Hi all, I joined this site last night after being recommended by a member I met at a Lupus Coffee Morning at Basildon Hospital. I've a feeling it's going to be the best thing I've done in a while. I've only resently been diagnosed with SLE after having one too many cortisone injections and then asking why, why at the grand age of 'nearly' 50 am I having these problems. Tests showed raised ANA's but little else. I then ended up in a Spanish hospital after visiting a friend there for a couple of days. It was horrendous but at least I now know I'm sun sensitive. deep joy! Long story, short, two hospital stays and a few Rhuemy appointments later I'm on Hydroxychloroquine, steroids, Amitriptyline and Omeprazole and Calceos. My biggest problem, the thing that upsets me most is that my GP doesn't seem to understand. When I tell her about my cognitive problems, she just smiles and says "join the club" or "it happens as we get older" like I'll get used to it. I won't, I hate it. I feel like I'm an intelligent woman masquerading as an idiot. I stutter and get stuck mid sentence. I've now stopped joining in conversations as I make myself look stupid.......and pause.......rant over!
Can I ask? Does anyone on here know about how long these 'flares' last? Because I appear to be in a steady, constant one that doesn't seem to want to go away. It's been seven months now and I'm nearly exactly the same as when I started. I'm lucky in that my employer has been fantastic so far, but it can go on indefinitely.
I look forward to anybody's thoughts.
Alison
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Alison-Brown
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Hi Alison, and welcome. Hope you find some of the answers to your questions through this forum. Lots of very knowledgeable people who have helped me since I joined in July.
This "brain-fog" that you describe is, as far as I am aware, very common to us. I have had it since probably March or April. Bit of a nightmare isn't it. My brain knows what I want to say but my lips do not form the words. Can't multitask at all! If I try I get nothing done cos I can't remember what I was supposed to be doing. I have found all sorts of things in odd places. I've lost numerous reading glasses cos I put them down and walk off without them.
I am only just now stating hydroxychloroquine this week, so don't know what kind of response I will have. But, hope its good.
I too keep getting recurrent chest infections. On my 7th course of abs since January. Xrays normal, lung function test normal, but when I can't breathe sats drop to 90 or so. A&E doctors baffled. I really sympathise with you being on oxygen at such a young age. It must be so debilitating for you and scary.
Sorry cant be much comfort but I can send you virtual gentle hugs to help you on you way.
It sounds like your lupus is not properly controlled - not only the fact that you're in a continuous flare but also the cognitive impairment. We are all having some residual symptoms all the time because the medication can't be given at high doses to stop the immune system, for obvious reasons.
Hydroxy and steroids only help so far, you might want to discuss the issue of adding immunosuppressants with your rheumatologist. If she doesn't agree, tell her that you'd like to come off the steroids soon but still be able to live life. I'm on mycophenolate mofetil (brand name Cellcept) and it is the most "friendly" one in respect of side effects. The downside is that some doctors seem to think that it is only used for lupus nephritis/kidneys but that's not the case.
I'm on 1g per day of Cellcept and I've never been told to stop it even if battling infection. My rheumatologist believes that the dose is not sufficient to impair the immune system to the extent that it can't fight on its own. The only caveat to this is the full blood count - as long as there are enough white cells then there's no need to come off the immunosuppressant.
What I mean by 'properly controlled' doesn't amount to what others call 'remission'.
Here's what I mean - a stable state in which all of the critical symptoms have disappeared and in which the moderate/minor ones are either few and far between, or if persistent, they occur at levels so low as to be able to carry on with life as if only slightly disabled.
For me this 'definition' helps me assess whether I'm in a flare. Usually a flare starts innocuously - maybe a slight increase in the pain level that I tend to put down to doing too much. Then a single finger joint might start hurting for a day, then stop the next day. A few days later I might start having migraines, which I might put down to the weather. Then my left toe starts twitching intermittently for a short while. Or my ear starts itching. Then I wake up with more pronounced pain in my hips. By now I realise that something had been brewing, so I'm bracing myself, although I'm still hoping that increasing the amount of rest would help calm it down. Then the night sweats start. By now the symptom diary page is full. I compare it with the page 2 weeks before where there were probably only 3 minor symptoms and write down FLARE!. Time to decide if I up the steroids.
Hi alison...i can totally relate....i have almost given up talking. I had to stop in mid sentence earlier when i was describing something and made up a word all by myself that was a combination of 3 words in my head..!!!!! I hate it. My family laughs at me and i am trying my hardest to see it as funny rather than be hard on myself, which i am all the time. Perfectionist in me. I hate that too. We were going to write a book with all these words. I need a tape recorder when it happens. My kids are astonished and not surprised anymore. My husband thinks its cute. I dont. I am still working on accepting this. Hope you can come to terms with it someday too. Not easy.
