Hydroxychloroquine DLE: Is there alternative... - LUPUS UK

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Hydroxychloroquine DLE

Advice1 profile image
7 Replies

Is there alternative treatments that are not so potent as Hydroxychloroquine

for Discoid Lupus( that is not Chronic) As The steroid cream works on the Face

but the Shoulder on old BCG area from years ago which was recently Biopsied

is extremely Itchy in the evening i would be grateful for some advice .

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Wendy39 profile image
Wendy39

Hello there.

Have you just been diagnosed?

I have SCLE, which is an overlap between DLE and SLE. I was prescribed 2 x 200mg of Hydroxychloroquine a day straight away. I've been on it ever since - that was November 2013.

Hydroxychloroquine is the first step for most lupus sufferers.

Others need stronger medication to control our lupus symptoms, but we usually take this on top of the Hydroxychloroquine- so it is the first building block.

When you say your DLE isn't chronic what do you mean? It's just that chronic means an illness that persists for a long time or is constantly reoccurring. As far as I know, all lupus is chronic.

It might be helpful if you tell me what stage of diagnosis you are at, what your Rheumatologist or dermatologist has advised you?

I know those early days of diagnosis can be very daunting and scary. I wasn't on any medication and so the thought of taking two of those tablets every day was a big thing to accept. But I was also suffering and my quality of life and that of my families too. So I knew the tablets were the lesser of the two evils for me and I was relieved that I had some help and recognition of what I had.

If you need more advice, take a look on the Lupus UK website. There is a lot of helpful information on there, including diagnosis and medication and sun protection etc.

Please get in touch again and let me know more.

This is a wonderful, helpful and supportive group. We will try to help and share our experiences as much as possible.

Best wishes.

Advice1 profile image
Advice1 in reply toWendy39

Hi Wendy39,

thanks for your reply sorry for the delay in my reply thanks for sharing your experience of your symptoms and treatment.

I would say in my case it comes and goes

so maybe not be chronic .

The Biopsy and Blood Test was inconclusive due to a weak positive ANA but leaning towards DLE (immune Disease) after Dermatoligist running the results past a Rheumatologist .

I will follow you helpful advice about

using Steriods carefully i have a mild one

and one from the Dermatologist much stronger 0.05% sparingly.I'm glad ,for you,

that the Hydroxychloriquine tablets is a help to you.I will look at the Lupus website thanks for your thoughtful and kind advice

Good health and

Good Luck.

Wendy39 profile image
Wendy39

By the way, I hope you have been advised to use the steroid cream very carefully on your face. What steroid cream is it?

Chanpreet_Walia profile image
Chanpreet_WaliaLUPUS UK

Hi Advice1,

Have you spoken to your GP or rheumatologist about this?

Speaking to your GP or rheumatologist can enable him/her to provide you with different types of treatment to help manage your discoid lupus. Your doctor/rheumatologist may be able to prescribe topical and injection treatments other than oral treatment. The potency of topical treatments can range from mild to strong and can be read about in our ‘LUPUS: The Skin and Hair’ factsheet: lupusuk.org.uk/wp-content/u...

We also have a booklet with more information about skin involvement in lupus which you can read or download at lupusuk.org.uk/wp-content/u...

It is important to bear in mind that it can take up to six months for hydroxychloroquine to exert its full effect.

Please keep us updated, wishing you all the best.

Advice1 profile image
Advice1 in reply toChanpreet_Walia

Hi Chanpreet_walia

Thanks for your reply and advice and concerns .I am still waiting after 2 weeks for a reply to my letter from my dermatoligist about the itching.GP hasn't been of great help so far just says use steroid creams come back in six months time!I would certainly like to find out more about steroid injections for the shoulder .Thanks for all the links which

i really appreciate your time

thank you.

Chanpreet_Walia profile image
Chanpreet_WaliaLUPUS UK in reply toAdvice1

Hi Advice1,

You are most welcome.

We published a factsheet on 'LUPUS: The Joints and Muscles' which discusses steroid injections which you can read here: lupusuk.org.uk/wp-content/u...

Advice1 profile image
Advice1 in reply toChanpreet_Walia

Hi again Chanpreet_Walia

Thank you very much for your generous link to the fact sheet and also thanks for your time and support,thats a great help too.

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