Mgb123

[Dickenson]

Hi everyone,

I was diagnosed about 3yrs ago w/ Lupus. Rheumy immediately started me on plaquenil, aspirin, for joint pain, aches,, fatigue, gastro issues, etc. then 6mos. later started on Depakote for my lupus fog, or migraines. Then in April of this yr. my symptoms started to return, like joint pain, aches, headaches/ head pressure, also gastritis & Gerd. Has anyone else experienced something like this? Also suffer from cognitive issues like memory, thinking, speaking (wrong words come out), comprehension & some stuttering. I'm at my wit's end. Any responses would be nice.

[Barnclown]

👋👋👋👋hello dickenson & welcome

Sounds to me as if you & your lupus consultant need to think again about your treatment plan. Perhaps a bit of my story will be useful:

Am 5 years into the diagnosis & treatment process, but it's turned out my lupus is infant onset. I too have coped with migraine & neuro-cerebral symptoms inc cognitive impairment for decades. Here is how my lupus clinic & I have managed to damp down my symptoms:

my upper & lower GI conditions seem similar to yours & have been investigated & diagnosed at length over the decades...I cope via a combo of lifestyle management, the usual meds (PPIs, domperidone, movicol etc)

Mefenamic acid taken at first hints of migraine is vvv effective in my case

Otherwise: I was started on daily hydroxy. After 2 years we realised hydroxy helped a lot but didn't damp my neuro-cog symptoms inc cog impairment & fatigue down enough, so we tried adding low dose 4 week prednisolone tapers, which really improved my stamina & resilience. Now I wish I'd been quicker to appeal to my consultant sooner for more help , but I was reluctant to add on more pills 😉. These days, consultants avoid resorting to daily high dose pred (except in cases where inflammatory process is significantly flaring) so we trialled adding daily mycophenolate alongside hydroxy which continues to greatly reduce my fatigue with no apparent side effects. Recently we also added in daily low dose pred. This cocktail is working v well for me... I'm 62 & 5 years into Lupus treatment am feeling more stamina & resilience + less cog imp + fatigue then I have since my early 20s

lifestyle management continues to be key to minimising my migraine, neuro-cog & GI issues etc...I am constantly pacing myself, rationing activity, sidestepping stressful situations etc. This is second nature to me now & makes all the diff...afternoon siestas especially 😉

Take care...please let us know how things go

🍀🍀🍀🍀 coco

PS the Lupus UK website has lots of good info including publications by topic for downloading:

lupusuk.org.uk/publications/