flares: hi, i have mixed connective tissue disorder... - LUPUS UK

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rockchic profile image
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hi, i have mixed connective tissue disorder ie lupus and sjogrens, i also have arthritis of knee ,toe and jaw the latter of which has caused me terrible pain and distress for last 4 years , i seem to be having lupus or sjogrens flairs every 4 to 5 weeks i am on plaquenil 200mg reduced from 400 because of stomach upsets , i was just wondering if anyone else is having flairs this often it starts with terrible muscle pains like the worst flu you can imagine , terrible lethagy and fatigue but cant sleep all i can do is go to bed for a couple of days and rest after about 3 days i can just about start to function again although i am always achy terribly fatigued with dry sore eyes and mouth but having lupus its something i have to accept my doc thinks i have fibromyalgia as well now but i dont see my rhumy doc till feb also when i have these really bad flairs there is always blood in my urine , just wondering if anyone has any suggestions thanks.

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rockchic
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Sher78 profile image
Sher78

Flare can vary in severity & length as well as in how often they can occur, I'm currently in a 2 year flare (what a lucky pup I am!) as r a few of us on this site. Blood in the urine needs 2 b addressed, have they given a possible reason 4 this? Really feel 4 u honey but if Planq doesn't seem 2 b helping maybe it's not the right med 4 u & u need 2 try something else?

marypw profile image
marypw

Blood in urine should always be investigated. My rheumy found it and asked my GP to refer me to a nephrologist. My kidneys are OK but he then referred me to urology for a cystoscopy, which showed bladder inflammation, but nothing nasty

If your rheumy won't refer you, ask your GP to refer you. Can be lots of different causes.

A lot of people find Plaquenil helpful but it hasn't done much for me - can take up to a year to work though.

Good luck xx

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