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Discussion Starter · #1 ·
Hi all. I'm new to the forum and hope that someone here is able to give me some advice/help because I am at the end of my tether. My story is as follows.

In 2005 (whilst on holiday abroad) I started to get disc lesions on my body which 'spread' to my scalp (worse area), face (corner of nose/eyebrow/chin), inside both ears, between buttocks and outer elbow. A month or so later my hair started to fall out big time, although not in a specific pattern that my dermatologist could attribute to genetic hair loss etc. I now how bald patches around the lesions with short hairs sticking up here and there. I would describe the appearance as 'moth eaten'!

To cut a long story short, I was initially told the rash was 'probably' psoriasis. I was then told by a different dermatologist that it could be cutaneous lupus, however, a scalp biopsy has come back 'inconclusive' so I still don't know what I'm dealing with! Basically I have been fobbed off and told to keep applying steroid cream.

The lesions I have don't respond particularly well to the cream and tend to fade on their own after 6 months or so. Sometimes they reappear again in the same place. Some of the older lesions have the appearance of ringworm, ie, red edges and paler in the middle. I have just been on holiday and the lesions did not clear up in the sun.....in fact I got extra ones on my torso!

I have 'flare ups' at certain times.....am experiencing this at the moment with my scalp and losing more hair which I can ill afford! The lesions have a flaky layer of skin over a red disc which can be peeled off. Sometimes the lesions bleed and have little blisters. The ones on my scalp are sore, however, those on my body are not.

I have recently been diagnosed with fibromyalgia and tested positive for parietal cell antibodies (auto immune condition).

Has anyone any idea what these lesions could be? Would cutaneous lupus definitely show up in a skin biopsy? I had blood tests for lupus in 2006 but they were OK. Are there other tests that could be done?

Thanks in advance for any responses.
 

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Hi:

I am so sorry that you are having such a rough run of things.

I am no expert however these do sound like they might be Discoid Lesions. This is usually confirmed via a skin biopsy. Plaquenil (an anti-malarial) is the usual start of treatment, however it can take up to six months to start working. Steroid creams and intra-lesional steroid injections should help.

I believe that there are some blood tests that could be used to confirm a skin biopsy (however I am not 100% sure).

If you are not getting the treatment from a dermatologist, you might try to find a rhumatologist, however skin lupus, is usually treated by a dermy.

I am not sure where you are, if in the USA, you could try a major teaching hospital, if in the UK you might want to try St Thomases.

I am sorry I could not offer more, please keep in touch and let us know how you get on.

Stephanie
 

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Discussion Starter · #3 ·
Thanks Stephanie....any help at all is much appreciated. I've had a skin biopsy and this came back 'inconclusive' whatever that means so I'm just wondering whether it could still be lupus. I'm in the UK (South West) so if anyone can recommend any doctors that would be appreciated.
 

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If you can then ask your GP or Dermy to refer you to St. Tommies, that is the world famous lupus center in England. It might be worth the trip to get resolution.

I am sure that someone from much close can make other suggestions.

A skin Biopsy can indeed be inconclusive and still be Lupus. They can always do additional tests on the sample to narrow it down.

Best of luck - Stephanie
 

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I would definitely go for a second opinion, especially with the knowledge that the sun has caused more lesions to appear. Sometimes biopsies can come back as inconclusive due to a sampling issue, given your symptoms and how long they've been a problem, it seems a second biopsy may be in order. Especially if it can be done by a dermy who specializes in treating lupus skin issues. If you see such a specialist, given the history, they may just decide to do a trial of medication to see if it helps.

Hope you get some help soon - I've heard very good reports of St. Thomas too. ;)
 

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Discussion Starter · #6 ·
Maia;522940 said:
I would definitely go for a second opinion, especially with the knowledge that the sun has caused more lesions to appear. Sometimes biopsies can come back as inconclusive due to a sampling issue, given your symptoms and how long they've been a problem, it seems a second biopsy may be in order. Especially if it can be done by a dermy who specializes in treating lupus skin issues. If you see such a specialist, given the history, they may just decide to do a trial of medication to see if it helps.

Hope you get some help soon - I've heard very good reports of St. Thomas too. ;)
Thanks Maia. I think I will keep pushing this as I have a feeling it is more than just 'psoriasis'. I'm angry that the biopsy has come back as inconclusive and I've just been brushed under the carpet. Do the lesions I have described sound like lupus to you ? Are there any other symptoms? I was told that I couldn't have the anti malaria treatment as a matter of course as it had possible side effects....what are these?
 

