What diagnosis and medication can I expect with ear rashes and swells painful fingers ? Being the first time, I am quite concerned.

[NY22]

Hello Lupus Uk community. For a year I have had rash in the ears and in the scalp behind my ears. Two months ago ( during winter months) my fingers started swelling and paining with joint pain. My GP has finally referred me to a Rheumatologist and the appointment is taking time. Meanwhile I consulted privately and they expect SLE. My ANA is positive (1:128) and C3 level is lower at 0.65. Rest of blood work, RA factor, Anti CCP and bone profile has come normal. I have been asked to start with hydrochlroquine 200 - is it safe? Any experience? What diagnosis and medication can I expect from Rheumatologist? Being the first time, I am quite concerned.

[Spanielmadlady]

Hi NY we can't give any diagnosis here...its all far too complex with many AI illness overlapping.you may not even get a diagnosis of Lupus as some Rheumatologists won't without a positive dsDNA test.that is because a percentage of the population have a positive ANA without having lupus.

HCQ is the foundation of treatment and one of the weaker drugs. I take 400 mgs a day have done for 4 years now.....you MUST get your eyes tested before you start taking it and every year as there is a rare side effect called retinal toxicity.HCQ takes months to work...6 months for full effect so don't expect miracles overnight.its trial and error finding the drugs combo that works for you.stronger drugs like immunosuppressants are sometimes added in at a later date.

Keep a symptoms diary and pics if possible.You will have to be patient...the average time to diagnosis is about 6 years for me it took 5 years.

We are a friendly bunch with plenty of experiences and knowledge to share so don't be afraid to ask ...weve all been where you are now .

Be kind to yourself Best Wishes SML xxxx

[NY22 in reply to Spanielmadlady]

Thank you tons SML. Agree I will have to goto more tests- just feels like a long journey of uncertainties CM and drugs. Noted on HCQ and the suggestion of diary is very timely. Xx

[Spanielmadlady in reply to NY22]

Tests can be endless ....I've been on monthly bloods tests for 2 1/2 years. For 5 years they told me nothing was wrong and it was all in my head despite 6 hospital admissions with breathing difficulties that required steroids.only when they told me to come off steroids and i went stiff did they refer me to Rheumatology....the rest as they say is history .It can be daunting but we can help you along the rocky road xx

[NY22]

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[Alida_Bennett Partner LUPUS UK]

Dear NY22

Welcome to the LUPUS UK HealthUnlocked Community. We offer a free information pack which you can download or request at:

lupusuk.org.uk/request-info...

Below you will find a link to our publication regarding symptoms and diagnosis.

lupusuk.org.uk/wp-content/u...

Hydroxychloroquine is the most common first line treatment for lupus as well as other rheumatic diseases and is generally very well tolerated. I have added below a link to our publication in relation to medication:

lupusuk.org.uk/wp-content/u...

You will also find below a link to our blog article on how to get the most from your medical appointments. It gives some good advice in relation to how to prepare before the appointment in order to get what you need from it.

lupusuk.org.uk/getting-the-...

I hope you find the above helpful, but if I can help further, do please let me know.

Kind regards

Alida