Do you lose your hair with Lupus?: Hi, I’m awaiting... - LUPUS UK

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Do you lose your hair with Lupus?

Sarahb_70 profile image

Hi, I’m awaiting test results to see if I have Lupus.

My Dr is very sure I do as have 95% symptoms and has started me on prednisone.

6 tablets for the first week and then reduce the tablets by 1 every day for the second week (if that makes sense )

My Dr is very good but can’t answer many questions for me as he’s not a specialist on this field

I feel very scared about the outcome and not knowing what’s going to happen

I’ve been on Google a lot and have been frightened with what I have read.

My Hubby has said not everything is accurate on Google and to stop looking for medical answers

Can I ask please does everybody lose their hair when they have lupus ?

Thank you

Sarah

42 Replies

Good ol' Doctor Google eh?!! 😱😹You'll learn more about lupus and many other autoimmune conditions right here Sarah..you've come to the right place!!

Yes it is common for us to lose hair..mine was falling out n in the end I just kept it in a plait for a while n only brushed it once a week. Eventually I lost my patience with it n went short..very short so now it's no trouble!! I would advise that u don't wash it too often..maybe once a week..use very mild shampoo with no nasties in it. Don't use a hairdryer or tongs or anything heated n try not to brush too vigorously or too often.

If you haven't been on Prednisolone before there are some side effects to watch out for..mood may fluctuate n u may feel angry or tearful..or both!! Your sleep might be a bit disturbed n you could feel hungry all the time. You say you're on 6 tablets n I'm taking it that they are 5mg tablets so your taking 30mg for the first week.. is that right? It is usual to have a short course of steroids..the first time I was prescribed them it was at 20mgs n then reduce by 5mgs every two days..I think that course lasted a month. If your symptoms ease a bit it's a good indication that u have lupus as Pred does help us manage symptoms.

It's usual to feel scared but please know that we've all been there n we'll support you wherever we can. This is a busy forum..you've come to the right place 💜🌈😽😽xx

Sarahb_70 profile image
Sarahb_70 in reply to Krazykat26

Thank you, yes I’m on 5mg 6 tablets a day for the first week and reduce them by 1 tablet the following week so 5 one day 4 the next until I’m down to 1 tablet

Does this get rid of the redness on my face and hands

My hands are both like this with a little white peeling on them
Sarahb_70 profile image
Sarahb_70 in reply to Sarahb_70

Sorry this doesn’t make sense, I meant to say does the prednisone get rid of the redness in the hands and my face xx

Krazykat26 profile image
Krazykat26 in reply to Sarahb_70

When I had my first short course of steroids I was in hospital with an all over body rash (except my face funnily enough)..the Prednisolone did clear the rash but at that time I wasn't diagnosed with lupus. Do u use anything on your hands? I'm prescribed Dermol 500 lotion which I have to use as a soap substitute n moisturiser. Can u wear gloves? It looks very sore. I have some silk liner gloves that I wear when I go out in the summertime. You will have to be careful about washing up liquid n beauty products..many of us get weird allergies n your dermy will probably want to know at your appt.💜🌈😽😽xx

Sarahb_70 profile image
Sarahb_70 in reply to Krazykat26

I can wear gloves and have been wearing cotton gloves and then washing up gloves over those to wash up

At bath time it’s just water as I just don’t know what bubble baths are safe to use

I think the sun cream I’m putting on my hands are actually making it worse as I now have white peeling skin so going to look online for some summer gloves

I’ve been told by my dr that is will be a while before I see a dermatologist as the waiting list a very long so going to take all the advice I can on here regarding sun lotion, hats. Summer gloves and things like soaps and bubble bath xx

KayHimm profile image
KayHimm in reply to Sarahb_70

Sarah -

It is best to use physical sunscreen if you are not tolerating sunscreen. Many people with lupus - most doctors even - don’t know that photo allergy to the sunscreen is part of the continuum of photosensitivity. Try CeraV, Elta MD, or Superhpoop. It took a long time until a dermatologist specializing in rheumatologic diseases figured out what this particular sun rash was.

Try the sites Solbari and Coolibar. You need a hat with a veil when in direct sunlight.

Good for you for your determination to do things to help yourself.

Xx K

Aura13 profile image
Aura13 in reply to Krazykat26

Hi, I found interesting what you said about the short prednisolone cure in order to see if it's lupus or not. I was prescribed the same except my doctor didn't inform me of side effects or cared that I had vision problems and stomach problems two days after starting the cure. So I had to stop. I have read here on our group and on Google (the doctor that knows more 😁) that even a short term corticosteroids takes months to make the immune system recover and to flush out. I honestly don't know what to say, did I do the wrong thing?