Everything u describe is a mirror image of myself, it's quite amazing, I cud have written yur post! So, what I have dun is simply accepted my condition and started to work with it rather than hate it, we have it and it's not going away. I've changed my diet, I rarely drink, I go to the gym 2 to 3 times a week coz mentally it makes me feel better, like I'm in control. My life is different but I realise I'm enjoying different things, it's tough but if u take a different perspective on this there r positives 2 b had. Like u, I hate this but mentally I've got my head around it, u simply can't fight something that's not going away so don't waste time trying, find all the things u can do and enjoy them! Hope this helps, good luck! 😃
Four years in & apart from extreme skin lesions I'm pretty much the same. Maybe a little toned down. Extreme exhaustion, massive sore joints, enlarged lymph glands, Mental 'slowness' & confusion. Total inability to multi task blah blah. On CellCept 2000mg Pred 5mg (after long taper from 80mg). Pain meds only in really dire circumstances. I hope all goes better for you. I'm not in remission & now I'm getting chest infections that take months to clear. Kaz x
Welcome to the Forum. I'm sure you'll find it helpful. Sorry your in such a long flare, sometimes it just won't go away!. Just wondering what dose of steroid are you on?. Has it been increased for a short time to help symptoms and then reduced?. This can be a good way to treat flares. Then, if you need these short courses a lot your main Lupus treatment needs changing or adjusting by your Rheumy. Do you see him soon?. Hope you improve. X
My Rheumy put me on 30mg for a week then reduce it to 20mg for 4 weeks. Another week to go and I'm reducing to 15mg for another 4 weeks and so on. I see her again at the end of Nov.
I don't much like the side effects. I feel like I'm buzzing all the time.
Some times I feel the meds make me feel as ill as the illness.
Steroids are such a double-edged treatment for us!. When you get to 12 mg and below will you reduce more slowly as your more likely to flare at those doses. Good you've got a Rheumy appt soon. I agree with you about buzzing, I'm on a higher dose for a flare and can't sleep properly. Horrible!. Good luck for appt, let us know how it goes. X
Hi Alison, nice to speak to you again and glad to see you are getting such good support on the forum. I think for me the first fog was the worst and longest to get out of. Using that fifteen minutes of changing activity did work for me but I had to be strict. Rest meant rest. Try switching from mental to physical activities in short bursts. Don't engage in too lengthy conversation it is tirying. But you will improve slowly. If it helps this took nearly ten minutes to write as I'm finding spelling difficult today. God bless autotype. Also do you have a UV cover on your screen.
Old screens omitted UV newer flat screens shouldn't but some people with sun allergies have still had reactions sitting in front of them. Strip lights are also a problem. I believe that energy saving bulbs are worse than old ones. Maybe someone could help on this?
I really don't want to write this right now but i had these symptoms for 7 years they treated for epilepsy and i lost my car and my life, 3 months ago i was diagnosed with sle and sjogrens whilst relieved i was upset at the same time all those years had been wasted and i lost everything, keep your chin up like i am now doing it will get better i cannot say how long flares last as i said i was on the wrong meds hope this helps julie
So sorry to hear that Julie, I can't imagine what a bitter pill that must be for you. I hope that (somehow) you are able to move on & make the most of life. Hopefully you may have improvements now you have an accurate DX. Best Wishes to you. Kaz x
I think I may have got off lightly compared to some I have heard about. While I think I must have had this for longer than I first thought, my diagnoses didn't take too long really.
Reading the comments is like reading a story of my own symptoms, its reassuring yet saddening that SLE/Fibro can have such a huge impact on mental ability. My memory function is a big problem these days, such much so I've had MRI and blood flow scans to rule out dementia and stroke.
Going from an independent, active woman, with a good job and many interests to isolation, dependence, and sedentary lifestyle in five years is beyond sadness.
My heart goes out to you Alison and everyone on this site as well as myself; this brain fog can be very cruel.
Thanks for all the postings. I was diagnosed with mild cognitive impairment over a year ago ( put down to depression). Now I have the lupus diagnosis the periods of brain fog make sense. Thanks too for the info on spotting flares once I get to, I hope, sweetish spot of getting this #%€%# sorted.
Gone from super active independent, self reliant professional to whispy little wreck. Time and unforeseen circumstances happen to all .....
I am right there with you Alison when it comes to stuttering. It's difficult for me too as I am a telephone triage nurse and I feel like I'm a blubbering idiot sometimes. I just keep on trudging through though. Welcome to the forum and gentle hugs from me to you.
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