Been battling constant flares and brain fog trying to find a damn med that does something useful (just started Tremfya last month, hoping it works as I’ve only got Rinvoq left before I’m out of options) and I’m just tired of not being able to think.
I work as an instructional designer - but basically I write scripts for aviation training and I cannot for the life of me understand the topic I’m working on right now (airflow aerodynamics at high speed/high altitude). Physics wasn’t my best subject in school either but I know if my inflammation was clear and I wasn’t brain foggy I’d be able to handle this just fine.
I just worry that I’m not even 40 and this stupid farking disease is going to steal my cognitive function and ability to survive (because it’s not like I can do a manual labor job! Haha). I have no back up. No stable spouse with a decent job. No family to help me out and of course government safety nets are not really something to rely on (yay merica ). It’s not like I’m even in danger of losing my job but I still worry about it.
Anyway, just needed to yell about it to folks who might kind of understand. If you have something that helped your brain fog lmk. I’m going to go make another cup of coffee and see if I can jump start le ol bring mush.
Apart from effective treatment (and I can hear you’re already doing your most on that), the only thing that helped my brain fog was to accept I had less usable hours in a day than everyone else, and design a flexible job for myself (through my own consulting company), work at lot less hours (but for a higher hourly rate of pay), and sleep more.
All that wasn’t an overnight thing, and I worked with reduced income for some time while training myself in the type of specialist work that I could charge better rates for. It took around 3 years, but made a massive difference to my quality of life and feeling of capability at work. When I only had to do 3-4 hours per day, I could be really focussed and got things done 3 times faster anyway. And with more sleep and rest, the disease was much more manageable.
I also don’t have spouse or other second income fall back, so it was a risk, but our safety nets, though hard to access, are a little better here I think.
For a temporary boost, V was the best for me. But coffee. Still like my coffee!
Sorry to hear, I know the frustration of brain fog as it just robs one of all usual competency. I also do a lot of writing and on those days when the fog rolls in I feel useless. I can only tell you what has helped me:
I am on Rinvoq but struggled with the fog until I dropped MTX. It made a huge difference for me
Good sleep and more good sleep. I have the luxury of taking a 30-40 minute power nap whenever I want and rather than pushing through a wave of fog, I close my eyes and accept my need to rest. I usually wake up pretty alive and more brain energy. I even time my naps strategically when the caffein that might be in me is low. Having coffee or strong tea after my nap helps
I’m starting to use my screen time for more productive work than useless noodling…too much screen time pecking away at the keys and staring at a screen just seems to rob me of attentiveness when I need it most…hard to explain but too much screen time just dulls me when I need my brain firing on all cylinders.
When brain fog is bad I force myself to do a quick aerobic something (jumping jacks, up and down the stairs until my heart rate goes up, a walk…doesn’t take much these days!) the increased oxygen helps wake me up
Just ignore the above if not applicable to you…Peace!
Oh and when all else fails…eat chocolate!
Yeah it’s been rough. Dropped the mtx last year or the year before (can’t remember) and am trying to get a treatment that works (unfortunately my immune system keeps making antibodies to everything). I sleep about 10 hrs a night and don’t nap well (except apparently my Tremfya gives me extra fatigue and I napped every day for a week after my first shot). Usually when I get brain fog it’s stubborn and won’t go away - today’s was pretty bad until around lunch. I try to get up occasionally and wander the house (thankfully still on WFH, and hoping to make it permanent) which can help but not a lot and I’m flaring or just existing is painful now so I can barely walk anyway, let alone do anything that’ll wake me up (my feet and knees are balloons and now my ankles too - if I wobble just right I move forward, lol).
I started Tremfya three months ago. It seems to be helping more than the previous five.
I a beginning to think most of my brain fog is from pain and frustration. When I start feeling down and defeated, the brain fog gets worse. The fatigue doesn’t help with it either,
Im on Rinvoq and getting better and better the longer I take it. No biolgical has given me the relief I am now experiencing.
Tremfya gave me minimal relief.
I understand that as it is a small molecule JAK inhibitor, Rinvoq will not cause your body to produce antibodies against it.
Rinvoq is my next try. Unfortunately it’s similar to xeljanz and I did not do well on xeljanz so I’m not holding out to much hope for Rinvoq. I’m glad it’s working well for you though!
Sorry about your current problems. Have you tried adding turmeric to your current meds? I was Leary skeptical when it was recommended to me but it has helped lessen to severity of my flares. I still get them but have less crippling days. Is it possible for you to have a big break at work and somewhere you could lay down for an hour. 30 minute naps can help. My boss let me do that on bad days. I’m currently on Cosyntex and like you running out of med options. I don’t like it but I have to ask for prednisone 2-3 times a year when I simply can’t function at any level. It helps. Will keep you in my thoughts and sending positive energy your way.
My doctor prescribed Modifinil to help with the brain fog and exhaustion. It lasts about 8 hours so it gets me through the work day at least. Might be worth asking about.
I hear you! Brain fog is the second hardest issue I deal with, as most people here do as well. I homeschool my son and some days I feel like I am staring at a page drooling while I can’t for the life of me remember what we were doing! Haha. I don’t mean to make light of it but it is what it is. I have learned that I am not immortal. I need rest and breaks. I also need to give myself the permission to say, I just can’t today, and let that be alright. It is frustrating but that is what comes with this disease.
I am on Tremfya as well. Goodness I dont know how long it has been. Maybe a year? Maybe less than but closer to a year? I don’t know. I do like it but I also have to take MTX to fill the gap that Tremfya doesn’t cover. Together I have a good handle on my PsA. It took well past the first 8 week dose before I saw some real change.
I have a month and a half before I reach my first 8 week dose, so good to know I may have to hang in there a bit I am feeling moderately better comparatively but still experiencing a lot of pain and swelling. It’s just not pushing beyond my pain tolerance level daily, so I’ll take it for now. I had to drop the mtx and am now on a small dose of sulfasalazine (I did not tolerate a 2x daily dose so I dropped back down to 1x. No idea if it is actually doing anything, lol).
I also started 5,000ui of vitamin d3 on the suggestion of my Rheum, and haven’t had any terrible brain fog days since. It also has only been like a week so we’ll see how it goes. It’s the worst, imo. I can deal with pain but feeling like someone mashed my brains up like potatoes is just awful. Lol.
For me just the exhaustion that comes from the anxiety of knowing what is coming in terms of pain from daily activity, is like having a bad cloud over you at all times. If you are on MTX try the injections, that sleepiness after taking it for the most part goes away. Knowing things will hurt is mentally exhausting.
I had heart failure on Anti-TNF, failed everything for a decade, Tremfya changed my life. There is not miracle cure that is one size fits all. I was your age when it I first having symptoms, and I never thought I would leave any semblance of a normal life again, I just gave up. I took one last chance, and I can not tell you how grateful my current meds are working.
I just entered the SSDI ticket to work program, I have lost a lot, but I; am so grateful for what I know have
I;am glad I didn’t give up, I was right at that edge.
). It’s not like I’m even in danger of losing my job but I still worry about it.
I am feeling moderately better comparatively but still experiencing a lot of pain and swelling. It’s just not pushing beyond my pain tolerance level daily, so I’ll take it for now. I had to drop the mtx and am now on a small dose of sulfasalazine (I did not tolerate a 2x daily dose so I dropped back down to 1x. No idea if it is actually doing anything, lol).