Lupus? Rash/Pain Mystery/ Autoimmune?: For nearly... - LUPUS UK


30,072 members26,616 posts

Lupus? Rash/Pain Mystery/ Autoimmune?

lizd121 profile image
28 Replies

For nearly 4 months now ive had these rashes on and off with swelling and raised rashes all over my body from my elbows to stomach, knee and hip I also had a bad painful rash all over my hands.

The rash is not itchy but painful. I have been using antihistamines as they thought it was an allergy but also had no idea what it was referring me to a Rheumatologist with thought of it being autoimmune as well as a Dermatologist.

Bad photosensitivity with sun breaking out in a rash which is painful

I have family history of Lupus with my grandmother having it from a young age.

Help please?

Sometimes appears as per image below others is circular like raised bumps on stomach, hip or just red swelling around hip/knee/elbow

28 Replies
Caramia64 profile image

I too have had a discoid rash on my back since January , saw rheumatologist last month after my gp did a punch biopsy of it . It looked like lupus the biopsy said but was then sent to several lupus specialits for further analysis. Had bloods done for antibodies and ANA was positive , but still waiting to hear back from rheumatologist about starting on hydroxychloroquine! It a slow long road but hoping you too will get some answers soon! let us know how you get on xx

lizd121 profile image
lizd121 in reply to Caramia64

so this could be some kind of lupus/autoimmune?

Caramia64 profile image
Caramia64 in reply to lizd121

perhaps only way to find out is to get a biopsy done. Rashes are sometimes hard to differentiate. x

Caramia64 profile image
Caramia64 in reply to Caramia64

if you search my name you can se my rash if that helps x

BonnieSue profile image

I get a rash sometimes but it is in areas that my skin folds. It's painful also. It also can present as raised looking but has a mirror image of itself on the 2 folds of the skin. It can also become so deep it presents with little bloody spots. It's a fungal rash, though, not autoimmune, and my dermatologist treats it.

If you have any need to keep your rash dry, I have found the very best powder is Caldesene, in a pink plastic round container, usually with the baby products in Walgreen's or Wal-Mart. It's better than anything my dermatologist has. It's active ingredients are 81% talc and 15% zinc oxide. While the ingredients don't sound impressive to me, the performance of this powder is very impressive.

lizd121 profile image
lizd121 in reply to BonnieSue

I also get this on my wrist and chest so i don't think it is where my skin folds but rather a joint thing due to musculoskeletal pain and aching

BonnieSue profile image
BonnieSue in reply to lizd121

Yes, I agree.

Yup you are correct.

lizd121 profile image
lizd121 in reply to

In that it could be Lupus?

field profile image

I had i same rash appearing at different parts of my body. It eventually appeared around the back of my neck. My raynauds was flaring and i had pneumonia, so it was lupus connected.

Paul_Howard profile image

Hi lizd121 ,

Do you have appointments through for your referrals yet?

Have you experienced any other symptoms in addition to the rash?

If you want more information about skin involvement in lupus, you can read and download our booklet here -