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Welcome to the forum Aggie :)

I am really sorry about your skin problems and can sympathise since my lupus affected my face very badly. You have put your finger on it - you have been brushed off, fobbed off and hung out to dry in a way that is simply not acceptable. Maybe "failure to provide an adequate standard of care" is not too strong a way of putting it.

Skin lupus can resemble other conditions and vice versa. There are typical sorts and untypical sorts which can't be so easily identified by appearance even by specialists. Pictures are seldom any real help as they can't provide important details and are 2 dimensional. Lupus isn't all that common: my GP has only two cases of LE in an ethnically mixed urban practice of 6,000 and I am the only case of skin lupus he has ever seen, let alone my sort which is relatively unusual. So it is most likely that even dermatologists will not be too familiar with lupus skin, just as many rheumatologists are not experienced in systemic disease. However, from your description, yes it could be lupus and since that was suggested by one dermatologist you have every reason for pursuing that line of enquiry first.

About the biopsy, a totally reliable source says that 10% of biopsies from discoid lesions won't show up lupus. As Maia says that inconclusive result might not be reliable - poor sample taking, taking from that particular area which would not show up for some reason, inexperienced pathology, even getting samples mixed up. I know of cases when the same biopsy has been lupus clear as day to an experienced pathologist. Well worth getting it reexamined and having other biopsies done if necessary, especially if this biopsy was done some time ago.
On the Not Yet Diagnosed section there's a stuck post about lupus skin with links to picture sites. The sort that can have psoriasis like lesions is called subacute cutaneous, SCLE, but it rarely leads to scarring.

The other places where biopsy might show up lupus are unaffected but exposed skin, such as the inner forearm, and unaffected unexposed skin such as the buttock. For people with discoid lupus, lupus shows up in the first of those cases up to 25% of the time compared with 50% for those with SLE. An inconclusive test can't mean it is not lupus.


About the blood work, a lot might have changed in two years so that and a urine test should be done again as part of the dermatology investigation. There might not be any obvious lupus relevant findings but there might be something as simple as anemia.

People with skin lupus can have other systemic symptoms even when there is no supporting bloodwork. Fatigue, anemia, heart and lung problems for example. Make a detailed list of your health history leaving nothing out not even ob/gyny stuff, children born healthy and such. Make a note of chronic health problems of close blood relatives.

Check out the Criteria lists in a sticky at the top of this section. Then make a list of any ongoing health problems such as extreme fatigue that has no real explanation, joint aches and pains, headaches/migraines, even feeling not very mentally alert, if your skin gets worse before periods and any other complaints. ( Don't argue with yourself whether they are important or not or seek to explain them away )

Another thing that more than concerns me, is what you were told about antimalarial drugs. Obviously nobody should take drugs unnecessarily but when there is no clear diagnosis medicines are often used diagnostically. If they help it strongly suggests that the suspected diagnosis is accurate.

Antimalarials have no more risk of side effects than OTC medicines that people take without a second thought. Many of us take them for years and years without ever having any problem whatsoever. They will usually show some improvement on skin within a couple of months. I think it is very wrong not to try them saying the side effects are so bad which is not true and leave a patient untreated who is clearly already suffering horribly from disease. It's the patient's choice what meds to take when they have correct information about a medicine.

Grrrrrrrrrrrrrrrrrr !!! My blood is boiling.:mad: Dogs get more consideration than this.

Unfortunately I have never heard any good stories out of the south west and can only think of Southampton then Bath or is it Bristol, who have lupus specialists. Do ask in the Find a Doctor section.

I hope you have a decent GP who will back you in your efforts and if necessary refer you out of area. The trek up to St Thomas could be well worthwhile so, dont dismiss it out of hand.
Even a private consultation at the London Lupus Centre could be well worth the £200 odd. These doctors have enormous clinical experience and knowledge coming as they do from lupus specialist centres, often tertiary referral centres who see the more difficult cases.


I hope that the encouragement and information you will get here will empower you to get the care you deserve. Empowerment means ****** minded determination ;)
We'll help you all we can. Skin problems won't kill, but they can ruin lives, have a huge psycho social impact and cause deep unhappiness. It is just not acceptable, especially in this image conscious age.

For the most part, skin lupus is not hard to treat successfully or at least very much relieved

All the best
Hugs
Clare
 

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Hi Aggie,

Ive had similiar problems since I came back from my holiday abroad in June,psorisis like rash on my eyelids and scalp and massive hair loss,Im waiting on blood test results which Im told are being sent to my GP this week!Ive been prescribed a mild steroid cream which does clear it up but within a few days it comes back.My Rheumatologist said I presented with symptoms of Fibromyalgia(which I see you have) ,but with the rash and hair loss he was going to check for Lupus.

