subcutaneous Lupas? Anyone else out there? - LUPUS UK

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subcutaneous Lupas? Anyone else out there?

yolandon profile image
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this is the first time ive posted on this site, ive replied to a few posts tho, I have Sub LE and have recently had a second outbreak after being diagnosed with Lupas in December.I think ive undertaken too much and am doing a mentorship course and whereas last time I felt well, this time time soo fatigued. My BP is thru the roof at 160/112. My GP has liased with my consultant and changed me from lisinopril to atenolol, which i picked up today, very reluctant to change my meds.. Anyone else in the same situation? Any feedback would be good.Any one else on Atenolol?

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yolandon
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kittykat68 profile image
kittykat68

meeeee, yep i have scle with a crossover of sle symptons so basically skin and organs, when i went into my (wot i call major 1st flare) it went from september 2009 up to november 2010 it would calm down for a few weeks bt as soon as i came off steriods it would flare back up, it was a case of try which med suited me at one time i was on steriods/antimalarias and methotrexate, my dermy said i had to wean my self off of the hydrox because i am on too many meds??? ill list mine if it helps r u in the uk?since weaning myself off, my skin constantly itches and i have a few hives come and go but ive got to big bald patches at the top off my head which i associate to a flare up so i think i am going it one i ache and hurt in every joint and fingers/knuckle feel like ive broke them , however i think my skin is going to stay calm because of the metho its just all the other sysmtens and autoimmune diseases that go along with lupus :( hope ive helped

yolandon profile image
yolandon in reply to kittykat68

Methotrexate has been a suggestion however im loathe to go on that im on hydoxychloraquine 200mg BD, messing around with my meds is scaring me and ive gone 2 days not taking any HTN meds...I know thats daft cos im a nurse.Lupas seems to be dormant atm but obviously apparent cos you wear it... The loratadine doesnt seem to help even tho im taking that BD too and in constantly scratching.....No way am I going back on the steroids, im no help to myself really am I? fortunately I only have joint pain in my left hip and elbow. How do u find the metho? out of interest...

Melinda profile image
Melinda

I have Subacute cutaneous Lupus. I take 400 mg of Hydroxychloroquine and 5mg of Prednisolone. I have never heard of Atenolol. There was a suggestion I take Imuran, which is a steroid sparing drug, but i'm on such a small dose of steroid and it seems to be keeping it under control at the moment.

SCLE tends to wax and wane. It can be very distressing and inconvenient as you can't go out in the sun without slapping a load of suncream on any exposed parts of your body. Finding the right clothes in the summer is an absolute nightmare. Hopefully when you get the right combination of medication and it will keep it under control.

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