I was hoping someone may be able to give me some advice or at least let me know if they have also suffered from the same symptoms that i describe below:
I am getting used to recognising my lupus flares and have recently started mycophenolate and have been steadily increasing the dose, after my bloods have been checked. I also take 15 mg pred and placquenil. I have also had an infection and am on an antibiotic which i finish tomorrow. I also have cryoglobulinemia vasculitis. Last night i wasn't feeling right and my boyfriend commented that all the colour had gone from my face, i was grey. I felt awful, couoldn't stand without dizzy, felt dazed and confused, tried to wash hands in bathroom by picking up toilet roll instead of the hand liquid, everything seems much harder to do. Had terrible headache, neck pain (i get evening neck pain anyway when muscles are tired from weight of my head i think), had much more weakness than i have had previously and just didn't feel right. Also eye pain. I went to bed but felt so weak. Today i am the same, tried a phone call to my brother but struggled to make sense of the conversation and follow what we were saying and slurry then the head pain and some tingling in my tongue started and numbness, like when you go to the dentist and they numb everything, which transferred down to the left side of my face. Temperature is normal, really concentrating here to write as quite woozy but feel most peculiar. if anyone can please give me some advice that would be much appreciated. If i get worse i will go to the hospital.
Thank you
Written by
helsnz34
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Definitely go to hospital now and get checked out rather than waiting. It might be as a result of your infection but I have always gone to hospital if I have odd symptoms such as numbness and weakness.
Aww Hels, you poor thing, hugs chica. What a rough time you're having. Bearing in mind all the drugs you're presently taking, I couldn't say what's causing you to feel so awful but does sound like a flare with classical lupus "brain fog". Some a/biotics, though, can really knock you for a six. Yes, I have numbness and tingling in one side of my face during bad flares. The correct term is "parasthesia". It was checked out by a Neurologist many years ago who told me it's not common in those with SLE but not unheard-of and known to be linked to inflammation in the neck or head. It's actually quite benign (as time has proven in my case) so - alarming though I know it must be - I wouldn't attach too much importance to it. That being said, I think you should ring your GP's surgery and maybe be seen this weekend by their out of hours service as you don't sound at all well. May I also suggest you take a course of multi-vits and minerals as you're likely also very run-down post infection - I swear by Centrum. Don't take it all the time but it does perk me up when needs be. Hope that helps and I wish you better soon. Do let us know how you get on! oxo
Go to A&E, just to be on the safe side, they'll check heart, lungs, etc. it takes 4 hours from the moment you get to the hospital, by the time all blood tests, X-rays, etc are done, but is worth it.
hello, thanks for the support and advice, after a sleep and painkillers I feel but more with it just have to move slowly as dizzy on standing or moving my head. I will get checked out if symptoms persist or worsen. I am back at hospital soon so will discuss with the rheumy's also. All a bit scary but tried to relax and not panic. You know when you get so used to feeling poorly it is hard to tell when something's really wrong. I had pneumonia in nov and didn't go to dr sooner than I should as thought it was the lupus with a bad cough! I've had lupus a year now but its still tricky isn't it to know when to worry and when to ride it out.
Glad to hear you're feeling slighty better! I would say it takes at least two years to properly get your head round and begin learning how best to manage lupus Hels - it's an on-going education in fact and, yes, very difficult to distinguish between the disease and, say, infections. I wish you better soon! x
Hi Karen, feeling a little better though last night was rough with other symptoms of chills, stomach swollen like a football and waves of sharp pains the same as I get in my joints, shaky legs, dark circles under eyes, photosensitive really bad but temperature was fine. I have a specialist lupus nurse I can call so will phone her Monday morning. I haven't had a sudden flare like this before back at addenbrookes hospital, Cambridge 25 jan anyway. A day before I so got a nasty vasculitis outbreak on my arms and legs, the pupura was itchy and I looked like I'd been attacked by Freddy crugger! perhaps that was the start of the flare. My compliments have shot up since being on mycophenolate and my good days I was feeling stronger so I just don't get it was expecting to be getting better but I guess that's the nature of the unpredictability of lupus which we all have to learn to deal with day to day x
Would think that if you have purpura, headache, stiff neck and photosensitivity you need to see someone asap and get checked out to be on the safe side. If it was me think I would phone the surgery's out of hours service today and ask to speak with the doc there and tell him your symptoms. They will normally call you back anyway.The problem with us all is that sometimes we have so much going on at the same time, it is so hard to differentiate what is part of Lupus or not. Hope you feel much better soon and take care.
Could b something 2 do with the combination of meds u're on, antibiotics can push a lot of things out. I would go c some1 ASAP though honey, not a good idea 2 leave it.
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I would say it takes at least two years to properly get your head round and begin learning how best to manage lupus Hels - it's an on-going education in fact and, yes, very difficult to distinguish between the disease and, say, infections. I wish you better soon! x
back at addenbrookes hospital, Cambridge 25 jan anyway. A day before I so got a nasty vasculitis outbreak on my arms and legs, the pupura was itchy and I looked like I'd been attacked by Freddy crugger! perhaps that was the start of the flare. My compliments have shot up since being on mycophenolate and my good days I was feeling stronger so I just don't get it was expecting to be getting better but I guess that's the nature of the unpredictability of lupus which we all have to learn to deal with day to day x
Should I go to A&E ?
Do I have Lupus? 
hello all
Just putting it out there again 
Very deflated ☹️☹️☹️