lizd121 profile image
lizd121 in reply to Paul_Howard

Have appointment for rheumatologist

MadgeM profile image

I have had rashes which (at times) seem to be aggrevated by photosensitivity. They cover my arms, legs, hands and feet. Some very stray ones can come up on my torso and back also. I "feel" them before they come out, sounds weird, I know, but they are very painful, I liken each spot to an individual bee sting. I was told that these were my "white blood cells producing a high number of cells and the excess were bubbling through to my external skin". I was sent for a biopsy of an active spot - it was positive for SLE but all my bloods come back as negative. My white blood cell rates have been continually high. Doc says I don't have SLE but not one person has explained how a biopsy can be wrong - believe me I have asked for a logical explanation, any explanation!!!? Additionally, my health continues to deteriorate (after 4 yrs of having whatever this is) to the point that one of my symptoms, extreme short term memory fog, is severely affecting my job. No-one seems to be able to tell me what's going on. In addition, Doc said she was wary of sending me for further neurosurgical investigation as she thought "they're going to say it's all in your head"! This really concerned me - I actually had to remind myself that, at the very least, I cannot "make" my body have the rash, it leaves a wine coloured stain on me (my knees especially), I cannot make a biopsy state I have SLE???!! No-one would EVER give themselves a cluster headache. Why should I be pushed to the point where I question my own sanity by the NHS's non-action? All my health issues started after I had a severe case of whooping cough which destroyed me. Doctor advised me (after 4 weeks of coughing) that "...adults DON'T get whooping cough". I said I would have private blood tests as I thought I might have it- she reluctantly gave me a test but that "it will come back clear". 3 Days later I had the Public Health Office confirming I had whooping cough and asking who I had been in contact with. I then developed double pneumonia and a chronic allergy to my two dogs (I'd had my boys for 8 and 6 yrs with no problems whatsoever). After this I seemed to start going downhill fast. My "flares" include rashes, cluster headaches (rarely suffered from even a simple headache in my life before this), short-term memory fogs, I can't find the words - I know in my head what I want to say but end up describing it instead of using the naming word? extreme fatigue, very high white cell count, sticky blood (whatever this is!). I had an issue with a dermatologist during this time. I filed a complaint which took 12 months to resolve. During this resolution meeting I was asked what I wanted.....I replied an appointment with one of the two Lupus experts in Scotland. That was agreed to. I am waiting for this referral to go through. I may not have LUPUS, I might have LUPUS all I need to know is a definitive answer. If it's not, then I can go back to my GP to go down another route. Just because none of the Consultants I have seen have given me an answer as to what's wrong DOESN'T mean that I am NEVER entitled to an answer and that I should "go away"......

Buffy14 profile image
Buffy14 in reply to MadgeM

Have you been diagnosed with sticky blood ?

MadgeM profile image
MadgeM in reply to Buffy14

I was told by a Clinical Investigation Unit that I had sticky blood about 18 months ago. I stupidly thought it meant my blood was thicker than normal. I mentioned this to my GP this month and she told me there is nothing on my records about this at all. I know I didn't dream it! I now feel that the GP is exasperated by me and I tend to not go there at all and just carry on getting worse.

Buffy14 profile image
Buffy14 in reply to MadgeM

You have a lot of symptoms of sticky blood ( hughs) syndrome , headaches , memory issues , rashes , if you do have it you should be on warfarin im not sure , mild cases just need aspirin I think maybe you only need warfarin if you have had blood clots . Ask Paul about it and go onto the hughs syndrome community and post your issues they may have advice .

vaderviper profile image

It is possibly lupus, however you need a number of blood tests to verify this - your rash and photosensitivity APPEARS to be lupus: Plaquenil will be started, but since it takes 2-3 months to work, many Rheumatologists will also put you on prednisone while the plaquenil takes effect (that's assuming all the blood work verifies you do indeed have lupus. If you have dry mouth and/or eyes he/she may want to check for Sjogrens as well.

1) CBC

2) ESR

3) CRP

4) dsDNA

5) Anti-phosphlipid antibodies

6) Chromatin antibody

7) Coombs' antibody - this is one of the criteria used to classify someone as having SLE

8) Ribosomal P antibody - This antibody is 100% specific for lupus.

Hope I helped.

