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Anyone know anything about Lupus?

6 replies

fleshmarketclose · 04/04/2018 20:42

Dd has a diagnosis of Ankylosing Spondylosis. It was clear from the MRI and so don't doubt that that is the correct one. However she has other symptoms that recur so the uveitis recurs every twelve weeks, GP suspected she had Reynauds as she has terrible chilblains and poor circulation, then she's had unexplained fevers, awful tiredness and ulcers and alopecia and now she has the butterfly rash on her face so GP has ordered blood tests for Lupus.
Does anyone else have experience of Lupus and does it co exist with AS regularly? What can dd expect for treatment if she does have it? She had a terrible reaction to immunosuppressants so suspect that is off the cards for now at least.

OP posts:
Cocolepew · 04/04/2018 20:49

I have Lupus, I take hydroxychloroquine which is an anti malaria medication. Is AS an auto immune disease? They all can co-exsist.
When having a flare I take steroids (I get pleurisy when flaring) but don't need them constantly.
The treatment will depend on the severity of the Lupus.

fleshmarketclose · 04/04/2018 20:57

Yes AS is an auto immune disease. I'm just so sad for her tbh, she is constantly unwell. The AS causes awful pain and so she's on lots of pain medications,then she has treatment for the Reynauds and physio but it takes over her life and the fatigue means that outside of work she has no energy.
She is upset about the rash on her face can I ask is there anything to treat that? It just seems a lot for a young person to cope with I suppose.

OP posts:
applesandpears56 · 04/04/2018 21:11

She should be under the care of a specialist not the gp - a rheumatologist probably?

Cocolepew · 04/04/2018 21:12

La Roche Posay face cream is recommended on a fb lupus group I'm in. Also she will need a factor 50 suncream, it is recommended to stay out if the sun, therefore she should take vitamin D3.
Starting the medication was a lifesaver for the fatigue, I also get kenalogue injections every 6 months (supposed to anyway Hmm).
Did you know there is an autoimmune topic? You might get more answers on there Smile

fleshmarketclose · 04/04/2018 21:32

Yes she is under the care of the rheumatologist and an opthalmologist because of her eyes. Would the rheumatologist oversee the treatment for Lupus as well? I will buy her the cream mentioned and I will sort out the sun cream as well. Of course she may not even have Lupus GP just said she ticks a lot of the boxes and would order blood tests.

OP posts:
Cocolepew · 04/04/2018 21:42

Yes its a rheumatologist I'm under.
Just be aware the bloods could be negative, mine are always clear, I was diagnosed on symptons.
I hope she starts to feel better soon.
I actually prefer the sun, the heat helps my joints, I do get a rash if I don't cover up though.

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