Discoid lupus

[Maggie000]

I have been suffering with this over 16 years. I have lost all my hair and I am taking Hydroxychloroquine. now I’m suffering with my joints my knees .how can l relieve the pain thank you

[SLEEPINGDOG]

To Maggie,

You have been in the wars, you poor thing. As a fellow sufferer, I think it sounds as though you have more going on than just Lupus [bad, though it is]. If you haven't yet had the benefit of seeing a well-recommended Consultant, I think you should ask your own Doctor to refer you to one, assuming he/she doesn't know what's going on in your body either.

Before I was prescribed Hydrox . . etc. . . . I had to sleep downstairs because I couldn't climb or descend stairs or keep my balance, and I couldn't take anything in - not even water! Also, the skin started peeling off my back. In two weeks I lost nearly 20 lbs (but I was overweight anyway, so I was able to spare it but not lose it at that speed!) and I was taken into hospital and put on a drip, but then somebody worked out it was Lupus and Hydroxy . . . was prescribed. At once things started to settle down, I replenished the lost 20lbs (oh dear, now I can't seem to stop eating - so back to my reality, eh?). No effect on my hair though, but I never had much anyway. I have to admit that my joints are still creaky and constantly tired, as is the small of my back, especially. The physiotherapist just says "just take more exercise" but as I can scarcely walk 25 yards that's still an ambition which will remain unfulfilled. Standing up straight is impossible too, so I have to spend a lot of time 'resting on my laurels'. Who can say whether it is the Lupus or any of my previous serious illnesses which are the cause of the discomfort, but whatever is the cause of your problem - I hope it can be resolved enough to give you some relief. You have my heartfelt sympathy. I take the full daily allowance of Paracetamol, and liniment rubbed into the most painful areas but I'm not going to ask for anything stronger, because I don't want to get hooked on anything, and I recommend it to you.

Can't offer anything to bring back hair though, sorry!

Take care, my dear,

John

[Maggie000 in reply to SLEEPINGDOG]

Thank you John. Thank you for your kind words and advice. M

[Chanpreet_Walia LUPUS UK]

Hi Maggie000,

Welcome to the LUPUS UK HealthUnlocked Community!

I am sorry to hear that you are experiencing a lot of pain at the moment, have you discussed this with your doctor?

We published a blog article on ‘pain management’ which contains helpful tips and information which you can read here: lupusuk.org.uk/pain-managem...

To read our factsheet on ‘LUPUS: The Joints and Muscles’, click here: lupusuk.org.uk/wp-content/u...

We published an article on our blog about 'coping with hair loss' which I hope you will find useful: lupusuk.org.uk/coping-with-...

We offer a free information pack which you can download or request here: lupusuk.org.uk/request-info...

Please keep us updated, wishing you all the best.

[Maggie000 in reply to Chanpreet_Walia]

Thank you so much for the information.

[leslieliesel]

xoxox I am so sorry...my Rheumy DX'd me with Discoid but has since changed her DX to subcutate(sp?) I am still new to Lupus life...Not that my skin was ever great, but oh how fragile it is now.... For me, the Hydroxychloroquine seems to be helping my joint pain..and I guess my skin has certainly been worse..but the fatigue.....I hope you find an answer xo

[Maggie000 in reply to leslieliesel]

Thank you for your reply x