Dr. S. (in the USA)

MadgeM profile image
MadgeM in reply to vaderviper

My rheumatologist opened our meeting with the words "I have been asked to rule out Lupus" My heart sank as this indicated to me that he was not going to help me! I stated that a biopsy was positive and, if he ruled out SLE, then I hoped he would explain why the biopsy was wrong and diagnose me with what WAS actually wrong with me as I have been going through this for 4 years!. No surprise, I called my GP receptionist and was told that none of the blood tests indicated SLE, however I do have consistently high leukocyte levels and problems with a slightly elevated growth hormone level. These have not been investigated further. My neurosurgeon was going to admit me and run a load of tests including lumbar puncture - does not appear this is going to happen at all now. Every Consultant I see seems to drop me as soon as they realise what my symptoms are. I have got an OK for referral out of NHS area for a LUPUS expert but my GP and Hospital are now arguing about who has to do the referral. Couldn't script it - it actually feels like a Benny Hill script - would be funny if I wasn't suffering!

vaderviper profile image
vaderviper in reply to MadgeM

I hope I am wrong, but I have a sneaking suspicion that all of the above blood tests were not done to confirm or eliminate a DX of lupus.

As to your consistently high white cell count, a number of things can cause that.....and a determination should be made as to the cause:

A high white blood cell count usually indicates:

1) An increased production of white blood cells to fight an infection

2) A reaction to a drug that increases white blood cell production

3) A disease of bone marrow, causing abnormally high production of white blood cells

4) OR: An immune system disorder that increases white blood cell production

A high growth hormone (HGH), if consistently high should also be checked just to verify it is nothing more than an anomaly, SOMETIMES it can mean:

1) An adenoma (tumor) in the pituitary gland, however in this case IGF-1 levels would be high (insulin levels)

2) Starvation

3) Kidney disease

4) Diabetes

*** I am sure that all your blood tests ruled these out - again you just might run a little high for no apparent reason and no consequences.

Hope I have helped, but I WOULD INSIST that these tests be performed:

Anti-phosphlipid antibodies

Chromatin antibody

Coombs' antibody - this is one of the criteria used to classify someone as having SLE

Ribosomal P antibody - This antibody is 100% specific for lupus.

Sometimes people can have lupus but run a false negaitive ANA test (about 2% of the population).

Dr. S. (in the USA)

Freddi1019 profile image

Hey friend . sounds like discloid lupus. The lupus attacks the skin. I started off with the skin rash, sensitivity to the sun, then years later SLE lupus. Now the doctor I see for my lupus said I should see a dermatologist.... Hey another co-pay and a 3 month wait. Lupus is lupus .I said he should treat it. I digress.... There is a steroid cream that helps

Buffy14 profile image

You just mentioned sticky blood, are you saying you have that ? That can cause headaches, memory problems and rashes , are you taking warfarin.

lizd121 profile image
lizd121 in reply to Buffy14

Bad headaches so yes but did not mention sticky blood (?) and do not take warfarin

Buffy14 profile image
Buffy14 in reply to lizd121

Sorry it was someone who replied to you that mentioned it

MadgeM profile image
MadgeM in reply to Buffy14

I know the significance of what sticky blood is now and that it relates to a lot of my symptoms but my GP said there is nothing on my records relating to what a Clinical Investigation Unit told me 18 months ago.

Buffy14 profile image
Buffy14 in reply to MadgeM

I would ask your gp or consultant to do the blood tests for it .

MadgeM profile image
MadgeM in reply to Buffy14

I was told I had sticky blood by a Clinical Investigation Unit but when I asked GP about this she said there is nothing on my records stating this and (quite indignantly!) asked me where I "thought" I heard this.....I told her CIU she told me that was impossible.

Buffy14 profile image
Buffy14 in reply to MadgeM

I would point out to her that she told you you couldn't have whooping cough and she was wrong and insist she do a blood test . If you have sticky blood you could be at risk of blood clots .

marky1956 profile image

helo there liz how you doing I to have lupus . the rashes I have are on my back sometimes on the side of my face when iam being attacked .just recently I have have had very bad mouth infection i.e. my mouth was on fire for nearly two weeks I have to go for a oral medical .iam going to get photos took of my back and will post them you can look at them and see if they are similar to the ones you have I currently use two creams on my ack on a steroid and the other normal I will give you the names when I post the photos .take care mark .

You may also like...