New to Lupus.... possibly!

[Scubes]

Hi, my diagnosis was ANA positive without any clinical features of SLE. However I saw the specialist nurse 2 weeks ago as I started to have increased fatigue and joint pains. She discussed with Consultant and agreed hydroxychloroquine which I started on 3rd April, On 11th April I developed v itchy facial rash on cheeks, rest of my face itchy but no rash. I thought it was allergic reaction to drugs but a doctor at local walk in (who happens to be a Rheumy) said he thinks it is the lupus rash. Seems a coincidence that it has appeared a week after I started drugs - has anyone had an allergic reaction to the meds like this or do we think it is the lupus rash? I am waiting for a call back from hospital.

[nanagill]

Hi scubes, maybe it could be lupus rash as I've heard hydroxy can take up to 12 weeks to get in to your system. I'm sure someone more qualified will post soon. Take care 😊

[tamib0713]

I have been on hydroxychloroquine 200 mg for 10 weeks. I did not develop a rash, but have read so many, (100), that have said they developed rash and itching after 6 weeks. These rashes were on their arms, back, legs, but not face.

[AgedCrone]

I'm off this morning to get results of a biopsy on a rash my dermatologist thinks might be Drug Induced Lupus! No facial rash, no achey joints, no itching . I do have fatigue caused by RA..but it's no worse than usual.

I take three drugs ...two I have been in for 10+ years & Rituximab which I have been on since 2016 for RA. Lupus has never been mentioned by my rheumy,

In the auto immune world I think at least half the people are treated for something they don't have & nobody will pay attention & take notice iof what we tell them....which just might lead to us being treated for something we DO have!

Sorry if a sound paranoid...that is because I probably am!

[shareasmile in reply to AgedCrone]

AgedCrone, I totally agree with your third paragraph! If docs would just LISTEN!!

[AgedCrone in reply to shareasmile]

I don't know about you, but I always think of the one thing I really should have mentioned when I'm in the car on on the way home from my rheumy appointment. I really should take advice & WRITE THINGS DOWN!

[Chanpreet_Walia LUPUS UK]

Hi Scubes,

Welcome to the LUPUS UK HealthUnlocked Community! We offer a free information pack which you can download or request here: lupusuk.org.uk/request-info...

It is important to bear in mind that it can take up to six months for hydroxychloroquine to exert its full effect. To find more information about hydroxychloroquine, read our ‘LUPUS: and Medication’ factsheet here: lupusuk.org.uk/wp-content/u...

A flare of symptoms, for example, experiencing a malar rash usually indicates higher disease activity. It is possible for people to experience periods of remission where their lupus is controlled and they feel relatively better; reducing their signs and symptoms. You may like to read our blog article on 'coping with itchy rashes’ here: lupusuk.org.uk/coping-with-... Also, here is a link to our lupus and the skin booklet: lupusuk.org.uk/wp-content/u...

Below I have included a few information links which I hope you find useful:

Joints/Muscles: lupusuk.org.uk/wp-content/u...

Pain management: lupusuk.org.uk/pain-managem...

Managing fatigue: lupusuk.org.uk/managing-fat...

Please let us know how you get on, wishing you all the best.

[Scubes in reply to Chanpreet_Walia]

THank you for your reply! I am so confused and just want a clear answer rather than medics giving me differing answers, I know it is so hard to diagnose but I am more than 2 years down the line with no official diagnosis. This rash did appear after the first hot day we had! The specialist nurse felt it wasn't the lupus rash as she said that rash is not itchy.... and yet people on here and other websites say it can be! She hasn't seen it we just had a telephone consultation. She has advised I stop the hydroxychoroquine for a week to see what happens. But I guess I would need to start it up again as a double check to see if it is an allergic reaction or not. Thank you for all the links, I will find some time to look at them properly.