Sounds like you need a second opinion,hope you get some relief soon.

Bonnie x
 

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Dear Aggie,
I fully agree with Clare. She is very knowledgeable and her advice is worth taking!
Regarding anti malarials, I was tried on them before I had a firm diagnosis, they are extremely safe. What you have been told about them suggests that those treating you have very little knowledge.
Myself and my Daughter are both treated at St. Thomas' although I had to start via the Private route. If you see the Docs. at the London Lupus Centre they are very fair and will not charge a fortune for unnecessary tests.
x Lola
 

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Discussion Starter · #10 ·
Clare.T;522971 said:
Welcome to the forum Aggie :)

I am really sorry about your skin problems and can sympathise since my lupus affected my face very badly. You have put your finger on it - you have been brushed off, fobbed off and hung out to dry in a way that is simply not acceptable. Maybe "failure to provide an adequate standard of care" is not too strong a way of putting it.

Skin lupus can resemble other conditions and vice versa. There are typical sorts and untypical sorts which can't be so easily identified by appearance even by specialists. Pictures are seldom any real help as they can't provide important details and are 2 dimensional. Lupus isn't all that common: my GP has only two cases of LE in an ethnically mixed urban practice of 6,000 and I am the only case of skin lupus he has ever seen, let alone my sort which is relatively unusual. So it is most likely that even dermatologists will not be too familiar with lupus skin, just as many rheumatologists are not experienced in systemic disease. However, from your description, yes it could be lupus and since that was suggested by one dermatologist you have every reason for pursuing that line of enquiry first.

About the biopsy, a totally reliable source says that 10% of biopsies from discoid lesions won't show up lupus. As Maia says that inconclusive result might not be reliable - poor sample taking, taking from that particular area which would not show up for some reason, inexperienced pathology, even getting samples mixed up. I know of cases when the same biopsy has been lupus clear as day to an experienced pathologist. Well worth getting it reexamined and having other biopsies done if necessary, especially if this biopsy was done some time ago.
On the Not Yet Diagnosed section there's a stuck post about lupus skin with links to picture sites. The sort that can have psoriasis like lesions is called subacute cutaneous, SCLE, but it rarely leads to scarring.

The other places where biopsy might show up lupus are unaffected but exposed skin, such as the inner forearm, and unaffected unexposed skin such as the buttock. For people with discoid lupus, lupus shows up in the first of those cases up to 25% of the time compared with 50% for those with SLE. An inconclusive test can't mean it is not lupus.


About the blood work, a lot might have changed in two years so that and a urine test should be done again as part of the dermatology investigation. There might not be any obvious lupus relevant findings but there might be something as simple as anemia.

People with skin lupus can have other systemic symptoms even when there is no supporting bloodwork. Fatigue, anemia, heart and lung problems for example. Make a detailed list of your health history leaving nothing out not even ob/gyny stuff, children born healthy and such. Make a note of chronic health problems of close blood relatives.

Check out the Criteria lists in a sticky at the top of this section. Then make a list of any ongoing health problems such as extreme fatigue that has no real explanation, joint aches and pains, headaches/migraines, even feeling not very mentally alert, if your skin gets worse before periods and any other complaints. ( Don't argue with yourself whether they are important or not or seek to explain them away )

Another thing that more than concerns me, is what you were told about antimalarial drugs. Obviously nobody should take drugs unnecessarily but when there is no clear diagnosis medicines are often used diagnostically. If they help it strongly suggests that the suspected diagnosis is accurate.

Antimalarials have no more risk of side effects than OTC medicines that people take without a second thought. Many of us take them for years and years without ever having any problem whatsoever. They will usually show some improvement on skin within a couple of months. I think it is very wrong not to try them saying the side effects are so bad which is not true and leave a patient untreated who is clearly already suffering horribly from disease. It's the patient's choice what meds to take when they have correct information about a medicine.

Grrrrrrrrrrrrrrrrrr !!! My blood is boiling.:mad: Dogs get more consideration than this.

Unfortunately I have never heard any good stories out of the south west and can only think of Southampton then Bath or is it Bristol, who have lupus specialists. Do ask in the Find a Doctor section.

I hope you have a decent GP who will back you in your efforts and if necessary refer you out of area. The trek up to St Thomas could be well worthwhile so, dont dismiss it out of hand.
Even a private consultation at the London Lupus Centre could be well worth the £200 odd. These doctors have enormous clinical experience and knowledge coming as they do from lupus specialist centres, often tertiary referral centres who see the more difficult cases.