Krazykat26 profile image
Krazykat26 in reply to Aura13

There is no cure for lupus unfortunately. When I had the first short course of Prednisolone I was in hospital with all over body rash which was later diagnosed as allergic reaction to Flucloxacillin but with hindsight I believe that I already had lupus..but we didn't know it. When prescribed Pred the doctor should have also prescribed a stomach protector..I'm on omeprazole 20mgs daily that I take an hour before my meds in the morning. This forms a protective coating over the stomach lining to limit gastric side effects from the Pred. I am on Pred now n have been since diagnosis of lupus in 2017.. currently on 4mgs daily.

I have read on here that lupus does respond well to Pred n it gives the doctor more of an idea of how to continue with investigations..however many of the meds we are on have bad side effects n not every med suits every person. We're all unique!! 😹

My rule of thumb when starting a new med is to give it a week at least to see if I can tolerate it. It can take the body quite a while to adjust 💜🌈😽😽xx

Hi Sarah and welcome to the group - the first thing you must do is to stop googling , your husband is right - I know your very scared at the moment and that is understandable , to try and reassure you every body that has lupus has different symptoms, I’ve had Lupus for 6 years, I’m on meds to help control it and I’ve had no hair loss what so ever - just take one day at a time and write down any questions you would like the consultant to answer, best wishes xx

Sarahb_70 profile image
Sarahb_70 in reply to svfarmer

Thank you, yes no more going on Google, I just don’t have answers. I’m scared and panicking.

I’m not sure when I’m seeing a dermatologist as there is a long waiting list

Thank you for your help! Xx

No, I spent the first couple of years after I was diagnosed peering at my hair to see if it was falling out, but 12 years on it's exactly the same. We all have slightly different symptoms - mine are mostly 'fatigue' (aka complete exhaustion), unless I manage my life very carefully, and joint and muscle pain. Also a bit of Raynauds and livedo reticulation (lacy pattern on skin).And if you must Google, don't read anything old!

Sarahb_70 profile image
Sarahb_70 in reply to marypw

Thank you, no more Google.

I spoke to the dr today and he said Lupus is managed with medication and he wasn’t worried about me having it but more worried I was going to have a stroke or heart attack with the worry and stress xx

The worry and stress about progression will go away, but always stop doing anything before the fatigue kicks in big time!

Sarahb_70 profile image
Sarahb_70 in reply to marypw

Thank you xx

Hi Sarah

I've had lupus for more than 20 years, possibly over 30. I shed my hair every day in excess and block the shower drain frequently (my hair is long) but I haven't lost my hair I still have plenty left!

I guess the amount lost varies from person to person. My understanding was that the hair loss was more a case of thinning rather than total hair loss as in the case of chemo. Also I believe some drug treatments for lupus increase hair loss so not necessarily just the lupus itself.

Best wishes

Prunes

Sarahb_70 profile image
Sarahb_70 in reply to Prunes

Thank you for your lovely message, it’s so hard at the moment as I was only told about this on Sunday and my mind has been racing with what ifs and panic

I’m going to try calming down today it’s my 3rd day of being on prednisone so hopefully my symptoms will improve very soon xx

Agree with all of the lupies above!

Heya Sarah!

Dr Google will worry you for sure. Symptoms vary greatly between individuals. My hair is thinned and stays at a neutral length, so basically doesnt really need to be cut hardly. Other people will have lush locks untarnished by lupus.

One of the best things to do, which is difficult i know, but it is to, try to calm yourself, remove stressors from your life and try to find the positives in the day. I find emotional stress the worst precipitator for lupus symptoms. So over time you will find a calmer, chiller take on things. This will be a big help on everything.

Back when i was diagnosed, the first thing i was given was a detailed research paper on a family with my form of lupus who all had horrible fatal outcomes. That rheumi went on with other doctors to mention that I wouldnt make it to 16. In just over a months time I will be 26. So Dr Google, research papers, rheumatologists and doctors even can all scare monger and make you feel scared and frightened but dont give in to it.

Lupus may be a part of you but it doesnt define you as an individual and I for sure have found more empathy, mercy and grace, and come to a greater appreciation and thankfulness for even the little things in life.

