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Lupus

(15 Posts)
ICantThinkOfAUsernameH Wed 29-Jul-15 17:08:32

Been diagnosed with lupus today and been told I most probably have rheumatoid arthritis. Seeing consultant within next couple weeks but just wondering what's the treatment? I should have written everything down but was just overwhelmed after finally getting a diagnosis!

Cocolepew Wed 29-Jul-15 17:12:43

I take Plaquenil, its the most common treatment.
It depends on the severity to what other treatment you might need.
I take steroids when I get pleurisy and hsve started on steroid injections every 6 months to try to stop the pleurisy starting.
I take naproxen for pain relief.

Cocolepew Wed 29-Jul-15 17:13:54

Oh and youmust stay out of the sun unless wearing factor 50.

PerspicaciaTick Wed 29-Jul-15 17:16:54

I was on Plaquenil too - it worked wonders to get my SLE under control, although I came off it when TTCing and so far haven't needed to go back on it.

Check out www.lupusuk.org.uk and www.nras.org.uk for lots of information and support.

Flossieflower01 Wed 29-Jul-15 17:23:55

I'm on hydroxychloroquine (plaquenil) and prednisolone steroids. I have to wear factor 50 every day and a large hat, spf 50 clothing or I'm in a lot of pain. I have to look after myself- take breaks when I need to etc or I end up in bed for days in pain. I also have codeine for pain and tramadol if it's really bad. Have you seen a rheumatologist? What did they prescribe?

ICantThinkOfAUsernameH Wed 29-Jul-15 21:52:05

Thank you for the advice . I'm not being started on anything until next week - there was some mention of injected steriods? Seeing rheumatologist next week. I'm on naproxen and codeine but do have tramadol (don't like taking it - knocks me out)

Cocolepew Wed 29-Jul-15 22:00:06

The steroid injection is a kenologue injection its to help inflammation without taking oral steriods regularly.
You get it in the bum smile

Good luck flowers

ICantThinkOfAUsernameH Wed 29-Jul-15 22:26:19

Thank you!
Not looking forward to the bum bit but needs must haha! ��

ziggyziggy Wed 29-Jul-15 23:13:19

hello lupus people... sorry to jump in your thread OP but I have been a bit paranoid about lupus lately, seem to have had something which was initially triggered by IPL (hair removal with UV light pulse) that set off the following, I was wondering if it rings similar to any of your symptoms

- melasma on face, skin colour changes
- nose sores - inflamed nostrils
- extremely tired, particularly at certain times in the day, comes and goes
- vague sore throat
- pale brown patches under arms
- wrinkly wrinkly skin
- dry frizzy hair and dry skin, esp on hands
- headaches and mental fog

it's not been terrible except for the first time a few months ago, it came back a couple of times since but in a fairly mild way. after the first instance the GP did some tests and we found out it wasn't thyroid, vit deficiency, diabetes etc. but as it passed after about a week, I put it down to stress and didn't go back, but as it seesm to come in waves since I am worrying it might be something like lupus.

Any ideas? I also get very tired in general even when I'm not having a wave of it, and have just put it down to childrearing a young toddler (and am LP) but am wondering if the general tiredness is linked to whatever this other thing is.

Might go to GP for more tests.

ziggyziggy Wed 29-Jul-15 23:13:58

also dizziness with the first bout - a lot of it.

Shosha1 Wed 29-Jul-15 23:35:37

Plaquenil here to, been taking it for 15 years although about a year ago felt it wasn't so effective.

Now also on Azathiopine as well which seems to be working well

Also take Etodolac and Iburofen
And Lanzoprazole to protect my stomach

Unfortunately the Lanzoprazole hasn't been working so well and had to have a Endoscopy last week as thought I was having a heart attack as had very bad chest pain.

Result back is that it's drug induced something or another in my oesophagus. So now another shake up of drugs to see what I can have instead. It will be trial and error to find out which one is causing the problem

Cocolepew Wed 29-Jul-15 23:36:15

The melamsa might be a malar rash or butterfly rash?
Yes to nose sores, sore throat, dry skin, and mental fog.
The fatigue with lupus is crushing. I wouldn't be able to stay awake snd sleep very, very heavy for hours.
Other common symptoms would be joint pain, muscle pain, thinning hair.

ICantThinkOfAUsernameH Thu 30-Jul-15 14:27:10

ziggyziggy those symptoms sound familiar to mine - especially the tiredness . I was diagnosed pernicious anemia (b12 defincancy) a few months ago and that's similar symptoms so worth having that checked . Hope you feel better soon

ziggyziggy Thu 30-Jul-15 15:35:10

thank you everyone, i will get checked at the doctors again...

i think as i have had a recurrence it is worth getting checked out. some of the symptoms were pretty strange and the fact that it seemed light activated was ringing alarm bells.

i also feel a bit 'other worldly' at times, I wonder if that is also a symptom? in turn this increases my stress and it all seems to cave in on me a bit.

and icantthink - I will check out the b12 too! :-)

ICantThinkOfAUsernameH Thu 30-Jul-15 16:27:33

Good luck smile

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