I hope that the encouragement and information you will get here will empower you to get the care you deserve. Empowerment means ****** minded determination ;)
We'll help you all we can. Skin problems won't kill, but they can ruin lives, have a huge psycho social impact and cause deep unhappiness. It is just not acceptable, especially in this image conscious age.

For the most part, skin lupus is not hard to treat successfully or at least very much relieved

All the best
Hugs
Clare
Thanks for taking the time to post such a comprehensive response Clare......very much appreciated. It's with information like this that I shall be returning to my GP and demanding more tests/referrals. I know it's not a life threatening conditon, however, it has impacted daily for nearly 3 years now and apart from feeling like S**T I'm getting really fed up not looking like me. I have to sort my face and hair each day before I can even think of facing myself properly let alone the world. It took me 10 years to be finally diagnosed with FM and I'm not going through that trauma again. I've never had a urine test for lupus, my last blood test was in 2005 and the derms that I've seen haven't really examined my skin properly.

Before, I go and look at the 'symptoms list' I will reel off some other problems that I have mentioned to doctors/specialists/GPs etc. etc. in the past.....all who probably have me listed as a mad woman/hypochondriac! Just wondering if they might sound familiar to those who have already been diagnosed:

- skin problems as previously described;
- parietal cell antibodies positive
- FM (painful joints)
- major hair loss. Settles, starts to regrow really, really slowly then comes out again during another scalp flare up
- weight gain around middle which I can't lose even though I have a healthy diet and exercise as my FM allows
- fatigue but difficulty sleeping
- breathless
- nausea/vomiting
- migraine/headaches
- low ferritin level (slow rising). Initially told this was cause of hair loss.
- bleeding gums
- white patches/very tiny blood spots on inside of cheeks - clears quickly though
- sore, ragged cuticles on certain fingers (do not bite nails)
- left eye often painful on waking (optician said dry, thought possibly due to FM)
- heavy/prolonged periods although hormone tests etc came back OK
- painful abdomen
- 3 treatments for cervical erosions
- UAE treatment for fibroid
- cone biopsy for abnormal cervical cells
- skin problems flare up big time just before/during period
- can no longer use tampons (much too painful!!!)
- itching on clear skin (mainly shins)
- hives
- nose bleeds
- red lumps on shins which turn into bruise
- days that I feel like I have the start of flu...but it isn't?!
- cold hand and feet much to hubby's disgust!
- panic attacks (now stopped)
- having to wee a lot! Some days feel like I have start of water infection.
- frequent painful blisters on edge of one finger
- elevated cholesterol
- elevated cortisol
- abnormal liver function test
- pea size lumps on side of neck
- thinning skin (I look like a road map now!)

Once again, I'm really grateful for the warm welcome to the forum and the advice offered by all. I know it will be a battle but I'm already on my way to feeling empowered!!

xxx
 

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Discussion Starter · #11 ·
Bonnie64;522973 said:
Hi Aggie,

Ive had similiar problems since I came back from my holiday abroad in June,psorisis like rash on my eyelids and scalp and massive hair loss,Im waiting on blood test results which Im told are being sent to my GP this week!Ive been prescribed a mild steroid cream which does clear it up but within a few days it comes back.My Rheumatologist said I presented with symptoms of Fibromyalgia(which I see you have) ,but with the rash and hair loss he was going to check for Lupus.

Sounds like you need a second opinion,hope you get some relief soon.

Bonnie x
Hi Bonnie. Sorry to hear that you are having problems. I've recently come back from Mallorca and like you, managed to acquire new lesions on each eye lid and also on my torso. My scalp has also flared up again as well with yet more hair loss. The lesions on my scalp, face and body look like psorasis. Further down you go it looks like ringworm. I find that the steroid cream just masks the problem.....I rarely bother now. Can you describe what your lesions and hair loss look like? My rheum wasn't really interested in my skin when I was diagnosed with FM but then the derm only briefly looked at my scalp/ears.....said there was no need to remove my make up/look elsewhere! I hope you get 'sorted' soon too. Hopefully with everyones help we will. x
 

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Discussion Starter · #12 ·
LolaLola;522980 said:
Dear Aggie,
I fully agree with Clare. She is very knowledgeable and her advice is worth taking!
Regarding anti malarials, I was tried on them before I had a firm diagnosis, they are extremely safe. What you have been told about them suggests that those treating you have very little knowledge.
Myself and my Daughter are both treated at St. Thomas' although I had to start via the Private route. If you see the Docs. at the London Lupus Centre they are very fair and will not charge a fortune for unnecessary tests.
x Lola
Hi Lola....that doesn't surprise me. I now have very little faith in the majority of the medical profession. So many seemed ill informed, chauvanistic, not interested or totally outdated. I was described by one consultant to another as a 'very complex case'. Wonder what that really means in medical terms!

