou again for your time and il definitely keep everyone updated.x

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Yes, it's a perennial problem, not like going in and saying "Have I got a chest infection, doctor?" is it? Instead, we are stuck trying to explain how a whole range of different symptoms seem to fit together in just a few minutes. That's why I sometimes find things like the LUK leaflet handy - helps to remind me what I should concentrate on.x

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You can ask for a double appointment with a GP x

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Just seen the symptom list and I have all apart from the mouth ulcers, I have the circle patches on my arms incredibly itchy is it strange that when I’ve been pregnant I feel well and don’t have the skin problems I noticed I first felt really unwell when my son was around 6 months old but now with my third I feel like I did then but 100times worse around 6weeks old so strange! X

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Keeping a diary is a good way to maximise the GPs 10 minutes. Best wishes Kevin

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Listing your family medical history can often provide clues. Also remember that their diagnosis might have been different now as to that of decades ago. Good luck xx

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While recently giving birth, especially if you're nursing, might be an issue with this, you might want to look into the Paddison Program for Rheumatoid Arthritis. Even though you don't have that diagnosis, the program has helped people who have various autoimmune conditions and can be followed by anyone so long as there is not a medical reason not to. Check with your doctor, but understand most will not have heard of it and will brush it off. It's a dietary program to dramatically reduce inflammation. Inflammation can cause the joint pain you're having, fatigue, and other symptoms. Those who follow it can see massive reductions in pain, swelling, redness, etc. within 24-48 hours. Each person is unique, and it's something you should check with your doctor about. The question is, "Will it harm me if I do this temporarily?" Although there are stages of the program, ultimately, it's a matter of eating a very low fat, vegan, whole food diet. The program has you basically cleanse your system and gradually add back foods one by one. It's hard not to be sold on it when you see your symptoms disappear, but the rate of that happening varies by individual. You can join the program or you can try to patch it together by watching the videos that are posted. Joining gets you into the community, direct instructions on what to do, and community support, participation in monthly group calls, etc. Here's a link to check it out. It takes a while to learn how to do it. It can seem intimidating, but it's just a matter of developing a new routine of shopping, food prep, and eating habits. Exercise is also important as is stress control which is hard when you have a new baby and other children but it's part of it over time. Just look up Paddison Program and Clint Paddison. The program helps you heal your gut over time.

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Thankyou I am so grateful for this information! I’m taking it all on board and will do anything to feel better so if it means a vegan diet I am all for it! Ironically I love vegetables , salads, the healthy options but I am a sucker for some chocolate in the evenings. Also I am very thin but that doesn’t mean I’m healthy does it. Again Thankyou so much for your time and advice x

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Also, when you look at the program, don't brush it off if it seems too much or too hard. Just start doing what you can while learning more. For example, stop adding oil to your foods when cooking or eating. Eat vegetarian instead of meat and dairy. Skip sweats and anything with refined grains in it or just skip grains. The easiest way to do a lot of this is by not buying those foods you shouldn't eat or buying substitutions. Make a veggie soup with beans and serve with brown rice. Or have bake sweet potatoes with veggies instead of noodles and cheese. Do what you can today and start eliminating things that cause inflammation while adding things that promote healing. While you can do a different diet for yourself than for your children and husband, incorporate whatever you can into their diets too. So, when you make a smoothie for yourself on the diet, make a large one, pour your portion, then add some extra fruit to theirs and give them some. Add the healthy things to their diets and start dropping the unhealthy things for their diets. They might still eat things you don't eat on the diet, but let them be generally healthy things. Do it gradually for them but more quickly for yourself. My 25yo son accepted the diet for the most part because he will eat whatever I put in front of him. He then went out and bought some milk, eggs, and brown sugar and once he ate them, his acne which had disappeared came right back. So, he's learning how inflammatory those foods are that way. I pointed it out to him, and he said, "I know." So, he might be becoming a convert. I did lose several pounds in a month on the program, but there are ways to avoid that. Since you just had a baby, you probably shouldn't do the full cleanse, but you can definitely start swapping out inflammation causing foods for healthier foods. Eat beans instead of meat, drink plant milks instead of dairy, eat gluten-free grains instead of gluten-containing grains. Quinoa is a good choice. Just do what you can. Eat lots of fresh veggies and fruits. Drink lots of water. Rest. Do stretches. Ask for help in your house and with your children. Breathe deeply. Try to avoid meat, dairy, processed foods, and added oils and fats. Reduce high-protein foods. You'll get enough protein from other foods. Eat a sweet potato every day. Put cinnamon on it but not butter or sugar. Eat larger quantities of things like sweet potatoes and non-gluten grains so you have enough calories rather than adding fat. This should help. That doesn't mean you shouldn't see your doctor or get medical tests or diagnoses. But, definitely check out the program.

