newly diagnosed with no support - LUpus Patients Un...

LUpus Patients Understanding and Support

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newly diagnosed with no support

rad123 profile image

Hi everyone.

I was diagnosed with discoid lupus 2 days ago. I have had symptoms of SLE for around 2 years but never put the symptoms together even though my Dad had SLE!! I had biopsies on a facial lesion and when I went to see the dermy for my results I was seen by his reg. She told me it was lupus and looked for an information leaflet but couldn't find one. Her exact words to me were " You probably know more than me about this seeing as your father had lupus" I was given cream and told to return in 6-8 weeks. I insisted on having ANA test done which she agreed to.

Feeling very low at the moment :((

9 Replies
Atibrat profile image

I was diagnosed with SLE 5 years ago after 2 years of being sick. Fatigue at first and then muscle and joint pain. I do not have discoid that I know of. The first year was the hardest part. Now it is just part of my life I deal with the best I can. I now have many symptoms that come and go. I think acceptance is the hardest part. I do not know of anyone who has it in person so I come in here often for support. I hear the medication for it now days makes it easier. I am on plaqinel and it does help quite a bit. I am also on a low dose of prednisone and have been fair the last year or so.

You are not alone and this is a great place with a lot of support. What are some of your SLE symptoms if you do not mind me asking.

Hug Tammy

rad123 profile image
rad123 in reply to Atibrat

Hi Tammy. thanks for the hug really needed one.

got my ANA results back today and they are negative which is a relief.

I feel tired really easily. When I do housework I need to rest between jobs!! My hair is broken and really badly thinning. I get the butterfly rash and the discoid lesion. I get really short of breath easily. I have a regular strange sensation in my chest (central) like someone is poking me hard. I was off work last year (I'm a radiographer in MRI) because I was suffering severe anxiety, confusion, palpitations, depression. I was put on trazadone and sent to a counsellor. I lost my son 13yrs ago and my GP said that was the cause!! I seem to have pain all the time; knees, small shoulder jt fingers, toes etc etc. I get lots of nose sores and have a sore in my mouth at the moment. I have GI problems... just had diarrhoea for three months now back to normal.

Butterfly rash came on my face on holiday 2 yrs ago but i went on holiday in sept and it didn't happen.

My husband thinks I'm ok coz it's "only discoid"

Can anyone tell me if my symptoms are just typical of discoid or whether I should go and see my GP?

Hugs back to you Tammy and thankyou for replying so quickly feel very alone with this.

Hope you are well today.

Atibrat profile image
AtibratModerator in reply to rad123

My ANA was high but has been negative the last 3 years. I have found that blood work and disease activity do not always correlate. You have many of the SLE symptoms that I have. Fatigue, mouth sores, butterfly rash, hair issue same here. I forgot are you taking plaqinel? That seems to keep my blood work in order but not all my symptoms.

Take care and listen to your body. I have found that if I work with my body and try to rest when my body tells me to, take my medication regularly, eat healthier and avoid stress when possible I function better.

Remember you are not alone there are many people with lupus and other autoimmune diseases. Keep reaching out to others.

rad123 profile image
rad123 in reply to Atibrat

Hi Atibrat.

I'm not taking anything. The doc just gave me Olocon cream and said come back in 6-8 weeks. No information, no medical history taken or anything. I was in the office less than 5 mins. she just said use the cream I even had to ask how much to put on and she was even unsure about that

lupus-support1 profile image

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

I am sorry not to have been able to reply to you sooner.

I would have thought that the consultant should have spoken with you rather than a junior doctor! It sounds as if this registrar knows little about SLE, placing the responsibility onto you, the patient. Know matter how "well-informed" we may be, we are also patients who, sometimes need to feel we are being looked after and who can address our anxieties and answer our concerns. You were left, dropped even abandoned by the very people who should be looking after you. Little wonder you are feeling low.

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: 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!


Thanks for your support Ros.

I registered with the message board but it said they need to look at my application or something. I forget exactly what it said!! big problem of mine, the memory.

I will keep trying my password but it won't let me on at the moment.

lupus-support1 profile image

I am sorry for any confusion. Registration is not automatic; I verify each registration in order to ensure, as far as humanly possible, that people are genuine. Sometimes, spammers and those wanting to sell goods use forums such as these where people are vulnerable. I have validated your account and you should be able to login. If not, let me know and I will send you a temporary password which will allow you to login and you can then change it.

With good wishes,


Hi Ros.

managed to log on thankyou

lupus-support1 profile image

Great! Please feel free to introduce yourself. There is a great deal of information at the LuPUS MB. Any problems, you can send me a private message.

Be well!


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