So sit back with a Chardonnay, speak to people if you need to, to get the fear or frustrations out, do things that make it easier on you and take care. And this space is always a safe place for support when you need x

bless ya, Lottie xx

Lottie, thank you so much for this message, my goodness this forum is so good!

I’m going to get 2 books and use 1 for questions for when I see the specialist and the other for writing things to be grateful for.

The thought of a glass of Chardonnay sounds lovely after work tonight but it’s my 3rd day of starting prednisone so I don’t think I can mix!

Thank you again xx

Glad you have a plan in place. Journalling always helps, if anything you see how both your internal thoughts and how your symptoms can all be intertwined. And because it helps me to leave my fears or stresses on the page.

Yeah I don't drink anyways, haha, 😉 lots of caffeine atm to face the day but that's it haha

Hi, I think you are lucky to get some treatment before diagnosis. My hubby has all the signs and test results for lupus but the GP won't give him any treatment until he's been diagnosed by a rheumatologist. That was May 2021, and he's still waiting...On the subject of pred, don't worry! I have PMR/GCA and have been on pred since last summer. I haven't noticed any bad side effects. Some of us have been on it for 10 years! A short term course shouldn't cause any permanent issues, and long term treatments are dealt with by additional drugs to deal with the side effects, though you do have to cut the carbs. Pred itself can cause hair loss, so hopefully yours is temporary.

Sarahb_70 profile image
Sarahb_70 in reply to Broseley

Really that’s shocking, how is your husband coping ?

The Dr has given me 2 weeks worth and today I’m on my 3rd day, I haven’t noticed any difference yet though. xx

Broseley profile image
Broseley in reply to Sarahb_70

You should notice a difference in the next week.

Hi Sarahb_70 - the facts are, some people may experience hair 'thinning' related to Lupus, some won't. Some people may experience hair thinning related to medication - some won't. IF this does happen - it may be either non-scarring (it should grow back) or scarring, depending on the severity of your condition/inflammation. Other factors will also include your stress levels - increasing cortisol that will effect the whole bodies inter-reactions. Please continue to wash your hair as often as necessary to keep your scalp clean and healthy - the first thing people do when experiencing hair loss is reduce how often they shampoo - this is NOT good advice. If you do experience hair loss - you may consider consulting a reputable Trichologist (hair specialist) - Neil Harvey MIT

Sarahb_70 profile image
Sarahb_70 in reply to N314

Thank you for your help, can you recommend a good shampoo and conditioner? xx

N314 profile image
N314 in reply to Sarahb_70

Hi Sarah....... this will depend on how your scalp is..... for those with inflammation we often recommend prescription only shampoo (from your GP). For maintaining general scalp health then we do actually make our own 'èlan' clinic shampoo and conditioner. these are £28.50 each - only currently available from us...... with free P&P in the UK.

Bless you, and it is understandable that you've reached out to Dr Google, who portrays himself as being a highly knowledgable and accessible soother but the truth of the matter is that he often thrives off of people's pain. For instance, you tell him you have a broken toenail = and he replies with a smile on his face, you have broken your rib cage caused by a rare disease and you have moments to live. I know because I've fallen for his faux charms. Ghastly man!

With regard to hair loss, I would suggest looking on the Lupus UK website because unlike other common conditions, each individual experiences Lupus differently and therefore, it manifests differently. It's not clear-cut. As a consequence, its management also warrants a different approach. i.e. Asthma is wheezing and difficulty breathing plus the triggers are identifiable and often tangible. Associated conditions are eczema. The tests are clear-cut. The first-line treatment is inhalers; the second line: oral steroids or other add-on tablets; the third line and for emergencies: nebulisers. Lupus has a plethora of treatments and again, as I'm not a medical expert, I would urge you to do some ladybird reading via the Lupus UK website, which is also a point of reference for the medical professionals. (I've signposted my GP to this website, who (finally) uses it).

As for myself, I have been diagnosed with discoid lupus (on my scalp and hands only) amongst others, which has caused localised painful hair loss. Leading up to the diagnosis, my hair started to dramatically become thinner but to be fair, I eventually was diagnosed with a number of autoimmune conditions that presented as though they were Lupus but after various blood tests, they were not. Nevertheless, you will see from other comments that some haven't experienced this at all.

In other words and from my little understanding, it is not a prerequisite that hair loss is a given if you are diagnosed with Lupus.

Try not to panic and become anxious, which is easier said than done, I know because we've all been there. Prior to diagnosis, it is scary but eventually, this feeling will become a distant memory. I, for one, would suggest waiting for the blood results because it may not even be Lupus.