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Wow. That's literally text book. (I have been studying up on Malar rashes for quite sometime.). Saying that, obviously the rash in an of itself cannot lead to a Dx of Lupus. But definitely keep a photo journal of it and see what it correlates to in your life. We have lots of interesting posts on butterfly rashes here. I encourage you to read them!

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Thankyou for your reply! I cannot stand “fake” heat like central heating I burn up and feel sick, my joints in my knees really hurt and I just feel like one big bruise! So many symptoms in the past ticked the box’s for lupus then this has started bothering me for a good few weeks now , also sorry to put this hear but if I have intercourse my face stays like that but even brighter and across my nose and my eyes go white asif I’ve been wearing goggles and been burnt, also afterwards I can’t move and uncontrollably shake asif I’m drained of every piece of energy I had. I’m not sure if there’s a connection with “excersise” and lupus at all. I can’t even do the hoovering without needing to sit down for an hour after it x

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you bring up a totally relevant issue, so no need to apologize. sounds like your noticing that your symptoms, including rash, are associated with physical exertion. Curious: have you noticed anything related to emotional exertion, like stress, anger, anxiousness (acute, not chronic), excitedness, etc.?

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When I’m stressed I have Raynauds attacks especially my feet, i was also diagnosed with Cyclothymia (mood disorder) back in 2016, I suffer from anxiety and I tremble/shake which also happens when I’ve been excersising , I cannot run I get out of breath within seconds and my nose feels swollen inside, which also happens if the heating is on. X

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May I add this morning I’ve woken with one swollen gland in my neck after a terrible nights sleep with my knees and legs feeling very hot, again think it’s because I was in a heated room prior to going to bed (my room is cool) however no doctor appointment is available today. Sorry so much going on I can hardly keep up myself I’m just really worried because my children need me well.

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Hi Chaz1226,

Welcome to the LUPUS UK HealthUnlocked Community! We offer a free information pack which you can download at lupusuk.org.uk/request-info...

A malar rash is usually a pink or redish-coloured rash which mainly occurs on the cheeks and the bridge of the nose. According to The Lupus Encyclopaedia, the rash of acute cutaneous lupus which includes the ‘malar rash’ (butterfly rash) can “last a few hours, a few weeks or sometimes longer”. A malar rash is generally not permanent; it often appears when disease activity is higher or when exposed to certain triggers such as UV light.

To find out how rashes can be treated, you can read our booklet on lupus and the skin here: lupusuk.org.uk/wp-content/u...

We published a blog article on ‘coping with Raynaud’s phenomenon’ which you may find useful - lupusuk.org.uk/coping-with-...

Experiencing extreme fatigue, headaches/migraines and joint/muscle aches and pains are all common symptoms associated with lupus. Below, I have included some information links which I hope you will find helpful:

Pain management: lupusuk.org.uk/pain-managem...

Headaches/migraines: lupusuk.org.uk/headaches-an...

Managing fatigue: lupusuk.org.uk/managing-fat...

We published a blog article on ‘coping with depression and anxiety’ which you may like to read at lupusuk.org.uk/coping-with-...

Have you spoken to your doctor about your breathing difficulties? Your doctor can provide you with the correct advice and treatment. Also, if needed, your doctor can refer you to a specialist such as a physiotherapist or pulmonary specialist.

We published a factsheet on ‘LUPUS: The Heart and Lungs’ which may like to read: lupusuk.org.uk/wp-content/u...

An ANA test determines whether or not a person has an autoimmune disorder, it is not sufficient in making a diagnosis of lupus. dsDNA antibodies are very specific for lupus (as they are not typically seen in any other condition or in healthy population) only approximately 60% of people with SLE will test ‘positive’. Therefore if someone is positive for these antibodies, it often means they have lupus, but if they are negative it does not necessarily mean they do not have lupus. For more information, you can read our blog article on ‘getting a diagnosis of lupus’ here: lupusuk.org.uk/getting-diag...

Good luck with your appointment. Please keep us updated, wishing you all the best.

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Thankyou so so much for all of the above information you have provided me with there! I have been to my doctors today so going to update everyone now x

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