Newly duagnosis of SLE: Hi all My name is Asin I... - LUPUS UK

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Newly duagnosis of SLE

8 Replies

Hi all

My name is Asin

I had 17 yrs from 4 months i had symmetrical both my hand joint swelling and fever

Then my doctor given me NSADs as it viral arthritis after that my condition progress to oral aphthys ulcer , anemia , photosensitive

All my serology negative

My doctor put me on follow up

Iast month i done serology

ANA negative

Anti DNA 52 high pisitive

So senior said i have SLE give me hydroxychloroquine 200 mg daily

All my symptoms subside

Any one can advice me and encourage me

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8 Replies
Treetop33 profile image
Treetop33

Hello Asin. Welcome to the group. There's an admin here who can probably point you to some reading material to help you understand your condition.

It is awful and terrifying being diagnosed with Lupus. It sounds like the docs are on top of it. If taking hydroxy has caused your symptoms to subside that's a very good sign (both that the medication is working and helping you towards a clear diagnosis).

Good luck and let us know how things progress.

Wendy39 profile image
Wendy39

Hello and welcome. I'm sorry to hear of your recent bad health & lupus diagnosis but you have come to the right place for support. I know this diagnosis can feel totally overwhelming and you are scared for what the future holds, but this initial fear does settle down. This is a wonderful community and people have a huge amount of experience to share. Have you joined lupus UK? If not, take a look at their site, there is lots of information there too. I have learnt so much from reading posts here. There is also a search facility on this site, so you can search symptoms and medications etc. I think we all start on Hydroxychloroquine and then are monitored to see how our lupus responds. I think for me the fatigue and the sun sensitivity are hardest to deal with in a daily basis but we all have a different combination of symptoms and our journeys are all very individual. Are you being seen by a good Rheumatologist? Best wishes.

in reply to Wendy39

Yeah i monitor by internal medicine doctor and rheumatologist doctor

They advised me follow up and just plaquenil with some principle for avoid sun light as possible and stress

Thanx all

But any one had results like mine

I mean negative ANA and positive antiDNA

Is hydroxychloroquine harmful or not

Wendy39 profile image
Wendy39 in reply to

Hi. I've never had a high antiDNA, just very low and only two positive ANA tests in 3.5 years. Yet still diagnosed with SLE. Yo should get your eyes tested before starting hydroxy so the optician has a base line test for future reference/can monitor changes but I think from what I've read that side effect is rare. I had a noisy rumbling tummy for about 3/4 weeks when I started it but I take mine with milk and that settles down. Hydroxy seems to be generally well tolerated. It's an anti inflammatory med, not an immune suppressant. It should help with aches and pain, fatigue etc. I keep a daily health diary, just in a plain notebook so I can monitor my disease and ups and downs myself. Good luck.

ijeasike profile image
ijeasike

Hello Ajeel

Good to have you here. It does sound as if your Drs are taking care of you properly. Hydroxychloroquin was the 1st Lupus medication i was also given. Once your on it, you should get your eye checked yearly. Take your medication regularly and also take one day at a time. Take care and God bless.

Regards

Ijeasike

Lupiknits profile image
Lupiknits

Welcome! You will find a lot of support and advice here. Hydroxy was the first med I was started on. It takes some time to build up in your system, but has definitely helped me.

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK

Hi Asin,

Welcome to the community forum. I hope that you find it a useful source of information and support. If you need more information about lupus you can request or download one of our free packs at lupusuk.org.uk/request-info....

We also have our full range of publications available to read/download at lupusuk.org.uk/publications/

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