Hope the above helps and show Dr Google the door!

Sarahb_70 profile image
Sarahb_70 in reply to Amakura

Thank you for your message, I’m not going on Google anymore to search anything medical

Both my hands are very red and dry is this what you had ?

If so what did you use to help ?

I’m on my 3rd day of prednisone but unsure if this helps the hands

I’ll attach a picture

Both my hands are like this!
Sarahb_70 profile image
Sarahb_70 in reply to Sarahb_70

I also have the butterfly rash on my face which the Dr said is one of the major signs xx

Amakura profile image
Amakura in reply to Sarahb_70

The rash appeared quite badly on my hands and not on my face. Initially, due to it not being Lupus' more familiar presentation that is on the face, I ignored it for years and self-diagnosed it as being eczema (For over twenty years I had extremely bad eczema all over my body but the face was worse. My family referred to me as a Dracula reincarnated because I hated the sun and household lighting. I constantly sat in the dark. Looking back, it most probably was Lupus all along). It was my dermatologist who discovered, after myself not even alerting her to it, that it was Lupus. It was sore but even more so, within the sun, aggravated it even more and produced loads of small boils (which was exactly the same as the same presentation of my eczema).

So, to answer your question, my hands were red raw and dry. The dermatologist, which I believe was mentioned within one of the comments below, prescribed Dermol to wash and as a hand wash, Diprobase to moisturise and hydroxychloroquine (first line treatment for Lupus and other conditions) including a very mild steroid cream and strong steroid cream for emergencies only. By the way, I have been on oral steroids (prednisolone) since the London bridge was built for a different autoimmune condition as well.

What do I do? I also, and this may sound really extreme/melodramatic but due to the dryness and soreness, I sparingly apply the very mild steroid and then layer, on top, the Diprobase cream but not rubbing it in. By the time I've finished applying the second cream, the section of my hand resembles a wedding cake. Afterwards, I put on burn aid dressings to protect it whilst - for example - doing washing up, and to avoid it from brushing against my bed sheets etc but would have to remove it when bathing of course and go through the same ritual until its appearance looked well moisturised. I don't leave the dressings on for long periods because, naturally and it's beneficial, for the skin to breathe. I suppose, after experiencing skin conditions all my life, I have just copied what they used to do to me on the hospital wards when I was a frequent inpatient for my 'eczema'. At the time it was torture but it's now come in handy.

Also, use lukewarm water. Hot water dries out the skin very quickly. When washing your hands, I would try and see if you can purchase (or better still, ask your doctor for a prescription) a hand wash alternative. Also, use marigolds for sensitive skin. In the interim and overall, your doctor is meant to make you comfortable until the diagnosis is made. Quality of life is so important. And, do not use any perfumed skin creams or high street brands that claim its 'for sensitive skin' on the area. That's like adding gasoline to a burning flame.

I think I've waffled on a bit toooooo much and sorry, it's called fatigue typing overload hahaha. Hope the above helps.

P.S Love ya nails, by the way. Very pretty

🙂

Sarahb_70 profile image
Sarahb_70 in reply to Amakura

You have really been through so much and you sound like such an upbeat person

I’ve been crying on and off since I found out on Sunday and fearing the worst

I’ve even looked online so see how much it would be to go private as I have no idea when my appointment will come through

Your amazing you really are xx

KayHimm profile image
KayHimm in reply to Amakura

Love your description of Dr. Google. He has led me down more scary paths than a crocodile. But I still use him … but I make sure to let doctors know I read the guy.

Amakura profile image
Amakura in reply to KayHimm

😂We've all been there and I now try my very hardest not to reach out to Dr Google regardless of his promises to buy me a yacht and whisk me away to a tropical island.😂 Instead, I go straight back to the doctor and/or consultant and ask them to fill in the blanks and when this is not working, I post my question on here. The responses have been so helpful and have saved my life!

KayHimm profile image
KayHimm in reply to Amakura

Now that is a fabulous approach! If I ever get the yacht Dr. G has promised me, I’ll pick you up on my way to Tahiti. I’ll bring an extra sun hat with veil for you.

Amakura profile image
Amakura in reply to KayHimm

😂😂😂😂😂 I'll hold you to it. You've said it publicly, so you can't disappear! x

Hi Sarahb_70,My tips...........Don't stress, keep out of the sun, wear a good factor 50 sun cream each day and dont read too much Google! We all do that but this is really the best place to get your answers. Some people dont lose any hair at all. Wear a large rimmed hat in the sun. All the medication I have had definitely reduced my symptoms.

