A quick question

[Hopey]

I have been diagonisrd with conective tissue disease and fibro ( positive ana speckled, positive anti RNP and DsDna). I am on plaquenil 200 mg per day and lyrica 150 mg per day My question is i have noticed a rash on my cheaks and nose after being in the sun for short periods then it seems to lighten off after a while when indoors could this be what is refered to as a malar rash?

[Atibrat Moderator LUPUS SUPPORT]

Yes that is what I have. I usually get it during a flare and often at night. The sun can bring out symptoms and my doctor said that my asthma and rash get worse or appear in the evening because our own cortisol is lowest at that time. Makes sense I guess. I can not say for sure but it sounds like it is.

[Hopey in reply to Atibrat]

Yeh i thought it might be but wasn't sure thank you for answering

[lupus-support1 Administrator]

Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.

A malar rash (butterfly rash) is a very specific rash that is only seen in some people with lupus. The only way to determine the malar rash is through a biopsy. A malar rash does not lighten or disappear when not in sun light. It sounds as if this may be a photosensitive rash which many people (between 40-70%) do have whether in the sun (even if cloudy) or under UV lights. There are many kinds of rashes involved in lupus; and there is also a condition called discoid lupus, which only affects the skin.

A malar rash (which can be precipitated by sunlight) is very specific. It is characterised by an erythema, or redness, over the cheeks and nasal bridge (but sparing the nasolabial folds, which is in contrast to the rash of dermatomyositis). It lasts from days to weeks and is occasionally painful or pruritic.

We also have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.

By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.

When you register, please use the following format for entering your date of birth: nn-nn-nnnn where n=number. Please use the "-" separator and not "/".

Finally, please go to: lupus-support.org/LuPUSMB and Sign Up.

I look forward to talking with you more!

Sometimes we need to talk to people who understand and who are not family or friends.

Be well!

Ros

[Hopey]

Thank you for the info i will look up the link just trying to determine what i am dealing with at the moment rhuemy said some type of ctd which doesn't answer my question of what type ( positive anti Rnp which i read is a marker for mctd or sle) all the rhuemy has said is dont worry its only mild i suppose i should be happy about that and i shouldnt be inpatient but just need to know what i am dealing with so at least i can get my head round what i am dealing with sorry about the rant just frustrated but again thank you for the info it is appreciated

[lupus-support1 Administrator]

Dear Hopey,

I understand your need to know your diagnosis, but sometimes it takes a while. It is better to say "a connective tissue disease", which I agree is very general, then give a wrong diagnosis! There is no single blood test to determine SLE or MCTD. Indeed, there are many patients who are "sero-negative" and nevertheless have lupus. There are other people who have a positive ANA but show no signs of any CTD.

Mixed Connective Tissue Disease is a very confusing term. What this means is that the patient has symptoms of more than one connective tissue disease. According to Professor Graham RV Hughes, a clinician of international repute and was formerly the head of the Lupus Unit at St Thomas' Hospital, London, that the person should be treated as any lupus patient would be treated. People with MCTD can have features of lupus, dermato or polymyositis, rheumatoid arthritis or scleroderma. Therefore, doctors rely on clinical examinations, a full clinical history and watching the patient over a period of time to see what develops.

You are not having "a rant". You are understandably worried and anxious, but this is normal. Please do join the LupusMB above as there are many Members who can identify and share with you your concerns. At this point, the most important thing you can do is to ensure you are seeing a lupus specialist. Not all rheumatologists are expert in lupus and some have never treated anyone with lupus.

With good wishes,

Ros

[Hopey in reply to lupus-support1]