To be honest I think it all boils down to money. That is the real reason I wasn't prescribed the drugs. Nothing to do with possible side effects. I'm also having problems getting funding from the NHS for treatment with Lucinda Ellery in London. According to my healthcare trust, hair loss doesn't cause women enough mental problems for them to assist. Saying that, they'll help if you're 'affected' by the fact that your boobs are naturally too small for your liking, in your opinion God gave you a nose that doesn't suit the rest of your face or you are morbidly obese through lifestyle choice/lack of willpower.

Anyway, I'm lucky enough to have private healthcare via my husband's job so I think that is the route I will now take as the NHS derm washed his hands of me when my skin biospy came back as inconclusive.

Thanks very much for the info. Will have a word with my GP about the way forward. x
 

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Aggie69;522993 said:
Hi Bonnie. Sorry to hear that you are having problems. I've recently come back from Mallorca and like you, managed to acquire new lesions on each eye lid and also on my torso. My scalp has also flared up again as well with yet more hair loss. The lesions on my scalp, face and body look like psorasis. Further down you go it looks like ringworm. I find that the steroid cream just masks the problem.....I rarely bother now. Can you describe what your lesions and hair loss look like? My rheum wasn't really interested in my skin when I was diagnosed with FM but then the derm only briefly looked at my scalp/ears.....said there was no need to remove my make up/look elsewhere! I hope you get 'sorted' soon too. Hopefully with everyones help we will. x

Hi Aggie,

My rash looks like Psorasis,its red,raised and becomes flaky and can be itchy.My hair loss has been massive,its coming out all over my head,Ive lost well over half since my holiday.I got it cut shorter to make it look thicker but its still coming out,my house is covered in my hair:(There is new hair growing in though,can see the wee bits sticking up,hope this is a good sign.You also mention cold hands and feet,I have Raynauds which causes this,another reason my Rheumy tested me for Lupus!

Bonnie x
 

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Discussion Starter · #14 ·
Bonnie64;522997 said:
Hi Aggie,

My rash looks like Psorasis,its red,raised and becomes flaky and can be itchy.My hair loss has been massive,its coming out all over my head,Ive lost well over half since my holiday.I got it cut shorter to make it look thicker but its still coming out,my house is covered in my hair:(There is new hair growing in though,can see the wee bits sticking up,hope this is a good sign.You also mention cold hands and feet,I have Raynauds which causes this,another reason my Rheumy tested me for Lupus!

Bonnie x
Yes, your rash and hair loss pattern both sound exactly the same as mine although strangely it is my clear skin that itches. My rash is sore in places where it has split/blistered. I hope your hair loss settles soon. Please let me know how you progress. x
 

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I have opened my Album with my SCLE skin photos in, see my Profile - click on my name in blue. Don't ask me why I have opened it ! :) I must be feeling expansive or maybe a gesture of solidarity or maybe a statement of some sort. I used to have all that crud over my cheeks too and above my eyebrows and lower chin. That's post intensive treatment including laser. My face was clear at one stage but has come back again over the past few years but only in these areas. It's slightly raised & flaky but doesn't itch these days unless I am flaring. Some of the white areas within the affected areas are where I had laser to reduce vascularity. It blasts the tiny blood vessels
I only ever had another real lesion on vee of neck and lots of little ones hardly obvious on my forearms. Apparently I have or had discoid too on ear lobes and inside ear 'shells'.
No comments of any personal sort on these photos please.

:)
Clare
 

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Discussion Starter · #16 ·
Clare.T;523014 said:
I have opened my Album with my SCLE skin photos in, see my Profile - click on my name in blue. Don't ask me why I have opened it ! :) I must be feeling expansive or maybe a gesture of solidarity or maybe a statement of some sort. I used to have all that crud over my cheeks too and above my eyebrows and lower chin. That's post intensive treatment including laser. My face was clear at one stage but has come back again over the past few years but only in these areas. It's slightly raised & flaky but doesn't itch these days unless I am flaring. Some of the white areas within the affected areas are where I had laser to reduce vascularity. It blasts the tiny blood vessels
I only ever had another real lesion on vee of neck and lots of little ones hardly obvious on my forearms. Apparently I have or had discoid too on ear lobes and inside ear 'shells'.
No comments of any personal sort on these photos please.

:)
Clare
Clare. THANK YOU.......just two little words I know, but you and all on this forum are a God send. x
 
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