I have had Lupus for about 40 years and I am still kicking!

Don't worry, I am sure you will be ok. x

Sarahb_70 profile image
Sarahb_70 in reply to lupylupus

You lived with this for 40 years!

I’ve been covering myself up and wearing factor 50 Nivea sun cream but my hands are so red and dry the cream seems to be making it worse!

I’m hoping the prednisone will reduce the hand redness and rash.

I’m wearing long tops and cotton lining gloves while I’m out though

Thank you for your advice xx

Hi Sarah - I lost some hair and its thinned somewhat. Was diagnosed around 20 years ago with mild SLE.

I woke one morning to find hair on my pillow 😦 and when I spoke to my gp about it she said it was normal that people lose hair and it was nothing to worry about, found out later she knew very little about Lupus. In fact the practice was treating me for rheumatoid arthritis which I dont have, prescribing a drug that led to an ulcer but thats another story.

It was some time before I managed to get blood tests done at the hospital, a locum sent me and the results were positive for Lupus. Once on the right medication I gradually felt much better and the hair fallout stopped. My system is stable just now, not needed medication for around 3 years. Wait until you see a Lupus doctor to answer your questions, has your doctor referred you?

Sarahb_70 profile image
Sarahb_70 in reply to chrisj

Hi Chris. I’ve spent the last 3 months at the Drs once a week. I saw so many different Drs who said I had dermatitis on my hands and lips.

They gave me so many different creams and ointments over the months and nothing was working

I’ve been so down and on Sunday I took myself to hospital to see an out of hours dr

She took one look at me and said you have a butterfly rash on your face and asked did I know what Lupus was ?

She was totally shocked that 2 days earlier I was at my own Drs surgery and saw 2 different Drs who failed to see the butterfly rash on my face

On Monday I went to my Drs and saw another dr who told me it does look like I have lupus I have 95% of the symptoms and put me on prednisone, todays the 3rd day I’ve taken it

He also got a nurse to see me straight away to do bloods and has referred me to a dermatologist xx

chrisj profile image
chrisj in reply to Sarahb_70

Bad of your own doctors mine were the same, no clue about Lupus and I'd never heard of it so didn't know any better.

I was so grateful to the locum who wanted to know why I hadn't been referred to the hospital for blood tests and he sent a request off marked as urgent. I'd been unwell for some time, fatigue, muscle aches no energy at all or strength to do anything but sleep. Seeing my hair coming out was the last straw.

The hospital doctor was lovely and reassuring, she prescribed the drug I needed (Plaquenil/hydroxy) and gradually symptoms eased. I had Raynauds as well fingers and toes turning white but no redness apart from burning cheeks and thats stopped, the raynauds much better as well. I was lucky that Plaquenil suited me very well.

I have Sjogrens too and have struggled with that trying to manage it, the one drug to treat it didn't suit me, I'm allergic they said and they stopped it 🥴Hope they sort you out, I know its all a bit scary and worrying. Wishing you well xxx

Sarahb_70 profile image
Sarahb_70 in reply to chrisj

I don’t have the tiredness or muscle aches at all.It’s my lips with sores on and my hands are terrible that along with the rash on my face but nothing else

Thank you for your message and help xx

Hello,I had lupus without knowing. I experienced alopecia.. read about that. I had like 5 or 7 areas where i lost my hair about 1" (size of an American quarter). My dermatologist gave me injections in those areas for about 2 months, i think it was every 2 weeks, ,,, I forgot, but it all came back, I was eventually diagnosed with Lupus, not in America, I had to go to another country to do it...(sad)

Right now, I'm losing hair again, so i asked my doctor to put me back on Plaquenil. The worst for me is that i can't sleep and i get this strange pain on my legs that are like electro shocks, but like everyone else has said before, everybody has it differently, I thank God have no organ compromise so far.. (cross fingers)

I try to eat healthy, no garlic, potatoes, peppers, tomatoes and very little red meat.

But basically, don't panic, I did! but just saying... stay positive.

Take care,

Hi Sarah, yes in most cases lupus causes hair loss but again we're all different. For me it caused hair thinning, translucent skin, visible veins as it I aged too soon and too fast. But autoimmune causes in general a destruction of collagen. I haven't stopped washing my hair as always, I lost half of it but then again if I don't wash often it hurts my scalp.I personally use Davides the Melu shampoo and mask and I swear by it, you could find it on look fantastic. It helps with the falling and thinning. All the best

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