LUPUS ISSUES: Hi all I was diagnosed with subacute... - LUPUS UK

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LUPUS ISSUES

Cjgj profile image

Hi all I was diagnosed with subacute lupus erythematosus {scle} is there anybody out there know if you get any pain in joints, I also get a lot of pain on my left side ,

13 Replies

Sorry to hear have SCLE & yes you get leg pain/aches, etc. hydroxychlorquine helped me, there alot to take in & figure about UV light intolerants... Also, often associated with sjogrens which I was shortly diagnosed with after SCLE & is causing me lots of fatique, etc with the lupus...I am also on Micophenlate as well...ml

Cjgj profile image
Cjgj in reply to maggielee

hi thanks for your reply will go back to doctors again but I think they think I am just a moaner

maggielee profile image
maggielee in reply to Cjgj

If they diagnosis with a rare chronic disease you are not a moaner...far from it, its part of the disease..... ml

maggielee profile image
maggielee in reply to Cjgj

It can also go hand & hand with primary sjogrens....

Jammyonion13 profile image
Jammyonion13 in reply to Cjgj

You are definitely not a moaner I used to think that or I was lazy or imagined everything it’s horrible having autoimmune diseases they literally rip you apart everyday if it’s not fatigue it’s pain or itching or tingling soar eyes ulcers constipation having to avoid the sun ?? and a million more things I hope you get the help and compassion you deserve it’s scary when you first get diagnosed good luck 🤗

Hello. I was diagnosed with scle four years ago, having had Sjögren’s syndrome for many years. As has been said hydroxychloroquine helps with joint pain and skin issues but the main thing for me is to stay out of the sun and use factor 50 sunscreen all year round. Also symptoms tend to come and go . This is a wonderful forum for help, support and hints and tips to get you through. A lot of doctors don’t seem to understand but everyone here does!

Hello Cjgj

Sorry to hear that you are suffering with aches and pains.

I was going to tag maggielee into your post but I can see she already has.

When I first met her we both had an SCLE diagnosis and I did a lot of reading about it.

(My diagnosis has now changed.) But SCLE is known to be the cause of many aches and pains and arthralgias.

If your GP is not taking you seriously, see someone else who will. Have you discussed this with your Consultants?

I am guessing you are very sun sensitive and will need to take many precautions regarding UV light, which will definitely make your symptoms worse during the summer months, unless you do.

Best wishes

Wendy

Cjgj profile image
Cjgj in reply to Wendy39

Hi Wendy 39 haven't seen a consultant the only person I have seen is the dermatologist who did my skin biopsy then told me what I have so still don't know what to expect

Wendy39 profile image
Wendy39 in reply to Cjgj

OK. Well in that case I am very glad you have found this group and are posting your questions here. I joined when I was diagnosed and it’s been so important to me. You will learn so much here - in my case I have learnt more here than I have in most appointments. LUPUS UK have some great information leaflets on their site and they also sell various books about lupus. If you are like me, I wanted to read and learn as much as I could about my illness, which made me feel a little more prepared. I had never heard of lupus and it’s a steep learning curve. I have posted many times about the ways I protect myself from the sun and UV. Not sure if you’ve realised but there is a search facility on this site, so you can search SCLE, photosensitivity etc. Did your Dermy prescribe you sun cream?

Cjgj profile image
Cjgj in reply to Wendy39

No buy it myself

Wendy39 profile image
Wendy39 in reply to Cjgj

You could ask your GP to prescribe it. The one generally used by us lupies is Ego Sun Sense SPF 50+. It’s a very good one. You will need to use it well.

Read this leaflet on photosensitivity.

lupusuk.org.uk/publications/

Like I said, please ask any questions. People will reply and help wherever they can.

Best wishes

Hey..I was only diagnosed yesterday with this and I got alot of joint pain that alternated daily from my shoulder to wrists to finger..I haven't had joint pain now for a month which is good and start my medication now when I see an optician first...how long have u been diagnosed? as I don't know much about the condition and how are u finding the treatment?

Cjgj profile image
Cjgj in reply to Stacy123456

Hi was diagnosed last may2018 I am not on any medicine I was offered the meds you have and got scared when he said got to have eyes looked at first seems as my doctor's think am just complaing don't know what or where to go next hope you get on ok perhaps you can let me know what eye test is likex

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