Plaquenil has brought ANA, SED, C-Reactive down. I function-barely. I have more energy than before but still have brain fog, rashes, fatigue. Why?
How long have you been taking it, Roxy? I’m glad it helped with something, so far.
Depends on how long you have been taking- it can take several months to be fully effective - Plaquenil does not cure but rather is a DMARD- disease modifying drug It works by diminishing the severity of the illness and preventing catastrophic flares Many people take plaquenil so that a lower dose of other drugs is necessary to maintain control
That's good news that you are able to have better lab results without having to go on prednisone.
Some carefully targeted nutrition might be really helpful in raising your energy levels. I won't going to a long thing on your comment thread.
Unfortunately the things you're mentioning probably won't ever go away all the way. However, whatever medications you're on should aim to help you function better than "barely!" Maybe after Plaquenil is all the way on board and you still have intolerable symptoms, you might need more drugs :(
How long have you been on it? It takes around 6 months to start working, since it has to build up slowly. That is great news if it's helping some, and like Carla said it's hugely helpful to make lifestyle changes. The more you can avoid the heavier drugs the better, since they cause tons of their own problems, some of them long-term (like prednisone metabolic problems, toxicity from chemos, cancer risk from immunosuppressives...) Plaquenil is basically our only friendly drug (aside from eye toxicity and being kinda tough on your liver, but that's friendly by comparison!) that's wise to take long-term to prevent new flares even if you're in a stable remission (also, many people have said they feel worse if they go off it, not realizing it was helping keep them IN the remission in the first place!) People also say it helps most with joint pain and fatigue, but not so much with the other things. Brain fog is a reality of lupus no matter what drugs or how controlled... Happens to the best of us at the worst times it seems... For me cutting out gluten helped a lot with it! However, constant cognitive difficulty is a sign of a bigger problem that needs to be addressed with heavier intervention, so keep track and keep your doc informed.
As far as the labs, that's great if your body is showing less signs of active inflammation, but that doesn't correlate directly to symptoms most of the time. Your doctor needs to treat your symptoms, not just your labs, because you are a person who is ill, not a sheet of lab values! If they feel your disease isn't actively attacking and your problems now are lingering effects after the flare, they might not use immunosuppression, but instead anti-inflammatories. Those might help with rashes and remaining pain, but brain fog and fatigue are the hardest symptoms to treat in lupus... Exercise and diet can help a ton.
If you're having the fatigue and brain fog together in the same episodes (or just constantly for both), the fatigue might be originating in your brain. Not like imagining it, but in a concept called central fatigue where your muscles can literally do work fully but you have a sense of fatigue/tiredness (sleepiness is a brain feeling, not bodily sensation) and mental fatigue itself. It's the nature of fatigue in depression and fibro, but having it doesn't mean you are depressed, just having similar mechanisms of fatigue. This is the breed of fatigue I have, and my lupus mainly affects my brain so that makes some good sense. If it's really persistent with the brain fog more like cognitive impairment compared to your previous mental ability, definitely needs to get addressed medically! If it's just feeling foggy and fatigued... Welcome to the club, but at least if you pick out the healthy snacks and activities you can improve it. At least a little, maybe a lot! Also, accept and espouse the fact that 8-10hrs of sleep a night is your new normal requirement, not lazily oversleeping, and that you might really need 12+ during a flare. Getting the full sleep you need will help you be less fatigued during the hours you're awake!
Best wishes,
Brynn
I have been on plaquenil about 6 months. I definitely have more energy now. This past summer, I was so so tired that I was getting scared that I would not make it through a day at work. I have been back at work since September and overall am doing ok. I am still functioning with some degree of brain fog, but still better off than I had been prior to starting on plaquenil. I have some good days and then some not so good days.